Rheumatologist

[Digon7215]

Hi,

I have had PMR for 16 months now.. I have never been offered the chance to see a rheumatologist, yet many of you have... Is it the norm to see one?..

Wishing you all a pain free day..

Julie

[bunnymom]

I started out with a gp who diagnosed my PMR quickly. He wasn't in favor of referring me on. I decided after 7 months I needed someone to help me manage the steroids. I didn't feel dr was on top of everything. In all seemed to be driven by me. Glad I went to see a rheumatologist this month. I was taking too much medicine and feel now that I am reducing. This site is so valuable as I take others knowledge into appointments with me, wishing you well.

[Digon7215 in reply to bunnymom]

Thank you bunnymom for your reply.. My doctor seems to take everything lightly.. I will ask to see a rheumatologist and see what he ( Doc ) has to say.. Then I will take it from there...

[DorsetLady PMRGCAuk volunteer]

Hi,

Some GPs think they can manage PMR without referral - and some can. Think it may also be quite difficult to get an appointment with a Rheumy, it seems to be one of the busiest departments. But you are certainly within your rights to ask for a referral.

[Digon7215]

Thank you DorsetLady,...

[PMRpro Ambassador]

It depends - if your symptoms fit all the tick boxes, if the GP is getting things right (the right sort of level dose to start with that works well and then you are able to reduce without problems) then there may not be any need to see a rheumatologist. If the GP isn't knowledgeable enough, or there are problems, if you start at 15-20mg and it doesn't work or you cannot reduce at all without problems or if ANY signs or symptoms of GCA appear then you need to be referred to a specialist unit. GCA is too complex and serious to be left to GPs (unless they are exceptional).

That said - some rheumies aren't any better than some GPs!

[Digon7215 in reply to PMRpro]

Ok. Thank you.. I started on 15mgs.. Reduced by one mg every 4 to 6 weeks.. Got down to 8mgs.. Symptoms returned.. Doc said to go up to 9mgs which I did.. Still had lots of pain and bad mobility.. Doc said to up to 10mgs. Stay on this for 2 months.. I have been on 10mgs for a month now.. Feel ok except for hands and legs hurting when I get up.. I take two paracetamol if it really bad.. I also try to go for a walk most days.. I find this helps.. I feel ok to gradually come back down to 9mgs.. So far I have taken this week, 10mg for 5 days.. 9mg for 2 days.. next week I will cut down on 1 or 2 days again to 9mg.. Depending on our I feel..

Thanks again

Julie

[PMRpro Ambassador in reply to Digon7215]

Have you seen the Dead slow approach?

healthunlocked.com/pmrgcauk...

It allows you to reduce without having 2 consecutive days on the new dose until relatively late - so your body has more time to accept it.

But your GP sounds to be doing a good job thus far. As long as they don't try to force a reduction - 9mg may be where you need to stick for a few months - it took me a very long time to get much below 10mg originally and I'm stuck there again now.

[Digon7215 in reply to PMRpro]

Thank you.. I found this very interesting.. Will try and see how it goes..

[jwb43 in reply to Digon7215]

Julie how far do you walk when you go for your walk? I've tried walking and it seems to just make my pain worse. Although if I ride the exercise bike for twenty minutes the pain is much better the next day but then it comes back ten times worse after that. Maybe I need to force myself to go for a walk each evening. But I'm just scared it's going to make the pain a lot worse. Of course I'm not on any prednisone yet

[PMRpro Ambassador in reply to jwb43]

Which pain is worse? And when?

[jwb43 in reply to PMRpro]

I did not mean to say roommate I meant to say rheumatologist. He was pretty arrogant and said he did not think I had GCA. The pain is in my temples and Jaws constantly. In fact it doesn't hurt too much when I chew more when I'm not chewing. As for the pain it hurts all the time and I'm always on pain medications almost every day to get through the day. But if I go and walk around the block which is one tenth of a mile or ride the exercise bike for a few minutes it hurts a lot worse in the hips legs and adductor muscles. Does prednisone help pain as well is stiffness. Because I can deal with stiffness it's the pain I struggle with. Thank you for all your Communications.

[PMRpro Ambassador in reply to jwb43]

Yes, pred in PMR/GCA also helps the pain.

Your jaw pain isn't typical - but then, who is typical? The temple pain is recognisable.

You need someone sympathetic (obviously NOT that rheumy!) who will at the very least try an adequate dose of pred. 20-25 mg should sort the PMR-type pain if it is PMR as we discuss it. It may not deal with the temple pain entirely but it should help some.

However, there are other causes of PMR symptoms - it is just the name given to the classic symptoms which can be due to several underlying causes and they must be ruled out.

[Digon7215 in reply to jwb43]

Hi jwb43, I walk for about 20mins.. Some days I can walk faster than others. However, that doesn't mean I actually walk fast.. I really find that on the days I don't walk, I get up the next morning, my legs are very stiff and I waddle like a duck... lol.. That is the day I will take paracetamol.. I normally feel better by noon..

[jwb43 in reply to Digon7215]

Yes I too am familiar with the notorious duck walk. I feel like that in the mornings sometimes as well period mostly due to the pain in my calf and feet muscles

[piglette]

If your GP is happy with treating PMR there is no reason to see a rheumatologist, it can be treated in primary care. That is not true of GCA though. Some doctors seem worried about treating PMR and choose to refer their patients to a rheumatologist. Rheumatologists are not always that impressive on the other hand. I saw one recently and all she did was ask questions the answers to which were all on my primary care notes. I have discovered that primary care and secondary care live on two different planets. My GP could not access the secondary info on computer apart from my blood tests and the rheumatologist could not access my primary care records at all. I had taken a letter in from another consultant luckily and she had to photocopy it. I reckon millions could be saved if the NHS got a decent computer system that they could all access.

[PMRpro Ambassador in reply to piglette]

They might have done if they'd gone about it right in the first place! Instead it was pay peanuts get monkeys and it was a very expensive disaster in the end.

We're a very small region but my GP can access all my hospital stuff from here. Other hospitals I still have to take my copy of the report in for her to scan into my records but eventually it will be all interlinked. But the hospital can't see everything on my GP files for privacy's sake. Personally can't see why not but they can't.

[Marcy47]

Hi Digon,

After 1yr at 10mg of Pred I am having trouble reducing without pain returning. My Dr referred me to the Rheumatologist to see if she could advise any other medication. After waiting 14 weeks for an appointment I saw her last week, more blood tests and told to try and reduce Preds a bit and return in Feb, she wants to see if I have any other conditions before changing my meds. I started the DSNS method again yesterday 10-9.5mg, see how far I get this time!

[Digon7215 in reply to Marcy47]

Hi Marcimay,

I am now trying the slow method.. is that the same as DSNS?....

I like you will see where it takes me..

[missmylefteye]

I have tried, but having a very difficult time finding one who will see me. they are slippery little devils. and im pretty sure all the ones who told me i had fibromyalgia &/or refused to see me, will be heading straight back to hell when their currents stints here end. thats my two cents anyway! 😈😱😨👹