flare procedure

[August7]

After flare up whilst for the second time on reducing to 9mg, GP put me up by 1 mg to 10 and said it should work if PMR flare otherwise contact Rheumatology. (Easier said than done). No improvement on 10mg so taking forum advice increased by 5 mg to 15 ( dispirited to to do as felt like I’d failed again). Took a few days but big improvement. Reduced to 12.5 mg some sx niggling, but tolerable. 12 days on flare protocol. Should I stay on this and gradually reduce or go down to 12 and stay. I’m due MTX initiation by injection 11/3. Thanks.

[PMRpro Ambassador]

I would have said to go back to 10mg once it was sorted. But DON'T aim for 9mg. But if you still have niggles at 12,5mg, maybe taper from here - have you got pred? Or will your GP have a hissy fit?

The fact you flared twice at the same dose (9mg) is the sign you have reached your interim destination - the lowest effective dose. It doesn't mean you won't get lower - just not yet. One mg almost never sorts the flare, you have to springclean a bit before dusting is enough!

[August7 in reply to PMRpro]

Thanks for that, I’ve got 3 months of 5 mg so could taper. I’m just imagining the look on the clinicians face when I go for my injection. Don’t think they’ll be happy I’ve self increased, heyho.

[DorsetLady PMRGCAuk volunteer in reply to August7]

Clinician may not be happy-but it’s not them in pain is it? 😊

[August7 in reply to DorsetLady]

Do you know that’s absolutely true. Thank you shall remember that when I’m at the consult 👍😊

[Shandylowe in reply to DorsetLady]

I’m struggling too going from 3mg to 2mg have pain everywhere but my rheumatologist is keen to get me off steroids.

[DorsetLady PMRGCAuk volunteer in reply to Shandylowe]

Why at such low doses ? I see you have other issues, but adding in pain from your PMR because it’s not being controlled properly isn’t going to help you at all.. I do wonder why some doctors get in such a tizzy when patients are on such a low dose..

Has Rheumy offered anything else?

[Shandylowe in reply to DorsetLady]

No nothing yet I’m due to see him on 18th of this month so I’m hoping he’ll suggest something else. Thanks for your help.

[PMRpro Ambassador in reply to Shandylowe]

And since it is obvious your PMR is still active - all he will achieve by that is setting you back to where you were at the start. If at 3mg you were good and symptoms managed that is where you need to be. Prof Bhaskar Dasgupta told us he often keeps patients at 2-3mg long term to reduce the risk of relapse. If it is good enough for him - good enough for anyone.

[DorsetLady PMRGCAuk volunteer]

For the record…agree with PMRpro. You should be okay on 10mg… but no lower for now.

[August7 in reply to DorsetLady]

Thanks as ever. Been very useful to have the flare protocol.

[InTheMoors]

I've had the common problem of flare ups and used to deal with this by upping my dosage of prednisolone. I was advised by a consultant not to do this but to take painkillers. I had a bad day yesterday and took co-codamol (15/500) for the first time in two weeks. This calmed things down and today I feel OK - just been out to put some water in the ponds and tidy up a bit. I struggled to move yesterday morning.

Obviously discuss this with a professional as we are all different, but it worked for me.

[DorsetLady PMRGCAuk volunteer in reply to InTheMoors]

Would agree with your rheumy you don't want to be upping your Pred too regularly.. so you need to know what actually is a flare, and what is just feeling it's a 'bad day' [we all get those with or without PMR/GCA].. and that's not always easy.

But maybe look at what you have done a couple of days before that 'bad day' by keeping a few notes - then you might be able to fathom out one from t'other..😊

[August7 in reply to DorsetLady]

How do you resolve it all tho. I’m still struggling to get my head round the fact that life has turned upside down. I think the icing on the cake was the sacro ileac joints adding into the mix. Taking away my ability to go out and walk and walk to ease my mind feels like the last straw with this wretched combo of PMR and apparently PsA. So not amused !

[DorsetLady PMRGCAuk volunteer in reply to August7]

It is very difficult to your get your ahead around things… especially when your diagnosis changes or other issues added.

Are you saying you cannot walk at all, or that you cannot walk as far as you’d like to? Is there any other form of exercise or activity/mediation etc that would help?

Maybe have a look this and see if anything in it helps…if not then maybe have a chat with your GP and see if you can access some counselling if you think that may help you through this difficult patch.

We are always willing to listen, but we aren’t professionals - and you may need that type of help .

healthunlocked.com/pmrgcauk...

[August7 in reply to DorsetLady]

Thank you. I used to walk on the coastal paths with my son and dog and we found it hugely mood enhancing. I’ve had to give up yoga, I can walk on the flat to the car but further the SI kicks in. I am trying to think of alternative things but day to day constraints get in the way. Thank you for the link 👍

[DorsetLady PMRGCAuk volunteer in reply to August7]

Know exactly where you are coming from with coastal walks… I love being by the sea..,must be the Viking in me.!

[August7 in reply to DorsetLady]

The sea is very very special isn’t it..I’m never sure if I love it more when the rollers are crashing into shore with white horses heralding the wake or the total contrast when all becomes calm and the surface like a lake..

[DorsetLady PMRGCAuk volunteer in reply to August7]

Been down today.. and it was like a lake. When late hubby was in HMF we spent 2 years in the Outer Hebrides - when most days it was the exact opposite.

[August7 in reply to DorsetLady]

I can imagine !!😀

[PMRpro Ambassador in reply to InTheMoors]

" was advised by a consultant not to do this but to take painkillers"

Which would be fine - but if it is due to PMR, they do precisely nothing! OTOH, if they are due to something else, that is a better approach than yoyoing the pred dose because that can get out of hand.

[August7 in reply to InTheMoors]

Makes sense and I do use one Diclofenac 75mg if sx are too heinous. 👍