Posted , 13 users are following.
I was diagnosed with PMR in November and currently taking prednisone with great effect on pain but suffering from side effects such as heart palpitations, anxiety, mood disorder, changes in skin, bruising etc
my rheumatologist has suggested this injection which is being used more recently for PMR to help with my overwhelming side effects
0 likes, 11 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
rocketman42 nancy15228
Posted
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5837044/
https://www.medpagetoday.com/rheumatology/generalrheumatology/57894
nancy15228 rocketman42
Posted
darlene36688 nancy15228
Posted
Hello Nancy,
I am on the actemra infusion.
My first infusion caused a terrible heartburn. Told my rheumatologist about it & he said to take 4 or 5 tums with you & chew them during the infusion & I did find that to be helpful.
On April 24 th. it will be my 3rd. infusion.
My inflammation numbers started going down immediately and my rheumatologist was almost ready to jump up & do a happy dance he was so excited.
I was diagnosed with GCA and PMR.
Last July I was on prednisone at 60mg., later at 40 mg., then at 20 mg. ,now at 15 mg.
I won't see my rheumatologist until June 11th. so I will be at 15 mg. till then. He ( and I) both want to reduce it more at that appointment. Fingers crossed.
The prednisone has caused anxiety, and palpations, diabetes, and overwhelming fatigue.
I was diagnosed with GCA and PMR.
I hope you have good success with the actemra.
I'm very happy with it.
ClaireJG darlene36688
Posted
nancy15228 darlene36688
Posted
the day I was “ frozen” with pain in bed is when I realized something was definitely wrong! Inflammatory markers off the charts, started with 20mg of prednisone ( thank god only). Within 2 days I was 85% better..I stayed on that through the holidays with one setback from a too dramatic decrease...and started decreasing .25 mg every week...which I determined on my own....I am mostly pain free, able to start working out again and physically all is well. Problem.. the side effects of the prednisone are overwhelming....I have heart palpitations, anxiety, moods are sad, skin is crepy, thin, easily bruised, hair loss.
my rheumatologist spoke to my about Actemra SC while weaning off of the prednisone. I was very enthusiastic at first but now having second thoughts.
most people blogging are not having success with getting off prednisone entirely with out flare ups. my understanding is I will start injection (May 5th) while decreasing prednisone 1 mg every 2 weeks to start. I am currently on 14.5
I will wean off the prednisone entirely while continuing Actemra for approximately 1 year.
It sounds great as my doc states” no side effects” very minimal chance of infections.. I guess I’m just afraid to start something new.....reading others experiences makes me Leary
darlene36688 nancy15228
Posted
I was reluctant about the infusion too.
I waited about 2 months before I decided to give it a try.
I don't know that we ever get 100% off the prednisone for quite some time.
I read posts from people stating they are still on a low dose maintenance prednisone for 3 plus years. It's something that I just watch & will wait to see what happens with me.
Today I had to have an MRI and an MRA because of the terrible headaches I continue to get.
My neurologist thinks there can be more to it than the GCA. We have determined on 2 occasions that I've had a TIA. My Mother and brother used to get TIA's.
Think I'm just a medical nightmare....lol
charles92035 nancy15228
Posted
In the US Actemra/Tocilizumab is primarily for GCA. I take an injection every two weeks since June of 2017 and have had no bad reactions. I was given Actemra because I would get a major Flare every time I tapered below about 24mg of Prednisone. I started at 60mg of Prednisone in August of 2016, I am now at 8mg thanks to Actemra and a great Rheumy. I hope this helps.
EileenH nancy15228
Posted
"which is being used more recently for PMR"
It IS being used, in the USA, but I'd love to know how they manage to get funding. It hasn't been through a clinical trial for PMR, just GCA, so can't have been approved, which means it is off-label use and in most countries that has potential implications if anything goes wrong. That also means they have no studies looking at how best to use it in PMR - which may turn out to be different from how it is used in GCA - or any properly documented information about problems and duration of use. There are a couple of very small pilot studies, nothing else.
It is a very powerful monoclonal antibody drug and has potentitrlaly far worse side effects than pred used properly - providing you get to the normal sort of PMR doses which are under 10mg for most people the long term side effects are minimal and would be found in any age-matched comparable population not on pred:
https://www.medpagetoday.com/rheumatology/generalrheumatology/66912
In GCA not all patients are able to stop pred altogether - and for the vast majority of us with PMR we can get to a dose well under 10mg by sensible and steady reduction, getting to 10mg is common within 6-8 months at most. You may get lower sooner - but there are no guarantees.
"my doc states” no side effects” very minimal chance of infections"
Really? I'm assuming he uses it with RA patients to have such a sweeping opinion.
It is one thing considering it for GCA and the high dose steroid doses there - for PMR I think it is a very different kettle of fish. There is quite a lot of discussion about it on the HealthUnlocked PMRGCA forum which you might find interesting:
https://healthunlocked.com/pmrgcauk
nancy15228 EileenH
Posted
I met this rheumatologist and spoke for 10 minutes..... he read my history and knows I’m struggling with prednisone side effects. I felt he was very excited about this this med, Actemra. Describing how I would virtually have no side effects and the known side effects such as infections are very low..............I felt relieved and excited too...When I got home I started thinking is this the right thing to do. I am at 14.5 mg, decreasing now .5 mg a week..no pain, working out, feel good!! It’s all about the side effects for me. As I decrease the prednisone, the side effect will decrease.
im thinking I can just decrease down to zero and I’ll be fine! How does the Actemra work after I get off the prednisone...how will I know I need it....
its hard to find info that is not all scientific....I will look at the link you sent
i feel I am in a much better position then others, just having the PMR...I’m lucky
Anhaga EileenH
Posted
If I were a doctor I would never consider off label use of anything, even a closely related disease. You'd think thalidomide would have taught everyone that forever.
EileenH nancy15228
Posted
What side effects are you struggling with most? Many of the side effects can be managed well - and they do recede as you reduce the dose.Tell us and someone will tell you how they manage it.
I have palpitations - they are nothing to do with the pred, they are due to paroxysmal atrial fibrillation which was almost certainly caused by the autoimmune disorder damaging the electrical cells in the heart. I had noticed something right from the start of PMR but they hadn't been diagnosed/identified, they never happened when I was at the doctor! I also found that the mood swings I had were more due to the PMR than the pred - though of course both can contribute. My skin is quite good - but I NEVER use soap on it, nothing that foams. If I do then it dries up and sheds - bleugh! No soap, use moisturiser, no problem. I don't bruise too badly now though I did develop the tiny purple purpurae and petechiea - and I am also on anticoagulant medication so you'd think I would bruise more than I do.
I think you will find that many people would say their pred side effects were overwhelming initially but they do improve with time as your body becomes more used to the pred. I had a 8 month period where I had awful side effects from methylprednisolone (Medrol) but I never felt I'd prefer to stop the steroids even though for that few months the pain-relief was not good. But then, I had no choice.
I've been on pred for well over 8 years and have had PMR for 14 years. I have been thinking hard about whether I would try Actemra if I were offered it and have come to the conclusion that if it were part of a clinical study I probably would. If it were just a doctor telling me is is wonderful, no side effects blah blah - then I'm really not sure. I would have to consider whether the potential problems outweighed those of pred. I think it is going to change the way GCA is managed - but even then, I don't feel it should be used unless the patient has problems reducing their dose or has considerable co-morbidities that make pred a problem. But in the case of PMR? No, there must be more trials done first - it may be a sledgehammer to crack a nutshell. The potential cost is going to pose a major problem in the context of PMR - no healthcare system in the world could support all PMR patients being put on Actemra.
And when a doctor comes over as being totally blind to the potential problems and desperately enthusiastic for me to take a relatively new drug in the field then I would be questioning their personal motives for getting me to take it. I've seen too much of the pharmaceutical industry and marketing from the other side not to be just a bit cynical...