Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

just a question


  • Please log in to reply
7 replies to this topic

#1 Lynnie

Lynnie

    Silver Member

  • Members
  • PipPipPipPip
  • 173 posts
  • Location:UK HULL EAST YORKSHIRE

Posted 31 May 2010 - 10:18 AM

Hi Everyone,

I have been sat thinking(dangerous, :P).

Could any of you share with me your ideas/experiences on the topic of immune suppression?

Since I had such a awful reaction to Plaquenil in April, I have decided that I can't face that situation again...it was the worst 4weeks since my diagnosis that I had lived through.

My question is does immune suppression help in the overall scheme of things, I.e. extended life without worsening of symptoms/beneficial in the prolonging of things? And does choosing not to go down that route change the outcome? It just could be that I'm probably allergic to immune suppression therapy and I won't be given it again anyway. I know none of you are medical, but I can't be the only one allergic to these types of drugs! Any comments are very welcome so I can run them in my mind before I see the rheumatologist in the summer.
:thank-you:

thanks +warm hugs to all Lynn :emoticon-hug: :emoticon-hug:

#2 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 31 May 2010 - 10:56 AM

Hi Lynn,

I've been on CellCept since about 5 months after my diagnosis and feel that it has stabilized or, at the least, slowed down the progression of my lung involvement. I would be loathe to go off it.

Just because you had a bad reaction to Plaquenil (hydroxychloroquine sulfate) doesn't mean you will have a bad reaction to any other drug, just probably to any drug that is an aminoquinoline compound. Just to wow you with unpronounceable words, CellCept (mycophenolate mofetil) is the 2-morpholinoethyl ester of mycophenolic acid (MPA). They are two different critters altogether. (My daughter is a pharmacist and she's trying to educate me! :wacko:)

Everything comes down to a risk/benefit analysis, I guess. I have pulmonary fibrosis and pulmonary hypertension, two complications that are potentially fatal. For me, the risks involved with CellCept are not as great as the benefit. To give you another example, I'm allergic to certain antibiotics. I've had pneumonia twice, had antibiotics prescribed, and had no problems. I am careful to take the first couple of doses of any new antibiotic when my husband is home so that if I do have a problem, help is at hand.

Everybody is unique - what causes one person a problem might not bother anyone else. The course of your disease will undoubtedly be different than mine. However, on the whole, I think most of us on the Forum and most rheumatologists would agree that there is definitely a time and place for immuno-suppressants.

Best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#3 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 31 May 2010 - 02:41 PM

Lynn,
You ask some interesting questions. Jeannie provided some great information so ditto to everything she said. To help your question about whether it works or not, please check out some of the studies on our Medications - Immunosuppressants page. You'll find that in many cases, these drugs do help to slow down the progression of the disease, but do not completely stop it nor cure it. As jeannie mentioned, each drug suppresses the immune system in a different way, but the goal is to suppress it enough so that is slows down the damage that it is doing to your body.

I have been on immunosuppressants since August 2003 - first methotrexate, then imuran, cytoxan and now cellcept. Methotrexate worked great in the beginning but after 3 years its effect seemed to have been lost as I started developing pulmonary involvement. So I was taken off of it and put on imuran, and a month later cytoxan which I was on a month, then hospitalized. Obviously my body didn't like those two. So when I got out of the hospital I was put on cellcept. I've been on it since April 2007 and so far so good. I have even seen some improvements. So to reiterate Jeannie - different strokes for different folks. Just because you can't handle one drug, you might handle another quite well.

Whatever you decide, please have a serious discussion with you doctor and even your pharmacist. Please let us know what you decide.
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 01 June 2010 - 05:09 AM

Hi Lynn

I've had 6 cycles of IV Cyclophosphamide (Cytoxan) & now take 100mgs of Azathioprine (Imuran) daily, probably for the next 5 years. I have to have a blood test every 6 weeks & at first my liver enzymes shot sky high but after tinkering with the dosage (I was originally taking 125mg) my liver settled down. Apart from feeling slightly nauseous in the beginning & actually throwing up once :barf: I have had no other side effects to the drug at all.

Perhaps I've been very fortunate but certainly the benefits of being on the immune suppressants (for me!! ;) ) have certainly outweighed the side effects; as Jeannie said, pulmonary fibrosis can be potentially fatal & I'm pretty sure if I hadn't had the prompt treatment I received, by this time I would most certainly be on oxygen & possibly confined to a wheelchair.......certainly not able to enjoy the good quality of life I have now!! ;) :) I'm due another lung function test next month & am hoping for another improvement in my TLCO (transfer of oxygen & carbon dioxide). Certainly I can exercise almost as well as I could before I had this bizarre disease; any decrease is most likely due to my being a lot less fit than I was 18 months ago. :mellow:

Perhaps there may be another drug you could take that wouldn't give you such a violent reaction? It might be worth explaining the problem to your rheumatologist when you see her next & see if she can come up with anything else.

I'll PM you later xxx :emoticon-hug:

Jo.

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#5 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 01 June 2010 - 07:22 AM

Hello Lynn

If you're not taking an immunosuppressant you're not taking anything aimed at slowing down the progression of the disease. I was on mycophenolate for 10 months but then swapped over to methotexate because of side effects. I now have serious heart involvement so have to take the whole issue very seriously and am awaiting to find out if I am going to have to move up from methotrexate to rounds of cytoxan.

As we all know everyone has a unique experience of scleroderma so no one can say anything for sure but the way I look at it is that if something could help it's worth at least trying. Just because you struck out with plaquinil doesn't mean you would with mycophenolate, methotrexate, azathioprin or any other drug.

Take care and keep posting.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#6 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 01 June 2010 - 09:40 AM

Hi Lynn,

I guess I ought to add that it is my understanding that scleroderma doesn't always progress or progresses so very slowly or progresses to a certain point and then just plain stops, so that the whole issue of immunosuppressants, especially some of the more toxic ones, might never arise. We always tend to think the worst, but the worst doesn't always happen!

^_^
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#7 lizzie

lizzie

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 497 posts
  • Location: UK

Posted 01 June 2010 - 10:08 AM

Hi Lynn, My rheumatologist recommended I should start immunsupression about 2 years ago when I started to get skin thickening/tightening. I have taken Cellcept and now take Methotrexate and really do think that they have slowed progression and even reversed some of the tightness. I don't think any immunosupressant is exactly a joy to take, but for me the benefits have definitely outweighed the negatives. Just as with other drugs, even though your body is not happy with one immunosupressant, it doesn't mean that you can't take any immunosupressants. I tried four different drugs for the Raynauds before we hit on one that I could tolerate.

Lizzie

#8 Lynnie

Lynnie

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 173 posts
  • Location:UK HULL EAST YORKSHIRE

Posted 02 June 2010 - 12:48 PM

:thank-you: to all of you for sharing your thoughts with me. I just heard today the rheumatologist has said as I was "doing very well at the last visit" in March and doesn't need to see me earlier than August, even though my general practitioner had wrote/rang about my rotten reaction, but had sent an email to the surgery with a request for me to start on a new calicium blocker. I rang later to see if there was a prescription for me+ they'd lost it!!! :emoticon-bang-head: so I am chasing that up!! It's a good surgery but I despair at times!

So, obviously the consultant isn't in any rush to re-start me on immune suppressant drugs. I know myself my joint pain in my arms(elbows)and weakness/stiffness in my right arm, also pain like toothache is causing me to think that I may be heading down that road. I wanted ideas/thoughts to make an informed choice when I see her. I have to admit it's the discomfort as I am right handed. It really gets to me and I get fed up, worn down, and thinking is this it, am I going to hurt forever there? I can't imagine having toothache pain for the next however many years,and pain killers have little effect. I know I am a lot better off than some. I shouldn't whinge and bleat woe is me. I do get "sad" about it all some days and keeping that smile on isnt easy, when all you want to do is go to bed and get up and find its all been just a bad dream. I'm ok again, guess its a "feeling sorry for oneself" moment, I'll get over it, I am sure. It just all wears you down at times!!

Anyway, thanks guys. Keep well, ok?

warm hugs to all
Lynn :emoticon-hug: x