Cyclosporin
Question:
> Does anybody have any first hand knowledge of Cyclosporin? > After many years of non response, my Derm has suggested that this may be the > "last knot in the rope." He has offered many reasearch sites and papers on > the subject. Any response would be appreciated befor I just "blow away" in a > cloud of flakes… > Irv—>in Alabama
I am of the belief that if your psoriasis is bad enough give anything a go although I constantly have people telling me there is no way they would take a drug like this but what other choice do I have. I have now been on cyclosporine for 3 and a half years – much longer than recommended but after 34 years of trying and retrying everything else available with no relief I am willing to take the consequences. I have never in these 34 years had a remission, it has just got worse and worse but find that cyclosporine at least lets me live a more normal life. I am by no means clear and find cyclosporine does not work from my neck up but the many spots still left on my body and quite flat and most of the time don’t cause me too much discomfort. I could go on a higher dose which would help but could cause problems, I take 250mg a day and find any lower than this has no effect. Side effects so far have been minimal – increased facial hair (not nice) high cholesterol which is treated with drugs. Needless to say I am very interested in the new trial drugs but these unfortunately don’t seem to be tested in Sydney, Australia but I enjoy reading about them on this newsgroup – please keep the information coming. Regards Pat
Response:
Irv, I’m sorry to hear you are having a hard time getting this under control. Please let know what you decide to do and how you get on. You are one of the most kind posters to grace this group. * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * The fastest and easiest way to search and participate in Usenet – Free!
Response:
Hi Irv, I don’t have any first hand knowledge about Cyclosporin, but I do have several friends who have had very good help from it. A few months ago my derm and I did consider a change to Cyclosporin for me, but we ended up chosing to continue MTX treatment. The 15th this month I had been on it for three years. I am going to have an ultrasound of the liver and possibly a scintigraphy too, instead of a liver biopsy (because of my increased risk of problems with the test because of the connective tissue disorder EDS). I wish you the best of luck – hope you find some relief soon!!!
Response:
A fellow sufferer who had bad psoriasis, 20% coverage in very large plaques, cleared all plaques in 2 weeks and the redness is now disappearing. There are side effects to worry about I believe and also having to avoid the sun might be an issue. Why is there no risk-free cure? Charles – Hide quoted text — Show quoted text – > Does anybody have any first hand knowledge of Cyclosporin? > After many years of non response, my Derm has suggested that this may be the > "last knot in the rope." He has offered many reasearch sites and papers on > the subject. Any response would be appreciated befor I just "blow away" in a > cloud of flakes… > Irv—>in Alabama
Response:
Hi! I too am going to start cyclosporin this week-maybe we can be pen-pals! I have been on mtx for almost 2 years, and recently weened off it for PUVA, but the PUVA made me too sick for words, so my doctor feels "rotational therapy" is the best thing for me. I just wish it would be gone- in just 2 weeks of no treatment my P is back! Good luck to you. Loren
Response:
Does anybody have any first hand knowledge of Cyclosporin? After many years of non response, my Derm has suggested that this may be the "last knot in the rope." He has offered many reasearch sites and papers on the subject. Any response would be appreciated befor I just "blow away" in a cloud of flakes… Irv—>in Alabama
Response:
>Does anybody have any first hand knowledge of Cyclosporin?
<snip> I have a fairly liberal derm when it comes to P treatment. He set me on a 30 day course of cyclospoin based on early research. It helped clear me up some and was followed by PUVA which always gets me in shape for the summer. I have since participated in a study of a drug in the same family and found my skin became quite dry and brittle. It was very unpleasant. If your derm is willing to try it, I’d say go for it. The only side effect I had was a bit of sleepwalking that amused the wife and kids! Respectfully; MrBill
Response:
>Does anybody have any first hand knowledge of Cyclosporin? >After many years of non response, my Derm has suggested that this may be the >"last knot in the rope." He has offered many reasearch sites and papers on >the subject. Any response would be appreciated befor I just "blow away" in a >cloud of flakes… >Irv—>in Alabama
Irv Don’t have any info on Cyclosporine, but I can really understand your position. After so much time the risk for relief factor comes into play. Whatever your choice you’ve got my support and I hope it works out the best for you. tim
Response:
>Does anybody have any first hand knowledge of Cyclosporin? >After many years of non response, my Derm has suggested that this may be the >"last knot in the rope." He has offered many reasearch sites and papers on >the subject. Any response would be appreciated befor I just "blow away" in a >cloud of flakes… >Irv—>in Alabama
I was on it for 5 months…You need regular bloods as this can damage your Kidneys. My bloods were OK throughout. I hab no side effects although some people do get them. It cleared my P completely in 3 weeks (I was on 200mg daily), but my the middle of the 4th month lesions started rerurning. As there is a risk of lymphoid cancer with prolonged use of this drug (over 12 months) we decided to stop treatment. My P returned with avengence within 2 weeks! After a year of UVB/topicals I have now gone onto MTX. — Dave Bentley
Response:
>Hi Folks, >Just out of interest there was a short article on cyclosporin research >in the Financial Times (UK) of Thursday 11 Feb. A Japanese group has >found higher tumour incidence in transplant patients using cyclosporin. >I don’t know if this research is common knowledge. >Unfortunately the article does not appear on their website.
Cyclosporin works by destroying T-cells, and it can be very effective. In my case, it was so effective, it caused squamous cell carcinomas (10 !) which all had to be excised. I don’t think it’s the drug they hoped it would be. My brother-in-law (geneticist) tells me there is a new treatment from a company called Biogen ??? Steve.
Response:
> I read in this weeks NY Times that if you had an undiagnosed cancer, > cyclosporin would actually accelerate the growth of the cancer cells or tumor. > This is scary news. I would imagine that women or men with cancer history in > their families would want to think hard about using cyclosporin.
As an extension to that warning, cyclosporin might cause serious problems for anyone who is at risk for cancer, like anyone with a history of PUVA. Don’t expect your derm to realize this could be a problem. http://www.pinch.com/skinny?cyclosporin+puva+carcin* PUVA is probably the main worry for a psoriatic. UVB isn’t as likely to be a problem, from what I’ve read. Other carcinogens are Grenz Rays, (soft X-rays,) arsenic, and even coal tar (especially around the groin). In another thread, Pete was asking for suggestions tht his dad might use after years of PUVA. I seem to recall a recommendation of retinoids as being much safer than cyclosporin. I don’t think the immunosupressive warning applies to methotrexate, since it is used to treat lymphoma. Better to ask your doctor about this. It’s just off the top of my head. — Ed "is there an oncologist in the house?" Anderson
Response:
Hi Folks, Just out of interest there was a short article on cyclosporin research in the Financial Times (UK) of Thursday 11 Feb. A Japanese group has found higher tumour incidence in transplant patients using cyclosporin. I don’t know if this research is common knowledge. Unfortunately the article does not appear on their website.
Response:
I read in this weeks NY Times that if you had an undiagnosed cancer, cyclosporin would actually accelerate the growth of the cancer cells or tumor. This is scary news. I would imagine that women or men with cancer history in their families would want to think hard about using cyclosporin. Michelle
Response:
Well knon that powerful immune suppressants increase risk of tumors. It’s called risk vs benefit. J OShea
Response:
> Hi Folks, > Just out of interest there was a short article on cyclosporin research > in the Financial Times (UK) of Thursday 11 Feb. A Japanese group has > found higher tumour incidence in transplant patients using cyclosporin. > I don’t know if this research is common knowledge.
We know for sure that HIGH dosages of Cyclosporin could be a good trigger for cancer ( lymphoma above all ). The problem is of minor concern for the dosages used treating P and PA ( 3 – 6 mg / Kg ). Anyway we need some more studies about. Oscar from Italy
Response:
>Be very careful! These drugs are not intended to be monitored by anyone who >is >not a specialist in immune system suppressant drugs. You could end up on >dialysis!
Ava is right. Neoral (Cyclosporin) is a very risky drug and permanent damage to liver and kidneys can result IF NOT MONITORED PROPERLY. Irv
Response:
> Very briefly, Cyclosporin is used as an anti-rejection drug. The FDA approved > it for severe psoriasis a few years ago. It is very risky! (I’m one of the > more fortunate ones since I went from 95% coverage to almost none in 3 weeks > with few side effects. Frequent and comrehensive blood test are required. > Check the web or with pharmacist for detailed information. > Good luck > Irv—>in Alabama
Congratulations IRV! I know you’ve had to hang in there a long time. Here’s wishing you continued success. Keep us updated, okay? Take care, MichaelP
Response:
Hello, I have been on Neoral for about 10 months and it was great for about 9 months. In the past, I had to do blood work every month but did not have any side effects. The problem is the effect of the drug is wearing off. Some of the psoriasis is coming back and my arthritis has been really bad. So my derm is going to take me off of it and put me back on MTX and Arava. Oh well, back to square one again. – Hide quoted text — Show quoted text -> I’m new here but very happy that you found something that helps you out > without to much side effects. > Can someone give me the ups and downs of Cyclosporin > Thanks > Chegueverra > > >Peace, love, and Healthier Days to all > > >Lorraine > > Hi Lorraine and welcome back. Nice to hear some positive results with > the > > psoriasis condition. I have been on Cyclosporin (Neoral) for about 5 > weeks and > > the skin is the best in 15 years. I can actually see real skin and > veins. I > > will continue with this as long as the blood test are OK. The > improvement has > > been very dramatic, with little flaking. Side effects (headache, upset > > stomach, etc. have been minimal.) > > Stay well and regards to all, > > Irv—>in Alabama > Verrrrrry happy for you, Irv. I really hope your blood > test will be OK at least until we’ll have something > better than Cyclosporin. An this time is coming. > Oscar in Italy
Before you buy.
Response:
>I am Supposed to take 425 a day BUT,,i don’t,,I know I am breaking the >rules.. I only Take 225 a day. the way I look at it is they are giving it to >me
Lorraine, I know you realize self-medicating with these dangerous drugs is foolish! Do you also realize that when your doctor reviews your cyclosporine level he will be confused as to why it is lower than would be expected if you were taking the prescribed amount? If you don’t tell him you haven’t taken as much as he prescribes, you will have to "fess up" as soon as he sees blood tests. About the stockpiling, well, in addition to monitoring blood work, you should be carefully monitoring blood pressure. Are you prepared to do that too when you start taking the cyclosporine on your own? What if your bloodwork shows problems? It isn’t as cut and dried as "is it in the range or not?" My doctor looks for changes within the ranges and changes my doses accordingly. Do you know what to look for? Be very careful! These drugs are not intended to be monitored by anyone who is not a specialist in immune system suppressant drugs. You could end up on dialysis!
Response:
I’m new here but very happy that you found something that helps you out without to much side effects. Can someone give me the ups and downs of Cyclosporin Thanks Chegueverra
– Hide quoted text — Show quoted text -> >Peace, love, and Healthier Days to all > >Lorraine > Hi Lorraine and welcome back. Nice to hear some positive results with the > psoriasis condition. I have been on Cyclosporin (Neoral) for about 5 weeks and > the skin is the best in 15 years. I can actually see real skin and veins. I > will continue with this as long as the blood test are OK. The improvement has > been very dramatic, with little flaking. Side effects (headache, upset > stomach, etc. have been minimal.) > Stay well and regards to all, > Irv—>in Alabama > Verrrrrry happy for you, Irv. I really hope your blood > test will be OK at least until we’ll have something > better than Cyclosporin. An this time is coming. > Oscar in Italy
Response:
> >Peace, love, and Healthier Days to all >Lorraine > Hi Lorraine and welcome back. Nice to hear some positive results with the > psoriasis condition. I have been on Cyclosporin (Neoral) for about 5 weeks and > the skin is the best in 15 years. I can actually see real skin and veins. I > will continue with this as long as the blood test are OK. The improvement has > been very dramatic, with little flaking. Side effects (headache, upset > stomach, etc. have been minimal.) > Stay well and regards to all, > Irv—>in Alabama
Verrrrrry happy for you, Irv. I really hope your blood test will be OK at least until we’ll have something better than Cyclosporin. An this time is coming. Oscar in Italy
Response:
My dermatologist had me do a month on cyclosporin about three years ago. I did notice a faster response to PUVA. The most talked about effect was my sleepwalking! This is a listed side effect and did it ever hit me! I would put on a show every night for the last week of my course. I still hear about it from the kids! I have been known to sleepwalk in the past, so I guess the med just made me do it more. MrBill – Hide quoted text — Show quoted text ->Peace, love, and Healthier Days to all >Lorraine >Hi Lorraine and welcome back. Nice to hear some positive results with the >psoriasis condition. I have been on Cyclosporin (Neoral) for about 5 weeks and >the skin is the best in 15 years. I can actually see real skin and veins. I >will continue with this as long as the blood test are OK. The improvement has >been very dramatic, with little flaking. Side effects (headache, upset >stomach, etc. have been minimal.) >Stay well and regards to all, >Irv—>in Alabama
Response:
>Peace, love, and Healthier Days to all >Lorraine
Hi Lorraine and welcome back. Nice to hear some positive results with the psoriasis condition. I have been on Cyclosporin (Neoral) for about 5 weeks and the skin is the best in 15 years. I can actually see real skin and veins. I will continue with this as long as the blood test are OK. The improvement has been very dramatic, with little flaking. Side effects (headache, upset stomach, etc. have been minimal.) Stay well and regards to all, Irv—>in Alabama
Response:
Irv, I am so happy to hear this news… so often you are around to hear good news from other folks, to add your positive spin, and to encourage people never to give up. But this is the first time I can remember you posting that your skin is doing so well. May this continue and may you enjoy it in good health! Best regards,
Response:
Irv, Hey there. I just knew you’d still be here..and am happy you are. I know your elation about the cyclosporin it has been a life saver for me. Yup the side effects scre the crap out of me, but so far great blood work and not a single side effect. So as long as it keeps going this way I’m keping it. glad to hear your doing so well. Missed you bunches. Peace Lorraine
Response:
No, not yet. I’ve been getting progressively sicker since Christmas, but have it on my list to search for when I get out. I have found it at Amazon.com, and will get it there if I must! Thanks for asking. Also, BTW, I thought we might continue our conversation in e-mail after I’ve read it, if you don’t mind. : ) Ceresse
– Hide quoted text — Show quoted text -> Yes, Ceresse. They are one and the same. > BTW, did you ever get a hold of a copy of that book we talked about? > i haven’t "blocked" anybody. Is that the same as "killfile"? Ceresse > > I am curious, How many have blocked NA and how many Watchman? UM MOM > Susan > > > That’s exactly what I think about him. > > > — > > > Take Care, > > > Sherry :o) > > > said… > > > Killfile him. I think he’s just enjoying himself at other people’s > > > expense. I don’t suppose he has any illnesses himself at all; he’s > > > just a very twisted person. > > > > Thanks Robert, he is definitely on a roll. Maybe it is time. My > > problem > > > is > > > > that he is twisting around what I say and If I block him I can’t > correct > > > it > > > > or defend myself. If you really think it’s best drop me a email. > UM > > MOM > > > > susan > > > > > > NA if you are going to post a paste and cut of what I posted > than > > do > > > > the you. > > > > > Susan my dear, > > > > > I know you don’t believe in killfiles, but they do serve a > useful > > > > > purpose. The purpose is to prevent the user from getting all > > aggravated > > > by > > > > > some freaking idiot like NA or Watchmouse… > > > > > Out of sight, out of mind. It’s bliss. NA is a schlemiel or > > > something, > > > > I > > > > > dunno. I really advise you to start a killfile. For anyone that > has > a > > > > > stress-related illness, which I strongly suspect is the case with > most > > > of > > > > > us, less stress is a good thing. > > > > > You will never change the mind of an idiot like NA; you have > to > > have > > > a > > > > > mind before it can be changed and his is already filled to > capacity > > with > > > > > nastiness and pomposity… > > > > > Robert > > > — > > > Fran
Response:
Yes, Ceresse. They are one and the same. BTW, did you ever get a hold of a copy of that book we talked about?
– Hide quoted text — Show quoted text -> i haven’t "blocked" anybody. Is that the same as "killfile"? Ceresse > I am curious, How many have blocked NA and how many Watchman? UM MOM > Susan > > That’s exactly what I think about him. > > — > > Take Care, > > Sherry :o) > > said… > > Killfile him. I think he’s just enjoying himself at other people’s > > expense. I don’t suppose he has any illnesses himself at all; he’s > > just a very twisted person. > > > Thanks Robert, he is definitely on a roll. Maybe it is time. My > problem > > is > > > that he is twisting around what I say and If I block him I can’t > correct > > it > > > or defend myself. If you really think it’s best drop me a email. UM > MOM > > > susan > > > > > NA if you are going to post a paste and cut of what I posted than > do > > > the > > > > Susan my dear, > > > > I know you don’t believe in killfiles, but they do serve a > useful > > > > purpose. The purpose is to prevent the user from getting all > aggravated > > by > > > > some freaking idiot like NA or Watchmouse… > > > > Out of sight, out of mind. It’s bliss. NA is a schlemiel or > > something, > > > I > > > > dunno. I really advise you to start a killfile. For anyone that has > a > > > > stress-related illness, which I strongly suspect is the case with > most > > of > > > > us, less stress is a good thing. > > > > You will never change the mind of an idiot like NA; you have to > have > > a > > > > mind before it can be changed and his is already filled to capacity > with > > > > nastiness and pomposity… > > > > Robert > > — > > Fran
Response:
yep, it sure is. : ) — Take Care, Sherry :o)
i haven’t "blocked" anybody. Is that the same as "killfile"? Ceresse
– Hide quoted text — Show quoted text -> I am curious, How many have blocked NA and how many Watchman? UM MOM Susan > That’s exactly what I think about him. > — > Take Care, > Sherry :o) > said… > Killfile him. I think he’s just enjoying himself at other people’s > expense. I don’t suppose he has any illnesses himself at all; he’s > just a very twisted person. > > Thanks Robert, he is definitely on a roll. Maybe it is time. My > problem > is > > that he is twisting around what I say and If I block him I can’t correct > it > > or defend myself. If you really think it’s best drop me a email. UM > MOM > > susan > > > > NA if you are going to post a paste and cut of what I posted than > do > > the > > > Susan my dear, > > > I know you don’t believe in killfiles, but they do serve a useful > > > purpose. The purpose is to prevent the user from getting all > aggravated > by > > > some freaking idiot like NA or Watchmouse… > > > Out of sight, out of mind. It’s bliss. NA is a schlemiel or > something, > > I > > > dunno. I really advise you to start a killfile. For anyone that has a > > > stress-related illness, which I strongly suspect is the case with most > of > > > us, less stress is a good thing. > > > You will never change the mind of an idiot like NA; you have to > have > a > > > mind before it can be changed and his is already filled to capacity > with > > > nastiness and pomposity… > > > Robert > — > Fran
Response:
i haven’t "blocked" anybody. Is that the same as "killfile"? Ceresse
– Hide quoted text — Show quoted text -> I am curious, How many have blocked NA and how many Watchman? UM MOM Susan > That’s exactly what I think about him. > — > Take Care, > Sherry :o) > said… > Killfile him. I think he’s just enjoying himself at other people’s > expense. I don’t suppose he has any illnesses himself at all; he’s > just a very twisted person. > > Thanks Robert, he is definitely on a roll. Maybe it is time. My > problem > is > > that he is twisting around what I say and If I block him I can’t correct > it > > or defend myself. If you really think it’s best drop me a email. UM > MOM > > susan > > > > NA if you are going to post a paste and cut of what I posted than > do > > the > > > Susan my dear, > > > I know you don’t believe in killfiles, but they do serve a useful > > > purpose. The purpose is to prevent the user from getting all > aggravated > by > > > some freaking idiot like NA or Watchmouse… > > > Out of sight, out of mind. It’s bliss. NA is a schlemiel or > something, > > I > > > dunno. I really advise you to start a killfile. For anyone that has a > > > stress-related illness, which I strongly suspect is the case with most > of > > > us, less stress is a good thing. > > > You will never change the mind of an idiot like NA; you have to > have > a > > > mind before it can be changed and his is already filled to capacity > with > > > nastiness and pomposity… > > > Robert > — > Fran
Response:
I’ve had them both in my killfile for over a month now. ~~~~Pat CD Class of 98 >"SDores" wrote… > I am curious, How many have blocked NA and how many Watchman? UM MOM
Susan
Response:
NA just made my killfilter. Watchman still has some promise if we can get him off his crusade to piss everyone off with his iron posts.
– Hide quoted text — Show quoted text -> I am curious, How many have blocked NA and how many Watchman? UM MOM Susan > That’s exactly what I think about him. > — > Take Care, > Sherry :o) > said… > Killfile him. I think he’s just enjoying himself at other people’s > expense. I don’t suppose he has any illnesses himself at all; he’s > just a very twisted person. > > Thanks Robert, he is definitely on a roll. Maybe it is time. My > problem > is > > that he is twisting around what I say and If I block him I can’t correct > it > > or defend myself. If you really think it’s best drop me a email. UM > MOM > > susan > > > > NA if you are going to post a paste and cut of what I posted than > do > > the > > > Susan my dear, > > > I know you don’t believe in killfiles, but they do serve a useful > > > purpose. The purpose is to prevent the user from getting all > aggravated > by > > > some freaking idiot like NA or Watchmouse… > > > Out of sight, out of mind. It’s bliss. NA is a schlemiel or > something, > > I > > > dunno. I really advise you to start a killfile. For anyone that has a > > > stress-related illness, which I strongly suspect is the case with most > of > > > us, less stress is a good thing. > > > You will never change the mind of an idiot like NA; you have to > have > a > > > mind before it can be changed and his is already filled to capacity > with > > > nastiness and pomposity… > > > Robert > — > Fran
Response:
I’ve blocked them both. — Take Care, Sherry :o)
I am curious, How many have blocked NA and how many Watchman? UM MOM Susan
– Hide quoted text — Show quoted text -> That’s exactly what I think about him. > — > Take Care, > Sherry :o) > said… > Killfile him. I think he’s just enjoying himself at other people’s > expense. I don’t suppose he has any illnesses himself at all; he’s > just a very twisted person. > Thanks Robert, he is definitely on a roll. Maybe it is time. My problem > is > that he is twisting around what I say and If I block him I can’t correct > it > or defend myself. If you really think it’s best drop me a email. UM MOM > susan > > > NA if you are going to post a paste and cut of what I posted than do > the > > Susan my dear, > > I know you don’t believe in killfiles, but they do serve a useful > > purpose. The purpose is to prevent the user from getting all aggravated > by > > some freaking idiot like NA or Watchmouse… > > Out of sight, out of mind. It’s bliss. NA is a schlemiel or > something, > I > > dunno. I really advise you to start a killfile. For anyone that has a > > stress-related illness, which I strongly suspect is the case with most > of > > us, less stress is a good thing. > > You will never change the mind of an idiot like NA; you have to have > a > > mind before it can be changed and his is already filled to capacity with > > nastiness and pomposity… > > Robert > — > Fran
Response:
I am curious, How many have blocked NA and how many Watchman? UM MOM Susan
– Hide quoted text — Show quoted text -> That’s exactly what I think about him. > — > Take Care, > Sherry :o) > said… > Killfile him. I think he’s just enjoying himself at other people’s > expense. I don’t suppose he has any illnesses himself at all; he’s > just a very twisted person. > Thanks Robert, he is definitely on a roll. Maybe it is time. My problem > is > that he is twisting around what I say and If I block him I can’t correct > it > or defend myself. If you really think it’s best drop me a email. UM MOM > susan > > > NA if you are going to post a paste and cut of what I posted than do > the > > Susan my dear, > > I know you don’t believe in killfiles, but they do serve a useful > > purpose. The purpose is to prevent the user from getting all aggravated > by > > some freaking idiot like NA or Watchmouse… > > Out of sight, out of mind. It’s bliss. NA is a schlemiel or > something, > I > > dunno. I really advise you to start a killfile. For anyone that has a > > stress-related illness, which I strongly suspect is the case with most > of > > us, less stress is a good thing. > > You will never change the mind of an idiot like NA; you have to have > a > > mind before it can be changed and his is already filled to capacity with > > nastiness and pomposity… > > Robert > — > Fran
Response:
That’s exactly what I think about him. — Take Care, Sherry :o)
said… Killfile him. I think he’s just enjoying himself at other people’s expense. I don’t suppose he has any illnesses himself at all; he’s just a very twisted person. – Hide quoted text — Show quoted text -> Thanks Robert, he is definitely on a roll. Maybe it is time. My problem is > that he is twisting around what I say and If I block him I can’t correct it > or defend myself. If you really think it’s best drop me a email. UM MOM > susan > > NA if you are going to post a paste and cut of what I posted than do > the > Susan my dear, > I know you don’t believe in killfiles, but they do serve a useful > purpose. The purpose is to prevent the user from getting all aggravated by > some freaking idiot like NA or Watchmouse… > Out of sight, out of mind. It’s bliss. NA is a schlemiel or something, > I > dunno. I really advise you to start a killfile. For anyone that has a > stress-related illness, which I strongly suspect is the case with most of > us, less stress is a good thing. > You will never change the mind of an idiot like NA; you have to have a > mind before it can be changed and his is already filled to capacity with > nastiness and pomposity… > Robert
– Fran
Response:
If people get upset because he posts something about you, just let them know that you have him killfiled and that says it all in a nutshell. Nothing he says after that is relative as he’d just be talking to himself.
– Hide quoted text — Show quoted text -> Thanks Robert, he is definitely on a roll. Maybe it is time. My problem is > that he is twisting around what I say and If I block him I can’t correct it > or defend myself. If you really think it’s best drop me a email. UM MOM > susan > > NA if you are going to post a paste and cut of what I posted than do > the > Susan my dear, > I know you don’t believe in killfiles, but they do serve a useful > purpose. The purpose is to prevent the user from getting all aggravated by > some freaking idiot like NA or Watchmouse… > Out of sight, out of mind. It’s bliss. NA is a schlemiel or something, > I > dunno. I really advise you to start a killfile. For anyone that has a > stress-related illness, which I strongly suspect is the case with most of > us, less stress is a good thing. > You will never change the mind of an idiot like NA; you have to have a > mind before it can be changed and his is already filled to capacity with > nastiness and pomposity… > Robert
Response:
You might try giving it a rest. Pearl said something I was thinking, almost verbatim. I’ve been seen by one of those docs that tries things short term and then starts to opt for surgery very quickly. Fortunately for me, I had the where with all to tell him to find another option as the parts stay. I’m glad I did as it is much better, not great, but better. It was at that time I had come here to get information……and I don’t recall YOUR popping up with anything useful at that time. So, if you want a wee bit of credibility yourself, pipe down, and try to be supportive. Pearl gave her opinion, mine as well. Susan was replying with hers to support Pearl. So, young’n, it’s time heed your own words….."this thread is about Lee, not you and your emotions"
– Hide quoted text — Show quoted text -> "> I am > scared, feel guilty and have a lot of emotions > Uh Susan, this thread is about Lee, not about you and your emotions.
Response:
> NA if you are going to post a paste and cut of what I posted than do the
Susan my dear, I know you don’t believe in killfiles, but they do serve a useful purpose. The purpose is to prevent the user from getting all aggravated by some freaking idiot like NA or Watchmouse… Out of sight, out of mind. It’s bliss. NA is a schlemiel or something, I dunno. I really advise you to start a killfile. For anyone that has a stress-related illness, which I strongly suspect is the case with most of us, less stress is a good thing. You will never change the mind of an idiot like NA; you have to have a mind before it can be changed and his is already filled to capacity with nastiness and pomposity… Robert
Response:
Thanks Robert, he is definitely on a roll. Maybe it is time. My problem is that he is twisting around what I say and If I block him I can’t correct it or defend myself. If you really think it’s best drop me a email. UM MOM susan – Hide quoted text — Show quoted text -> NA if you are going to post a paste and cut of what I posted than do the > Susan my dear, > I know you don’t believe in killfiles, but they do serve a useful > purpose. The purpose is to prevent the user from getting all aggravated by > some freaking idiot like NA or Watchmouse… > Out of sight, out of mind. It’s bliss. NA is a schlemiel or something, I > dunno. I really advise you to start a killfile. For anyone that has a > stress-related illness, which I strongly suspect is the case with most of > us, less stress is a good thing. > You will never change the mind of an idiot like NA; you have to have a > mind before it can be changed and his is already filled to capacity with > nastiness and pomposity… > Robert
Response:
You don’t have to defend yourself or correct anyone — everyone here knows what is going on, just ignore and/or killfile it. Rebecca 
– Hide quoted text — Show quoted text -> Thanks Robert, he is definitely on a roll. Maybe it is time. My problem is > that he is twisting around what I say and If I block him I can’t correct it > or defend myself. If you really think it’s best drop me a email. UM MOM > susan > > NA if you are going to post a paste and cut of what I posted than do > the > Susan my dear, > I know you don’t believe in killfiles, but they do serve a useful > purpose. The purpose is to prevent the user from getting all aggravated by > some freaking idiot like NA or Watchmouse… > Out of sight, out of mind. It’s bliss. NA is a schlemiel or something, > I > dunno. I really advise you to start a killfile. For anyone that has a > stress-related illness, which I strongly suspect is the case with most of > us, less stress is a good thing. > You will never change the mind of an idiot like NA; you have to have a > mind before it can be changed and his is already filled to capacity with > nastiness and pomposity… > Robert
Response:
"> I am > scared, feel guilty and have a lot of emotions
Uh Susan, this thread is about Lee, not about you and your emotions.
Response:
NA if you are going to post a paste and cut of what I posted than do the lot more and you just took this part out of context. I have given support to Lee if you read. and if you reread what I said I told you politely to stop attacking Pearl who was also trying to help Lee. So kiss off today and leave me alone!!!! UM MOM Susan
– Hide quoted text — Show quoted text -> "> I am > scared, feel guilty and have a lot of emotions > Uh Susan, this thread is about Lee, not about you and your emotions.
Response:
> I don’t think that someone who was diagnosed in October, 3 months ago, could > have possibly been on all the medications that are used in UC for long > enough to let any one of them have a chance to work.
Pearl is probably wrong (yet again). If the doctor is now giving cyclosporine, it’s most likely because he probably already tried Imuran or 6-mp, which are the first-choice immune suppressants, and this poor guy couldn’t tolerate them. Cyclosporine works pretty quickly, and it takes very little time to tell if it’s going to work or not. It’s also the last immune suppressant left, after Imuran and menthotrexate. It it fails, and if the person has pancolitis, as this guy does, then the next step is indeed surgery. No controversy to that. Even if you do succeed in controlling pancolitis for a while with medication, the person eventually may have to have his colon removed anyway because he is at a high risk of developing cancer.
Response:
NA you have gotten good at assumptions like mgbio said. Cut it out please. Since you ignore everytime when someone asks you what IBD you have then I don’t think this kind of comments are acceptable because you have never experienced what we all are going through. And trust me right now I am scared, feel guilty and have a lot of emotions so I am out of sorts. So please give it a rest, I am begging you. UM MOM Susan
– Hide quoted text — Show quoted text -> I don’t think that someone who was diagnosed in October, 3 months ago, could > have possibly been on all the medications that are used in UC for long > enough to let any one of them have a chance to work. > Pearl is probably wrong (yet again). If the doctor is now giving > cyclosporine, it’s most likely because he probably already tried > Imuran or 6-mp, which are the first-choice immune suppressants, and > this poor guy couldn’t tolerate them. Cyclosporine works pretty > quickly, and it takes very little time to tell if it’s going to work > or not. It’s also the last immune suppressant left, after Imuran and > menthotrexate. It it fails, and if the person has pancolitis, as this > guy does, then the next step is indeed surgery. No controversy to > that. > Even if you do succeed in controlling pancolitis for a while with > medication, the person eventually may have to have his colon removed > anyway because he is at a high risk of developing cancer.
Response:
Thanks Paulie, those who have been around for awhile know me. I think I usually kniw what I’m talking about. There are plenty of people who give emotional support when that is the first order of business, when someone is getting appropriate care, but when someone is not getting good care and guidance then we must first make sure they are getting proper medical advice. Feelings are important but not more important than one’s health. If one is not getting good care, emotional welbeing means nothing. To be "happy" is secondary to one’s health, one’s very life.
– Hide quoted text — Show quoted text -> I agree with Pearl. Even one med cannot get a really good evaluation taking > into account the whole disease and the whole body – let alone everything > available in a three month time frame.. Needs to be some caution here. A > descision regarding surgery is warranted if signs of a stricture, an > obstruction, etc. are present. Second and sometimes third opinions can prove to > be the most prudent action. Think this thru very carefully
Response:
It took me four specialist before I got the answers I needed and by then it was too late for me to prevent surgery. I agree, your doctor sound like he is doing a hit and run guessing with the meds and not allow you enough time on any to see if there is anything changing. Please check to see about another opinion. UM MOM Susan
– Hide quoted text — Show quoted text -> I agree with Pearl. Even one med cannot get a really good evaluation taking > into account the whole disease and the whole body – let alone everything > available in a three month time frame.. Needs to be some caution here. A > descision regarding surgery is warranted if signs of a stricture, an > obstruction, etc. are present. Second and sometimes third opinions can prove to > be the most prudent action. Think this thru very carefully
Response:
I agree with Pearl. Even one med cannot get a really good evaluation taking into account the whole disease and the whole body – let alone everything available in a three month time frame.. Needs to be some caution here. A descision regarding surgery is warranted if signs of a stricture, an obstruction, etc. are present. Second and sometimes third opinions can prove to be the most prudent action. Think this thru very carefully
Response:
Pearl, I don’t think your approach to new members to the group is very welcoming today,do you???? Either answer his question or back off him!!! Poor guy came to people in a similar position for some honest advise and you jump down his neck!!! He said it’s been 3 months since he was diagnosed with total colitis, he’s probably had it a lot longer than that!!!!!!! Try and be more understanding and not so high and mighty!!!Every one here needs each other ,not another lecture.
– Hide quoted text — Show quoted text -> I don’t think that someone who was diagnosed in October, 3 months ago, could > have possibly been on all the medications that are used in UC for long > enough to let any one of them have a chance to work. I think you need to get > another opinion. Any doctor who would sya that an operating table is your > next step after 3 months is dangerous. > Hi > I have recently (October) been diagnosed as having total colitis and have > been on several medicines all of which have had their side effects. I > have > now started taking Cyclosporin – 150 mg twice a day. > Does anybody know what are the side effects of taking CYCLOSPORIN, and how > quick do the tablets start to take effect. > The doc says that these are the last tablets available and the next stop > is > the operating theatre – which I’m not looking forward to. > Thanks > Lee
Response:
I was not being high and mighty. I am afraid for this person. He/she is obviously in the hands of someone who doesn’t know what they are doing and an unsuspecting person needs to be advised to get a second opinion. I only wish someone had done this for me before I lost my colon. First and foremost people need correct information – the objective can save lives and body parts, the subjective can be soothing, welcoming and make one emotionally feel better but the most important thing is their health and their life. There are many in this group who say very kind, soothing things, I certainly have when this is what someone needs initially, just ask Susan, but this person needs another medical opinion now.
– Hide quoted text — Show quoted text -> Pearl, > I don’t think your approach to new members to the group is very welcoming > today,do you???? Either answer his question or back off him!!! Poor guy came > to people in a similar position for some honest advise and you jump down his > neck!!! He said it’s been 3 months since he was diagnosed with total > colitis, he’s probably had it a lot longer than that!!!!!!! Try and be more > understanding and not so high and mighty!!!Every one here needs each other > ,not another lecture. > I don’t think that someone who was diagnosed in October, 3 months ago, > could > have possibly been on all the medications that are used in UC for long > enough to let any one of them have a chance to work. I think you need to > get > another opinion. Any doctor who would sya that an operating table is your > next step after 3 months is dangerous. > > Hi > > I have recently (October) been diagnosed as having total colitis and > have > > been on several medicines all of which have had their side effects. I > have > > now started taking Cyclosporin – 150 mg twice a day. > > Does anybody know what are the side effects of taking CYCLOSPORIN, and > how > > quick do the tablets start to take effect. > > The doc says that these are the last tablets available and the next stop > is > > the operating theatre – which I’m not looking forward to. > > Thanks > > Lee
Response:
Hi I have recently (October) been diagnosed as having total colitis and have been on several medicines all of which have had their side effects. I have now started taking Cyclosporin – 150 mg twice a day. Does anybody know what are the side effects of taking CYCLOSPORIN, and how quick do the tablets start to take effect. The doc says that these are the last tablets available and the next stop is the operating theatre – which I’m not looking forward to. Thanks Lee
Response:
I don’t think that someone who was diagnosed in October, 3 months ago, could have possibly been on all the medications that are used in UC for long enough to let any one of them have a chance to work. I think you need to get another opinion. Any doctor who would sya that an operating table is your next step after 3 months is dangerous.
– Hide quoted text — Show quoted text -> Hi > I have recently (October) been diagnosed as having total colitis and have > been on several medicines all of which have had their side effects. I have > now started taking Cyclosporin – 150 mg twice a day. > Does anybody know what are the side effects of taking CYCLOSPORIN, and how > quick do the tablets start to take effect. > The doc says that these are the last tablets available and the next stop is > the operating theatre – which I’m not looking forward to. > Thanks > Lee
Response:
>P.S. Let’s all start putting at least the state/country where we live >so we know if we’re talking to someone where they are. THIS IS NOT A >RULE OR REQUIREMENT, IT IS A SUGGESTION ONLY. No flames will be >accepted.
I like this idea also. JoLynn Belvidere, IL
Response:
>P.S. Let’s all start putting at least the state/country where we live >>so we know if we’re talking to someone where they are.
This is just your secret way to figure out who your SS is, huh??<beg> So now, all you have to do is look at the postmark. Hmmmm, maybe it is a good idea!! Take care, Gina (Somewhere on the East Coast)
Response:
Guilty. <BEG> However, I do want to know where people are so that when I travel I can look them up. I suspect I know who my secret sender is but I’m not sure. I guess we have to wait until February. In the meantime, I’m lovin’ life. DeeTee – Hide quoted text — Show quoted text ->P.S. Let’s all start putting at least the state/country where we live >>>so we know if we’re talking to someone where they are. > This is just your secret way to figure out who your SS is, huh??<beg> So now, > all you have to do is look at the postmark. Hmmmm, maybe it is a good idea!! > Take care, > Gina > (Somewhere on the East Coast)
Response:
Ok folks– I’m going to come on in and quit lurking… This ng is great– lots of info for those of us who feel like we’re stumbling in the dark, trying to figure all this ra stuff out. I was diagnosed last spring, and have since been trying to be patient while we figure out the right combination of meds. I’m on oral gold, MTX, pred..and doc is considering starting Cyclosporin next month…anyone had experience with this one? I’ve been disappointed and surprised that the inflammation hasn’t disappeared, even though I’ve been on pred for several months– now having fun with pleurisy…and trying to work down and eventually off of the pred. Marsha
Response:
Good LORD, Tanya! You take ALL of these at the same time?? or you *Have* taken all of these in the course of your search? What diseases do you have? How does your body cope with the onslaught of chemicals and disease at the same time? Are your liver panels good? who is your RD that’s so … um… adventurous? to let you get so deep with all of the DMARD’s and such? (how could one person ask a total stranger to reveal her personal life?<g>) Uv (the ever curious)((okay, nosey)) >Cyclosporine user here. I take 150 – 175 mgs per day depending on how I
feel. <<schnippity snip schnip>> – Hide quoted text — Show quoted text ->I also take: plaquenil, mthx, prednisone, pain meds, azathioprine and maxzide. >tanya
Response:
Hi Marsha, Welcome to the sandbox and congrat’s on de-lurking!! Way to go!! Isn’t the air much fresher out here in the open? So does JRHITEACH mean you teach Jr Hi?? If so, my hat’s off to you. I have no advice for you ~ I take Plaquenil, Voltaren, Prednisone, and Sulfasalazine so I’ve no experience with cyclosporin to share. I hope it does the trick though and you start feeling better soon! Keep posting~ (sounds like the bumper sticker that says Keep on Truckin!) Barbara Joy
Response:
>I’ve been on >pred for several months– now having fun with pleurisy…and trying to work >down and eventually off of the pred. Marsha
Hi Marsha! Glad you decided to delurk!!!! She’s okay gang! <g> Don’t have any advice on Cyclosporin, but keep us posted if you go on it. Keep Smilin’ ~krissy Akron, Ohio Visit my web pages at: http://arthritisnet.com http://members.aol.com/KrissyJo/RA.html
Response:
>I’m on >oral gold, MTX, pred..and doc is considering starting Cyclosporin next >month…anyone had experience with this one?
Yes, under the name Neoral. I’m also on MTX, minocycline, plaquenil, and prednisone, and basically I feel fine (more or less,some days being better than others) but have not been able to eliminate the prednisone. Potential side effects include kidney problems and higher blood pressure, I think–if you’re interested I can dig out the drug info. I haven’t had any adverse reactions. On the other hand, it took several years of adjusting meds before I actually felt better. Judith
Response:
Hi Marsha!!!! Glad you have jumped in here!! Don’t be put off by the flying sand, it will settle down shortly. I don’t have any info on the cyclosporin for you (as I am on plaquenil, pred, etc yada, yada), but there are several that are on the cyclosporin who are having good results—hopefully they will be along soon!!! Glad you jumped in and I think Char still has the buckets? Don’t you Char? Take care and keep us posted, Lori
Response:
Cyclosporine user here. I take 150 – 175 mgs per day depending on how I feel. I tried 200mgs but thats where the side effects kicked in on me so I keep the dose abit lighter and no side effect just good results. Hint – have your doctor write the script for ALL 25mgs and not a 100mg and then 25’s… written all in one size dose is only 1 deductible on our insurance – when I originally started out, it was 1 deductible for the 100 and 1 deductible for the 25’s. Heck – whats a few more pills in the handful most of us take already.. Side effects noted: hair loss – egads, it fell out in clumps. bleeding gums when you brush your teeth and mine bled really bad. bruising at a slight bump. difficulty in stopping bleeding if a cut or scratch occured. headaches on the higher dose. I have been on this for 13 months now and the one thing to keep in mind is that you have to take it daily – never miss a dose – take at the same time each day. Oh yes, one more tidbit – it will affect your immune system and you WILL NEED TO AVOID contact with sick people and be extra cautious if you start a temp/get a sore throat etc. Your system WILL NOT be able to fight it alone – you will need ADDITIONAL meds from the doctor. All in all – I feel the drug makes a difference and I will continue to take it. I also take: plaquenil, mthx, prednisone, pain meds, azathioprine and maxzide. tanya
Response:
Hi Marsha-Boy it sounds like hey have had you on everything but the kitchen sink! Welcome to ASA. Glad you delurked. I wish I had a magic potion to give you, or an incantation that will make things better, but it doesnt work that way. As you unfortunately know. But take heart Enbrel will be out in just a few weeks (hopefully) and maybe its the magic bullet that you need. I hope it isnt too warm in here for you, we have had the heat turned WAY UP for a couple of days. But it seems as if things are cooling down some. I expect another heat wave in a couple of months, but perhaps we can hold it off til January, and can PEACE and GOOD WILL TOWARD MEN for the month of December. If you have any questions, please feel free to ask. If we dont have the answer, we can point you in the correct direction to find the answer for your self. Again, welcome to ASA, and dont forget to pack your asbestos jammies.<beg> Char Le Fleur Iowa, USA – Hide quoted text — Show quoted text – > Ok folks– I’m going to come on in and quit lurking… T
maybull.vcf
< 1K Download
Response:
http://www.rxlist.com/ Drug database – Hide quoted text — Show quoted text ->I’m on >oral gold, MTX, pred..and doc is considering starting Cyclosporin next >month…anyone had experience with this one? > Yes, under the name Neoral. I’m also on MTX, minocycline, plaquenil, and > prednisone, and basically I feel fine (more or less,some days being better than > others) but have not been able to eliminate the prednisone. Potential side > effects include kidney problems and higher blood pressure, I think–if you’re > interested I can dig out the drug info. I haven’t had any adverse reactions. > On the other hand, it took several years of adjusting meds before I actually > felt better. > Judith
Response:
Hi JR Hi Teach- I remember you from the chat the other day- welcome to our little (not so little anymore and ever growing) corner of the world. It’s up it’s down but it’s never boring!! Kate Send in the clowns
Response:
LOL Kate-You got that one right! This group is a lot of things, but boring isnt one of them. <BG> Char – Hide quoted text — Show quoted text – > Hi JR Hi Teach- I remember you from the chat the other day- welcome to our > little (not so little anymore and ever growing) corner of the world. It’s up > it’s down but it’s never boring!! > Kate Send in the clowns
maybull.vcf
< 1K Download
Response:
Marsha, Hi and welcome!! I started taking the Neoral around November of last year. I was in very bad shape. We had tried several drug combos before but with no luck. After about 3-4 months I felt a drastic improvement in my joints (I have RA). I was taking mthx. (20mg weekly) Neoral (200mg daily) Lodine XL (800mg daily) and pred (15mgs daily). That was alot of stuff but since then I have cut my pred. down to 2mgs daily and my mthx. to 15mg weekly and I am no longer taking the Lodine. Going off the Lodine wasn’t exactly because I felt great but because I have been having a little trouble with my blood pressure (side effect of Neoral). Now my RD wants to keep a close eye on me to see if it was the Lodine or the Neoral. He thinks the combo could be causing it. If not and it is still high he may consider taking me off the Neoral too. This kind of scares me considering this is the first and only combo to date that has really helped me. That Embrel better hurry up!! If you have any questions, please feel free to contact me anytime. Take care, Gina
Response:
Marsha, sorry you had a reason to find us, but glad you did! Welcome! Bonnie Never enter into a battle of wits with an unarmed opponent 
)
Response:
Marsha, Welcome into the light of the sandbox. I hear those bushes are murder! I see you teach jr. high. Girl, you are a hero in my book!! Any teacher is, as far as I’m concerned. DeeTee Bowie, MD P.S. Let’s all start putting at least the state/country where we live so we know if we’re talking to someone where they are. THIS IS NOT A RULE OR REQUIREMENT, IT IS A SUGGESTION ONLY. No flames will be accepted.
Response:
>DeeTee >Bowie, MD >P.S. Let’s all start putting at least the state/country where we live >so we know if we’re talking to someone where they are. THIS IS NOT A >RULE OR REQUIREMENT, IT IS A SUGGESTION ONLY. No flames will be >accepted.
Sounds like a good idea to me. Who knows, maybe we can find enough people in the DC/MD/VA area to fill Chevy’s. Judith Hyattsville, MD
Response:
Really good news and I am so glad to read this. Please take part here and let us know how it goes for you and your new dmard. Harv – Hide quoted text — Show quoted text ->>Hi Phil, Its good to see you back. The main side effect of Enbrel is >>the cost and the war that takes place on who payes for it. In about a >>year or so in Britain a new plant will be opening which should drive >>down the cost for those in need of a dmard that really works for them. >>As with any dmard, there are those it does not help. I really do not >>think it is available in GB right now which may be the reason for the >>reply from your doctor. >>Harv >In theory its available Harv, but its rare to find someone who is on it. A >new poster popped into upsa newsgroup a few days ago saying she’d been >prescribed it over here and she wanted info so we directed her here >Hope the costs come down soon for us. >Jayne > hi > i’m starting enbrel…. it’s living in my fridge as we speak > just trying to get rid of a mouth ulcer before i’m allowed to start it > i’m in the UK and getting this has’nt been easy > i’m 29 have had RA for 5yrs and have tried eveything available > 2yrs into the disease i had to have a wrist fusion and they are threatening > to replace my knees and fuse my left ankle joint > which is why my rheumy asked the health authority to fund enbrel.. > the answer to which was no it’s too expensive … > we battled hard for about 6 mths and as a last ditch > attempt i threatened them with an article in the guardian about prscription > lottery…. > this treatment has apparently been available in Canterbury since last year > (can’t confirm that) > i do Know of another patient who is 20yrs old who has been on Enrel for a > year > so it is possible to get it if you make some noise (although why should we > have to) > the reason it’s not on general prescription apparently is because it hasn’t > been passed by NICE and that won’t happen until Oct 2002 > the ost per year for this drug is
Related Posts