Not sure what to do!: I last saw my Rheumy in... - PMRGCAuk

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Not sure what to do!

spiritofhilary
spiritofhilary

I last saw my Rheumy in January. She was very concerned because I hadn't done as instructed which was to reduce the pred dose regardless. I seemed to be stuck at 7mg. I had already been having increasing pain in hips and shoulders and the deadly fatigue and night (and daytime) sweats. She was very insistent in pointing out that my inflammatory markers are normal and when I point out that they always have been she replies ".......yes, exactly". She is convinced that I have never had PMR although she can't come up with anything else. She says that the 'condition' doesn't behave like PMR. She even arranged a CT scan to look for something else but there wasn't anything to be found. I was told that the fatigue and walking in treacle feeling was due to having put weight on (accepted) and being on pred too long which has affected the muscles in my legs. Instruction was to get off pred ASAP, lose weight and get some condition back!

I did my best to comply but at the end of last week everything hurt so much that I took it upon myself to take 15mg daily for 5 days as it took that long to get relief originally. Magic! The short walk I do with my dogs was a delight instead of an overwhelming effort and I could walk up the few steps in my garden!

I have now taken 12.5mg for two days but don't know what to do next. It's a struggle to get a telephone conversation with a GP. I know I will need to but how should I proceed until then? It will be next week now before I can talk to anyone. I certainly don't want to speak to Rheumy.

I hope I've given you all the info and look forward to the really good advice available here. Thanks in advance.

20 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Stay at 12.5 for another couple of days, then try 10mg for another 5 days - if not managed to speak to GP would suggest down to 7.5mg.

Try and get GP to agree to that and then a slow taper - like below although others are available- but only 0.5mg a time.

7mg seems to be your sticking dose - so you need to go slow to get through it.

healthunlocked.com/pmrgcauk...

I could have written this . My rheumatologist said it couldn’t be PMR because it only lasts for 12 months ! I can’t seem to get below 7 , and have to increase my dose occasionally. I’m nearly 4 years in now . My next appointment is in August, when he want me to have got down to five mg. so I’m waiting for a miracle.

Stick with the information on here, some very knowledgeable ladies on here .

PMRpro
PMRproModerator
in reply to Manchesterlady

Whereas in fact only 1 in 5 get off pred in a year - and I have never seen a study that claimed everyone gets off pred that quickly. 18 months was the original claim - that's bad enough.

I would go with the advice on this page. All I know about PMR I read on here. Only time I seen Rhuemy he wanted me off pred was at 4 mg at time and struggling to get lower on letter I got from him said I had presumed PMR left appointment almost in tears. Still on 4mg a year later.

Get another rheumatologist who knows what they're doing. Or do you even need a rheumatologist at all? They can't really do anything your GP can't do, apart from switch you to DMARDS etc, and if you're doing OK on Pred why change? With the help from this group, you'll learn how to manage what dose to be on and discuss it with your GP.

PMRpro
PMRproModerator

Try 10mg - saves pred for the long term. I would refuse to see the rheumy again PROVIDED you have a GP who will play the good guy. I just cannot believe the ignorance of some doctors about PMR.

If 7mg is where you stick - that is your body telling you very clearly that is what you need for now. And then every couple of months try a small reduction using one of the slowed tapers. If you go really slowly you MIGHT get past it - no guarantees though!

I'm beginning to think we need to get someone to do a survey using the members here. Two questions: how many had normal range blood markers at the start and how long have you had PMR symptoms that respond to enough pred. Maybe a third: how did you manage adverse effects successfully.

I have every sympathy with their fear that this isn't PMR after all. But when you have exhausted any evidence of something else and pred works to manage the symptoms - where is the problem?

jinasc
jinasc
in reply to PMRpro

Got an idea - the two S's?

I have never known so much hurt that is being thrown around with PMR as now...........why?

No I can't answer that..........but got an idea from your post - OOMPA.

Hi there,

Poor you,I m going though this same problem!

I was so upset on Monday ,doctor knows I have pmr but very young rheumy is a waste of time!

Saying I haven’t got pmr after telling me I had at my appointment with her in February of this year!

My doctor has now given me a copie of the letter she had sent him and the one I never received by post.

Saying I have fibromyalgia and that I need to stop my preds right away!!

No way!

She wants to trail me on duloxetine 30mg for 2 was then go up to 90mg ,I have chosen not to do this.

I ve had to go up to taking 20mg of preds this week as the pain has returned in legs,neck and shoulders.

Then I will taper down slowly.

I also take 5mg before I go to bed and the rest early before I get up,and it really helps me get out of bed.

I wish you well,we have some great ladies on this site who will help and support you though this difficult time.

My blood boiled as I began reading your post. Honestly, how can there be so many incompetent rheumatologists when it comes to PMR!

Thank goodness you know more, had the prednisone on hand, and did the right thing.

Canarylady
Canarylady
in reply to nuigini

Thank you for understanding my post,thing is this very young Rheumatologist had written down different things on the letter that we hadn’t discussed!

Even my doctor checked my name and address on the letter sent to them as none of it made sense!

I don t trust her advice and will not be going off my steroids to go onto another lot of tablets that won t help my inflammation,my pain is now under control,after a bad week.

PMRpro
PMRproModerator
in reply to Canarylady

" this very young Rheumatologist had written down different things on the letter that we hadn’t discussed"

That isn't uncommon - a lot of us have had cc letters and wondered if we were present at that consultation! I would make a complaint - because if she is getting patients mixed up and dictating the wrong thing it could lead to serious problems for some patients.

I know people who have had similar experiences and now take either a friend/family member to take notes about what is said or even record the conversation so that they can listen again to be sure they have it right.

Canarylady
Canarylady
in reply to PMRpro

Thank you for getting back to me,yes I will write a complaint about her,I hadn’t thought of the other patients having the same problem with her.

She shouldn’t be dealing with patients without another doctor being present.

And I would hate for something to be missed and that person not being treated properly.

I had a rheumy like that. I had some years of history of bloods being fairly normal despite distinct pmr problems. GP at the time did not push it - has expressed concern about my problems with reducing at certain points but has largely let me get on with it. Once a year she rings in the hope I can get down further - presumably when they have an audit of prescriptions?

I suppose they are all anxious about the pred given the covid concerns but I doubt any of us would wish to be on more than we need but do need a bit of quality to life ie being able to get out of chair at least!

Poor you,again these rheumy s do not want to understand the horrible pain we get,glad your doctor has let you get on with it,mine gave me some extra preds,until I get to another doctor next week as I m moving to Worthing for my new job.

I wish you well.

I have been on Pred since diagnosis of PMR in 2013. My start dose was 20 mg, and currently am on 7 mg. I have tapered down to 2 mg several times, before being forced ( by painful flares) to return to higher dose. It seems 7 mg is my maintenance dose for the now.

My recent visit with rheumy (via telephone conference) she recommended staying at 7 Till next visit, (6 mo).

Just my experience here...

Very same problem here, too. Only I have a high need for a high pred. dose, it seems. 30mg helps but I try to get by with 25 until I am screaming and then I give in and take an extra 10. I'm such a mess, and I can't get anywhere with improving. I don't know if it is PMR now, but the pred does help if it is high enough. I can't go on sometimes.

But we do, don't we, "go on"! We have no choice.

I sympathise with you - I have seronagative polyarthritis (7 joints) and PMR (since 2012). I am lucky, I am down to 4mg - which seems to be my "maintenance dose" (touch wood)!

It seems to me that the pred helps the arthritis pain - it shouldn't, but it does (probably the inflammation). I also take cocodamol - 2 in the night, 2 in the day, which seems to help both - again, it shouldn't, but it does.

We are all different! Keep fighting!

Regards fr Constance.

Hi constance13,

You poor thing,it will improve with time.

I m on a higher dose of 20mg at the moment and will start to taper down next week,very slowly.

We are all here to give you support and the other lovely ladies will be able to help you too,they are just brilliant.

Ruth

I know! I've been on HU for 6 years. I'm one of the "oldies".😂😂

Oldies??never!😂🤣

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