[joversonParticipant]

Hi Morwenna , I had SCT in 2010 and it took a year to get back to my normal self. This lasted until I started to relapse in 2022 and started on DVD treatment last Nov , which has worked well but I’m still suffering side effects.
Just try all the options for feeling sick , there are a lot of different meds available. You will feel better eventually I’m sure .

[joversonParticipant]

Thanks for your reply. Even though I’ve been on nothing at all for 6 months now I’m feeling just as ill so god knows what I’ll be like if I start back on it ! I felt well beforehand. Just hoping for some advice

[joversonParticipant]

I had first dose of dara maintenance of dvd regime in March but side effects been so bad I’ve not had any further jabs since. I have severe gastric problems, abdominal pain , tremblingly , burning sensation all over . Was prescribed pregabalin but didn’t find it helped . I’ve had numerous scans, endoscopy, sigmoidoscopy etc but nothing thrown up so assume it must be due to the treatment. I feel absolute rubbish and it’s really getting me down and impacting my life big time . Anyone had similar symptoms and any suggestions? (I am in remission by the way , but wonder if it’s all worth it ….)

[joversonParticipant]

That’s interesting, were you suffering severe nausea and other side effects ?

[joversonParticipant]

Anyone else had severe nausea etc on daratumumab maintenance? Anti sickness meds don’t work very well for me

[joversonParticipant]

I take 30mg of lansoprozole daily but no one has suggested this may cause nausea. I was hospitalised last weekend but still no further with causes of why I feel so ill. Had ultrasound as gallstones suspected but scan was normal. Endoscopy arranged. I had thalidomide 15 yrs ago prior to first SCT but don’t recall feeling this bad . It seems I’m the exception when it comes to tolerating the daratumumab! Will just have to hope my consultant comes up with a solution when I see him on Wednesday.

[joversonParticipant]

That should be can’t tolerate it

[joversonParticipant]

I’ve relapsed and just started DVD . I’m finding the side effects very challenging.. and am wondering if this continues for the whole 24 weeks and also once on 4 weekly injections. At the age of 73 I have a small window to consider a 2nd SCT. My first one was very successful and I was over 13 years treatment free. If continuing on DVD was relatively side effect free I would prefer that option I think . Can Anyone with similar experience advise ?

[Author]

Posts