Cellcept or Prednisone?

I know there are a few of you out there who have been on cellcept or have some knowledge about it who may be able to advise me if I am just being a worried parent or have some reason for concern. My 31 year old son has been on Prednisone for long periods of time over the last 23 years for autoimmune hemolytic anemia and ITP. It works well for him with minimal side effects. Now, his latest hematologist doesn't like prednisone so he started him on cellcept with the plan to wean him off of prednisone. So far his counts are dropping on it so he doubled the cellcept to 2 Gms and increased prednisone to 10 mg a day. How will he know which is working? I have a few concerns. First he has a family history of skin cancer and is not likely to use sun screen regularly. He also has had GI problems. And he works in a hospital. He has not been immune suppressed on prednisone: in fact he got chicken pox and later shingles when he was off steroids but he might be immune suppressed on cellcept.
I plan to go with him to his next MD appointment in Jan. Any insight would be greatly appreciated. Joan




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Hi Joan.

I can sure understand your concern. I am sort of in the same situation so I understand the dilemma. I am using those treatments for Lupus though, not ITP, but the risks are the same.

First, long-term Prednisone will cause damage. I went for a long time with no real problems either, but it did catch up to me. It will catch up to your son too. No one can stay on Prednisone for an extended time without risks. It's possible that your son got chicken pox and shingles because Prednisone was still in his system; it takes a long time for that to totally leave the body and a person on steroids is very susceptible to both chicken pox and shingles. Whether or not a person is immuno-suppressed also depends on the dose; a low dose is not nearly as bad as a high dose for long periods of time.

CellCept is a nasty drug. I tried it for a while but couldn't function at work so I stopped using it. Some people have no problems though and are side effect free. CellCept is a perfectly good substitute for Prednisone and is used as a steroid-sparing drug quite often. Many doctors try to get patients off of Prednisone by using other immuno-suppressants such as CellCept. As for whether or not he will use sunscreen - it is supposed to be used with Prednisone also, as Prednisone also thins the skin and causes it to be fragile and sun sensitive. Your son is 31 years old; old enough to take charge of his health and take appropriate action to prevent further problems. If he will not do that, there isn't much you can do about it.

What about other treatment choices? Has he tried Rituxan or one of the TPO's? How are his counts and symptoms?

Hi Sandy, Thank- you for your input. He got IVGG when he was diagnosed with ITP in 1989. It didn't work and made him sick. He received Rituxan 6 years ago. That worked well. Now they do not recommend Rituxan for people with ALPS. While he has clinical symptoms of ALPS he does not meet the criteria because his DNT is 0.9 instead 1 or greater. However, there have been false negatives when patients were on steroids. His main problem is his RBC's not platelets so TPO's wouldn't help. His counts are well maintained between relapses with doses of prednisone 2.5 to 5 mg every other day. Very small doses for 6 foot, 200 pound man. Another concern I forgot to mention is that cellcept and ALPS both put him at higher risk for lymphoma and he has enlarged lymph nodes. I know he should take charge of his health but he just won't question his doctors. So once a year I go with him and voice my concerns. One more thing. Do you know if they adjust cellcept to the lowest effective dose like they do with Prednisone? Thank you again. You have more knowledge about autoimmune diseases than most doctors.

I used CellCept for as couple of years to treat ITP. It worked 'okay'. Looking over my records, it kept my count in the 20k-30k range...with dips down into the 4k range now and then.
Then one day, it simply stopped working entirely and I had to switch meds again.

The side effects weren't pleasant for me and I caught every cold and petty illness that wafted my way.
But CellCept did work for me.....until it didn't work. There are better options though.
.

Okay, there's more to the story. How often does he have to raise the Prednisone dose and to what mg.?

The CellCept dose can be lowered, but he might have to request it. The problem is that CellCept can work very slowly so if the dose is lowered, it might take a while before the affect is noticed and you might not associate a count drop to the lowered dose. Also, doctors tend to use protocol doses and prescribe based on what they feel is an effective dose (even more so than Prednisone), so getting that dose lowered might not be easy. I started at a low dose and was supposed to work my way up. I never got to the raising point because I quit taking it. My doctor said I should not have had any side effects at the low dose I was on. Well, I did.

His hemolytic anemia has relapsed three times since the early 1990's. In 2006 he started on 40 mg of prednisone, was on alternate day doses of 10 mg within 2 months and tapered off over 16 months. In March 2011 he relapsed and started on 40 also and I think he was on 2.5 every other day when in May of 2012 he developed a fever of 103 and Hgb dropped to 5. That time he started 60mg and was down to 2.5 every other day in Sept. when he started Cellcept and his Hgb and platelets started to drop. Currently he is on 10 mg a day. So not a lot of up and down and fairly low doses. He never had any symptoms when his platelets were low except bruising when he was first diagnosed and has not been below 50 thous in 20 years. He gets his blood tested again tomorrow. What side effects did you have from cellcept? My son has had some abdominal pain and fatigue since starting it. I realize In the scale of illnesses here he is doing quite well and I want to keep it that way.

The side effect I had was hard to describe. It was a sort of brain fog...I couldn't think. I'd sit at work and just stare. The ability to do my job just wasn't there, and since it was fast-paced and I had deadlines, that was not acceptable.

Your son does seem to be doing quite well for all that he has going on. A lot of people with ITP and AIHA find that when platelets go up, reds drop and vice vears. It's a see-saw affect that they can't balance. That doesn't seem to be the case with your son.

Making treatment choices if hard, I know. I have to keep doing it for myself too and it's sometimes trading one problem for another. At this point, I'm not sure what has done the most harm; the meds or Lupus. You just have to keep benefit vs risk in mind and try to trust your gut. Let me know how his CBC goes!