I was diagnosed with PMR 4 years ago and have been travelling a rocky road ever since. I go through phases of being well and then something kicks off. Many of you here will have read my ramblings and as always everyone is helpful and supportive. The past 18 months it has been my knees - one at a time, not together which has been incredibly difficult to manage.
Have tried Leflunomide and Hydroxychloroquine along with prednisolone. Currently on 7mg pred and hydroxychloroquine, gave up leflunomide back in April.
Bloods continue to fluctuate and all my markers are running high.
My rheumatologist is now recommending I start Etanercept and it has been approved by my local hospital. She believes I’m now falling into the sero negative category. Does anyone on here have any experience of this biologic? Is there anything I should be asking about? Just trying to do my usual research beforehand. I won’t be taking methotrexate alongside as my LFTs are regularly raised therefore it’s been decided against it.
Any help would be much appreciated. Thanks.
Written by
Lochy
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The DRUGS website says this about using Etanercept with pred.
Using etanercept together with predniSONE may increase the risk of serious and potentially life-threatening infections. Talk to your doctor if you have any questions or concerns. Your doctor may already be aware of the risks, but has determined that this is the best course of treatment for you and has taken appropriate precautions and is monitoring you closely for any potential complications. Contact your doctor immediately if you develop signs and symptoms of infection such as fever, chills, diarrhea, sore throat, muscle aches, shortness of breath, blood in phlegm, weight loss, red or inflamed skin, body sores, and pain or burning during urination. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.
"Recommendation 8: (PICOs 10–11) The panel strongly recommends against the use of TNFa blocking agents for the treatment of PMR.
The group agreed strongly against the use of TNFa blocking agents in PMR at this time since there is no evidence for benefit, but there is a considerable risk of potential harm and high resource use."
If a doctor wants to use a biologic medication for us then it should be tocilizumab/Actemra or another targeted at IL-6 as that is where the various pilot studies have been aimed after the success with tocilizumab in GCA.
However - what evidence has your rheumatologist got that you do not have PMR but sero-negative RA? WHY does she think it is seronegative RA?
I'm not sure of the situation in the UK, but the use of tocilizumab is accepted for RA here and my rheumatologist has told me that while he needs to seek approval for it for a diagnosis of PMR (it is allowed for biopsy or imaging-proven GCA) he would be able to use it immediately were my diagnosis RA. IF a biologic were to be tried - why not start with the one that is known to work in GCA and will also almost certainly work for PMR if it really is PMR after all?
I still believe that before they make a song and dance about new medications for PMR they need to identify a fool-proof way of making the diagnosis!!!!
Thanks as ever for your detailed reply. I never asked why etanercept instead of other Biologics. It was a telephone consultation and didn’t feel I had as much chance to add my usual tuppence worth.
I believe sero negative RA as negative for RA factor; have struggled to taper my prednisolone and have got stuck or had to increase my dose many times; large effusions and bakers cysts in both knees, separately; no sign of any OA or joint damage on X-ray or MRI just odd meniscus tear which they feel is appropriate for age and stage and relative to my activity/sporting history.
What else should I ask to clarify this diagnosis?
My rheumatologist tells me I’m the only one under her care who’s PMR is not responding as she would expect and hence her willingness to try a different course! My inflammatory markers run too high and she feels we should be trying alternatives. I know my name had to be put before a committee of her colleagues to approve the use of the biologic so I’m therefore assuming they all believe this is the right course of action. Who knows? I live in Edinburgh so I imagine they see a large number of rheumatological conditions. It’s so hard to know what the best course of action is especially when I don’t appear to fall into one particular box!
I’m also concerned about starting another drug at this time as I will be further immunosuppressed.
It’s hard to know the right questions to ask but I will write to her asking why not tocilizumab.
Obviously led a sheltered life! Sounds only too familiar to me ...
I assume she has checked anti-CCP? RF isn't taken as particularly informative these days I gather, It is difficult to know - except someone rheumatological decided it was PMR originally. If the only reason for deciding it is now RA is you aren't the same as her other patients - that seems a bit weak to me.
Thanks for detailing your experience, a lot of which sounds very positive. It’s very hard to know what to try and one is guided by your rheumatologist. When struggling with very painful swollen knee I’d have happily taken any drug !
I’ve written to her today asking for her reasons for trying Etanercept first and why she believes I have sero negative RA. I need to understand myself. Will be interesting to see her response.
I was diagnosed with PMR 6.5 years ago. I couldn't get below 10 mg pref. Because of that I was sent to see a rheumatologist. I saw a different one each time. I was told I had Seronegative arthritis. I was on steroids and also put on Hydroxychloroquinine, that did nothing, so started on methotrexate. It didn't work so I was put on Benapali plus steroids. They did nothing so I was changed to Himura and restarted methotrexate and switched to the biosimilar Imraldi but still on steroids, but reducing them. I was told I had psoriatic arthritis, then I didn't and now it's Inflammatory arthritis. I have been lucky and had very few side effects from these various drugs. The only thing that has shown up in tests is I have a P-Anca . I also have OA. I have swollen knees and am waiting to see an orthopaedic surgeon in November .
Oh dear you seem to have been through the mill. Did any of the drugs you tried help you reduce the steroids (which seems to be the ultimate aim for all of our doctors)
Have they eliminated PMR diagnosis or do they just not know?
It’s almost as if having PMR for several years and just taking prednisolone is not allowed or not recognised as being a possibility!
I just worry that my inflammatory markers and LFTs run high pretty much all of the time and feel this must not be good for me.
My inflammatory markers are mostly ok. I am down to 3mg pred now, decreasing 1mg a month. My gp thinks I had and probably do have pmr but as she diagnosed me I wonder if she just doesn't want to admit to being wrong. I am now seeing one of the top rheumatologists who decided I need to see a consultant and not just any number of different rheumatologists. I just seem to chug along, have an appointment and he says how well I am doing and I say that I don't think so as my knees are so bad. He says they are OA but I don't think it is all that.
And he hasn’t offered X-ray or MRI on your knees? I’ve had both on both knees - one knee arranged by my rheumatologist and the other knee arranged privately as I was so fed up. At least it showed no OA just Baker’s cysts and large effusions. Bit of wear and tear but nothing unusual for a previously active 60 year old! Both knees have calmed down.
The left knee was really swollen and painful for around 18 months. It responded to steroid injections but after three the benefit was short lived. I persuaded my rheumatologist to prescribe valacyclovir, an anti viral, after a lot of research and some belief that Epstein Barr virus may have something to do with my inflammation. I have been described as highly positive for EBV antibodies despite the fact I’m totally unaware of ever having had it. Unbelievably my left knee responded within 10 days and is still great to this day. I stopped the valacyclovir mid May.
Weirdly my right knee kicked off mid March this year and there was no response to valacyclovir or to a steroid injection. About a week ago it settled of its own accord and is still ok - not completely free of swelling but virtually pain free. I had been on a trip to Canada early March - against everyone’s better advice - so perhaps the stress of the trip caused my right knee to react. Everything else was fine. It has even been suggested that perhaps I had Covid as there had been anecdotal evidence of swollen joints in Covid patients. It was an orthopaedic consultant friend who told me that. No other symptoms, no thoughts I had it, so no GP contact or testing so who knows.
None of this is explained in any logical way. There is nothing proven that there is a viral influence in PMR. Something worked for me and I was delighted. The fact that my right knee kicked off and my inflammatory markers rose again has led me to where I am now, contemplating Etanercept.
I believe my rheumatologist is trying to do her best for me and she has seen the pain and discomfort I have experienced with my knees hence she feels it’s time to try something else. Whilst my knees are good this week I’m scared they react again and I go backwards. Preempting what will happens is impossible but we all know how horrible life is when in pain.
I’ll wait see if she responds to my email yesterday and can give me more reason for trying this biologic.
I would have had an xray in April but my appointment was a phone one, so I have to wait until November. I have had fluid taken off and steroids injected in but that only lasts so long. Every thing just takes so long. I hope you are lucky and find something that works...
I have sero-negative RA or inflammatory arthritis and have for close to 27 years. I also have PMR for just over 3 years. I take leflunomide and etanercept and have for several years - certainly more than 5, so PMR developed while I was well controlled with the drugs. People have told you about etanercept being an anti-tnf and leaving one vulnerable to infections - having read the blurb and seen a different consultant before being prescribed it, I know all about it. However, my experience is that colds last a bit longer and chest infections need help. If antibiotics are indicated then I stop both medications for the duration of the course. I don't feel as though I am more susceptible to infections - just that I take a bit longer to shake them off. To me, it's worth it.
What I am a bit confused about is that you seem to be being offered etanercept with pred. If that is so, I'm wondering if they have changed the protocols because when I was first prescribed it, one had to be taking methotrexate. I did not get on with it, so my taking leflunomide was acceptable. Do contact me if you want to know anything.
BTW I seem to have contracted covid-19 back in December. A cardiology consultant looked back through my blood results since then (very sharp spike in inflammatory markers that took 4 months to return to normal for me) and took my symptom history. He said that until an antibody test showed otherwise, I should assume that I had been infected.
Interesting tale! I’ve been on pred since March 2016 so any drug I take will be with that until I can taper off the steroids🤞🤞
My liver function tests have always been high and they fluctuate regularly. None of the medics understand why but we’ve agreed there’s little point in trying methotrexate. You’re correct though that etanercept is usually prescribed alongside methotrexate.
My lovely lady consultant has been fabulous. At least takes an interest in me and asks my opinion! I was lucky to avoid the old grumpy one but heard about him!
I’m still waiting to hear more from then but past few weeks I’ve been feeling good and neither knee is swollen which is nothing short of miraculous for me. Don’t think I’ll start a new drug just yet and see how it goes. I’m off to get my bloods done now so will be interesting to see what they say.
Just to add, Lochy, that at the WGH, they view etanercept as the least harmful biologic, so that is the one of choice to start on. At least our least favourite grumpy consultant has now retired!
Which is fine - but they appear to be a bit lacking in understanding of how the biologics work! They are so specific in their mechanism there is no future in using them in illnesses where TNF isn't a factor. As in PMR ...
The issue about etanercept is that is does reduce inflammation - quite dramatically - and has been a very useful drug to use for all shades of inflammatory arthritis. One of the principals of inflammatory arthritis treatment is to hit it very hard to send it into remission if possible. It is a very successful strategy which reduces the number of people who become disabled due to joint damage.
I can see how the ability of etanercept to reduce inflammation so significantly could be of huge benefit to PMR sufferers, especially those who have to continue to take high doses of pred. The daily side effects of etanercept are tiny and for many, the increased risk of infection worthwhile for the potential benefits. For what it's worth, I would prefer to take etanercept if it reduced the pred, but I am speaking from many years of experience and an awareness that I was facing total immobility before treatment started.
Sorry - obviously I wasn't clear enough: biologics of all sorts have very specific actions. Etanercept works in autoimmune diseases by interfering with tumor necrosis factor (TNF, a soluble inflammatory cytokine) by acting as a TNF inhibitor. It ONLY works on TNF mediated inflammation which is quite common in a few forms of inflammatory arthritis, especially the spondyloarthropathies.
It is known that the inflammation in GCA, and therefore presumably PMR as a similar disorder, is mediated by 3 different possible mechanisms: IL-6, certain T-cells and B-cells although the mechanism there is not clear. Tocilizumab works against the production of IL-6 which is the main or most common element of GCA. But it only works for half of patients - because the other half have one of the other two problems in addition to the IL-6 one. They are able to reduce the dose of pred but not stop it altogether, But there is no role for TNF in the inflamamtion of PMR and GCA and so those biologics don't work, and may even cause severe adverse effects,
Yes, etanercept is brilliant at its job - but it is horses for courses. PMR and GCA are vasculitides, not arthritides, and are caused by something else.
This is why everyone who is offered etanercept is offered a trial of the drug - mine was 3 months. It will either work for the inflammation or not. Lochy was saying that they suspected sero negative RA in her case, so it is definitely worth a pop if nothing else is working for her and she thinks it is a wothwhile step to take. Don't think for a minute that I am advocating for the biologicals to be prescribed willy-nilly - I am certainly not. I am quite sure there is very careful consideration given before it is even mentioned to the patient, and that is how it should be.
Thanks for the detailed explanation. I feel I have more of an understanding of what the drug is supposed to do.
I have found a CCP blood test from a few years ago but is that the same as an Anti CCP? Presumably I can be tested for TNF ? I would hope it would be done before I try etanercept.
About 20% of RA patients are seronegative - which means even CCP is normal. But obviously she thinks you have seronegative inflammatory arthritis. But since the original idea was it was PMR, I just wonder why she doesn't try tocilizumab - which is also used in RA.
That’s one of the questions I’ve asked in my email. No idea how long it will be before I get a response.
I’ve been doing well the past two weeks so unless my bloods show continued rising inflammation I’ll not be in any rush to take another drug. Will consider my options if my knee flares again.
Thanks for your input it is so helpful at keeping me informed.
I think that the protocol in the WGH, where we both are, is that Etanercept is that first biological offered. If it is tolerated and works as well as they expect, there is no move to try another. When it stops working, another is tried.
It sounds like it’s a fine line between a PMR or RA diagnosis especially when one doesn’t seem to fit either box that well.
I feel I’m rather at the mercy of the rheumatologist I happen to be allocated. I just have to ask as many questions as I can and take the advice they recommend. Don’t really want to take any powerful drugs unnecessarily especially when they suppress your immune system even more!
I’ll be interested to hear why they think it is the right drug for me. At least I know to ask the questions and try and ensure I’m receiving the best medication for me.
Still haven’t heard anything , still feeling well but I’ll keep you posted on what happens.
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Tocoilizumab, has anyone tried it yet?
Methotrexate done... now about the try Leflunomide
I am wondering if anyone has tried Reiki?
