[jbalParticipant]

Another symptom that’s developed following first cycle of VTD…..is this normal???

[sachbarnesParticipant]

hi jbal did this subside? my dad just finished first cycle and is getting the same.

[jbalParticipant]

Hi
Yes it did subside. Thought to be an allergic reaction to the drug used to stop the build up of Uric Acid taken for the first couple of weeks. This was stopped and been no effects since.
Just finished 6th cycle and been fine throughout.

[lilibParticipant]

My husband is at the end of the first 4 weeks of VTD, and started to get a rash yesterday morning. Total panic here – I rang the emergency number (why do these things always happen on a weekend?) and they felt it was probably reaction to the anti-Uric acid drugs. Today, the rash has spread all over his body, so I rang the day ward (our CNS not in work on Mondays). Still worried. But they told us to come in tomorrow morning if it’s still there. I really hope it is just this reaction to the drug. I am feeling very concerned and unsupported. Husband is having a sleep.

Jbal – am I right in thinking that you only took the anti-Uric Acid drugs for the first month of treatment?

• This reply was modified 2 years, 8 months ago by  lilib.

[jbalParticipant]

Hi Lilib
Yes. The drug used to stop the build up of Utica acid was only for the first cycle. They also changed his antibiotic to another one as that was thought to also be a potential cause of the rash/breathlessness and everything calmed down pretty quickly when this was stopped/changed.
Husband now due his SCT in 2 weeks and we have informed the transplant tm of the reaction he had so they don’t prescribe the same anti biotic when he’s an in pt.
how all goes well and this soon settles.
Jane

[lilibParticipant]

Thank you, Jane. That’s good to know. Thank you so much for replying this evening. I might manage to get to sleep! Was your antibiotic Ciprofloxacin, by any chance? If so, we may query that tomorrow, too.

Best wishes for your husband’s SCT.

Lili

[jbalParticipant]

Hi. Ni it was Co-Trimoxazole

[lilibParticipant]

Reporting back after a nerve-shredding weekend for me (the supporter) and an itchy sore weekend for him (the patient):

I sent an email to the CNS to advise that we were attending the Haem. Day ward today, and that now the rash covered more than 80% of the body, including the face, and lips were very swollen. Their opinion was that it was the Thalidomide which was causing this, so have stopped that, but also stopped the Allopurinol, and given him antihistamine to improve the rash situation.

I am quite weary – I know that they are all very busy, and they also have Covid to consider, but it turns out that we were not given a medication diary when we started treatment, so I was unaware that some drugs were just for the first cycle. I have tried to get things in writing or email because lots of little bits of information are either not told to me, or they are told to the patient, who forgets in amongst all the many things going on. And when all this kicked off at the weekend, I had no access to anyone who knew the patient until today (Tuesday).

[lilibParticipant]

Just posting to say that I am afraid that the saga continues. Another week, and still the rash. Husband has been taken off all the medication now and all treatment ceased until a med review at the end of next week. So unfortunately these side effects don’t always go away with time it seems.

[lilibParticipant]

Just reporting in to say that we had the medication review yesterday and my husband is to restart the induction treatment, but without Thalidomide. His paraprotein levels had reduced by a huge amount, so I suppose that is some compensation for the agony of the skin-shedding. Complexion and skin pretty much back to normal now after a two week break.

[Author]

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