[andybParticipant]

Hello all,

I was wondering how others have fared
during IRD treatment , with side effects and Recurring infections.

I started back in August 2024 after relapsing following 2nd level DVD (2022-24).

Fortunately, my consultant is pleased that the MM is back in remission.

This week, I’ve had to delay cycle 10 due to a chest infection. I finished a course of strong antibiotics last week but despite my team being happy with my bloods, they’ve postponed dispensing my medications as I’m still showing signs of an infection. I’ve had to shelve a couple of other cycles due to the antibiotics, the sinus and chest congestion has been on a different level.

I’ve also noticed occasional hand cramps, night time calf and foot cramps too , feeling weakness in legs .

I’m a pretty energetic 56 year old, and I have a 3 year old son who’s on the go all the time. Generally, I can keep going although I’ve found the last few weeks , I’ve felt quite drained on and off.

A different sort of fatigue I haven’t noticed before. It doesn’t help that my son’s sleep routine has regressed and we are often woken up at 1am, 2am ,or 3am , sometimes, twice a night.

Apologies for the long post, I hadn’t intended to add so much detail. But I am keen to hear other patients experiences.

Grateful for any feedback.

Regards,

Andy

[squirrelParticipant]

Hi Andy

I am currently taking Pomalidomide, Dexamethasone and a trial drug.
I also have had many gaps in treatment due to infections.
There was a 5 week delay before starting this treatment due to infections etc. My bloods too were fine but infection markers were high which made them hold off prescribing until they recovered. I also ended up in hospital 3 times with infections and promptly given antibiotics.
My consultant has now suggested that I have IV antibodies to help assist my immune system. This is due next week but yet again I have a runny nose and blocked ears so not sure if it will go ahead. Although in myself I feel fine.
Interesting about your cramps!
I have been having trouble too. I didn’t want to describe them as cramps as they seemed more like spasms to me although one morning it was a definite cramp!
Consultant suggested Pomalidomide was probably the cause of mine.
As to fatigue I never know when it will hit and when it does it knocks me really hard but I am lucky with a wonderful husband that recognises it.
I too generally am on the go most of the time but sometimes we just can’t
Take care of yourself.

Squirrel

[andybParticipant]

Hi Squirrel,

Thanks for your reply.

I’m sorry to hear about your hospital admissions, sounds like you’ve been through the mill.

Re the cramps,yes, you are probably right describing them as spasms. Although the hand issue for me was a definite cramping as I attempts to write , make a brew or hold a kettle and can be very painful. Over the last week or so, they do seem to have eased off, which is a blessing.

The fatigue unfortunately, is still an issue and I’ve been very lethargic over the easter holiday, although I’ve pushed myself to stay active with the little man. Perhaps more psychological than physical but I’ve found this happening more and more recently.

I hope the IV antibody treatment gets sorted soon and you feel the benefits.

Wishing you well for the future.

Take care and best wishes.

Andy

[Author]

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