Hi Rachael,
Your rash has started after almost two years treatment with Revlimid - I don't think that is so common. The rash is supposed to decrease after a few weeks but your rash has already been there during two months. Then they recommend that the drug is stopped and when the patient starts taking the drug again the rash shouldn't come back. You are different from most patients.
1. If you don't treat the rash it will perhaps not be light any longer and the eyelids are very sensitive.
2. As far as I understand the rash doesn't indicate more serious damage in your body.
3. In fact Revlimid in combination with steroids can increase HGB. They function in different ways - steroids stimulate more immature red blood cells and Revlimid more mature red blood cells.
http://www.ncbi.nlm.nih.gov/pubmed/21527522. As you know most patients now take steroids during 3 months when they start taking Revlimid or Thalidomide.
A low dose of steroids for example 5 mg Prednisone could be OK during a long time even if there is risk for osteoporosis. Many patients with MDS have osteosclerosis (very hard bones) and there is hardly any risk for osteoporosis.
When I started to take Thalidomide two years ago I asked my dr if I could continue with Prednisone 5 mg and he said that it was OK. I have osteosclerosis - when they measured my bone density the T-score was more than 3 (that is the value was 3 standard deviations over the normal score). The Z-score (when they compare with persons of my age) was more than 5.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006, Thalidomide + Prednisone since 2010 with positie effect