Possible new treatment-cure, maybe for PMR/ GCA?
Posted , 8 users are following.
I haven't been writing to this forum for a while, although I follow the discussions with much interest. I am still of course frustrated that while both GCA and PMR can be managed with corticosteroids ,etc, perhaps sometimes until they "burn out", there is no "cure" as yet.
I've had both ailments for just over four years, starting was I was a very fit 72. So far I've been coping fairly well. I was interested to note an advert this forum presented regarding the WU Medical Centre in Beijing. (I assume it can be mentioned since the forum has advertised it.) I wrote the centre to ascertain if, amongst other auto immune maladies,the centre could treat mine. I would be prepared to travel to China for treatment, if need be and there were to be some prospect of success.
Alas I received a reply stating that the centre doesn't treat GCA/PMR, but suggested I might look at taking injections to deal with TNF- Tumor Necrosis Factor ( I didn't know anything about that, but neither did I know anything about GCA and PMR some 50 months ago when they struck). DR. GOOGLE came up with some sites covering this. The clearest one I saw thus far is "Very Well" which explains TNF and its relation to auto immune diseases. Also it describes some quite new treatment procedures. But it was also suggested that I consult a genetics professional too- IF I can find one.
Question:
Does any member of this forum have any experience with TNF and the treatments- periodic injections- that might also serve to deal with GCA and PMR? Or any advice to offer?
1 like, 2 replies
EileenH charles83946
Posted
Anti-TNFs are specifically warned against in the guidelines for PMR (and so I assume in GCA) as they have shown no benefit, possible risks and cost a lot of money:
"Recommendation 8: (PICOs 10–11) The panel strongly recommends against the use of TNFa blocking agents for the treatment of PMR. The group agreed strongly against the use of TNFa blocking agents in PMR at this time since there is no evidence for benefit, but there is a considerable risk of potential harm and high resource use"
There is a new drug, tocilizumab (Actemra) which is being used on the USA where funding can be approved. There are patients using it for PMR as well as GCA there but approval has been turned down even for GCA in the UK. It involves either injections or infusions but off the top of my head I can't remember the intervals. It isn't yet clear whether it is a short term course that induces remission for an extended period or whether patients are likely to require ongoing treatment - it hasn't been in use long enough in GCA to know. It has been approved for RA for about 6 or 7 years I think.
In tcz you are looking currently at a drug cost of £12K per annum in the UK, up to $40K in the USA depending on whether you have to get infusions (hospital costs to be added) or self-inject. It does appear to work to reduce the dose of pred required - whether you get to zero or not and how long for remains to be seen.
They are both biologics - and they aren't sweeties either, having a high potential for very serious side effects. Work has recently been published showing that pred at the doses used for PMR was not associated with any more adverse events in the cohort of pred-using patients than in the age-matched non-pred users except for cataract development. Yes, some people experience problems when on pred - most of them can be managed when you know how and they do fade at lower doses. Very few are life-threatening and they are very rare.
Links to the 2015 Recommendations and this new work (Steroids: New findings) can be found in this post:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
MR._BELLA charles83946
Posted
I am for sure going to research this, and also see if my Rhuemy knows anything, (he probably wouldn't elaborate on it if he did) but it is worth a try. Let us all work to find something other than Pred for this disease.