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Anyone experienced a flare of autoimmune disease starting Revlimid?

Posted by nbadry @nbadry, Mar 4 2:28pm

Hello
I have just completed one cycle of Revlimid 10mg for MDS del5q. However after the first week, a horrible lichen sclerosus flare began, despite already being on potent daily topical steroid ointment for the LS at the time. I'm very suspicious about the connection. Has anyone else had autoimmune flares (especially skin) on Revlimid? I did get a transient rash on my arms in the first week, but I know that's a common side effect. Thanks.
Nicole

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Mentor
Ginger, Volunteer Mentor | @gingerw | Mar 5 11:41am

@nbadry It might be a reaction of your body to the introduction of this new-to-you medication. Everything has to adjust. Have you checked with your medical team to see if they have any insight for you?
Ginger

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nbadry | @nbadry | Mar 5 1:59pm

@gingerw I'll definitely be discussing it when I see them in the next few weeks. This week has been my week off Revlimid and the LS has significantly improved. I'm scared to start the next cycle...but I will. Currently needing red cell transfusion every 3 weeks.

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liz15101 | @liz15101 | Mar 6 2:04pm

On Revlimid for over 4 years and have had minor rashes or itching skin. I have found the pharmacist with the mail order site (Optum) to be helpful with suggestions on dealing with reactions.

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Lee | @marco88 | Mar 7 6:16am

My husband’s oncologist prescribed a “cocktail” of over the counter medications to be taken with each dose of Revlimid to combat the severe rash caused by Revlimid. It works. First, he reduced the Revlimid dose from the traditional 10 mg down to 2.5 mg. With each dose, take two 20 mg Pepcid, one 500 mg. L-Lysine, and one original Claritin pill. My husband does not have the severe rash, no rash at all so far.

Two years ago Revlimid at 2.5 mg kept him from requiring transfusions to keep Hgb at a sustainable level. He was taken off Revlimid because it negatively affected his kidneys. He eventually had a bilateral nephrectomy, now is taking Revlimid again. So far, with the cocktail, no problems.

The three over the counter meds are unlikely to cause side effects, so this is an essentially problem-free possibility to try when other approaches fail to control the severe rash.

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Lee | @marco88 | Mar 7 6:45am
In reply to @marco88 "My husband’s oncologist prescribed a “cocktail” of over the counter medications to be taken with each..." + (show)
Profile picture for Lee @marco88

My husband’s oncologist prescribed a “cocktail” of over the counter medications to be taken with each dose of Revlimid to combat the severe rash caused by Revlimid. It works. First, he reduced the Revlimid dose from the traditional 10 mg down to 2.5 mg. With each dose, take two 20 mg Pepcid, one 500 mg. L-Lysine, and one original Claritin pill. My husband does not have the severe rash, no rash at all so far.

Two years ago Revlimid at 2.5 mg kept him from requiring transfusions to keep Hgb at a sustainable level. He was taken off Revlimid because it negatively affected his kidneys. He eventually had a bilateral nephrectomy, now is taking Revlimid again. So far, with the cocktail, no problems.

The three over the counter meds are unlikely to cause side effects, so this is an essentially problem-free possibility to try when other approaches fail to control the severe rash.

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@marco88 I described the condition as a “rash” - it actually was much more severe than a simple rash; with large patches of raised bumps, inflamed skin interspersed with blotches of speckled red skin, all over his torso front and back, legs, and shoulders. It was somewhat painful and very itchy. So… more than a rash. Is this similar to what others here have experienced?

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nbadry | @nbadry | Mar 10 4:51pm
In reply to @marco88 "My husband’s oncologist prescribed a “cocktail” of over the counter medications to be taken with each..." + (show)
Profile picture for Lee @marco88

My husband’s oncologist prescribed a “cocktail” of over the counter medications to be taken with each dose of Revlimid to combat the severe rash caused by Revlimid. It works. First, he reduced the Revlimid dose from the traditional 10 mg down to 2.5 mg. With each dose, take two 20 mg Pepcid, one 500 mg. L-Lysine, and one original Claritin pill. My husband does not have the severe rash, no rash at all so far.

Two years ago Revlimid at 2.5 mg kept him from requiring transfusions to keep Hgb at a sustainable level. He was taken off Revlimid because it negatively affected his kidneys. He eventually had a bilateral nephrectomy, now is taking Revlimid again. So far, with the cocktail, no problems.

The three over the counter meds are unlikely to cause side effects, so this is an essentially problem-free possibility to try when other approaches fail to control the severe rash.

Jump to this post

@marco88 Thank you…I’ll certainly give it a try. I’m not sure how it will go, as the skin condition is autoimmune and was there before the Revlimid…it has just worsened. Ive also read about Tacrolimus ointment being used, so I’m going to ask the dermatologist. It’s an immunosuppressant, so my haematologist would have to agree. I feel a bit down that the treatment for one condition is worsening the other.

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