Am new to the site, but just noticed an article in the Mail on Sunday which advises that a common arthritis drug is effective in treating GCA and PMR without the side effects of steroids - the drug is tocilizumab. Trials seem to infer that after 1 year of being on the drug, over half could come off steroids.
So not sure when this will be implemented for all to try??
My concern also is that it means I am on yet another drug for a period, which for me may be a complication as I am on a number of other drugs for other medical problems.
Article is in photos.
I have been on steroids for about 2 years, approx 10mgms/day, PMR condition not without daily pain, however, especially in hips and lower back. My hips suffer from wear and tear (64 years old) and pain often gets to me and is depressing.
My weight increase also means with the PMR my mobility is not good.
Roll on better times!!
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Joan217
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Yes, it has proven successful in the Phase 3 trial it seems. But don't hold your breath - it costs £12K a year and has been rejected in a 2015 consultation for use in GCA. That does seem to be being rethought - another consultation is underway as the first one was done shortly before more compelling evidence of its effect was published. If it struggles to get approval for GCA it is very unlikely it will be made available for PMR purely on cost grounds. The NHS is on its knees - they can't afford decent treatment anyway.
The study has now reached the long term stage - at present there are no results for how long it is effective for. Will a few months of infusions/tablets alongside pred lead to remission that is long lasting? Or will it be needed on and ongoing basis? Yes, half of patients were off pred in a year - but will that last?
And, no, it doesn't have the side effects of steroids but it has its own side effects and, since it is a monoclonal antibody, they can be significant. There are patients on the forums who have been on it for GCA and a couple for PMR - mostly in the USA and one in Australia. For some it has been miraculous but there are others who had to stop very quickly because of side effects.
You know - it is possible to lose weight while on pred - I lost 36lbs while above 10mg by cutting carbs drastically and others have avoided weight gain in a similar way. I also couldn't exercise at the time I started, I was on crutches for another problem. It is very likely that your lower back pain could be muscular, due to something like myofascial pain syndrome and it can be managed with targeted treatments. Having my myofascial pain syndrome diagnosed and dealt with allowed me to reduce my pred dose and become more active. It is worth thinking about.
Yes, tocilizumab is being considered by NICE (National Institute for Health and Clinical Excellence) for approval for cases of GCA, but not PMR on its own. The GiACTA study carried out by Roche has shown that it can reduce the overall intake of steroids quite drastically. However, it is very expensive, and it's a bit misleading of the article to call it a 'common' drug. We can hope that it will become available for GCA. The side effects of TCZ, when they hit, are short-term and stop once the drug is stopped. The side effects of prednisolone are cumulative and the damage can last a lifetime. So the advent of alternatives is welcome, but realistically it's unlikely that it will ever be commonly available for PMR. We can only hope that in a few years, when TCZ comes off patent, other drug companies will produce cheaper clones of the same molecule.
I finally got around to asking Google what biologics are. Now that I know it will take a life-threatening illness for me to agree I need them. I think I'd prefer to stick with medication derived, however, distantly, from plants (and occasionally animals) that the Earth produced. But I suppose the GMO genie really is inescapably out of the bottle now.
If TCZ was being administered to GCA/PMR patients, would this likely be at the outset of the condition/s being diagnosed or during steroid reduction, in particular if a patient was struggling to get off steroids and other alternative steroid sparing drugs weren't working? I ask this because I am at the latter stages with GCA and PMR and wondering if TCZ could help me to get off the steroids in the hope that this would aid minimal impact of the long term side effects of Prednisolone.
All that would need to be decided by NICE. It could be either, or both, or neither! At the moment we don't know how they will define the scope. Hopefully we will have an idea by April or May.
In terms of how it is used, it has already been used in both patients right at the start of their GCA journey and also for patients who have struggled to reduce high pred doses in the past. Preferable I imagine is to use it from the start - but those of us who have been on pred for some time would not be ruled out. TCZ would be introduced at a very late stage in RA - after all DMARDs have been "failed" so it isn't a requirement that it is given to a drug-naive patient.
However - as Heron has said, biologics are not sweeties! If you have got to a pretty low dose of pred you are probably at the stage where the potential side effects of either are similar. And with pred - after 60 years we know exactly where we are!
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Thank you!
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