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Help with Meds Please...

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#1 RobinAustin


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Posted 12 June 2008 - 04:28 AM

Hey again ... I've scheduled my "med chat" appt for next Thursday (19th I think). I was hoping all of you could help me out with something. I know everyone responds differently to meds but if you have ILD/PF, what meds have you been prescribed? What were the side effects and how severe were they? Which meds helped the most and in what way?

I know some of you have taken methyltrexate and cellcept but there was another one I remember reading about but can't find right now ... it began with the letter C? Cytoxin? Whatever it was it sounded pretty toxic so ...

Thanks in advance ..

#2 Shelley Ensz

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Posted 12 June 2008 - 09:51 AM

Hi Robin,

What you said is so true, that everyone responds differently to meds. Also there are many considerations, such as additional symptoms and various medication interactions, and everyone with a different stage of disease. So the most worthwhile thing of all will be your scleroderma expert's opinion on what is the best for you, given your stage of disease and in light of your entire medical history.

It is a great idea to also research the meds via our main site, under both Medications and Clinical Trials and Treatments, and to especially look regarding your symptoms, such as on our Pulmonary Involvement pages.

With methotrexate, there is an increased risk of pulmonary fibrosis. For cyclophosphamide, there are somewhat mixed reviews, in that the latest study showed, "One year of cyclophosphamide, (CYC) improved lung function, skin scores, dyspnea, and health status/disability, effects which either persisted or increased further for several months after stopping therapy. However, except for a sustained impact on dyspnea, all of these effects waned and were no longer apparent at 24 months. PubMed. Am J Respir Crit Care Med. 2007 Nov 15;176(10):1026-34.

For some of us, the lung fibrosis was caught after it had wreaked its damage and when there was no longer active inflammation going on, in which case no treatment is necessary, as things had already calmed down on their own. But then regular testing is needed just in case it happens to reactivate at any point.

Good luck in your discussion with your doctor, and let us know what you find out.

Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#3 Gidget


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Posted 12 June 2008 - 03:02 PM

Here's what I know which may not be as accurate as Shelley's response.

I have ILD and the treatment that I underwent was 6 months of IV cyclophosphamide followed up by cellcept which is an immunsuppresent. The cyclophosphamide was supposed to slow or halt the progression of the ILD while the immuno was to maintain the slower progression. Basically, the cyclophosphamide was to hit the disease with a sledge hammer to get it under control. The difficulty with cyclophosphamide is that it is toxic and that the results as to whether or not it worked is not known until after you stop taking it. For me, I did great on the cyclophosphamide. My PFTs stabilized, my skin softened, and other than a couple of days a month while on it, I felt in general better. For me the cellcept was a different story. I did horribly on it -- was dizzy, lethargic, had break through bleeding, etc.. So, I was only on it for 3 weeks and then pulled off when the bleeding started. It was suggested that I try Imuran (another immuno) but I decided not to take it. In the end, I decided on the Gleevec trial. So that is where I am now.

As far as what meds your doctor will suggest, it will depend on how fast the disease in progressing. For me, my lungs were tanking, so the cyclophosphamide was really the only choice to try to slow things down. For me it worked, however, my doctor has told me that if I have another flare up with my lungs, the cyclophosphamide will not be able to stop it a second time and at that point I really need to see stem cells as my only option.

The point is that the disease is active for a 3-5 year period and then it tapers off. So, you really want to be sure that you end up in the best possible place by getting the best treatment as what you end up with is what you end up with. For me, I wanted aggressive treatment although sometimes the risks can outweigh the benefits. I'm not sure if I answered your question but good luck. Gidget

#4 janey


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Posted 12 June 2008 - 03:09 PM

I have a mild pulmonary fibrosis. As soon as the CT scan showed scarring in the lower lobes I was taken off methotrexate. As Shelley mentioned, methotrexate has been known to cause a medication induced pulmonary fibrosis. I was placed on oral cyclophosphamide, but didn't handle that very well at all. Oral cyclophosphamide was the medication used in the study that Shelley mentioned. Many people have been given IV cyclophosphamide with mixed results. I have been on cellcept now for over a year with favorable results and no side effects that I'm aware of. All of these medications fall under the category of immunosuppressants.

Shelley provided some excellent links. I'm going to add one link that takes you directly to the ISN page for pulmonary fibrosis treatments. Since you will be having a med chat, please make sure and review some of these studies. I'm sure you'll find all of this information quite helpful.

Please let us know how your chat goes.

Big Hugs,

Janey Willis
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#5 barefut


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Posted 12 June 2008 - 03:33 PM


I have mild/moderate ILD. Was put on 2000mg Cellcept 2 1/2 years ago with little to no side effects and have remained stable since. Pulmonary doctor wanted to wean me off after 2 years but rheumatologist wants to keep me on for fear I may suffer increased muscle/joint pain and stiffness.

I'm still on the fence about tapering off.

#6 Clementine


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Posted 13 June 2008 - 02:32 AM


I hope you find something that works for you. I have been taking Cellcept (3 grams/day) for over 3 years. I don't think I have any major side effects from it. My labs always come out normal. I am really tired all the time and my muscles get weak from the slightest lifting or chore. I am not sure if that's just scleroderma related or from one of the many meds I am taking. I don't pick up infections either, I feel healthier from that perspective than I did before using Cellcept. My lungs are stable, so all in all, I think it's working for me too.


#7 LisaBulman


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Posted 13 June 2008 - 06:30 AM

Hi Robin,
I have ILD and was on IV cyclophosphamide. It was not easy but it worked. I was fatigued for a few days, lost a ton of hair but it held my ILD for a year and a half. It has since started to slowly slip and at the current time I am in a lung study. My dr has never tried cellcept or anything like that on me. Just hoping something positive comes out of the study!


Lisa Bulman
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#8 RobinAustin


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Posted 14 June 2008 - 02:55 AM

Thanks everyone ... I appreciate the input. I'll check out the meds pages and hopefully will be able to discuss my options intelligently with my Dr. next week ... got the bronchoscopy to get through first :o Wish me luck!