Coming up on 3 years with PMR- how should I celebrate 😩 ?
Does anyone have an opinion on sarilumab ? Recently approved in US for treatment of PMR. My rheumatologist suggested it to get off the prednisone. I am down to 1.5 mg per day. Going oh so slowly but not slowly enough for Rheumy!
Always so appreciative of the advice and support of this forum.
1.5mg? How are you feeling on that?
Nothing would induce me to have a biologic or any other immunosuppressant if I was successfully that low in Pred. It is a tiny dose and side effects are really not the same concern as before. People often struggle on low doses because of low adrenal function which the above drugs don’t help with. Only being on a low dose of Pred will trigger an improvement.
Feeling pretty good and quite pleased with 1.5 until the rheumatologist visit! I knew going in that she would fuss and was prepared but it’s always the same refrain-off the pred, off the pred or you’ll be dead 😅.
I did mention the wealth of knowledge I have gained from this forum and she wrote it down. Perhaps she will visit and learn.
I will NOT be taking the biologic.
So thankful for the support and guidance!!
Darn sure I wouldn't take sarilumab to get off 1.5mg pred! Biologics are not sweeties and it is the same as Actemra in terms of working via its effect on IL-6 though it does it in a different way. I'm on Actemra for PMR and am still struggling to get below 7mg.- PMR is obviously caused by more than one mechanism, just like GCA, These 2 biologics work on the IL-6 bit, not anything else, so even they are not guaranteed to get you off pred.
And the risks of 1.5mg pred after only 3 years do NOT in any way justify the use of a biologic - what on earth are some of these rheumies thinking of?
What is the point in adding in another drug with its own set of issues when you are as low as 1.5mg
Oh..let me guess - Money in someone pocket!
I totally agree! I just researched this drug and it has so many side effects and is a biweekly injection This or 1.5 mg prednisone? I would say “NO!” And look for another doctor!
It only goes to prove that doctors are not adequately taught about pharmaceuticals. They seem to think that drugs will do their job for them and they don’t have to use their brains.
As you are only on 1.5mg of Pred, which is highly unlikely to cause you any problems long term, personally, I can see no point whatsoever in taking another drug which a) may not work as well and b) may/will have it's own set of worries to go with it.
I agree! To date pres side effects have been minimal- my BP is good, no blood sugar increase and no weight gain. Osteopenia diagnosis which does give me cause for alarm. Started taking Bone Balance about 9 months ago. We shall see if it makes a difference at the next density scan.
My rheumy wrote to my GP recently to say that it was safer for me to stay on 5mg Pred than to introduce any DMARDs. I know you're taking about a biologic but I would think that the same rule applies.
When biologics go wrong they tend to do so rather dramatically!!!!
Sounds like your rheumatologist is one smart doc! Thinking instead of just prescribing.
I agree completely with the other comments. I would not consider a biologic if I was down to 1.5mgs of pred. I was on 1.5 until I got sick and it caused a flair in the PMR. Trying to get back there slowly! I probably need to get a bone density test. I had one last year, but they are only allowed 2-5 years per my PCP. I may have to pay for it, but want to know my bones are OK.
Happy anniversary! NoT !!!!!!
Weakness 3 years post PMR diagnosis. Adrenal problems?
Happy New Year
1 year on!
One year
