10 year PMR anniversary! A new drug for me called Etanercept being advised.

[MC60]

Originally 'diagnosed' with PMR in 2014, initially controlled with prednisolone and then Methotrexate introduced in 2018 after I queried my diagnosis and treatment plan.

A PET scan in 2018 by my new Rheumatologist satisfied him that I had PMR. Leflunomide trialled but did not work for me.

My aim is to reduce my use of prednisolone as I believe that it is not good for me long term.

I fell and tore my quadriceps tendon in November and I have just started walking without a straight leg brace. I have been advised that 10 years of prednisolone use has contributed to my tendon weakness.

Kevzara (Sarilumab) IL-6 blocker was discussed by my Rheumatologist after the Leflunomide trial. According to their website it states that it is suitable for:

'polymyalgia rheumatica (PMR) after corticosteroids have been used and did not work well or when a slow decrease in the dose of corticosteroids (taper) cannot be tolerated.'

At a consultation I did not meet the evidence for swollen joints because I had increased my prednisolone! I was told to reduce my dose until I was bad enough to be able to supply them with a picture of my swollen fingers first thing in the morning.

They have now decided that they now want to put me on Etanercept. According to the National Library of Medicine:

'Etanercept is a biologic TNF inhibitor commonly used to control ankylosing spondylitis, juvenile idiopathic arthritis, plaque psoriasis, psoriatic arthritis, and rheumatoid arthritis. Etanercept is a soluble receptor that binds both TNF-alpha and TNF-beta to inhibit the inflammatory response in joints and skin that is characteristic of these autoimmune disorders. The drug can be used as a monotherapy or taken with other immunosuppressants, such as methotrexate.'

There is no suggestion that it is suitable for those diagnosed with PMR.

My latest letter from the Rheumatoly department now shows my diagnosis as Seronegative Inflammatory arthritis.

My 4 weekly regular bloods show my ESR and CRP levels to be normal, even when I am having flares.

Does anyone have any experience of this drug? The side effects and warnings are making me rather nervous.

Should I push for the Sarilumab?

Should I just stay on higher doses of prednisolone?

Any thoughts would gratefully be received.

[DorsetLady PMRGCAuk volunteer]

Had you put the name of drug in the title you may have brought up related posts..

Not many in UK with experience [if any], but you may get more when US members join in -did find these in search facility -which may give some info-

healthunlocked.com/search/p...

[MC60 in reply to DorsetLady]

Thanks, I have updated my post.

[DorsetLady PMRGCAuk volunteer in reply to MC60]

Thanks…

[PMRpro Ambassador]

"I did not meet the evidence for swollen joints "

When the bleep will it sink in that most of us with PMR DO NOT HAVE SWOLLEN JOINTS? I will never qualify for the stuff in that case.

And if they care to read the 2015 Recommendations for managing PMR THEY recommend AGAINST using anti-TNF medications as the risk-benefit relationship doesn't support it.

If you DO have a seronegative inflammatory arthritis then one or other of the anti-TNFs is a reasonable approach to try but I personally don't agree that PMR (which they agreed you had) morphs magically into an inflammatory arthritis. And if it is PMR, the likelihood of an anti-TNF drug achieving a lot is low as I understand it.

What dose of pred are you on currently?

[MC60 in reply to PMRpro]

Hi,

thanks for your reply. I took 20mgs the first night and then dropped back to 10mgs which I am currently on. My condition is not too bad during the day but it is in the evenings and at night/early morning that I struggle the most. My bicep muscles ache, my elbows are very sore and my fingers are very tight first thing in the morning. My wrists are also uncomfortable, usually noticed in the evenings. Difficulty washing my hair in the shower etc.

[PMRpro Ambassador in reply to MC60]

Have you ever tried splitting the dose? Because what you say suggests either the antiinflammatory effect isn't lasting a full 24 hours or it isn't PMR because normally nighttime pain is less of a problem. If you take about 2/3 of the dose in the morning at a convenient time and the rest sufficienctly later to carry you through to the next morning dose you sometimes do a lot better and it doesn't disturb your sleep.

But it might well be worth trying what they are offering - you can stop if it doesn't help.

[Elvied in reply to PMRpro]

That is what my Endo has suggested so give it a try

[PMRpro Ambassador in reply to Elvied]

But as I have said - if you have PMR, then only IL-6 inhibitors will let you reduce the pred without symptoms returning.

[EFCB]

check what the NICE TA states for sarilumab if you meet the eligibility criteria then you should be able to discuss this with your rheumatologist.

[cranberryt]

My guess is that they are thinking since it didn’t burn out in a year, it must not have been PMR to begin with. I have yet to find a rheumy in the US who actually understands PMR.

I don’t have any experience with these drugs. I am heading into year 5 with PMR but down to 1mg so have refused other drugs at this point.

Have you been on 10mg for 10 years? Have you tried the dead slow taper?

[Elvied]

my symptoms are the same and I am being treated for seronegative inflammatory arthritis . My markers were up but now normal . I’m struggling to get off prednisone, currently 12.5 . The Endo said reduce by a half a milligram a month. I still have pain though and I’m on methotrexate too . I’ll e interested in how you go with biologicals . Keep well x

[PMRpro Ambassador in reply to Elvied]

If you have PMR but are being treated as if it were seronegative inflammatory arthritis you will struggle to stop the pred. Pred works for PMR - MTX works for inflammatory arthritis but not necessarily for all PMR.

[Elvied in reply to PMRpro]

Thankyou

[MC60 in reply to PMRpro]

Sorry but feeling confused and unsure about yet another drug with potential serious side effects that will lower whatever resistance to infections I have left!

[PMRpro Ambassador in reply to MC60]

I have been on pred for 15 years and Actemra/tocilizumab for 2 years now - haven't noticed any difference in resistance to infections with either compared to before them. OTOH - the Actemra has made a big difference to the dose of pred I need to function and any PMR-type symptoms.

[MC60 in reply to PMRpro]

Thanks, sounds reassuring.

[MC60 in reply to Elvied]

Sorry but feeling confused and unsure about yet another drug with potential serious side effects that will lower whatever resistance to infections I have left!

[Elvied in reply to MC60]

I understand !

[MC60 in reply to Elvied]

I will hope to update once I am on the new drug.