PMR Pro help needed!

[pmrdec112014]

Hi PMR ProI am not sure what to do!

I have been diagnosed 10 years this week of PMR.

I managed to get to 2 mgs of pred until 2 weeks ago when I had a huge flare , so did the add 5 mgs routine, and took 7mgs with good effect for two weeks till Tuesday when I reduced to 6.

The symptoms are now all coming back! Stiff hips.

I emailed my GP two weeks ago to let them know the decline and not heard back.

I also checked in with Dr Hughes but again not acknowledgement.

What do I do now.

Do I go back to 7 or higher?

Also for the past 3 and half years I have had to have high doses of prednisolone (40 mgs) sometimes for weeks at a time for severe asthma and am wondering now if all those steroids were helping to mask the PMR helping me reduce the daily dose of prednislone for the PMR and leading me into thinking the PMR has gone.

I have not needed pred since April for my asthma due to now having biological therapy so obviously the high levels are no longer in my system.

Also because I was feeling so well I was able to start doing a rehab group twice a week for an hour doing gentle weights, static bike and stretching. Wondering if the lack of steroids is not meeting the exercise needs though it is a gentle pace which I have slowly been increasing.

I hope all this makes sense as my mind is in turmoil at what to do now!

Many thanks.

[PMRpro Ambassador]

Keep trying Rod - he is around as someone saw him the other day and posted about it. Maybe Jody is on holiday - or even him? What contacts have you tried? Where do you see him?

I wouldn't be surprised if you are right about the steroids for asthma - you have had a regular clear out of any inflammation that is buildling up - and we often say that you may be fine at even 1/2mg but zero is a step too far and after as much as 6 months the daily bit of left-over inflammation has built up enough for you too feel it. Doesn't really matter what the baseline is.

When did you start the rehab course? And did you start the weight with no weights, if you see what I mean, just the machine without anything added? To illustrate - for hand weights and bicep curls, I suggest 2x 500ml water bottles - but with only 100ml water in each. The bike - not more than 5min with no resistance. And then build up 50mls or a minute at a time - providing you don't feel anything the next day when you rest. And it MUST be slowly because DOMS (delayed onset muscle soreness) can take a while to set in when you are on pred and it is too late by the time you realise.

Repetitive actions are poison in PMR as is more weight than you can take. I even split up my shopping into small bags to transfer from the car to a bigger bag on a sack trolley to take it up to the flat in the lift.

[pmrdec112014 in reply to PMRpro]

Hi.I will email Rod again.

I saw him at St Peter' s Chertsey and then the last time after a telephone consultation we agreed I would email any concerns and normally he would reply straight away.

He did say I could have a telephone appt in future if needed would have to email him to arrange that!

I started the rehab course back in about April referred via the resp team.

It's a very basic group as all members have been referred via doctors of some sort mainly for cardiac or respiratory.

A few weeks ago I could do some 3 kg weights on some of the exercises, we go in a loop around the room just holding them up and down though had to decrease back to 2 kg for all exercises. It really is very gentle and at everyone's own pace.

I was doing so well but clearly the pred for asthma is now long out system and having reduced to 2 mgs for PMR is clearly not enough.

I am very disappointed I must say as I really felt so much better, lungs and PMR that it had all fooled me into thinking it had burnt out after all this time and I needed to do was reduce the steroids slowly and that would be that.

I do feel not far off square 1 again!!

[pmrdec112014 in reply to PMRpro]

I have emailed Rod again! Fingers crossed he replies asap. And yes I did wonder if he is on holiday.

[PMRpro Ambassador in reply to pmrdec112014]

Have you got Jody's phone no?

Fair's fair - that isn't square 1!! Dealing with a flare is nothing like the start of PMR and even 1mg can make a massive difference. You also obviously have a similar version to me - and it does occasionally have these little paddies because it thinks you are doing too well!

[pmrdec112014 in reply to PMRpro]

No I haven't got Jody's number.I presume she is Dr Hughes sec?

Do you have it??

Or anyone else??

I know it's not square 1 really I am feeling a bit dramatic lol!

[PMRpro Ambassador in reply to pmrdec112014]

finder.bupa.co.uk/Consultan...

gives details for Jody - I assume they are uptodate. But you could contact The Runnymede Hospital and check?

[pmrdec112014 in reply to PMRpro]

Bless you PMR Pro! Thank you x

[Rugger]

Just a comment on your exercise and weights. I took part in the Nuffield Joint Pain programme and in 12 weeks, never progressed above 500g weights! The thought of you raising 2 or 3 kg horrified me - I don't call that "very gentle"! I know we're all different in our capabilities, but do take it easy until you feel an improvement. 💪 💐

[PMRpro Ambassador in reply to Rugger]

"The thought of you raising 2 or 3 kg horrified me" - it did make me wince!!!!

[pmrdec112014 in reply to Rugger]

Yes in retrospect I was bouyed up by the constant high dose steroids for several years.Because of them I think I felt alot better PMR wise than I really was and now they out of my system I have crashed.

Back to the start weights wise though I think the lightest we have in our group is 1k.

I will need all your advice for sure.

[PMRpro Ambassador in reply to pmrdec112014]

Take your own! And the cheap way is to use bottles with appropriate amounts of water!!

[pmrdec112014 in reply to PMRpro]

What a great idea!!! I will!

[Mumdadlove]

Rod Hughes is definately around, I saw him yesterday at Ashford Hospital

[pmrdec112014 in reply to Mumdadlove]

Ok thank you.Was that for your PMR if you don't mind me asking.

I don't really feel well managed by anyone...I feel that I have been left to really manage this condition myself with extremely little input from any health professionals!

[Bedwell in reply to pmrdec112014]

Ditto! That’s why this forum is so great!

[pmrdec112014 in reply to Bedwell]

With out a doubt. It has been a godsend

[Catsrcool]

my rheumatologist believes when you have a flare you need to go up to 15mg prednisone and taper 2.5mg per month.

[PMRpro Ambassador in reply to Catsrcool]

Depends on the cause of the flare - if it is just because you slightly overshot the dose you need that is OTT. Our flare protocol has you back at the dose you need in a couple of weeks with a much lowerextra pred load.

Many doctors misunderstand the nature of PMR and how to best use pred, meaning that the patient is sent back to the beginning every time over-enthusiastic reduction causes a return of symptoms. It increases pred load and the yoyoing over time also tends to make getting things under control and tapering again more difficult. Smaller steps and care can result in a far smoother journey and less pred being required.

[pmrdec112014 in reply to PMRpro]

That's great PMR Pro.I think I am doing " our flare protocol" anyway. I feel much better on it now again and I feel having to go back to 15 mgs now would cause me to breakdown atm!

[PMRpro Ambassador in reply to pmrdec112014]

I think that is so true - there comes a point where the thought of going back to the beginning is so overwhelming it hurts because you think of all the effort you put into tapering and now it feels a waste of time. And it isn't necessary most of the time so why do it?

[pmrdec112014 in reply to PMRpro]

Yes! That's exactly it in a nutshell PMR Pro! And I guess most of us here have had that thinking and feeling at one time or another!

[PMRpro Ambassador in reply to pmrdec112014]

Most likely!

[Towdy]

Hi

I have been on pred for 13 years, the first 9 for asthma exacerbated respiratory disease and chronic urticaria then PMR

I am on Dupixent biologic having tried Xolair and Fasenra and am aware that some folk get joint issues with Dupixent… just a thought. I have had no issues and the biologic has been life changing

Now down to 4mg for PMR

[pmrdec112014 in reply to Towdy]

I too am on biological ( Tezepelumab) since April for severe asthma. I have not had any side effects from it to date. Also life changing.

I remembered the very specific PMR pain in an instance yhis time around and don't feel that the Tezspire is involved in this instance.

Best wishes that your current injection continues to work.

[Hosers2]

If any of you are taking statins (for high cholesterol), you might talk to your doctor about immediately stopping for 30 days. Statins cause the exact same symptoms as PMR.

[marionofnorwich in reply to Hosers2]

I have wondered about that too especially pain in my lower legs. Also low vitamin D

[Andos16]

Long story, diagnosed (incorrectly) with PMR. On Pred for 18 months but I now have hip pain which is osteoarthritis.

[DorsetLady PMRGCAuk volunteer in reply to Andos16]

Nothing to say you can’t have both -why do you say incorrect diagnosis of PMR?

[Andos16 in reply to DorsetLady]

Because Pred never gave me full relief and new rheumie says RA. I got so interested in PMR and this forum, I can’t leave.

We have had this talk, did you wave to me in Aust on yr way to NZ?!

[DorsetLady PMRGCAuk volunteer in reply to Andos16]

You don’t have to leave forum… many have other things going on as well as PMR and/or GCA …RA and OA so you get chat about them as well…

Sorry if you’ve told me all this before but brain not sure where I am… but then that’s nothing new..😵‍💫

Of course I waved… do you mean you didn’t see! 🙋‍♀️