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janey

Do You Take An Immunosuppresant Drug?

26 posts in this topic

In some of the recent postings I have notice that there are a variety of immunosuppresants being used and that some of you don't take them at all. I, myself, am in the process of finding a replacement for methotrexate, so I have a few questions:

What immunosuppressant(s) are you taking?
What side effects have you experienced?
How has it controlled your disease(s)?
If you are NOT taking an immunosuppresant, why not?


Here's a question Mike asked earlier:
At what point after diagnosis were you put on immunosuppressants?
 


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Janey,

 

I have a question for you (or others). I am taking Plaquenil and I know that it is really an antimalarial drug, but is it also considered an immunosuppressant? I think sometimes I have seen it referred to as such and sometimes not.

 

Warm wishes,

Heidi

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I am on Cyclophosphamide or Cytoxan via IV - it also comes in a pill form. I was put on it in Sept immediately after being diagnosed in Aug 06. My doctor said we need to stabilize my out-of-control immune system through aggressive Cytoxan treatment, and then use something of lesser strength, like Imuran. Cytoxan has been shown to be effective in controlling what I have, which is Interstitial Lung Disease caused by Systemic Scleroderma.

 

It is a form of chemo, six one-month treatments and I have read somewhere that it is a quote "sledgehammer to your system". I will have my third of six treatments Tuesday. My first wasn't bad. No nausea just tired. The second made me feel very frail and a little nauseous but each treatment has left me breathing much clearer.

 

The nurse has told me that by the fourth treatment my hair may start thinning but rarely will it completely fall out. She said that most patients just wear their hair in a ponytail a lot more.

 

Being new to this disease and thrown into a whirlwind of treatments and tests, I am welcome to any information, comments, etc. people may have to offer.


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Heidi,
Good question! I've read where plaquenil has been very effective for some CTD, but I've never seen it referred to as an immunosuppressant. So I found this on the Lupus page here at ISN.

How Do Anti-Malarials Control Systemic Lupus Erythematosus?

"Antimalarials appear to interfere with immune cellular function. The antimalarials are weak bases and can alter the pH inside the cell, thus interfering with intracellular enzyme activity that depends on a more acidic micro environment. When this occurs, there is an anti-inflammatory effect. Many chemicals that participate in the inflammatory cascade are altered, and blood is thinned due to alterations in platelet aggregation.

It is also known that antimalarials protect against the damaging effects of ultraviolet light and can improve skin lesions.

In addition, antimalarials combine with certain chemicals or groups of proteins that play a role in the immune response. Antimalarials have an effect on immune mediators, such as cytokines. They decrease auto-antibody production, inhibit the proliferative response of lymphocytes (B and T cells) that are activated, and may have a direct effect on DNA. In these ways antimalarials have the potential to put the disease into remission."

After seeing this I think I'm going to talk to my rheumatologist about it. Looks like a possibility.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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I was prescribed 2000mg Cellcept immediately after my diagnosis in Jan of this year due to my lung involvement.

 

I only had some very mild, very brief, sharp stomach pain the first two days. It felt like little needles poking me in the stomach and only lasted about 5 minutes each time.

 

I really have no idea how well it has been 'controlling' my progression. I mean, how WOULD you know if it's doing any good? Maybe without Cellcept, I would be at the same place - do you know what I mean?

 

My PFTs have been alright except for my diffusion rate which has gone from 70% to 67% but that could be attributed to diferent machine, different tech person...

 

I can say that I noticed a decrease in my muscle pain and fatigue after going on Cellcept. Not that its gone mind you, just decreased.

 

Well that's all I can think to say about it except that it's EXPENSIVE if you don't have decent insurance! Like $700.00 for 100 at 500mg. Ad for me, $170 after insurance. :angry: ANd NO generic of course :angry: :angry:


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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What immunosuppressant(s) are you taking?

 

CellCept, 3 grams a day. For the first six months, this was combined with Prednisone. I do not think they combine the two anymore as I think it was proven ineffective.

 

 

What side effects have you experienced?

 

Tiredness, but may just be disease and not a side effect. At first I was sick to my stomach and weak, but this could have been other reasons. I have not been sick with cold, flu, etc since I began taking the drug. I am amazed really....I use a nasal wash every day....I am sure that helps a lot.

 

 

How has it controlled your disease(s)?

 

My PFTs have declined but I am not as short of breath and I feel better now than when I first started. I've had about five CT scans since I began treatment and they have stayed about the same. I feel better although tests do not show I have improved.

 

 

If you are NOT taking an immunosuppresant, why not? NA

 

At what point after diagnosis were you put on immunosuppressants?

 

Two months after diagnosis.

 

This is a great topic...I am looking forward to hearing replies.

Good luck with your decision!

Jennifer

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Hi Janey,

 

What immunosuppressant(s) are you taking? - My doctor tried different medicines, including Plaquenil, but it was the combination of prednisone and methotrexate that helped with my symptoms and brought my CPK level down(CPK relates to the Dermatomyositis that I also have). I was later changed to leflunomide(ARAVA) because I did not tolerate the methotrexate well.

 

What side effects have you experienced? - I only noticed side effects from the methotrexate which included body pain and just feeling awful for a day or two after taking it. I did experience a problem with heart arrhythmias that my doctor said might have been caused by the prednisone, but diffuse scleroderma can also cause arrhythmias.

 

 

How has it controlled your disease(s)? - The meds make my diseases more managable and seem to have slowed the progression. Before taking the meds symptons seened to come on progress rapidly.


Ron

 

Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.

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Hi Janey,

 

I am taking Plaquenil which is an immunosuppresant and an antimalarial medicine. I was on it for two years and they thought I had an eye problem so I went off of it for four months. My pain level and ulcers came back with a vegeance. My eyes were fine so I got to go back on it. I have had very good success with it. I have Mixed connective tissue disease. Susie54

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Hi again,

 

Like mary, the Plaquenil has been GREAT for me! I never experienced any side effects (that I was aware of) and it really helped with my fatigue and muscle pain. I had a girlfriend, however, who couldn't tolerate the Plaquenil at all. It just seems that with so many of these drugs, it is hit or miss, trial and error!

 

Warm wishes,

Heidi

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Hi Janey,

I've been wondering how you've been getting along. I sure hope you find something that agrees with you and most of all, helps slow--better yet--stops! your disease progression.

I take plaquenil and cellcept. I have an overlap of limited sclero and lupus. I was put on plaquenil immediately. I didn't realize how much it helps with aches/pains until I had to be off of it for several months due to elevated liver counts. Cellcept was prescribed at 500 mg/day about 8-9 mos later when I wasn't improving much at all; increased to 1000/day when my lung CT and PFT were a little questionable. It is now at 2000 at day due to the encephalopathy.

Benefits: for the sclero, the skin on my hands and wrists has greatly improved. It is much softer and my sausage fingers are more like little weiners now :-). Lung wise, the last PFT still showed a mild decrease in the dlco so I'm having another one next month. For the encephalitis, it's doing a good job bringing the thyroid antibodies down. However, the symptoms do not correlate to the level of antibodies unfortunately. (And my insurance issues are still not settled. Oh, how I long for some IVIG!!!)

I have had 2 side effects but I consider them to be a fair trade off. Every now and then I will have stomach upset/pain. However, the "runs" (I will not attempt to spell the "d" word) is a possible side effect. For me, it has simply relieved my constipation. Sometimes a little too freely, but this girl isn't complaining.

Keep us updated on how you are doing and what decision you come to.

emmie

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Hi guys, here we go (takes deep breath....)

 

When I was diagnosed in August '05 my rheumatologist, who is part of a sclero center in Philly, put me right on Prednisone and Penicillamine (he is a believer- he told me that of the five sclero centers on the E Coast, two use the D-Pen and three do not, but he tried it anyway.) The D-Pen lasted two months, when I developed severe myositis. That was that.

 

The we tried methotrexate (MTX) 8 tabs once weekly. I felt fine, less achy etc and only a little nauseated. But it made my liver unhappy. That was that!

 

Next came the Imuran. He raised the dose over a three month period to 150 mg per day, which made me feel like I had the flu all the time, sleeping, nauseated and just plain icky. I stopped it myself and told him I'd had enough and would not go on Cellcept. Leave me on the Prednisone, it works ok and I don't want any more nasty drugs!! That was June.
Now came the hard part- the steroids started wreaking havoc in my body. BP elevated to ridiculous levels, blood sugar to the point that I'm now on insulin shots. Oh, happy day.

Tomorrow I see the rheumatologist. I think I'll give in and try the cellcept. To date, none of the immunosuppressants have helped stop the progression. The other option is to forget the steroids and everything else. He tells me the disease will just run wild then.... this stinks, stuck between the rock and the hard place. I'll post again tomorrow and let you all know what he says and what my decision is. Anyhow, good luck to us all.

 

Love,

 

Mary in Philly

oh, ps, I asked about Plaquenil and he said it's for Lupus patients and has not shown effective with sclero folk... but hey, it's worth a try!


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

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Hi Janey:

 

I'm currently NOT on any immunosuppresive drug b/c my scleroderma is in remission at the moment.

 

I hope you find a suitable AND effective alternative to the metho.

 

Best of luck,

 

Claudia

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Hi Janey good questions!!

 

As for me I am not on one as of yet and I think it is because of my liver. I had my biopsy on Friday so as soon as the results are in I should be going on a new med but what it is, I do not know. Last I talked to my GI doctor she was putting me on an anti rejection med. My rhum. was not putting me on anything until she saw how I was on my thyroid meds, so right now most of my treatment is a wait and see type of thing. Aren't I the lucky one. I wonder how many others are going through this wait and see thing also?

Hugs,

Patty


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

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Hello janey,

 

I take Plaquenil. I have taken it for a while now. I started taking it when I couldn't push the grocery cart for more than a half hour without being in pain...just for an example. Also when the nausea and the fatigue happened 3 and 4 times a week.

I did have some lower intestinal issues, but thats usually when I didn't take it with food as directed.

I don't have Lupus, but I do have MCTD and it has helped me tremendously.

I was told that it was one of the 'lighter" immunosuppressants, so it would take 3 months to really start working.

Hope this helps...


*WestCoast*

 

********

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Hi Everyone -

 

I'm on Plaquenil and have been taking it for almost 7 years now. It really does help with my fatigue and pain. I thought I new it all once and cut back my dosage from 400 mg. per day to 200 mg per day. THAT IS WHEN I found out how much it does for me. At the beginning it made me pretty sick to my stomach and I love so much hair, it was like I was on chemo. but that all evened out.

 

 

Pam


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Janey

 

Birdman is on Cellcept and plaquenil. Don't see much change. Goes back to Duke Dec 8 maybe we will know more then.

Birdmans Wife


Hugs for All,

 

Julie (Bird Lady)

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Hi my name is Cathy. I just went to my rheumatologist today. I asked him about some of the drugs that they use for scleroderma. Like the stuff such as d-pen and a few others can't remember there name. but he said he would not prescribe them. that I could do a clinical study, which I'm very interested in doing.

 

Does anyone know about the studies or know where I could do one? Or how they have came about these drugs. I've had scleroderma for about 3 years but just been diagnosed in December. I know there has to be more than what he has offered, pain pills. I also suffer from fibromyalgia. If anyone has any ideas, please send me a PM or email me or anyone that would like to talk about the disease. I believe you can't suffer on your own you need friends. And it helps to have a friend that knows how you feel.

 

Lots of love,

cat hartley

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I know that besides asking your doctor, many websites offer clinical trials. Here's one I recently stumbled upon. I don't qualify personally, but it's worth looking into. It's called the SCOT Study. SCOT is a clinical research study designed for people with severe forms of scleroderma. SCOT stands for Scleroderma: Cyclophosphamide Or Transplantation. The SCOT study will compare the potential benefits of stem cell transplant and high-dose monthly cyclophosphamide (Cytoxan) in the treatment of scleroderma.

 


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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WOW - Thanks everyone! You all provided tons of very valuable information. I've been looking at Cellcept, but my rheumatologist said it hasn't been proven to help polymyositis which I also have along with dSSc. I had never considered plaquenil, but now I'm going to have to do some research on that and ARAVA was a new one. So I'll check that out as well.

 

Right now I am considering coming off immunosuppressants all together at least for a few months. I actually have skipped my last two injections (a big NO NO I know!) I've been on the MTX for over 3 years, 2.5 years at maximum dosage (25mg/wk injections). 1.5 years ago I plateaued based on my CPK staying around 400 so that's when I was put on the IVIg infusions which have been WONDERFUL! Emmie, I hope you get your approval soon - that's my miracle treatment. However, the rheumatologist didn't decrease my MTX dosage! So I'm taking that task on myself.

 

As I mentioned in a previous posting, I recently tried to switch over to Imuran and that put me in the ER so back on the MTX. Now that I'm taking Bosenten for my lungs, the concept of taking two drugs that affect the liver just doesn't compute. Also, MTX can cause lung fibrosis and the Bosenten is designed to correct lung fibrosis. So WHY am I taking them simultaneously? The research I've done recently has lead me to think that some, if not all of the fibrosis is due to the MTX. My pulmonary doctor wants me off it!

 

So I've decided to tell my rheumatologist I want off immunosuppressants altogether for a while. I get a whole round of tests done every 6 months and bloodwork every month, so if a problem occurs we'll catch it early. The IVIg treatments do wonders for both the poly and the sclero, my antiarrhythmia drug is working great, and now I'd like to give the Bosentan a chance so I can breathe again. I don't know if it's my imagination or not, but I seem to be breathing better the past couple of days. Last night I didn't have my usual 5 minutes coughing spell when I got in bed. So we'll see.

 

Peanut - I did contact the SCOT Trial about eligibility. I figured that I would not be eligible due to my pacemaker (complete heart block thanks to sclero). Well, I was right. That automatically knocks me out of consideration.

 

Thanks again for all the wonderful information. You guys are the greatest!!!

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Janey,

 

I think your plan makes sense. I don't get taking mtx with pulmonary issues when it's known that mtx can possibly cause fibrosis along with the possibility of liver injury from all the meds etc. Good luck with this plan.

 

I'm also glad to hear that you've been able to get to bed without coughing fits--it's the little things we appreciate! I really hope this gets you on the right track.

 

xoxo emmie

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Wow

All this information is interesting. My hubby has diffuse sclero. He started on Plaqunil right after diagnosis in April of this year. He has done well on it. Just went to eye dr. this week. No signs of damage. He is also on Cellcept-2000mg twice daily. He does not seem to be slowing the progression of the disease. But as some stated--who knows. He will begin Cytoxan and IVIg treatments on Thursday. His rhummy was not pleased with the Cellcept progression. We hope this will work. He can hardly move without being in severe pain. He also either stays on the couch or in bed most of the day. We went on a family outing yesterday and took the kids to the movies. He had to come straight home and go to bed.

 

Everyone- you are in my thoughts. I am a spouse and I can only imagine all this from my hubby's experience. I hope all people with this disease will be granted the strength to get through this.

 

Lori


Lori

Scleroderma Spouse

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Lori,
I'm so sorry to hear about the problems that your husband is having with his dSSc and all the pain he is having to deal with. Sounds like his rheumatologist is trying all sorts of stuff. Is he seeing a sclero specialist? If not, I would highly recommend it and at least make sure that the rheumatologist he is seeing is "experienced with", not just "familiar with" dSSc.
A couple of questions:
When he starts a new treatment, does he come off the old one? (Will the rheumatologist take him off the plaquenil and cellcept by Thursday?)
Why is he getting started on Cytoxan AND IVIg on the same day? That seems extreme. Does he know that the first IVIg treatment usually takes 5 days? My first 3 treatments were 5 days, then we decreased to 4, and now I'm at 3.

I've given you a couple of links that will take you to some studies on Cytoxan and IVIG for scleroderma. Cytoxan has proven to be very helpful especially with lung involvement. The IVIg is good for the overall inflammation. It's help a lot with my muscle inflammation and joint pain. Hopefully it will help the hubby as well.

Please let us know how he is doing and how the treatments go on Thursday.

BTW - Welcome to our forum!

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Lori,

I'm in the middle of Cytoxan and my breathing is clearer and my skin feels so much better. It is hard but I'm feeling better. I tell my husband, it's weird to feel so bad to feel so good. Hopefully your husband will respond well.

 

Best of luck,


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hi, my name is Laura. I'm 40 and I work full-time as a RN in a MICU. It took me almost 2 years to find out what was wrong with me. In 4-06 I was diagnosed with MCTD and started on prednisone and plaquenil. In 9-06 my rheumatologist added methotrexate for increased skin problems and shortness of breath. I have the start of ILD and now he thinks I'm progressing to full scleroderma. On Monday I have an appointment at the Cleveland Clinic Scleroderma center for a second opinion on further treatment. My rheumatologist is not sure what to do with me. The only thing I have noticed that's better since being on the meds is less overall joint pain. The fatigue and breathing problems are still there. My job is very physical and it's getting harder to do.

 

I really don't notice any side effects. So many things come up or change so frequently that it is hard to tell what is the disease and what are side effects of the meds. I did stop taking the prednisone in late October, too bad that hasn't helped me lose any weight. I have gained 30 pounds since getting "sick" in 11-2004.

 

I don't think things are contolled. My DLCO has dropped from 92% to 83% in 1 year till diagnosis. Once treatment started I went from 83% to 81% in 4 months. I am curious to know if that is a significant drop. My rheumatologist and general practitioner felt that it was very serious, but a lung doctor I saw didn't seen phased by the 9% loss in 1 year. I know that my DLCO may seem high to lots of you, but it scares me because I feel every bit of the drop.

 

Sorry this is so long. I appreciate everyones post. I have learned so much from everyone.

 

Laura

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Laura,

Welcome! I'm so sorry that you are here due to you diagnosis of MCTD and problems associated with it. I think it's great that you are going to the Scleroderma Center, especially since your rheumatologist doesn't know what to do. We all need someone that knows what they are doing and confident in doing the right thing for us. We are all different and what works for one, may not work for another.

 

I too have MCTD (dSSc and polymyositis). I was never put on high dose prednisone but started right away on MTX. Within 2 months I started seeing significant improvements in all my symptoms including the fatigue and breathing problems. Unfortunately, after 3 years I have started developing some lung involvements and the SOB is back but in a different way than 3 years ago.

 

I'm running into the same problem that you are in that different doctors see our test results in different ways. My DLCO has been steadily dropping over the past 3 years with a 4 - 8% drop every 6 months. In september I started with a new pulmonologist and, after reviewing the PFT's and Eco's, she said it was past time to start treating my lung problems. I told her that the pulmonologist I saw in January said I didn't have any lung problems. Her comment was "Well, I'm going to have to disagree with that diagnosis." My dlco is at 64 and my PA pressure (based on the Eco) is at 40. That's been steadily increasing from a baseline of 23 over the past 3 years. So I finally have a doctor that recognizes a problem and wants to stop it before it worsens. So I guess my point is that one doctor may see your 9% drop as insignificant and another may not. It will be interesting to hear what the specialist has to say.

 

Please let us know how your appointment goes. If you have any questions prior to the appointment or just need some support, please let us know. Lots of great people here!

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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