PMR and methotrexate
Posted , 8 users are following.
I started my journey March 2017 and it has taken all this time and still not a proper diagnosis. I have had so many scans and tests as to this day my ESR are still 40 and CPR 45. I started on 30mg predisolone now have reduced down to 7mg. I have been onmethaxatrate for 2 months at 25mg. My rheumatologist still believes its RA although my bloods dont show raised ANA.
purely as he believes I am too young for PMR.
My question is why is my blood still showing raised markers. I amfeling better though but have been dieting as put on a lot of weight with steroids and trying to do light exercise often.
My rheumatologist said by March next year he wants to start a new drug called biological something i didnt get the full name.
apprently very expensive here in Australia and have to go through
this method before I can start.
Wanting other opinions please. Also the methaxatrate has caused my liver enzymes to rise and I believe he doesn't want me to be on this long term as the steroids has had major side
affects on me.
I have been reducing now 1mg per month off the steroids and so far so good. Am confused my he believes its RA as clerly symptons are in my muscles and not joints and all the bone scans shown
no joint problems.
0 likes, 30 replies
FlipDover_Aust mirella60121
Posted
Hi Mirella,
I'm the one Anhaga referred to on MTX and the biological (called Actemra/ Tocilizumab) - also from Australia. A brief history:
- Diagnosed by my GP Dec 2014 (happy 2 year anniversery Flip!)
- Started on 50mg steroids
- Unable to get below 20mg and getting sicker by Dec 2015
- Referred to a rheumy who put me on 20mg MTX
- Got down to 10mg pred over several months but unable to get below that
- Started self injecting Actemra (the biological Tocilizumab) three weeks ago
You are definitely NOT too young to have PMR and otherwise he sounds like a fool! So now I'll explain the process of how things work and maybe why he's saying he wants to treat you as having RA (and this is just a guess).
In Australia you can't get Actemra unless you have RA, so I had to get 'reclassified" as having RA (even though I definitely have PMR, not RA!) and take Plaquenil for three months - to 'prove' it didn't work and to qualify me to start on the next defence - Actemra.
Researchers are having great success treating PMR and GCA with Actemra, (Google 'Tocilizumab' and 'remission' and you'll find some decent articles to read) but it's still in the early trial phase and you can't get it for PMR. So by reclassifying me as having RA I qualify for the RA Actemra trial - worth $10-15k a year!
I am about to post about the results so far, so take a read.
EileenH FlipDover_Aust
Posted
No Flip, closer than that - not early trials phase, submitted to FDA for approval and it already has "breakthrough drug" status. They are reconsidering the advice in the UK which this summer was "not for GCA" - so things are moving.
Daniel1143 EileenH
Posted
EileenH Daniel1143
Posted
In GCA? They don't know yet. The trials were done with pred and tociliczumab being started at the same time and then the speed of reduction of pred was looked at. Some people (as far as we can tell) were off pred in 6 months with no flares and remained symptom-free - but I haven't seen the full report of the results yet. The study itself is completely finished - the follow-up to see how long patients remain symptom-free is still ongoing. It certainly revolutionises the early treatment of GCA - and it has achieved breakthrough drug status on that basis - but funding is going to pose problems I suspect until they can show patients who previously were unable to get off pred could with TCZ. It will hang on the potential cost-savings and for many countries they don't have them all in one purse - yes, patients not being on pred for years and developing diabetes, osteoporosis/fractures, all the other longer term risks of pred, will save a lot of money but some of the costs aren't seen directly in healthcare.
Still - if 6 months TCZ saves several years of high dose pred the potential price tag of some £6K may be approved. If it requires the person to stay on it indefinitely, at £12K per year it will be another matter I fear. And that isn't clear yet.
FlipDover_Aust EileenH
Posted
I would be happy to pay the exorbitant fee if it meant not getting the side effects and illness that comes with long term pred (too late for me!) But, I'm in the lucky position of being able to pay now - once I retire I wouldn't have a hope.