PMR flare

[Mom3boys]

Does anyone have suggestions as to the sudden flare and really bad. I thought it might be the Sed Rate elevation ? Hard to deal with so I took ibuprofen and it helped. I having been trying to link the flare with foods but most drs say no connection. Any input would be appreciated . Thanks

[DorsetLady PMRGCAuk volunteer]

Flares are normally an indication of either too little medication, or too much activity on your behalf, or combination of both.

Looking at your profile, I would hazard a guess at the former.

You say you've been on 5.5mg since March and really well, but then you say you have pains since beginning of June - have you done something different to indicate why things have changed? Been under more stress?been more active? accident or injury?

If you haven't tried reducing from 5.5mg it seems odd that you are flaring.

Your changing SED rate could be an indication of the inflammation caused by your PMR building up, or it could be for a variety of reasons.

Bit more info from you might help us work out what's going on.

[Joannarosa in reply to DorsetLady]

I'd love some advice ...I've been up and down with PMR for almost 4 years, on prednisone. I've been constantly trying to taper and have always ended up having to go back up...I've also tried 3 DMARDS without success. I recently tapered from 13mg to 12 (over about 6 weeks) - I've had to go back up to 13 3 days ago, and I think I'm having another flare. My legs are stiff and weak, I am really fatigued, and I feel generally unwell.

How long should I wait before I conclude that I need to up the prednisone again - and how much should I increase to? I'm so aware that any increase has to be slowly tapered down AGAIN...but equally, I can't carry on like this...any advice would be really welcome!

[DorsetLady PMRGCAuk volunteer in reply to Joannarosa]

Actually if you are catching a flare, the advice is to increase your current dose by 5mg above the dose you last felt ok (so 5+13=18 in your case).

Stay there for 7-10 days to clear out the inflammation, and then you should be able to drop back down in one step to 13mg, although 14mg might be better option.

As you seem to have so much trouble reducing, it might be worth thinking about a 0.5mg taper rather than 1mg, and/or an ultra slow taper - see this link

healthunlocked.com/pmrgcauk...

Another thought - are you trying to battle through your illness? You do have to pace yourself - might be worth having a look at this - healthunlocked.com/pmrgcauk......

[Joannarosa in reply to DorsetLady]

Thank you so much! This is SO helpful. I have been using a really slow .5mg taper taking about 5 weeks, but only recently worked out that a gap of several days on the new dose would help me identify the last sufficient dose, if things turned to custard. I am also now starting on Leflunomide 10mg in the hope that it will enable me to taper consistently.

I really appreciate the advice about how to deal with a flare, and the great articles about coping with fatigue and managing the disease. Again, many thanks!

[DorsetLady PMRGCAuk volunteer in reply to Joannarosa]

You’re welcome...good luck on Leflunomide

[Joannarosa in reply to DorsetLady]

Thanks! - Methotrexate, Azathioprine and Mycophenolate didnt help....this has been a long journey 🙄

[PMRpro Ambassador]

The rise in sed rate isn't the cause - it is the signpost that there is inflammation.

The underlying autoimmune cause of the symptoms we call PMR can increase and become too much for the dose of pred you have been fine on for a while. It is unusual for ibuprofen to help PMR pain - are you sure there is nothing else going on? But it is possible that the 5.5mg pred is just slightly too low to manage all the inflammation created each day and, like a dripping tap it eventually fills the bucket and overflows.

Whatever doctors think, too much sugar and carbohydrate food doesn't do PMR any good at all. Stress of any sort can trigger a flare - and even a fall can do it.

[Maisiek]

Hi, I seem to have had a flare, and as I had a migraine as well, I’ve put it down to stress ( oh and maybe sugar too 😱) good luck. X