First visit to Consultant Rheumatologist and not ... - PMRGCAuk

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First visit to Consultant Rheumatologist and not good news

Rebel21 profile image
20 Replies

Hi sorry been quiet for a while, but have just been getting on with relapse after relapse. Diagnosed by gp with PMR last November 2019. Started on 15mgs Prednisolone with good result, but each time I tried to reduce never got below 10mg before all symptoms kicked in. Waited 11 months for my appointment with rheumatologist, which I had last Wednesday 7th October. After her listening to my symptoms from beginning to present day, she told me she didn't think it was PMR, but more than likely I had psoriatic arthritis. Despite never having had psoriasis, which she kept asking me about. I think as a trained nurse I would have known if I had. She wants me to commence Methotrexate next month providing all the blood tests and chest xray she ordered allow it. She is phoning me on 5th November with her decision. I still feel that it is PMR but because I had symptoms for months before diagnosis she says PMR comes on acutely. Has anyone else had this and don't know what to think. I am at my wits end at the moment, still having flare ups still on 12.5mgs of prednisolone but now also hypertensive so on Amlodipine 10mg aswell. Was due to try to reduce my prednisolone next week but rheumatologist said leave them for now until she decides what to do. I just don't know what to think. She says she can control the psoriatic arthritis better with methotrexate but that obviously it will never go away and will eventually get worse. Would appreciate some advice.

20 Replies
Constance13 profile image
Constance13

"PMR comes acutely"? Never heard that one before! These doctors/rheumies seem to read different medical journals to us.

Mary63 profile image
Mary63

Mine came on gradually over three months and then when it was at its worst took a few more months to get a diagnosis.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Agree with Constance- it does not come on acutely. Appears to me she know very little about PMR - oh dear!

Can you tell us how you tried to reduce - and anything else relevant that might explain why the reductions were unsuccessful - were you still working, under stress, etc.

I guess you probably tried 15-12.5-10mg method?

Perhaps while you are waiting for her decision, you could try 15mg again - see if that makes any difference - and then try 1mg reductions - that might be easier.

Your GP seems to have more knowledge than Rheumy so is it possible to discuss your concerns with him before he gets letter from her, and maybe get him on side re PMR v PA.

Rebel21 profile image
Rebel21 in reply to DorsetLady

I reduced from 15mgs down to 12.5mgs and was doing ok, the problems seem to start when I drop from 12.5mg down to 10mgs. I get shoulder pain, legs become painful and heavy, struggle to turn over in bed. I haven't worked since January this year, and think that they are probably going to finish me in the next couple of weeks, nhs not the best people to work for, not such a caring profession. I have had 4 relapses and after the last one my gp increased my Predisolone up to 20mg, so have reduced by 2.5mgs every month. Feel not too bad at the moment apart from severe back pain that came on about March, and being unable to walk very far due to back pain and severe shortness of breath. I am not sure if I will be able to speak to a go but will try, they are difficult to get hold of at the moment. Will try later.

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Most medical literature mentions sudden onset PMR - but like everything else with PMR some doctors seem to have selective memories! When it is sudden onset a lot of people realise it wasn't really when they think about it - there were symptoms beforehand.

southerncross.co.nz/group/m....

says

"In some cases, the onset of PMR can be sudden and dramatic, with severe symptoms literally appearing overnight. In other cases, the condition appears gradually over a period of several weeks. Symptoms are often worse in the morning, when they may be disabling, but tend to ease off by the afternoon. Symptoms are often more noticeable after a period of inactivity. ...

... When the onset of the condition is sudden and dramatic, a diagnosis of PMR may be relatively easy to make. However, when symptoms develop gradually it may be less obvious that PMR is the cause."

PMRpro profile image
PMRproAmbassador

I had a rheumatologist who wanted what I had to be anything but PMR - psoriatric arthritis was mentioned. So was ankylosing spondylitis - ruled out with imaging. I, too, have never had psoriasis - but it IS possible to have PsA before the skin effects are seen. An aunt had psoriasis - that was adjudged to be history enough! My PMR - like that of many others - also crept up before hitting like a ton of bricks but all flares since then have been similar. I also find it impossible to reduce below 12mg, even 12mg poses problems at present with the stress of the last 10 months. I have in the meantime tried mtx - had to say no more after a month, the fatigue was overwhelming and I couldn't function. Now I am sole carer that isn't an option - on pred I can manage what MUST be done that you couldn't "buy in". Covid put the mockers on the cleaner - dust is very patient, it always waits ...

I've been on bisoprolol and another drug for BP and atrial fibrillation for over 6 years - almost certainly due to the autoimmune disorder, whatever it is, as it always gets worse with a flare. I carry a dosette box with me - tablets 5x a day and that's without calcium supplements! You get used to it - but if the amlodipine causes problems, don't put up with them, it isn't the only BP drug on the list but you'd think it was the way the UK uses it!

Constance13 profile image
Constance13 in reply to PMRpro

"sole carer"?? Surely your husband can get social care with all he has to put up with - and YOU of course. Official "home help" is meant for the carers too. My OH has to do quite a lot as I have severe OA in fingers, wrists, elbows and shoulders - can't do very much with that lot being affected.

PMRpro profile image
PMRproAmbassador in reply to Constance13

Still waiting for the assessment - applied in June/July, assessment will be early November. But he can't go anywhere alone - so I have to be able to drive for him to go anywhere. Shopping for food - or he'd starve, cooking that food (apparently household duties don't score highly, it is assumed you do them anyway!). Answering the phone, making phone calls for him. He doesn't actually need help dressing or showering - but it takes him forever - and then there is the process of his medication which he does alone but I need to be around. I don't see anyone coming to do that for me, do you? And as you say - there are things I can't do easily now. Standing on steps is out - and I need to to get things from shelves he used to be able to reach!!! It is a lot of little things spread over the day/week - very difficult to quantify which is what they ask.

Constance13 profile image
Constance13 in reply to PMRpro

It's not easy I know. Most of the questions they ask are to do with 'personal' things- like washing, dressing, medicines to be taken, etc etc. However "quality of life" was also mentioned. Can't see you have a great deal of that at the moment (either of you).😏

Good luck with the assessment. C.

PMRpro profile image
PMRproAmbassador in reply to Constance13

It probably isn't any different than just Covid to be honest! He is improving - so they won't see him as he was for about 3 or 4 months earlier on. He said I'd need to tidy up - I pointed out that wasn't a good idea, they needed to see I was struggling a bit ;) I leave things out to save the actions of getting stuff out and then clearing away! The ironing board lives in front of the TV ...

Constance13 profile image
Constance13 in reply to PMRpro

Quite! Laying it on a bit is the only way to react - others doing far better than you or me seem to get it.🤨

MrsNails profile image
MrsNails

My “Sticking Point” was always 11mg - l’ll attach ‘My Methotrexate Story’

healthunlocked.com/pmrgcauk...

Kind Regards

MrsN

suzy1959 profile image
suzy1959

My PMR came on gradually too. I have had it for 8.5 years so far and not got below 11mgs without problems for all that time. I had to get through 4 Rheumy's before finding one that didn't blame me for the problems reducing! Those of us with "long PMR" do wonder if it may be a slightly different form . Whatever it is, it is not our fault!!

Having said that, your reduction plan has been with large drops, especially 12.5-10 mgs. Many people could not manage that drop ever. The golden rule is not to drop more than 10% at a time. A slower reduction may well get you much further. Have you tried the DSNS taper plan? You can find it in the archives here. It makes sure that you don't get withdrawal pains which can mimic PMR pains and that by doing it slowly, you can find the dose that is the lowest at which you are comfortable.

PMRpro profile image
PMRproAmbassador in reply to suzy1959

The Dead Slow and Nearly Stopped taper:

healthunlocked.com/pmrgcauk...

Rebel21 profile image
Rebel21 in reply to suzy1959

I have decided to just reduce by 0.5mg to 12mgs this time and see how I go on.

piglette profile image
piglette

The number of times I have heard ‘they did not think it was PMR‘ on this forum when it was is ridiculous. Rheumatologists then leave people in a lot of pain due to their incompetence. Grrrrr.

Theziggy profile image
Theziggy

Mine came on very swiftly - bang! But then I have palindromic rheumatism so maybe it presents differently, though I know it shares a lot of similarities with PMR.

Rugger profile image
Rugger

I had 6 months of aching arms and feeling unwell without being able to say exactly why or how. Then the symptoms escalated and suddenly I couldn't get out of bed! So acutely, yes, but grumbling for months beforehand.

Rebel21 profile image
Rebel21 in reply to Rugger

This is how I felt. I broke my shoulder in February 2019 and started physio for this in the April, In about July I noticed my other shoulder was hurting and the physio felt it was because I was using it more, as the months went on I had aches and pains every where, neck, shoulder, heavy legs when walking trouble getting up of sofa and some chairs. Eventually struggling to turn over in bed. Then boom, one morning couldn't get out of bed in November, phoned gp and told him my symptoms and lo and behold he knew what it was. Had to go that day for blood tests but he didn't wait for results and started steroids that day, it was like a miracle had happened. I told all this to the rheumatologist but she still says it's psoriatic arthritis.

PMRpro profile image
PMRproAmbassador in reply to Rebel21

None so blind as those who don't want to see ...

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