janey

Do You Take An Immunosuppresant Drug?

26 posts in this topic

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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Thanks janey and peanut. Yes he sees a sclero specialist at Duke. He is in on all the research. He actually has a SCOT's trial. My hubby does not qualify. His treatments according to the specialist is on day on cytoxan and IVIG and on day 2 IVIg. I did find a website that said 5 days. We have to see the oncologist at the site we are going to before he starts the treatment on Thursday. I am not sure if the number of days will change after seeing her. Janey I have not looked at the links you sent but I will when I finish this message. Thanks again for the support,

 

Lori


Lori

Scleroderma Spouse

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