Hi, I’m back to HealthUnlocked. Been absent for many months now. Unfortunately still have PMR. Currently on 10mg Steroids which work very well - hardly any pain. However, as I’m sure you’re all aware, I cannot stay on Steroids forever. I was referred by my GP to a Rheumatologist who kept me on Steroids for further two months then slowly eased me off them. However the pain retuned!! I’ve sinced learned from my GP that the Rheumatologist indicated that a new drug treatment has been discovered (without Steroids!) and I’m waiting for a return visit to him to hopefully try this new treatment. However because of Covid-19 this may take some time!!
I wonder does anyone know of this “new” treatment for PMR?
Hopefully, Paddy
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GucciPaddy
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There's certainly no new treatment we have heard of here... People have been using dmard as steroid sparer like methotrexate with various degrees of success. In the USA some have used actemra but it is by no means the first line treatment for pmr anywhere that I know of. In the UK it is difficult to get for even gca and only works in 5opercent if cases. Any idea what this "new" drug is... To be honest if there is one I suspect that at least one member would know about it.
I agree you'd think by now any "new" treatment would be in the public domain! So I'm really curious about what the Rhuematologist is referring to. Hopefully I'll know when I finally get my appointment
I am assuming that the date you joined, May 2019 is probably around the time you were diagnosed. If not, please let us know. If it was, than 10 months is no time at all to get down from, I assume 20mg a starting dose.
Yes some men and it is mainly men, the PMR goes into remission around 2 years. I only know two people who went into remission within 18 months and that was because they were both on trials of a new drug for GCA - Actemra.
You wrote, "I cannot stay on Steroids forever." Actually you can.
I am not talking about PMR specifically, although some people are on them for life. Without then they would not be here and they had PMR.
There are some children who are taking steroids for all their lives, again without them, they would not be here. Some elderly etc.
Now, I have heard nothing about 'new' treatment and I would think that with the charity having world leader research people on board and the people who did the new guidelines, who are again world leaders in both PMR & GCA and from European and USA mainly, we would know.
It will be interesting when you find out a name. In the meantime take care and have you tried one of the slow reduction plans?
I agree that you'd think this information would be released by now! So I'm waiting, with hopeful expectation, on discussing it with the Rhuematologist when I finally get my appointment. Many thanks for your comments.
We are trying to say there is no miraculous new treatment or it would be known by the top experts in the field... Doctors, researchers, rheumatologist from all over the world who share information and news of any new medications for pmr and gca with the charity and the patients who work with them in their research. Please be careful 🙏🌻
By the way, if he comes up with Actemra, currently it is only given, in the UK, for people with GCA and complications. To date I have not heard of anyone with PMR only who has been put on it. It is very expensive at present with it being a 'new kid on the block'. Although it has been used for some RA for about 12 years.
Have had this for 3 years now - first flare was 16th Match 3 years ago to be exact, last flare was three days ago - and I am a man. Having said that, I have been flare free for months at a time and think that my flares are caused by stress or trauma.
As you live in Ireland perhaps he’s referring to Actemra - which as stated has been used in some countries for a while, in UK a couple of years, but as already advised only for GCA and only for 1 year (UK that is) - but that’s not really a ‘replacement ‘for steroids.
WHY can't you stay on steroids forever? Not that most people need it forever, just a lot longer than the average doctor seems aware of. The median duration of management of PMR with steroids is 5.9 years. I've been on pred for 10+ years, I haven't crumbled yet and it gives me a life despite having been on it at above 10mg for a lot of that time.
I suspect your rheumy is meaning tocilizumab/Actemra - but if steroids are risky, so is tcz! Just in a different way. It also costs a lot ($17K per annum or so) - and given the Covid19 situation I do see healthcare funding being stretched so far that they won't be approving funding for it even in the USA which is the only place in the western world that is using it for PMR.
Hi, I haven't been on pred as long as pmrpro but am starting year5 next month or so. Dexa scan shows bones unchanged, had moonface and hump to start but low carb diet controlled that. It did effecty existing diabetes but that controlled now. I am at 7.5mg, rheumy happy, I am happy. Think of it this way. You body usually produces the equivalent of 7mg of pred in the am and across the day all things being equal. I believe I am only adding 0.5mg to the natural dose. As long as you have all your bloods tested once a year and all is OK and your bone density is stable and t scores OK then it's just a case of slowly seeing if pmr is in remission as you taper. It gets harder below 7mg because you are trying to kick-start your adrenal glands. You need to have a look at this then see what the rheumy is really offering and then check out the advice from there. This is a good overview of long term pred.
On prednisolone and prednisone I had few or no side effects. I had gained weight with 5 years inactivity and craving carbs - due to the inflammation/depression possibly - and on prednisolone that rearranged itself to the usual places but on the first day of pred the cravings went. Then I was switched to methyl prednisolone and that was awful: weight gain, black beard, skin and hair went mad, sure there were more, totally Cushingoid! Then I switched to Lodotra - prednisone designed to be taken at 10pm so it works in the morning. Weight was lost on a low carb diet, hair back to normal, no apparent problems. I have no sign of diabetes, my bone density remained stable for over 7 years - need a dexascan soon to see where I am now. My cholesterol is a bit high but I'm not concerned and don't take a statin - with the blessing of the cardiologist.
I can see you had challenges but you appear to have achieved some stability! I wish you well in the future.
I too have a strong hankering for the "wrong" food but have stuck to a low carb diet thanks to my wife - she's a great cook and can make seemingly tasteless food into something very appetising. However keeping my weight down is still a challenge.
You sure had significant challenges! I hope you've come through the worst and now have some quality of life.
Could I ask you if the cataracts you incurred stayed with you? Getting cataracts is a big worry to me as it could prevent me driving - which would cause me great inconvenience!!
Pred+Sun is not good at all for cataracts it can and does make existing ones grow more easily and if you do not have them, it can make them come along.
So sun glasses, re-actolite rapide specs if you already wear specs and night driving glasses or the new night protection sort, of which I cannot remember the name of.
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