Continued discomfort

[Tescohednesford]

Hi everyone.I was diagnosed with PMR beginning of Feb and was on 20 mg of pred with my not very sympathetic Dr telling me to drop by 5 mg every 2 weeks....when I dropped to 10 I was in a lot of discomfort he then said drop by 1 mg each 2 weeks...

I'm now down to 8 mg from this weekend but I have continuous discomfort in my 1 arm and it's been this way for weeks.

I go on holiday Friday should I up my pred just for the week I'm away so I can enjoy my Spanish holiday...

I'm suffering not just fatigue but overwhelming sadness and don't want to spoil the holidays for our friends who are with us...

Sorry for the long msg...

Thank you.

[SheffieldJane]

Have you had medical advice about your arm pain? It could be another condition. What is the nature of it?

I honestly think that your initial taper of 5 mgs has triggered this problem. It was too much, too soon. My Rheumatologist gives me my head these days. My inclination would be to increase my dose until I felt comfortable and actually stay there for a few weeks to allow everything to settle. What would you be inclined to increase your dose too? I would be tempted to start again or at least go back to 15 mgs and do very small decrements, well spaced. My first two were about 6 weeks apart and never more than 10%. Have a look at the guidance in FAQs accessed on this page. Your doctor doesn’t seem to have much of a clue. I hope you enjoy your holiday. This is a significant, systemic disease, have plenty of rest.

[Tescohednesford in reply to SheffieldJane]

Thank you ... trouble is because I feel so depressed and lethargic all the time and I know that's the steroids I suppose I want to be off them asap too.I also have constant headache and have done from beginning of illness also attributed to pred..

My next Dr app (telephone) is 30th May....

I think I'm going to take higher dose and enjoy my holiday..

Thank you.

[Tescohednesford in reply to SheffieldJane]

Sorry didn't answer that...Arm pain disappeared when I was taking 20 mg well all discomfort/pain had !So I'm assuming it is PMR as I never suffered before.

I've only seen Dr once since diagnosis and that was 11th Feb I've had blood tests but nothing else.

I think I will up my dose of steroids for my holiday..

When home I will make sure I see a Dr and stop accepting that I just have to put up with this

[Koalajane]

it looks very much like your doctor knows very little about PMR. This taperingbregime is far too fast. You need to stay at a dose long enough to know you can then reduce. To stay on a dose for 2 weeks is not long enough and to suggest you drop by 5mg at the start was ridiculous.

Is it possible to see another doctor at your surgery who is more sympathetic and more understanding of PMR?

PMR can last an average of 5.9 years so you cannot whizz down the steroids to zero.

I hope you have enough steroids to increase for your holiday and if it was me I would increase to 15mg. There are others on here who are more knowledgeable and hopefully will be on here soon.

Have a good holiday

[Tescohednesford in reply to Koalajane]

My Dr informed me ...he sees at least 2 cases a year....That was told me whilst he was filling in the paperwork on screen....

I haven't seen anyone since the 11th Feb but have had a blood test and was told by receptionist that Dr thinks bloods were good and no need to see him..

I'm going to increase my dosage and enjoy my holiday...

I have enough steroids as I just asked for more and they sent prescription..

Thank you.

[DorsetLady PMRGCAuk volunteer]

First advice would be [although I know it’s not that easy] is get another doctor who understands PMR - your current one obviously hasn’t got a clue…

I’d be inclined to treat as a flare- so add 5mg to current dose.. you can stay there for up to 14 days - and then drop back down to 9 or 10mg…. Not 8mg .

This explains it more fully -

healthunlocked.com/pmrgcauk...

In one of your previous posts I did suggest seeing a Rheumy for a private consultation- any thoughts on that?

You certainly need someone who understands…

Enjoy your holiday as best you can…

If I didn’t send this before, please have read through -

healthunlocked.com/pmrgcauk...

[Tescohednesford in reply to DorsetLady]

Thank you DL....It's just this horrendous depression...any ideas on how to deal with that

I am under loads of stress which I'm not able to do anything about....so am feeling that has a lot to do with my condition...

But as haven't seen Dr am only assuming...

[DorsetLady PMRGCAuk volunteer in reply to Tescohednesford]

Unfortunately PMR itself can cause depression,, as can Pred … and we would normally say speak to your GP get some help - not more medication, there are other therapies- but in your case not sure GP will be much help…

This might help - was written during Covid - but applicable still, or you might like to raise a new post asking others for their coping strategies -it’s often discussed on here, and then you will realise you are not alone… which sometimes helps a little -

healthunlocked.com/pmrgcauk...

And stress will feed your PMR - as many of us well know.

[PMRpro Ambassador]

I have just written something very similar - I have now tried 7 to 6 about 5 times and every time am driven back by aching biceps and elbow pain that is probably bursitis, My bicep pain does remain fairly stable until I have to lift anything like a shopping bag but it is gone at 7mg.

I would take what I need to enjoy the holiday - using the flare protocol would cover it nicely but use just the amount extra you need if you don't need 5mg extra. When you come back, see A doctor - but if it is at all possible, not the one who set such a daft reduction having diagnosed PMR. That is a reduction that is appropriate for the use of pred in acute situations - a flare of RA even. But it is far too fast for PMR and may well be the source of your problems.

[Tescohednesford in reply to PMRpro]

Thank you...I will take your advice and up it....I want to enjoy my holiday.x

[PMRpro Ambassador in reply to Tescohednesford]

I should think so!

[Sharitone]

Just a thought: did your headache start before or after starting pred?

Have a happy holiday!

[Tescohednesford in reply to Sharitone]

After....I've only ever had the occasional headache....never suffered before..

[piglette]

It looks like your doctor has no knowledge of PMR and steroids. As the others say you need to look for another doctor. I had a rheumatologist like that. At least he only wanted me to reduce by 5mg every 3 weeks not every two weeks! Although he did blame me that my inflamation markers were not going down. As if I could do anything about it!! I am sure that is why I have had trouble reducing ever since. The rule is if you are not comfortable, don’t reduce. Slowly but surely.

[Tescohednesford in reply to piglette]

I intend to up my dosage and take it much slower when i taper....Thank you.

[piglette in reply to Tescohednesford]

Good idea. Your body will tell you when you feel OK to reduce. My rheumie got most annoyed when I said I was in pain and felt I should not reduce for a while. He insisted I reduce 5mg by the time I saw him a month later, so I left him!!