In pain and fed up

[MKinsella]

I am attending a rheumatologist in Dublin for RA, which up until last year had not affected me too badly. Then in July of last year pains in my shoulder which had been bothering me for a while became severe overnight. I couldn’t lift my arms and can’t sleep at night because it’s too painful to lie on them. I also have a very painful left hip which was being treated separately as a bursitis. I also have pains in my fingers and lower back.

My rheumatologist said I was in a RA flare and decided to put me on 10mg of methotrexate and amytryptaline at night. It didn’t improve, in fact it got worse. Then the rheumatologist upped my methotrexate to 20mg weekly and reluctantly prescribed prednisone steroids until the methotrexate kicked in. It was like a miracle. I was completely pain free in 24 hours. It was a tapered steroid dose over a month. The week I dropped to 10mg a day, the pain came back.

I started to do my own research and found PMR which perfectly describes my symptoms. However, my rheumatologist and physio didn’t think it was that and were convinced it was all related to my RA.

I am currently on 20mg weekly (for 4 months now) and 10mg if amytryptaline at night. I am back to square one with all my pains etc. and I am so confused. Are they right and I should give it more time. Or should I be on steroids regularly and is it PMR? I am due to meet with my rheumatologist in a months time. What should I do? Any advice would be gratefully recurved. Thank you

[Chrob]

To me it’s walking like a duck and sounding like a duck . People will be along with more knowledge but just wondering did you have bloods done ? not that they are conclusive. The reaction to steroids seems pretty clear .

[MKinsella in reply to Chrob]

Yes Chrob I had bloods done and it showed very high inflammation but the rheumatologist said that was consistent with RA.

Thanks for replying.

[Chrob in reply to MKinsella]

With PMR as well , any chance of seeing someone else?

[MKinsella in reply to Chrob]

I haven’t fully explored PMR with my rheumatologist. I am thinking I would do that at my next visit before looking for a second opinion.

[crafty_grannie]

Hi MKinsella, I really feel for you. I have fibromyalgia which sometimes is very debilitating. However about two years ago the pain got much worse and was different. Because of the level of pain, I was confused and couldn't describe my pain very clearly, except to say it was different and much worse, and affecting different parts of my body, hips, shoulders and bottom with really bad headaches. My doctor, who I'd originally found to be quite good, just didn't seem to hear me and said it was just a bad flare up of fibromyalgia. We were about to go to Europe (from Australia), and I was dreading it. Almost two weeks later we were in Cologne when I lost most of the sight in one eye overnight. Went to an opthalmologist who did tests and immediately put me on 60mg prednisone daily. Two days later I flew home to Australia for tests which the specialist told me were urgent. Fortunately within twenty-four hours of arriving home, I'd seen everybody I needed to and had started the difficult journey with prednisone, feeling reasonably confident I wasn't going to lose sight in the other eye.

Over the last month or two, my pain levels have gone up again. I've been back to the doctor but she again said it was a bad flare of fibromyalgia. Fortunately I'm still on regular blood tests for inflammation to monitor my Prednisone dose and the last one came back, "skyrocketing" as my doctor said, so she changed my dose from 2.5mg daily to 50mg daily, but still says she thinks the pain is fibromyalgia. I'm ringing my rheumatologist tomorrow to get an appointment as I find him much better to talk to. Sorry I've gone on at such length, but I was so upset at losing most of the sight in one eye because the doctor didn't believe how bad the pain was and didn't know enough to recognise PMR, and still won't accept how bad the pain is now. I don't expect her to know everything, but after what happened last time I thought she might have listened more. I would hate to think that another person's condition deteriorated just because they weren't really listened to. I don't know if you can ask for a referral for a second opinion but I would certainly try.

Hope you're able to get some satisfaction soon,

[PMRpro Ambassador in reply to crafty_grannie]

Oh for goodness sake: fibro is NOT inflammatory, it does NOT lead to raised acute phase markers. Out of interest - how much of what had been blamed on fibro disappeared with high dose pred?

You must have a complaint procedure? And I do hope you can find a different GP.

That is 2 people on this forum alone who were told it was fine to go on holiday abroad with GCA symptoms - and who lost sight in one eye as a result.

[MKinsella in reply to crafty_grannie]

Best of luck CraftyGraine

[crafty_grannie in reply to MKinsella]

Many thanks. At least I have a better idea now than I did when I first was diagnosed. 💐

[powerwalk in reply to crafty_grannie]

Oh awful. I also have fibro. Those pains miraculously disappeared on pred which they are not meant to!!! I too found my gp totally didn't even get the horror i was in withe the pmr pain. I literally was in dire straits crying in het office. Couldnt use my arms. Barely able to walk. Still nothing. Until my husband went down and asked to get me referred as my mobility was so bad. THEN she got blood tests done. Markers very high. Its so scary how some medics just do not listen to people. Best of luck to you.

[PMRpro Ambassador]

Never heard of RA with a polymyalgic presentation? But you can have both - and everyone with both will tell you that mtx doesn't do much for the PMR side.

Whatever it is - it responds to the pred like PMR would and little else does so clearly. Even a flare of RA as far as I know. By the time you see him you will have been on mtx for 5 months - and that is usually felt to be long enough to know if it will help in inflammatory arthritis.

What do you do? Tell him very clearly that mtx doesn't cut the mustard and that the pred does. You would like some decent quality of life - exaggerate if necessary. It sounds as if 15mg would be a good starting point and work from there once the pain is improved.

[MKinsella in reply to PMRpro]

Thanks PMRpro. That was I question I had, if you could have RA and PMR at the same time.

[PMRpro Ambassador in reply to MKinsella]

See Laurapc's post below!

[Laurapc]

This is a carbon copy of my experience. I have RA and I've had PMR for 2 years. Three doctors, two nurses and one physio didn't pick it up so your experience comes as no surprise to me or a lot of sufferers here. I know exactly how much pain you are in and I really feel for you. I spent many months in frequent floods of tears wondering what on earth was going on. My rheumatologist did actually apologise saying that doctors tend to focus on the primary condition. I think you need to get your next appt brought forward asap and explain your symptoms in great detail.

[MKinsella in reply to Laurapc]

Thanks for your reply Laurapc. It’s great hearing your story (well not great for you obviously, sorry) but it makes me think I’m not going mad. Nothing they’ve done has taken away really bad shoulder pain. I have also had two retuximab infusions back in November. I feel more confident now bringing up PMR. Are you in Ireland by any chance?

[Laurapc in reply to MKinsella]

As you will learn here nothing reduces the pain and discomfort of PMR other than Prednisone. No, not in Ireland, I'm in London but we have basically had the same experience. Unfortunately for us we have two conditions running side by side. I am starting Rituximab infusions for RA soon but will still need to stay on the Pred for the PMR. I will be able to begin the taper again once the Rituximab proves to be successful - dare I say it!

Maybe you should print off some of these responses to show your doctor - just a thought. It's a very good resource for back up.

[PMRpro Ambassador in reply to Laurapc]

Why isn't your doctor trying Actemra/rocilizumab for your RA? It works on PMR too.

[Laurapc in reply to PMRpro]

I did try Actemra, it wasn't successful for either condition. Very disappointing, I was on it for 6 months.

[PMRpro Ambassador in reply to Laurapc]

Fair enough - but that does pose the question: is this really PMR?

[Laurapc in reply to PMRpro]

I don't think there's any question. Chronic dragging muscle pain in upper arms and shoulders, neck. Inability to lift my arms or perform any activity involving arms and shoulders. Unable to turn over in bed etc. While I was on the Actemra I was only on 5mgs of Pred. As soon as I went up to 10mg there was a dramatic improvement. I think that kind of confirms it. Would you agree?

[PMRpro Ambassador in reply to Laurapc]

Possibly, although other inflammatory arthritides will respond to pred and can cause polymyalgic symptoms. Psoriatic arthritis for a start - and I think it can also cause joint erosion like RA. But I'm not an expert.

[Laurapc in reply to PMRpro]

The rheumatologist did confirm it and I don't meet the profile for anything else. I definitely don't have Psoriatic arthritis.

[PMRpro Ambassador in reply to Laurapc]

On what grounds - apparently you don't have to have a history of psoriasis to have PsA!! Also said by a rheumy!

[Laurapc in reply to PMRpro]

I’ve had RA for 36 years. I don’t quite get your questioning as to whether I actually have PMR or even RA as opposed to another form of arthritis. It doesn’t make a great deal of sense to me.

[PMRpro Ambassador in reply to Laurapc]

I was intrigued that Actemra didn't help the PMR. I beg your pardon - I thought that previous comment explained my interest.

[Laurapc in reply to PMRpro]

I just read the results of a trial where Actemra was given as an infusion to PMR patients which proved to be largely successful. I was using injections. I have no idea if that affects outcome.

[PMRpro Ambassador in reply to Laurapc]

Injections were used for the GCA clinical trial which gained approval for them in GCA. It isn't approved for PMR but there are US doctors using it and a couple of pilot studies have been written up. The results in GCA with infusions weren't as good - I assume the effect didn't last as well with monthly infusions as bi-weekly injections.

Generally the assumption is that IL-6 is the culprit in PMR but I think that PMR is very heterogenous, possibly 4 or even 5 different versions. Pred works for them all - but when you use something so much more specific it is a different matter. Even in GCA it only works really well for about half, most of the rest get to a lower dose but no off pred and for a few it doesn't help much at all. A very strange pair of disorders - and difficult to pin down.

[Laurapc in reply to PMRpro]

Indeed. I have a friend with GCA which was precluded by PMR, also a severe migraine sufferer. He is doing ok with Actmera but still on Pred and still in some level of pain and stiffness.

I've had doctors say to me ever the years that my RA is as bad as it gets. For the past 18 months it's been a battle between the biologics and my immune system. I never expected the double whammy of PMR which for a while now seems to be just 'simmering' in the background. I noted in one of your previous posts that it doesn't 'go away'.

[PMRpro Ambassador in reply to Laurapc]

You obviously have a very upset immune system!!! What a pain in every sense of the word...

[piglette]

Going from 20mg to 10mg so quickly is very likely to cause a PMR flare. That is a 50% reduction. In my opinion you should go back to 20mg ensure you feel comfortable and then reduce more slowly. The recommendation is 10% reduction maximum at any time. Once you start having pains the PMR has taken over and needs to be stamped out again!

[PMRCanada]

Be firm and advocate for your health. You are the expert in your body, and what you’ve described sounds like PMR. You have raised inflammatory markets and had a positive response to pred. That’s a PMR diagnosis if I ever heard one.

Even if they insist it’s not PMR, what is it then, and what are they prepared to give you for relief that worked as good as the pred??

You shouldn’t have to convince your Drs that you have something, they should listen, investigate and try and relieve your symptoms/pain.

Good luck,

[powerwalk in reply to PMRCanada]

I always feel doctors think you are making things up. They treat you with total suspicion. Thats my experience. Like i need to pay them a fortune for the privilege.

[Joaclp]

Just wanted to say I've had the problem of a history of RA with new PMR symptoms and am under the care of a pretty competent and caring rheumatologist who nonetheless has been a sceptic. It has been and still is a bit of a struggle. You have my empathy. I'd say more but today is a bad pain and fatigue day. All the best!

[daworm]

the more I read about Rheumy's and PMR the less I ever want to see one....

[Chrob in reply to daworm]

I’m thinking just the same , one ex gp told me you have inflammation somewhere but we don’t know why ,go away and take paracetamol and keep warm ! So that’s what I did for some months . I was a fool .