Dorset lady advised me to open a new post regarding the yes/ no’s/ maybe s of actemra, kevzara, tocillizumab and sarilumab as medications for PMR. In stead of prednisolone/ prednison.
Thanks Dorset lady.
may I ask to add comments re. methotrexate too….
i am embarrassed to say that I did nt even know of these meds after 7 years of the PMR
yo/yo!!! Game. Thanks all.
You're welcome -not sure how many responses you get but hopefully some that are useful.
Probably nearly all replies will be from outside UK -those drugs aren’t used here for PMR.
As PMRpro mentioned in your other post -there are related posts to view.
Actemra is the brand name of tocilizumab and Kevzara brand name for sarilumab. These medications are called "biologics" and are designed to target very specific problems, unlike predniso(lo)ne which can be used to treat a number of different ailments. LucPaul recently posted a link to a talk about methods of treating PMR and GCA which you'd probably find would answer some of your questions, although I know you probably mostly want to hear about people's personal experiences.
I have GCA and LVV. I took Methotrexate for a while but it didn’t suit me and played havoc with my liver function so stopped it. My year of Tocilizumab is nearly completed and I have been fine on it. No side effects. I am about to try Leflunomide to replace the Tocilizumab. During all of this time, nearly two years, I have been taking Prednisolone, 40mg to begin with and then down to 7mg at present and tapering.
Now you have posted there are 2 linked posts for Kevzara/sarilumab and a load for Actemra/tocilizumab. Kevzara is very new so not a lot of experience on the forum but it has been used in a few clinical studies, including most recently the SAPHYR trial
pubmed.ncbi.nlm.nih.gov/377....
You may be interested in this article
medpagetoday.com/rheumatolo...
which takes a slightly more jaundiced view of the results.
I think sensible use in the real world may improve results - the taper was fixed and I think some doctors expect the biologic to start working immediately whereas for some patient it takes longer to really exert an influence.
academic.oup.com/rheumatolo...
is the Abstract for a French study my rheumy was partly involved in, using tocilizumab for patients who were stuck on pred and unable to reduce to low doses or off.
medpagetoday.com/rheumatolo...
is a MedPage article about it - you may have to register to read it but that is allowed as a patient,
For completeness for others I'll add the reply I gave on the other thread.
There are quite a lot of posts about them. The trouble is that in the UK none of them are approved for PMR so the experience mostly comes from people in the USA. Actemra is tocilizumab, Actemra is the brand name, tocilizumab the substance name.
I am on Ro-Actemra (the European name) because I am in Italy and my rheumy can use it. I've been on it about 2 years and got from 19mg down to 7mg. If I try 6mg the bicep tenrinitis returns after 2 or 3 weeks and if left progresses until I can barely use my hands. I also start to feel the adrenal insufficiency at 6mg, at 7mg it is fine.
LemonZest11 has also been on Actemra. she is in Australia. I think she started with PMR but was later diagnosed with LVV. And when reduction is difficult, really that does need to be ruled out.
Hello. Yes I've been on TCZ nearly 4 years. I've had 82 jabs and been off prednisolone for 66 weeks. I have PMR and LVV, but in Australia it is prescribed for GCA and LLV only, and for only 12 months. Long story, but I have managed to retain access to TCZ, and I have to say, it's been a game changer for me. No side-effects, apart from neutropenia, which is managed by spacing the jabs, currently at 4 weeks. Things are not perfect but almost. I'm currently in Athens after 4 weeks of wonderful adventures around the country. I'm not in a position to advise, but I wouldn't be nervous about TCZ. If it's not going well, you can stop immediately. Better than methotrexate or leflunomide, if you ask me. All the very best. By the way, PMRpro is my inspiration.
My journey is on my profile.
Had aches since2017 undiagnosed .
PMR and GCA diagnosed December 2018 by ultrasound and put on 40 mg pred.
Sent for a PET scan which confirmed LVV 3 weeks after diagnosis.
Started Tocilizumab weekly injections mid February with a very fast taper of Prednisolone .last tablet September 2019
ENDED 12 months on Tocilizumab mid February 2020.
No relapse, no flare and been fine ever since.
I was very lucky
I had no real problems.
Hope you get your decision right for you..
Good Luck
i want to thank all of you : taking the time and sharing your advice and stories regarding PMR and beyond!
I think many of us, like me, are flabbergasted! I thought it was prednison and more prednison, ( almost) but there is so much more.
I will take the time to digest it all and speak with the rheumatology lady in Netherlands re the various options.
For the Dutch people among us: there is the St Maartens clinic in Nijmegen which, apparently is the clinic in the Netherlands for PMR. Having lived in New Zealand for 36 years I did nt have a clue! So I wondered of to the nearest hospital.
So thanks all again. On we go!
After all your amazing help and advice my rheumatologist today decided that it is something like adrenaline exhaustion and she made me a challenging tapering regime. "hooked on prednison". well: I hope so, then I can unhook too!
Who knows, 5 weeks ago I still took 3.75 gram pred, daily, then it suddenly got belly up for NAR.
No indicatie for the Rituximab trial that I considered. (CBD oil instead, nothing to loose, only sleeplessness because of higher dose prednison!)
Maybe just as well. No doubt you people will hear me again.
Er - she thinks your adrenal function is kaput? And she is tapering drastically? Is she trying to kill you?
This was the first rheumatologist in my 7 years Hx of PMR….do you wonder why!
On we go with a smile.
Poster
Adrenal struggling?
Snaps from my garden.
Thanks for this Site!
sarilumab
