Hello Val
Glad to hear your good news. Have you thought of taking magnesium against cramp? A friend with MM found that it really helped.
Annette

Hello Jill
I have been on Revlimid for 3 years ( a low dose of 7.5 ). The only significant side effect for me has been diarrhea, unpredictable and a great nuisance. My specialist suggested I could try over-the-counter diarrhea suppressant containing loperamidehydrochloride. This really works for me. I take it seldom but it is good to know it is…[Read more]

Hallo Lizzy
My experience might help you. Since diagnosis in March 2010 I have taking part in a study comparing results between the use of thalidomide and lenalidomide (Revlimid). I was given lenalidomide 10mg. and the effect on me was similar to that described by you. I had to smother myself in creams and lotions. I was like a walking snowstorm…[Read more]

Hallo Deborah
I am a complete layman so don't take what I say as gospel. I have heard that a vaccination is available but it is made from a weakened live virus and is therefore not suitable for anyone with reduced resistance.
I can't say what is customary in Britain as I have been living in the Netherlands for over 30 years. My treatment here is…[Read more]

Hallo Deborah
You enquired about Velcade? About a month ago I attended the National Myeloma day in the Netherlands. Dr.Lokhorst gave a lecture on problems related to MM medication. He said that there is 50% chance of getting shingles if you take Velcade and he always prescribes zelitrex for protection. Believe me, you do not want to get shingles…[Read more]

Hello James
I am receiving maintenance treatment and have been taking lenalidomide (trade name Revlamid) for two years. I have no neuropathy whatever and at the hospital they say that this is one of the advantages of lenalidomide. I am taking part in a trial and was randomised for lenalidomide and the other group received thalidomide. However…[Read more]

Hello Debs
I have now been taking Revlimid for almost 2 years but have not suffered any symptoms such as described by you. However you all (who have replied) seem to be taking such a high dose. I take 7.5mg and my paraprotein is still slowly going down. I wonder why there is such a difference in dose.
Annette

Hallo all
I just want to chip in with something I heard last week when attending a regional meeting of MM sufferers (in the Netherlands). When talking about the problems of peripheral neuropathy one person said that for her it had been substantially reduced by taking Lyrica. She has now stopped taking Lyrica And the neuropathy has not returned.…[Read more]

Hallo everyone
I find it helpful to read everyone's experiences, so I decided to add my bit. My name is Annette and I am British but have lived in Holland for over 30 years. I was diagnosed with MM in Feb.2010 when I was 66. My paraprotein level was way up, I think in the 70's. I was put onto 10mg. Lenalidomide (Revlimid) a day, almost…[Read more]