Worried

[JsyAnne]

Got diagnosed PMR about a month ago but doctor seems very surprised I'm not feeling better after taking steriods . He keeps picking up on the fact I had a couple of good days but there's been a lot more bad ones. I've had pain for many years with arthritis but with this it's the the wobbly feeling like my legs don't belong to me and I have to hold into walls when out and about or sit down for a few minutes after just a bit of walking. Feeling totally drained and it's so hard to explain the feeling to anyone not going through it. Also GP now doing different blood test like he's not sure of his diagnosis. Very worrying

[SheffieldJane]

What start dose are you on? It could be that it is not enough. It should be between 25mgs and 15 mgs with no tapering as your symptoms haven’t settled. I started on 20 mgs and got miraculous relief after 2 days from severe pain and stiffness in shoulders and groin, being unable to get out of bed unaided and into the bath at all. Does this sound totally alien to your experience?

[JsyAnne in reply to SheffieldJane]

Hi

I'm on 20mgs but doctors talking about increasing to 40mgs for 5 days . Going back to him on Saturday

Anne

[SheffieldJane in reply to JsyAnne]

What about 25-30 to see if that is enough? Some of us absorb less. Do you think he suspects GCA as he is beginning to move towards GCA doses? This limbo wthout relief must be awful. I trekked back and forth to my GP for months until a young doctor finally suggested PMR. Are you seeing a Rheumatologist?

[JsyAnne in reply to SheffieldJane]

Hi. Not seen a Rheumatologist but I expect he'll refer me if things don't improve. He's usually very thorough.

Thanks for replying. Nice to know you're not in your own

[GOOD_GRIEF]

Hi Anne:

I know it's hard, but worrying isn't going to change anything except to sap more of your strength.

I remember feeling like that early on, and though I felt better than I had once I got a diagnosis and started taking pred, It was several months before I even approached feeling something like my old self.

I'm not a medic, so I don't have much else to offer except to encourage you to put your mind at rest. Whatever it is, you'll deal with it. But you need to gather your self and your resources. Worrying will only waste them.

Do come back and keep talking to us. Lots of folks here have been there, and will be able to teach you some tips and tricks to help things settle down some.

Hang on. It's a rough ride sometimes, but it gets better.

[JsyAnne in reply to GOOD_GRIEF]

Thanks

[HeronNS]

The good thing is the doctor is making sure the diagnosis is correct. If it turns out to be something else which responds better to different treatment then it's good to find out sooner rather than later. Or, on the other hand, to eliminate everything else so you know you just need more time for treatment for PMR to work.

[JsyAnne in reply to HeronNS]

Thanks, you're right, he's being thorough

[stonecreek]

wow, I have the same problem. Feel like I am going to .FALL. I THINK IT IS MUSCLE DETERATING, but not sure. I am 81 so they say you are old, get a walker. No way. But it is scary!! Down to 2.5 pred. Been on pred since last Aug. Hope you feel a ray of sunshine tomorrow!

[jinasc in reply to stonecreek]

I am 81 and have a folding walking stick, it comes into use when pavements (which because of cuts) have become uneven and with cracks. Lovely fancy stick with flowers on.

Remember 'pride becomes before a fall' and the last thing we want at our age is a fall and a broken hip......................

The other item I bought lately, is a shopping trolley with a seat on it, it does not look like it has a seat on it..................but it is very useful. No carrying of bags, every thing put in the 'box', the lid of which is the actual seat. I love it when people come up and say 'how are you managing to sit on your shopping trolley. Some people have then asked where I got it.

Take care and you sound as though you have a good GP.............hang on to him/her they can be like gold dust....especially with PMR.

BTW is your arthritis Rheumatoid or Osteo?

[Sheilamac in reply to stonecreek]

Gosh that was a quick reduction . I've been nearly 5 years and only just beginning to reach 2.5mg.

[Constance13 in reply to stonecreek]

Get a walker (or at least, as jinasc advises - a trolley with seat)!! It's just NOT worth the risk. I collapsed twice in the street when I was 73 (now 80), landed in hospital for two weeks each time. Nothing was broken thank goodness, but I didn't want to risk that again. I'm 'proud' of my walker - it bright green, even youngster remark on it - never heard a negative word spoken by anyone, and such a relief if stuck in a queue at the cash desk - just sit down and rest!😂

[JsyAnne]

Thanks

[katiemills]

Hi there . I agree with Sheffield Jane . I was diagnosed in October 2018 and started on 15 mg pred and got slight relief but was still in a lot of pain so the GP increased it to 25 mg 4 days later. I still had some pain so he increased it to 30 mg after another few days . That's when I was pain free ! He was beginning to think I didn't have polymyalgia because it took such a high dose and referred me to my rheumy, who ran all sorts of tests but concluded that I did have polymyalgia . perhaps you should try 30 mg instead of 40 mg , unless your doctor fears you have GCA ? Btw I've struggled to taper and am now dropping from 14 to 13 mg . I see my rheumy on Tuesday and am pretty sure he's going to start me on Methotrexate . I hope this info helps !

[JsyAnne]

Thanks it does help

[PMRpro Ambassador]

Well there is feeling better and feeling better isn;t there? I'm not entirely surprised at the wobbles or the lack of balance - you aren't alone there although lots of us don;t have such problems.

If it is PMR then he doesn't need to go to 40mg, and in fact he shouldn't really: the range for starting dose is 12.5-25 and exceptionally 30mg. If the pain and stiffness don't respond to that then there must be a question about the diagnosis. A response to 40mg could happen with other things so doesn't help in deciding what you have.

PMR is not the illness, it is the name given to the outward expression of an underlying illness and there are several. Which your doctor should have ruled out BEFORE plumping for PMR, it is a diagnosis of exclusion. So it is high time he did so now.

But feeling ill may be due to the underlying autoimmune disorder that causes the symptoms in our case - or it could be the pred itself. Or it could be both. And have you been trying to do too much? Pred didn't cure anything - it is management.

[JsyAnne]

Thanks for the information. I'm due back to the doctors tomorrow and will have a long discussion with him before going forward