This topic contains 13 replies, has 9 voices, and was last updated by 
LizzyW 11 years, 12 months ago.
Hi everyone – I am so glad I have found this site. Been reading this forum and feel so much better. It isn't me who has been diagnosed, it is my Mum. She was diagnosed on the 14th of September and we already have a tale to tell!
She agreed to take part in the trial, and so the week after diagnosis started on the RCD combination and also with Allopurinol and Tinzaparin. First round seemed to go without any problems until the day before she was due back at the hospital. She started with a rash initially on her tummy but which quickly spread upwards onto her neck causing her face to swell. The hospital advised her that her bloods had dropped to 6 so she had to go back in for a transfusion and that would make her feel better. Unfortunately it didn't and the rash became like the most aggressive eczema you have ever seen and it was all over her body and causing more things to swell – face, neck, hands, legs and ankles. I have never seen anything like it in all of my life. My Dad took her into A & E and they said it was an allergic reaction to one of the drugs but they didn't know which one. She was taken off all medication and kept in hospital for 9 days where she had antibiotics and a platelet transfusion. The consultatnts decided that this was a severe allergic reaction to the Allopurinol which was taking so long to get out of her body because she had taken so much of it. They also thought that maybe it could be the Revlamid that didn't agree with her, but favoured the Allopurinol as the cause. Eventually the rash started to die down and turned into what looked like the aftermath of bad sunburn, she has literally shed a skin.
Anyhow, she was allowed home and returned to the hospital the week after to get back on the medication. That was a week ago (30th Oct). Her blood dropped again so another transfusion had to be done which did make her feel better, and she was feeling really well until Monday of this week when her face started swelling again. She slept for two solid days more of less just waking up every so often and then having to lay back down again. Then the red spots on her arms started to come up again, along with her face swelling even more and this time neck and tongue swelling. My Dad took her straight to the ward yesterday morning and it was then decided that she is allergic to the Revlamid. They have sent her home to wait until it is all out of her system once again and they will discuss at the next trial meeting where to go next.
It is rather bittersweet though as her blood is now only 5% Myeloma as opposed to the 95% it was when she was diagnosed.
Has anyone else had a reaction or know of anyone who has had a reaction? [/b][/b]
Hi Lizzy and welcome to what you've already discovered to be a brilliant forum.
I was diagnosed in May 2011 and had 6 cycles of CTD from June to November 2011.
Fortunately I had no kidney damage at all, but as a precaution was initially given allopurinol.
I had a red itchy rash start up after about a month. When I showed it to my specialist she immediately took me off the allopurinol and it cleared up within days, so I think it must disagree with quite a few folk!
I hope your mum improves very soon.
Michele x
Hi Lizzy
A Warm Welcome to the site to you an your Mum.
My Run was straight foreward so Cant add nor help you at this time but am sure some one will be along that is on this treatment and give the advice you need.
What Hospital is your Mum getting treated as some on here might be able to help and advize.
Tom "Onwards and upwards" xx
Hi Tom and Michele
Thank you so much for taking the time to read my post.
She is being treated at Rotherham Hospital in South Yorkshire. She is feeling a bit better today which is a good sign. The drugs have clearly worked as the Myeloma is now at only 5%, it has just been a rough time due to the allergy – but who would have ever known she had an allergy to it!
Hi Lizzy
Welcome from me too. Sorry your Mum has had such a bad time to begin her MM journey with. I do hope she is coming out of the dark tunnel.
The one good thing about the treatment of MM is that there are so many paths to try. Many of us have found CDT, a more traditional treatment, very successful, so don't despair that your Mum hasn't responded to the novel drug combination. You don't say how old your Mum is, I am 67yrs and have just finished six rounds of CDT and am currently completely clear of any PP on my blood.
Do keep us informed of your Mum's progress. We all know how telling it must be on you, your Dad, and the rest of the family.
Lots of love.
Mavis x
Hi Lizzy,
Welcome! Jusst to add that my Mum had a similar reaction, very bad rash and ended up in hospital – it was the allopurinol – it is a known side effect. She has not taken it again and since then has been fine.
I hope you find a solution for your Mum, there are a few other treatments which also work well, my Mum has just finished four cycles of Velcade which worked for her.
All the best, let us know what happens,
Jill x
Hi Mavis – she is 61. I asked about different pathways and was assured that there were many different options, it was just a case of finding the correct one.
Hi Jill – I am thinking that maybe she is allergic to both – a double whammy! She won't be taking either again and is feeling better today so fingers crossed everything should be ok.
Hi Lizzy and mom
Its not a problem and am pleased to read Mum is getting better today and Hope it gets better and last longer 🙂
Love Tom "Onwards and Upwards" xx
Hi LizzyVV I did not have these issues your mum had,but i am Glad to see your mum has made some recovery from that freightening experience,and i am happy for the attention to details you have shown as with MM problems when there is someone to share the problems with is such a relief its worth its weight in gold (as the old saying goes)
Good luck with her treatments.
Hi Lizzy
Its my partner Geoff that has the MM he too had the same allergic reaction to the Allopurinal he was in a right state rash all over he was taken to hospital and kept in 4 days he is on the Revlimid too and has stayed on this he started with a level of 109 now after 3 months of Rev he was down to 13 so it does the job! Just going back this week for results to month 4. I find this site a great hub of advice.
Jacquie
(Hi Lizzy,
I too was one of those unfortunate ones to have an allergic reaction to Allopurinol. The hospital wasn,t at first sure whether it was the Allopurinol or the Revlimid but I too took the risk of taking Revlimid again and luckily i had no further reactions. But I was hospitalised for over three weeks, had severe swelling of face body and legs that I was unable to walk and I too shed my entire skin in strips..(Another antibiotic that I was given whilst in hospital was also implicated beforeI frighten anyone from taking Allopurinol)
I didcontinue with my RCD regime without Allopurinol and it did its job. After being randomised to velcade I am now in remission and about to undergo sct.
As others have stated there are other treatment routes and I KEEP MY fingers crossed that one of them is effective for your mother
Best wishes,
Peggy
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 because of peeling skin. I also got all the spots. My specialist immediately reduced the dose to 7.5mg. (alternate days of 1 and 2x 5mg. capsules. That solved the problem. I am very happy with the lenalidomide that causes very few side effects. I hope your mother soon gets settled with her medication.
Annette
Hi everyone – thank you all so much for your comments. It really does mean a lot.
She is going back to hospital again tomorrow as she has a septic tongue. It started last week and prompted the decision that she was allergic to the Revlamid. However, her consultant said that the steroids should flush out any infection but it doesn't seem to have. It is a yellow/green type colour with a foul taste and smell to boot. Has anyone ever had this or know anyone who has? Bless her.
Hi everyone – they have kept my Mum in as the 'septic' tongue is actually a thrombosis. She has to have an MRI scan and then depending on how deep it is, she has to either have it scraped of or dug out (sorry for the graphic language). It seems to be one thing after another. Has anyone heard of this sort of thing happening to anyone else at all?
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