Thal minor and autoimmune disease

Hi,
Was wondering if anyone  else  has experience or advice.  I am supposed to start cellcept  (immune  surpressant)  today. Doctor seemed a little  concerned  about  my Hb already being low since it may go down further if myelosurpression. I have needed  a transfusion  once during  first pregnancy but managed other two fine.
Zahra

Why was cellcept prescribed?

Hi Andy.
The cellcept  is for pan uveitis  in both eyes. For four years it was only anterior so needed only topical steroids. Then for two years  pan uveitis which  is now affecting vision. Only solution now is immune surpressant. This follows a diagnosis  of possible mixed connective tissue  disease 11 years ago which pretty much  disappeared  except for Hashimotos thyroiditis  and now pan uveitis
Zahra.

http://www.drugs.com/sfx/cellcept-side-effects.html

Hematologic
A well designed, placebo-controlled study noted that hematologic adverse events resolved within one week. Hematologic side effects tend to occur early in the course of treatment and be dose-related. Careful monitoring of hematologic parameters may be warranted early in the course of therapy.

A well designed, placebo-controlled study of mycophenolate mofetil (the active ingredient contained in CellCept) (2 or 3 grams daily) combined with cyclosporine and corticosteroids versus cyclosporine and corticosteroids alone for prevention of acute renal allograft rejection reported a similar frequency of adverse events. A trend towards higher frequencies of leukopenia (11% to 14%) and anemia (4% to 7%) were reported in the active groups. Pancytopenia and agranulocytosis occurred rarely. The proportion of patients with leukopenia between 31 and 180 days after transplantation was 3 times higher in the mycophenolate mofetil group. All observed hematologic effects resolved within one week. Adverse effects occur with a higher frequency as the dose exceeds 2 grams/day.

Hematologic side effects have included dose-related leukopenia (11% to 35%), anemia (25%), and thrombocytopenia (9%). Severe neutropenia has occurred in up to 2% of patients. Cases of pure red cell aplasia (PRCA) have been reported in patients treated with mycophenolate mofetil in combination with other immunosuppressive agents. A case in of mycophenolate mofetil causing deep venous thrombosis has also been reported.

My comment on this is if most adverse events happen during the first week, why don't the doctors use some common sense and start patients on a reduced dose (I suggest this when starting most new drugs)? I don't think you have anything to worry about taking this drug over time. Most side effects occur during the first week and then resolve. If possible, begin with half a dose the first week.

Hi Andy,
Thank you for taking the time out to research  this. You
are right about the dose advice. My rheumatologist  advised starting at a quarter dose, increasing  to half dose after a week and full dose after two weeks. I  It's been a tough choice to take this as it means giving up on HLA matched sibling but I decided my vision is necessary  to take care of my son in the future. My hopes now lie with gene therapy.
Zahra

Hi,
Had my floresciene angiography 6 months post cellcept. It showed leaking vessels meaning cellcept didn't work. Now I've been advised to reduce cellcept to 1 gm and add on cyclosporin going from 50-75 & finally 100.
Does anyone have experience with cyclosporin especially in combination with cellcept?
What to expect...look out for?
Zahra

Hi,
Have now started steroids 40mg along with 1g of cellcept and cyclosporin 50 mg which will be slowly increased to about 150 mg.
Got back my last blood report. Hb has gone down from 10.6 initially to 9 after 6 months on cellcept.
TSH is also up to 3.8. Feel very weak and tired.
At what Hb is transfusion appropriate for thal minor?
I have had one transfusion 16 years ago during pregnancy but don't remember what the hb was.
What else can be done to increase Hb?
Zahra

The standard rule is transfuse when the Hb drops below 7. I'm curious if your vitamin D level may be a factor in your tiredness. Has it been checked since you've been using cellcept?

Yes, it has been checked and as usual is low so have been taking 50000IU
a week but not regularly.  Pretty sure it won't do anything. For me the only thing that raises my vit D is the injection but my rheumatologist thinks its not low enough for that at 17.
Funny thing is my husbands vit d is 9 and he is feeling fine. He qualifies for intramuscular vit D.

Zarhra ,,,I don't have any advice but am hoping they can find some answers for you and you feel better soon..I'm exhausted just reading your post ....hoping you're able to get rest!!

The article I previously posted addressed the combination of and cyclosporine. The adverse effects were similar to the combination of Cellcept and steroids.

I don't know how much it can help to counter the side effects but your vitamin D level is quite low at 17. I would advise the 50,000 IU dose weekly. Adequate D ensures that your other nutrients are absorbed properly. For example, at your level, only about 10% of calcium is absorbed. Once it's above 30, you will absorb about 30% of your calcium intake. It will also to work to improve your immune system which can suffer while using these drugs.