Pred and chemo

[GRB8]

Hi, as my updated bio explains, I have recently been diagnosed with a complication of multiple myeloma called AL Amyloidosis. This is rare (60 cases per annum in the UK) and is where amyloids (a consequence of the abnormal plasma cells underlying the multiple myeloma) clump together and attach to organs. This has brought forward treatment and I start chemotherapy tomorrow.

My treatment includes (approx) 20mg of dexamethasone two days a week (the day of and day after the chemo); I’ll find out the exact dose tomorrow. My Haematologist has told me to omit my PMR-related dose of prednisolone (currently 9mg) on the two days but continue as normal on other days. This seems sensible but any advice/thoughts welcome?

My Rheumatologist (I’ve now got enough “ologists” for a five-a-side football squad 😊) wants me to continue my taper but at the (faster than current) rate of 1mg every 4 weeks. Despite that advice, I’m inclined to stretch that slightly to 5 weeks and reduce by 0.5mg from 8mg onwards. My main physical symptom has been knee pain, particularly in my right knee which the Rheumy thinks is probably osteoarthritis. Again, any thoughts appreciated.

Thank you.

[PMRpro Ambassador]

Sorry to hear that - all the best for the chemotherapy.

To be honest, my immediate question is why you are likely to need ANY pred - even on other days. I'm just trying to work this one out!

Dexamethasone is a far stronger and far longer acting steroid - 20mg DM is equivalent to 125mg pred, The half life is also much longer so its antiinflammatory effect lasts about 3 days or more.

How long is the chemotherapy to last? Is it just a short course or lasting over weeks?

[GRB8 in reply to PMRpro]

Hi,

Many thanks. Good question about whether to stop the pred altogether. I’ll raise that at some point. I was also wondering about how tapering off dexamethasone would work.

My treatment consists of up to 6x 4 weekly cycles, up to six months.

Thanks again.

Gary

[PMRpro Ambassador in reply to GRB8]

So is that 2 days treatment in a week once a month, with 3 weeks off?

Or 2 days treatment every week for 4 weeks, repeated according to lab parameters?

[GRB8]

The latter.

[PMRpro Ambassador in reply to GRB8]

I'd be surprised if you need pred on more than 1 or 2 days, if that, between the chemo days in that case. I suppose the only real way to find out is to experiment a bit. Not sure about the adrenal function side - though dexamethasone at a much lower dose can be used. Need an endo there.

[GRB8 in reply to PMRpro]

Apologies, I thought I’d replied earlier. I think I’ll drop the “routine” pred for an extra day, see how it goes and also have a chat soon with the Specialist Nurse at the National Amyloidosis Centre at the Royal Free.

All the best

Gary

[PMRpro Ambassador in reply to GRB8]

It's ME needs to wish you all the best!! It won't be an easy few months.

[DorsetLady PMRGCAuk volunteer]

All the best with chemo.

When you have time and inclination get GP to check out the knee - X-ray will help. In the meanwhile you can use Flexiseq on knee [drug free so no interaction with other issues].

Online from the big A - or very often on offer in local pharmacies 3 for 2 if you find it helps.

flexiseq.com/products/

[GRB8]

Many thanks, will certainly take a look at some point.

All the best

Gary