Newly diagnosed

[Iloveholidays]

Hello, this is my first time posting on here, I have been reading your posts over the last couple of weeks, so much to learn and to take in. I started with pains in my groin, buttocks and thighs August 2018, just thought they were aches and pains, (I turned 60 this year!). At the end of October I woke with extreme stiffness and pain in my shoulders and upper arms, couldn’t turn over in bed, wash my hair etc.... as many of you I know understand. I left it a few weeks but it was getting worse, I found myself crying when trying to get dressed so took myself off to the GP who thought I had rota cuff injury on the right side, I explained in was in both shoulders and arms and legs and couldn't be, GP referred me to a physio and ran blood tests. On speaking to the physio he thought I could have PMR but to wait for blood results. The blood tests all came back ok, my GP dismissed it could be PMR and said I need to have some physio. The physio didn’t agree and referred me to a GP specialist within their team who I saw end of December. He took more bloods and immediately put me on 15mg of prednisolone as he thought it was PMR and said after a week to reduce to 10mg. The blood test has confirmed PMR and the fact that after a few days my pain has reduced to almost nothing. Having read about tapering on here and researching as much as I can, my understanding is to stay on initial dose for 4 weeks and gradually reduce. I rang the specialist GP to query the reduction to 10mg so quickly, he said to continue on 15mg until tomorrow when I have a telephone f/up with him. I am now 10 days in of taking the 15mg of Pred. How should I approach this subject with him if he feels I should reduce to 10mg? The thought of going back to that pain is unbearable. Also do I need to be referred to a rheumatologist as I see many of you mention seeing your Rheumy?

[PMRpro Ambassador]

This might help:

rcpe.ac.uk/sites/default/fi...

You need a month at that starting dose - and this paper was written to help GPs manage PMR better without resort to a rheumy. You may not need a rheumy IF the GP is willing to be educated and allow you to reduce more slowly.

You aren't reducing the dose to get off it, you are looking for the lowest dose that manages your symptoms and in the early days that is higher than later. The primary cause of flares is reducing too far or too fast - and a 33% change in dose so soon is very likely to take you back to the start. In tapering to identify the right dose, top experts advise no reduction step should be more than 10% of the current dose - bigger steps lead to withdrawal pain and/or overshooting the dose you are looking for. At 15mg that is already down to 1.5mg - not 5mg. That may be OK at GCA starting doses but not at this level.

The trouble is - some rheumies don't get it either!!!!

[Iloveholidays in reply to PMRpro]

Thank you, that’s what I thought from my reasearch. So much to learn! I’ll have a look at the link.

[Charlie1boy]

Hi,

I love your name! I think we all love holidays.

Anyway, you have done well to post. Others, with more knowledge than me will be along with more detailed advice, but, from my experience, after 4 years with PMR (currently at 4mg pred per day), I would be staying at the starting dose for at least a month, if not longer to give the pred a good chance of clearing up the inflammation.

Regarding tapering, it works differently for everyone, but a standard piece of advice is not to reduce by more than 10% of your current dose, and then stay at the new dose, providing there is no return of symptoms, for another 4 weeks.

Hope this helps for starters.

Good luck

Paddy

[Iloveholidays in reply to Charlie1boy]

Thank you.

I chose them name because it was the first thing I thought of when I thought I possibly had PMR, ‘I love holidays but these will need to put them on hold until I know what I dealing with’. One day at a time

[DorsetLady PMRGCAuk volunteer in reply to Iloveholidays]

Hi,

You don’t have to put holidays on hold........you just have to choose the right one, and do a bit more planning beforehand, and a bit more resting whilst you’re on them! 😊

Agree with others 15mg to 10mg drop is too big! Recommended taper is no more than 10% of existing dose - that’s 1.5mg. 5mg is 33% - a recipe for disaster!

Well done your physio by the way!

[SheffieldJane]

I think it would be a mistake to drop down by 5 mgs. You are right a taper will be much more effective. There is evidence that shows that Prednisalone taken at PMR doses does not increase the incidence of osteoporosis or type 2 diabetes or all the other side effects that worry doctors ( in the Eric Matthison study only a higher incidence of cataracts was shown and even this could be that PMR patients had eye checks more often). It takes time for these attitudes to filter through to the front line medical community. Your doctor is trying to protect you as well as treating your disease. Unfortunately experience has shown that if we lower our dose too quickly we can end up right back at the beginning and suffer unnecessary pain and disability. It is difficult to stand firm but try to. Ask him if you can have a Dexa scan to check on your bone density. This may reassure him that you’ve thought about it. Don’t accept Alendronic Acid or similar until you know that it is really needed via the bone scan results. The PMRGCAUK website has examples of effective tapers. Be well!

[Iloveholidays in reply to SheffieldJane]

Thank you.

Is Alendronic Acid a bone protector? I have been told I need to take a bone protector but have not had a bone scan or been offered one yet.

[SnazzyD in reply to Iloveholidays]

I refused until a DEXA was done. It turned out that I had a bit of osteopaenia but not osteoporosis so just had vitamin D and calcium, which you should be given even if you have the bone drugs. Knowing your Vit D level is important because you won’t absorb canclium without it.

To add to what the others said about the 5mg drop, when you reduce there is every chance you’ll get withdrawal. This is not a flare but the body getting upset because someone moved the dosage goalposts. The bigger the drop generally the worse it is and ranges from aches, headache, fatigue amongst others and comes on within a day or so the change. I couldn’t function with such a big drop and went for much smaller drops, much to my rheumatologist’s annoyance. However, they didn’t have to get through my life on a daily basis and function was important. I also asked if it was better to go quickly and risk a flare and having to go back up again.

[SheffieldJane in reply to Iloveholidays]

Yes it is the one that is being quite forcefully promoted at present. I refused it, then had two really good Dexa scans over a 3 year period - rendering it unnecessary anyway. The potential side effects are quite significant.

[PMRCanada]

Welcome Iloveholidays. Great suggestions already shared. Regarding a Rheumy, my GP referred me to one and I attended 3 visits, however she was awful. So now I am overseen by my (great) GP (who was the one who diagnosed me with PMR). I see him every 3 months or so. He gets my monthly bloodwork results and ordered a bone density scan within a month of diagnosis.

I tapered down from 15mg by dropping to 13.75, 12.5, 11.25, then 10, by cutting 5mg uncoated tablets in 4 (Rheumy would not prescribe 1mg tablets as she was set on me dropping in bigger increments).

Be prepared to advocate for your health which may mean conflicts with medical staff. Symptoms rule (not blood tests), you will learn how to listen to your body.

Glad you found us!

[Iloveholidays]

Thank you