Maintenance drugs

Hi there. 
I was diagnosed in November 2019. I have suffered back pain and hip pain for about 6 months or so now, and my doctor put me on Cocodomol, and they have increased the dosage once so far, but I feel sometimes that they aren’t strong enough for me. 
I have had 2 MRI’s, 2 Marrow bone biopsies, and 2 skeletal X-rays.  The last 2 times I have had a phone call appointment, the Haematologist has said that next time they’ll probably have to start treatment, but still no treatment has been started. I don’t understand it as I am in a lot of pain sometimes. 
I obviously can’t comment on the medication side of things, but I know and understand about the pain it causes. I feel like I’m going mad sometimes as I know I have bad pain, but only wear and tear is showing up on the scans etc. 
I am here for you to talk to or moan to whenever you want to. I have sent you a friend request on here to. 
Hope to hear from you soon 

Kerry xx

Hi Kerry, 

Thanks for replying. I'm new to all this and still finding my way round the forums. It doesn't seem as straight forward as fb lol!

It's good to hear from someone who seems to be having the same type of pain as me. I'm on much stronger meds than you though: Oxycodone, Pregabalin and Baclafen. But with the pandemic I don't think the levels have been checked since they were begun 12 months earlier. Just like you I've not seen anyone in a year either, it's all been phone consultations. Hopefully though I'll be seeing my spinal consultant in a couple of weeks and I'm hoping he'll order some new scans and hopefully he might be able to explain where the pain is coming from. I really hope he doesn't just put it down to wear and tear like you said because you do feel like you're going mad don't you. 

What other treatment have you had?

Flutterby x

Hi again. Thank you for getting back to me. Yes I definitely feel like I am going mad as I know I’ve got the pain and where it is, yet nothing shows up. I just want to start some sort of treatment so that I feel like something is being done for it. 
All I have had treatment wise is Cocodomol from my normal GP. 
I really feel for you getting pain, it’s not nice at all. Have you got any support at home? 
kerry x

I'm lucky that I have my husband for support but it is just me and him. What about you?

Have you not been referred to Orthopaedics? With hip and back pain you'd think they'd refer you for them to look at your images. Is it affecting your mobility much? Have you had any surgery?

Xx

You mentioned maintenance drugs.  The NHS has been unable to offer patients lenalidomide (Revlimid) maintenance as NICE /dept of health could not reach a funding agreement until earlier this year, despite uk trial evidence that it substantially increases average periods of inactive disease (remissions). MM patients going through SCT from last autumn onwards have been and will be offered it, but those of us who were treated earlier, will not.  The only ways that I know for our patient group to access them are either to co pay for that specific drug (only an option in regional hospitals, and very expensive) or to import a generic version of lenalidomide.  This is legal in UK and in my case is done with my consultants knowledge.  I'm importing the Cipla drug which will start to be distributed in USA early next year when the USA patent for Revlimid expires.