Sharpedge back again

[sharpedge]

You’ve all given me loads of help in the past, however I am still stuck with PMR or PMR symptoms.

I have been on 6mg Pred for ages, last saw Rheumatologist in April, increased methotrexate to 20mg and said he would see me some time in the future. All of this has really made no difference to my symptoms.

About the middle of October I started experiencing very sore shoulders and upper arms. Went to the GP, she put me on 30mg Pred for a week and then drop 5mg every week until back to old dose of 6mg. She also wrote to Rheumatologist. The 30mg and subsequent doses have made no difference, I am now back to 6mg.

Towards the end of October I attended an appointment with a rheumatology nurse. She said “Given that the flare symptoms did not improve with increased dose of prednisone and his inflammation level has been reassuringly normal, I am not convinced he had a flare up of his PMR. I suspect that he has got some steroid induced myopathy (I’ve been on varying doses of prednisone for about 12 years) and background of osteoarthritis. Previous X-rays have confirmed that he has osteoarthritis in his shoulders and hands and I suspect he also has it in his knees and lower back.”

She went on to recommend exercise (there is no way I am in a state to do exercise) and that she would arrange for me to see the rheumatologist.

At this point I decided to go private. I live in Gloucestershire and it appears there is only one private rheumatologist here. His secretary didn’t bother to answer my call.

Deep heat relieves the pain in my shoulders and upper arms but only lasts about an hour or so. I take cocodamol 30mg but they don’t help. I am on blood thinners so can’t take ibuprofen.

Do you have any advice?

[DorsetLady PMRGCAuk volunteer]

Sounds as if you really need to chase up your NHS rheumy - if Pred at any dose is not helping then you probably need to be re-evaluated. Not just PMR?

How did you contact private Rheumy? Email, phone or via a website? Maybe try again, as we all know sometimes things get missed..

[sharpedge in reply to DorsetLady]

Hi Dorset

Private rheumatologist was message on answerphone. I must admit I am reluctant to pay for private and then find I only get an appointment every six months or so.

I’ll hang on for the NHS rheumatologist, been waiting so long what’s another year.

[DorsetLady PMRGCAuk volunteer in reply to sharpedge]

Oh.. message do get erased sometimes.. couldn't say whether on purpose or accidental! 😏

Maybe chase up NHS- not sure how much good it will do, but worth a try..

[Excelsior80]

I'm in Gloucestershire too, people here often go to Bristol or Oxford for specialists. For finding private doctors it could be worth speaking to Nuffield or Bupa? Not that I'm an expert, I never tried that yet.

[EdithWales]

Hi Sharpedge

I saw Dr Gunawardena at the Spires in Bristol. No problem in getting an appointment. He was very pleasant and efficient. I have been on Steroids for 12 years

Good luck

🥂

[sharpedge in reply to EdithWales]

Thanks Edith, first thing on Monday we will give it a try.

[EdithWales]

Just checked to see he is still there, you need not wait as you can just fill in the form on line. I live in Chepstow

Hope it goes well🥂

[sharpedge in reply to EdithWales]

Thanks again Edith, was a bit worried that he would need all records from the GP.

[EdithWales in reply to sharpedge]

He will need a referral letter from your GP, ring the Practice and ask. They are normally delighted that you are being seen as they are well aware of the NHS waiting lists

[sharpedge in reply to EdithWales]

Okey dokes, will do

[PMRpro Ambassador]

I agree that if 30mg did nothing it isn't very likely to be PMR. However, this fixation with "steroid myopathy" does no-one any favours - including the people who DO have it. Does the cocodamol you were taking a year ago help the pain? Have your muscles wasted away? Where IS your pain or is it "just" the same all-over ache you mentioned before?

Have you ever tried an osteopath or therapeutic massage? My back problems are made worse by the PMR but more targetted management achieves a lot more than more pred. I needed over 15mg oral pred for some time to be able to function but I still had pain from my back that felt as if it was all over. Actemra enabled me to get to 7mg but no further but the real pain relief has finally come after 3 steroid injections - the first of which has lasted a lot longer than expected but seems to have broken a cycle of pain nothing else did.

[sharpedge in reply to PMRpro]

Thinking back on it the cocodamol used to make a difference prior to October. I was generally sore when I woke up and about an hour or so of the tables I felt a bit better. Now the tabs don’t seem to make any difference. The pain at the moment is specifically both shoulders and upper arms (left side is worse) and lower back just above right buttock.

I had sciatica on my left buttock running down left leg about three or four months ago. NHS physio sorted that out.

[PMRpro Ambassador in reply to sharpedge]

Those are sites that myofascial pain syndrome could affect but very difficult to say definitively.

[Hidden]

I agree with PMRpro. To begin with Pred took away my pains almost instantly which led to my diagnosis. Then they came back and the diagnosis has been in doubt. Either it is not PMR or my dose was insufficient to deal with the inflammation. Either way I still have the task of reducing the Pred dose but the input from the helpful members here make it less frustrating.

[sharpedge in reply to Hidden]

I think I’m in similar situation to you Lady, when first diagnosed about 12 years ago the Pred sorted it straight away. But since then my doses have gone up and down like a yo-yo and to be honest I cannot remember everything that’s happened.

[PMRpro Ambassador in reply to sharpedge]

We do always say, getting into a yoyo pattern with the dose almost always leads to problems in the long term. It becomes increasingly difficult to manage the symptoms and you can end up in a strange pattern of pain that resembles nothing.

[Hidden in reply to PMRpro]

I found this back in the summer. I was advised a reduction that was too much too quickly and ended up yo yo ing between 15mg and 12 and everything in between. I am much more stable now.

[PMRpro Ambassador in reply to Hidden]

Some doctors complain our idea is slow - but it avoids this yoyoing and it isn't slow when it works.

[Hidden in reply to PMRpro]

Well you can probably remember how up and down I was back in August/Sept 😞

[PMRpro Ambassador in reply to Hidden]

I do

[Hidden in reply to PMRpro]

☺️

[Smithie49]

Hi Sharpedge. Good luck with your pain. I am interested in what you've said as my rheumy, who seems very good, has just upped my dose of methotrexate to 20mg. I've been on 15 since the start of Jan this year when my pred was 7mg. I have flared 3 times while trying to get lower - was very stiff at 61/2 and worse at 6 more recently. I am now back on 7 and am ok but have had pain in my left neck and shoulder for the past 6 months. When the rheumy called last week she wants to see me to check this out. I live on the Glos, Oxford, Warks border so wonder if she - Mrs Ionescu - would be of use to you?

[PMRpro Ambassador in reply to Smithie49]

If MTX hasn't achieved anything since January it isn't likely to. Why do they insist on flogging dead horses?

[Smithie49 in reply to PMRpro]

It does seem crazy doesn't it? I'll try it for a few months but then refuse further. From everything you and others here say, it seems that 7 is my pred dose at the mo. I'd be happier just to have one med floating around my system and that one works. It's given me 3 1/2 years of reasonable life when, without it, I'd have been pretty well laid up. Thanks PMRpro.

[PMRpro Ambassador in reply to Smithie49]

There are a few DMARDs that MIGHT help, MTX is the one they always seem to go for but there are people on the forum who have used hydroxychloroquine or leflunomide and been able to get off pred. HCQ is probably the least unpleasant to try, MTX and LEF depend very much on the patient. My baseline was if I felt less well than on pred alone - no go. After 3 weeks on MTX I could barely put one foot in front of the other all week. I'd already said to the rheumy I would stop it for a work/play trip to S Korea and he was fine about that. By the time I got back after about 4 weeks I was feeling human again - I couldn't have coped on the MTX. I never restarted. I offered to try something else when I was stuck on 19mg pred to even function at a basic level but he said no, this time straight to what we know is going to work and that was Actemra/tocilizumab (in Italy, so he could). I'm absolutely stable on 2 weekly injections and 7mg pred. And after a few steroid injections I have less pain than for the last 20 years. It is wonderful!!!

[sharpedge in reply to PMRpro]

Morning Pro,

So you are now on 7mg Pred and two jabs a week and are feeling much better?

What are the jabs?

[PMRpro Ambassador in reply to sharpedge]

No, jabs every 2 weeks, sorry, missed the hyphen!! Actemra, a biologic. Not available on the NHS in the UK though.

[sharpedge in reply to PMRpro]

Oh. Well you deserve it for all the help you have given people.

Can see why it’s not available on NHS, I had a quick Look on NICE, not cheap.

[PMRpro Ambassador in reply to sharpedge]

There are far more expensive drugs than it! NICE has some funny ideas - but their main point is it wasn't trialed for PMR which is fair enough. However, they don't even allow it to be used properly for GCA patients as it is limited to a year. PMR is equally as disabling in the long term as an inflammatory arthritis - and it is allowed without restrictions for that.

[Smithie49 in reply to PMRpro]

What a journey. I'm glad you've found something that works for you 😊

[sharpedge in reply to Smithie49]

Hi Smithie

I think I’ve been on methotrexate for about five years, initially 15 mg and then 20mg since April this year. I must admit I haven’t noticed any difference with both doses.

Thanks for the Rheumatologist recommendation, but I have already started the ball rolling with one in Bristol.

When you said your rheumatologist called you, for a moment I thought you must be living in another country!

[Smithie49 in reply to sharpedge]

🤣🤣🤣

[Missus835 in reply to Smithie49]

I've also flared badly at 6.5, (it's been building up), so took the initiative to up my dose. Upping to 11 mg has helped a little, but my occipitals and neck are still painful. My wonder is why in all this hubbub about me "getting off pred", why neither the now defunct rheumy or my GP has ever suggested a steroid sparer. It may or may not help, but worth a try and maybe it's not worth it now.

[sharpedge in reply to Missus835]

What is a “steroid sparer”?

[PMRpro Ambassador in reply to sharpedge]

Another medication which is supposed to reduce the amount of pred you require. The most commonly used are DMARDs, Disease Modifying AntiRheumatic Drugs, which are normal medications for RA, but have mixed results in PMR/GCA. There are also now a few biologics which do work very effectively but are not approved in the UK or strictly restricted.

[sharpedge in reply to PMRpro]

Oh, like Methotrexate. Thanks Pro.

[PMRpro Ambassador in reply to sharpedge]

Yes. There is a post today about a study showing it doesn't work - you might be interested.