[TinaPParticipant]

Hi all

As part of the MyelomaX1 trial, now I am in remission, I have been chosen to take Revlimid to see if it will prolong my remission.

Initially I was given 10mg 1 tablet a night for 21days then a week off it
I came up with a rash, so my dose of Revlimid was halved and I was told to take Piriton with next cycle. I got as far as day 3 and the rash appeared again in spite of taking the Piriton.:-(

Now my consultant has given me a 6 week break from Revlimid. It does seem to work as my blood results are good.

So I am to see him in October and try again with the Revlimid, a stronger anti-histamine and some cream to stop the itching.

Tell me, has anyone else had a similar reaction to Revlimid?

Love:-)
Tina

[JentayParticipant]

Tina, I haven't suffered from a rash while taking Revlimid but I did have a very bad one when I took Thalidomide and had to stop taking it. (It also affected my vocal cords and made my nose and mouth go numb but that's another story!) Hopefully, your body will adjust to Rev after your break.

Jen.

[mhnevillParticipant]

Hi Tina

Good to hear news of you. Glad to hear about remission. Hope you can get back on Revlimid soon. The itching must be awful.

Love.

Mavis x

[janwParticipant]

Hi Mavis

I know exactly how you feel about your itching. The constant scratching all over your body can drive you crazy. I've been on Fentanyl pain killer patches for my bone pain for the last three years, but over the past few months I've developed an allergic reaction to the glue used in the patches which causes me to continuously itch during the first night of a new patch i.e. every third night. Apparently it's a common side effect from the pain killer which causes some people to have to cease with the patches. I've tried to reduce the dose, but then I have bad drug withdrawal symptoms as well as itching. I've also tried an anti-histamine, but I become so sleepy for 18 hours as well as itchy.

In one FDA revlimid survey on the net, the patients with symptoms of high blood pressure, high cholesterol and/or rheumatoid arthritis were prone to itching when taking the drug, but unfortunately there were no tips on how to tackle the itching. On one myeloma blog, an individual has tried Benadryl allergy relief capsules for the itching with some success.

Unfortunately, we seem have a family history of allergic reactions to certain products and drugs. My mom ended up in A&E after just stepping into a bath using Radox for the first time when her body started to swell up. I reacted the same to some half cooked prawns many years ago. Both my mom and my son have suffered with eczema for many years and to stop itching we have tried a number of products such as tea tree oil, vinegar, aloe vera cream/gels, calamine, a topical steroid cream, non perfumed bar soap such as sensitive rather than gel soap, a mild washing product such as Fairy, stopped using perfumes, reduced caffeine, reducing sugar, cold showers before bed, oatmeal baths, cotton sheets/clothing, cool bedroom … some have helped but others haven't.

It's worth having a discussion with a good local pharmacist due to their excellent knowledge about drugs and their side effects for suggestions on the most appropriate anti-histamine tablet, topical steroid cream or other remedies. Hope you manage to reduce the itching.

All the best.
Jan x

[BeverleysParticipant]

Hi Tina
My husband had a severe reaction when he was first on revlimid. Started off as a rash and within a week all the skin on his body was peeling off. Not like sunburn, but horrible big chunks of skin. We were a bit stupid and thought it was "normal" so delayed going to hospital. When we did go he was admitted at once and on drip etc for a week. They said they had never seen this kind of reaction. A month off drugs but started again. This all happened in 2011 and thankfully hasn't happened again
Good luck
Beverley
X

[TinaPParticipant]

Hi Mavis, I am back on the trial now. Doc gave me really strong anti histamine to get rid of the rash. By the end of the first week the rash had gone.

I have my week off next week so we will see if the rash returns. But if its
only for a week, I can cope with that each cycle.

Love
Tina

[davemParticipant]

Hello everybody
My first posting on the site, so please forgive any mistakes.
I was diagnosed just over 2 years ago, and treatment (initially CDT now Revlimid and dexamethasone) has worked quite well, apart from having dosage halved as I suffered balance problems.
However, in the summer I had what I thought were a few insect bites, usually overnight. My GP was unsure and my Consultant also drew no conclusions. On Christmas Eve I noticed a large number of the spots on my chest and stomach. Managed to see a doctor at my surgery who recommended stopping the Revlimid. No more spots since but not happy about interrupting the treatment. (I have previously had colorectal cancer and complications from this led to an earlier myeloma treatment interruption).
I see my Consultant next week but am interested in whether this is a common problem and what palliatives have been prescribed.
Best wishes
Dave

[finnParticipant]

Hi Dave

I had those too! I never knew what caused them but maybe it was Revlimid. I always thought they were bed bug bites as they appeared in the night, but I got more of them even when I changed the bedding and pyjamas. I had them once on my legs and once on my face. Eventually they just disappeared. They did not cause me any other problems so I kept on taking Revlimid. Hope yours are gone by now too. Best

 

 

[davemParticipant]

‘Morning Finn
Thanks for your reply. I also thought of bed bugs! No more spots so Revlimid is top suspect! I’ll see what my consultant says and will post the response.
Best regards
Dave

[davemParticipant]

Hi
Saw consultant today but again no conclusion. Couple of new spots on arm just so she could see!!!
Restarting Revlimid on 27th so that could prove conclusive.
Best regards
Dave

[avantrompParticipant]

Hallo Dave
I started taking Revlimid 5 years ago when diagnosed with mm.(I shan’t go into the why’s etc. here.) My consultant started me on 10 mg. but I almost immediately got the same reaction as Beverley’s husband. The dose was then reduced to 7.5mg. My consultant said that he found this a good sign – I was obviously responding well to the medication. He was proved right. Over the past 5 years my p-proteine has slowly and consistently gone down and seems to have now reached a plateau of .4mg./l.
All the best with your treatment and I hope you are as lucky as I was.
Annette

[davemParticipant]

Good morning Annette
Sorry about delay in replying – don’t have computer on every day. Yes, I reacted to the initial dosage of Revlimid (balance problems) but the dose was reduced to 15mg and this seems ok. The spots were certainly nothing as bad as described by Beverly, and I have suggested to my consultant that the spots are a very minor problem compared to stopping the treatment. I have also been very fortunate in that my paraprotein level seems to have levelled out at about 4 from a high of 60 2 1/2 years ago.
Continued good luck and best wishes
Dave

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