Swelling of the face with Revlimid

[choijk]

My father was on 10 mg Revlimid for only 6 days.

Day 1, 2: Dad felt incredible scalp itch. He took benadryl to calm it.

Day 3 - 5: Diahrrea with little bit of blood in stool; diahrrea discontinued, but there still persists little bit of blood in stool

Day 5- present: Face swelling; initially around the eyes and forehead. Still a little bit of itchy scalp. Plus, a rash on both forearms and around the legs.

Day 7: took father to ER and ER M.D. gave him Predisone for 3 capsules.

I would like to know if other patients who have taken Revlimid have experienced similiar side effects. Did anyone experience the swelling of the face with Revlimid?

Needless to say, we had a follow up with hematologist today (Friday) and we have stopped Revlimid. There is still a lot of face swelling but probably due to the Predisone.

Any insight or any experiences to share?

I should mention that dad is also on Exjade, 500 mg everyday.

Plus, a little background of dad: RCMD; platelets and wbc's were in the normal low range, but have always remained steady. The only problem is rbc's with hgb hovering around 7-9. Transfusion dependent every 2 weeks.

[Ruth Cuadra]

Hi, June.

I see that you posted in the middle of the night, so I'm guessing that you are researching and your Dad is off Revlimid. The itchy scalp and face swelling symptoms sound like an allergic reaction of some kind, especially because he's just started the drug. Has the prednisone help relieve those symptoms?

I know he is in good hands with the doctor he has. Please let us know how he's doing.

Take care,
Ruth

[choijk]

Hi Ruth,

Thanks for the post! Yes, dad is now off Revlimid. The Predisone has helped with his face swelling and now he is almost all better. Thank God! I'll keep you posted.

[Tommy Daniels]

I was diagnosed with MDS of the RARS variety in 2005. Though I am not -5q in Dec12 my oncologist suggested I may benefit from Revlimid.

After taking the stuff for about a week I came down with Stevens-Johnson Syndrome. In recent years I've had a propensity for Hives for which I take Allegra daily. My allergy doc who was previously an Internist opined that with a Hives history I was not a good candidate for Revlimid therapy.

If your oncologist suggests Revlimid and you too have a Hives history, be sure and tell him about it. If he discounts it, consult with an Allergy doc before going further.

You do not want Stevens-Johnson Syndrome. I was lucky to recover from it and that it did not progress into the worse form which is TENS (toxic epidermal necrolysis).

In the run-up prior to trying Revlimid, apparently due to FDA requirements for that drug, I had to go through a very thorough interview with the company that makes it. I don't recall if they asked about a Hives history but if so I told them about mine because I gave them every morsel of my med history. Strangely the company did no follow-up with me to find out how it worked, or if there was a bad reaction. Wanting to get the latter on record, I went to the FDA website but couldn't find a way to register my bad experience with it.

[Neil Cuadra]

Tommy,

That's a frightening and cautionary tale. Celgene mentions Stevens-Johnson syndrome as a possible side effect and says that Revlimid should not be given to patients with a prior history of certain rashes, but doesn't specifically mention hives as a contraindication.

If your treatment was not part of a clinical trial then you can report your experience at the FDA's MedWatch site.

[Chirley]

Hi, your post made me wonder if people with MDS are more prone to allergies.

I never used to be allergic to anything then, I suddenly developed allergies to lots of things from medication to tapes and grasses.

I too had Steven Johnson Syndrome but I got mine from iron preparation. I had previously had a reaction to iron (which I have since found out was recorded in my hospital chart as anaphylaxis) which required an emergency response team (can't remember much about it). But, the doctors decided that with massive steroid cover and ICU admission, I should still be given iron. That's when I got SJS.

Now I can't have micro pore, opsite, some antibiotics and I have to have steroid cover to have my routine copper treatments because I started developing a rash and hypotension during treatment.

I was also initially diagnosed with RARS which progressed to RCMD and then
RAEB before I was found to be copper deficient. Copper replacement has normalised (almost) my peripheral counts but there is still a suspicion of underlying MDS.

At one stage my haematologist was considering adding Revlimid to the VIdaza but he never mentioned the allergy problem. I'm glad we didn't have to try the Revlimid.

Regards

Chirley