janey

Question About Immunosuppresants For Fibrosis

26 posts in this topic

Hello Friends,

Well, I saw the rheumatologist yesterday and now that I'm stable again from the recent septic episode it's time to decide which immunosuppresant to on. Since I need one that helps with the pulmonary fibrosis I have 3 choices:

oral cytoxin

IV cytoxin

Cellcept

Of course the rheumatologist wants to put me back on oral cytoxin since it does have the largest study with positive results. The studies on IV cytoxin and Cellcept for sclero fibrosis are very small so he's not really gung ho on those. However, he did say it was my decision (which I appreciate) because he certainly understands my hesitation with the oral cytoxin. He did admit that it certainly contributed to the severity of the infections and that it's a tough drug to take.

 

On Monday I meet with my pulmonary doctor and will discuss this with her as well, but in the meantime, I'd like to get feedback from real experiences and this is the best place for it.

 

If you have used or are currently using one of these 3 drugs,

How did it help your overall quality of life?

How did it help your pulmonary fibrosis (improve, stabilize, no effect)?

How did it improve SOB and exercise tolerance?

How long did you take it or how long have you been on it, or (with IV cytoxin) how many treatments over what period of time?

How long did it take to see results?

Any side effects?

Would you recommend it?

 

I really appreciate your feedback. :D

 

Big Hugs,

Janey


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 have been on Cellcept (3grams) for almost 2 years. My lungs have not improved, but I do not think I've gotten worse either. My PFTs have declined a little over the years. I have a 6 month follow up for pfts at the end of March so I'll know more then.

 

As far as being short of breath, it's hard to say what has improved that. I am not sure if I was short of breath due to GI issues or my lungs. As you know, I am also on 02 supplement.

 

I tolerate Cellcept very well. If I did not know I was taking it I wouldn't even know. I very rarely catch colds or get sick (which also makes me wonder if Cellcept is really breaking down my immune system?).

 

What I do not like about taking it is that we don't know that much about it in terms of treating sclero patients and when you combine that with the fact that my lungs have not improved and have steadily declined, it's not so encouraging. Sometimes I wonder if I should be on Cytoxan.

 

I have a question....is Cytoxan used more in patients with lung involvement in combination with skin involvement?

Just wondering why it was not an option for me (and I have sine sclero).

 

Janey, good luck with your research. It is a tough call.

Take it easy,

Jennifer

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Great question Janey! I was planning on doing the NWU stem cell but I am having trouble getting BCBS to approve it and I feel in the meantime my breathing is worsening. So, I have the same 3 choices - Oral Cytoxan; IV Cytoxan; and Cellcept. I now that hydration is a big thing for the body tolerating cytoxan and unfortunately I am not a huge water drinker -- so I have decided on IV Cytoxan as I will get hydrated before they administer the drug and then 1 week later they will hydrate me again I am assuming to help flush the drug out of my system. I have found a great oncologist that will take good care of me and basically says that "cytoxan is well tolerated by the body when properly administered". While I like the thought of cellcept, it still seems to be largely unproven for ILD. My plan is to try the IV cytoxan for 6 months and then re-evaluate. Maybe by then BCBS will have approved the SCT. If not, I am probably going to "back down" to a less intense drug after the 6 month timeperiod. I am told that with the IV cytoxan I can expect nausea, sores in my mouth, and thinning hair. Regards Gidget

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Hi Janey,

 

I have been on 2g Cellcept for just over a year. My PFT's have had only minor fluctuations with regard to my diffusion therefore my pulm doctor has deemed my lungs stable. All other aspects of my PFT's have always been normal.

 

I have had no bad side effects to speak of.

 

I have noticed less episodes of SOB since one year ago.

 

I don't know how I can say if Cellcept has really helped to slow progression or not because maybe I would have remained the same without it? Better safe than sorry though I guess. And also who's to say that another drug might have done the same thing or maybe even better things?

 

I don't envy you in the decision you have to make. My pulm doctor didn't give me the choice. I feel like I must be part of their secret study because they don't want me to switch to anything less expensive either. (Maybe THEY could pay for it! :lol: )

 

When I asked about switching to something more affordable both rheumatologist and pulm doctor were very persuasive about staying on Cellcept because as rheumatologist put it, although there haven't been any official studies, they "have had some very positive results with the 13 scleroderma patients that they are seeing who have been taking Cellcept."

 

Wish I knew the difference between Cellcept and Imuran and any other immunosuppressants. If they are all supposed to do the same thing then why would one be better than aonther?

 

Hope this helps you a little in your decision.

 

Good Luck,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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I'm just two weeks in on CellCept 200mg 2xday. Whoo what a ride for me. Nausea, vomiting, diarreaha, sweats but hopefully I'll be able to adjust. If not - I don't know what will come next.

 

My next step will be the cytaxen, not sure what form. I'm going to the sclero guys in S. Carolina - I'm in Florida and all we have here are geriactic doctors.

 

Good luck to you - I'll keep you posted about the CellCept.

 

TJ

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Janey,

You may already know that I just finished IV cytoxan – 6 months/1x month - and now am on Imuran. Gidget, if you get mouth sores you may want to try Lycine. It got rid of mine. Any way...

 

I would say yes, it did improve the quality of my life. My rheumatologist feels I'm stabalizing, my DCLO is up from 6 months ago by 10 points but my lung volume is down a bit... but my rheumatologist says we are trying to treat my DCLO not the volume. My skin is softer. My hair fell out a little but I also started using a special kind of shampoo that encourages hair growth. After a month of use my husband and I have noticed that our hair has really filled in nicely.

 

What’s SOB?

 

It was hard to exercise a few days after, but I did notice that my body learned to tolerate it better. I was also fortunate enough not to have nausea.

 

After every treatment my husband would drive me home and I’d loaf around the house till I’d groggily fall asleep. I immediately noticed the increased clarity of breathing. It felt wonderful.

 

Would I recommend it is a hard question. Each body tolerates medicines differently so I’d say do your own research and don’t rule it out. I was lucky to have no nausea and little hair loss. It is hard on your body and creates fatigue so I’d recommend doing it on a Friday and taking the next day off. I have FMLA so I did it when ever and took the next day off to sleep in and give my body full recovery time.

 

Best of luck in your decision.

 

I'm off to another doctor appointment.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Janey,

 

My reply would be exactly the same as Barefut's. I take the same amount, was given no other choice, my pft's are stable, I have had no side effects. However, my ILD is mild to moderate. I have heard that up to 3 grams a day is a "safe" dose. It is considered to be much more tolerable than cytoxin and less toxic.

 

These decisions are so difficult. Gather the information and I'm sure you'll make the best choice for yourself at this point in time.

 

xoxo emmie

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hi janey,

I'm sorry you're having to battle pulmonary fibrosis. one thing my rheumatologist told me (one professional to another) was never take oral cytoxan. she said so many people develop bladder cancer ( it may take years to show up) after being on the oral form. the iv form doesn't have this problem. this might not be a concern if you are 85 or older ( i know you aren't) . seriously, so many strong chemo drugs can cause major (new) problems down the road and we have enough to deal with. talk to an oncologist about this if your rheumatologist hasn't treated many sclero patients with this drug.

hope this helps

janet

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Hi Janet,

 

I found a page on the Johns Hopkins website which talks about Cytoxan Treatment for Vasculitis

 

Among many other side effects they say:

 

The risk of cancer associated with cyclophosphamide use may continue for many years, even after patients stop the medication. The risk of cancer appears to be dependent upon the length of time patients have taken the medication and the cumulative dosage of the drug. Patients who have taken cyclophosphamide have an increased risk for at least two primary types of malignancy: leukemia/lymphoma and bladder cancer.

 

Makes you think doesn't it?

 

Warm hugs,

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Hi Janey,

 

Well, as you know, I did the IV cytoxan last year. I can't believe that it has been a year since I started it, wow time flies!!! I had it once a month for five months. It was supposed to be 6 but that's when my liver numbers went crazy and they said I had to stop. I went in on Friday mornings, they hydrated me with an iv, gave me anti nausea meds, administered the cytoxan and I went home to sleep. Saturday and Sunday I was in bed, by Monday I was feeling better and Tuesday it was business as usual. My dr told me that the oral cytoxan has higher risks of bladder cancer because it is in your system everyday for a long period of time where the iv is a months dose at once then it is flushed by all of the fluids. You still need to drink, but the risks are less. My body is super sensitive to meds. After my first treatment, (approx. 2 weeks) my hair was coming out by the handful. I went and got two wigs, which I never needed, and a short haircut. As the months passed, my hair got thinner so my haircuts got shorter and shorter. By the end I was just asking my hairdresser for a boys regular. It was a short, spiky do but really easy to maintain and nice in the summer! Now I am trying to let it grow out and all I want to do is cut it all off again!!!!

 

Since I had my pft's this week, my lungs are stable so for me I think it worked. How long will I be able to keep this up? No idea but we'll just keep our eye on it and cross the next med when we get to it.

 

Please let me know what you decide. Good luck.....

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Janey,

When I did my IV cytoxan they gave me Mesna and Aloxi for nausia and bladder protection.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Thanks everyone for your input! It appears that IV cytoxan is used more than oral cytoxan even though the high level studies aren't there to support it. Based on what I'm hearing from you and reading it does appear that the IV cytoxan stabilizes if not provides some improvement.

 

I have been weary of the oral cytoxan since the beginning. My rheumatologist did discuss the side effects and the possibly of contracting bladder cancer or leukemia/lymphoma in the future, even after only a year of taking it (Sherrill - that's how long he plans to have me on it.) Plus you know me - I did my own research. I was drinking tons of water every day so it wouldn't settle in the bladder. The rule that my rheumatologist made for me was "If you don't get up and pee at least once during the night, you're not drinking enough water." I HATE getting up in the middle of the night! I love my uninterrupted sleep and I feel lucky that I'm able to do it.

 

The other problem with the oral is the higher risk of serious infections which I discovered. My rheumatologist casually said "Well, if you get another infection and become septic again, we will definitely stop the oral cytoxan." My response to him, "Excuse me! That's NOT going to happen again if I can help it!"

 

Janet, that's interesting what your rheumatologist told you. Thanks for sharing and it's good to see you posting. On the last visit, my rheumatologist admitted that that IV form was less toxic, but since he had only used it for vasculitis and lupus patients, he couldn't predict the outcome for me. Well, I guess we're going to find out because I think I'm leaning in the direction of IV cytoxan, then he plans to follow whichever I choose (oral or IV) with Cellcept as my on-going immunosuppresant. I'll discuss it with the pulmonologist on Monday and see what she says.

 

BTW - I saw the cardiologist on Wed and he upped my antiarrhythmia drug and I have to start Coumadin this weekend. UGH! So that of course could affect my decision of an immunosuppresant as well.

 

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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Hey Janey,

Clearly you are one to do your research and will decide what is best for you!

 

BTW - I saw the cardiologist on Wed and he upped my antiarrhythmia drug and I have to start Coumadin this weekend.

Will you cut it out already?! Just joking, but one more thing..... For crying out loud! When it rains, it pours!

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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I know, I know!!!!!! I'm definitely on a slow and steep uphill side of this roller coaster. The hubby, who is normally a pessimist, told me this morning that he is confident that by summer we'll be over the hump and coasting. Well, if HE can be that optimistic, so can I! :D

Big Hugs,

Janey


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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