Advice please

[Billiebobdog]

Appealing to the collective wisdom here

For the last few weeks I’ve had an increasingly stiff neck, potentially I gave myself a slight whiplash by moving too quickly in the wrong direction, but I do recall my neck was one of the most uncomfortable things before diagnosis.

However rather than improving with treatment from the osteo it really is getting more uncomfortable and, of course, starting to affect my head movement and now my shoulders and arms are starting to join in. I have been very slowly reducing my steroids and am currently going down to 6.5mgs from 7 mgs. Thing is I have no idea if this is now causing a ‘flare’ (really wouldn’t know what to look for there) or if it is simply a poorly neck. We go on holiday on the 18th and I was wondering if it would be sensible to up my steroids for a week, and what dose you’d think was sensible, just to help the discomfort reduce and then have a totally relaxing holiday and carry on my normal reduction. I have also been taking paracetamol before bed just to take some of the edge of the discomfort off, doesn’t have a massive effect if I am honest.

I will add that due to some arthritic changes I have never been totally pain free, except when I was on the original dose of steroids.

[DorsetLady PMRGCAuk volunteer]

Hi,

This link gives definition of flare...and subsequent treatment. Does sound as if you triggered a flare by damage to neck and if paracetamol isn't helping then a bit extra Pred might.

..and yes OA pain does resurface once you get to lower doses of Pred... its just a matter of working out what is what.,

healthunlocked.com/pmrgcauk...

Hope you can get it sorted out before holidays...and no more tapering until afterwards...

[Billiebobdog in reply to DorsetLady]

thank you for the advice, I added 5mgs to what I was taking and it has certainly helped a lot, not nearly as uncomfortable

My question now is about reducing back down, from reading it seems that the collective wisdom is not to necessarily go back down to where you were, I was wondering about doing a week on the higher dose then dropping by 1mg, or even 1/2mg, a week, providing the pain levels remain reasonably neutral to get back to where I was, which was 7 going down to 6.5mgs. Does that sound like a sensible plan?

My normal reduction rate has been around 3 - 4 weeks to reduce the dose by 1/2mg then around 4 weeks before trying another reduction, hence why this flare has been a bit of an annoying setback as I thought I was going slowly enough not to cause one

[DorsetLady PMRGCAuk volunteer in reply to Billiebobdog]

Yes we do normally suggest that after the initial noise to get flare under control you can drop back to just above level that caused the issue, but if you think your way is better, then by all means do it that way.

Just monitor each reduction, and although what you were doing previously was sensible-you still need to make sure each reduction has worked.

Whether a taper is fast or slow, you can still go below the level of Pred you need…but slower makes it easier to catch.

Good luck

[PMRpro Ambassador in reply to Billiebobdog]

The slowness is less to be able to reduce and reduce and reduce but to make the reduction process less uncomfortable and avoid unnecessary returns to higher doses triggered by confusing steroid withdrawal symptoms with PMR which can be very difficult. However slowly, however small the steps down, nothing will get you to lower than the dose you are seeking, the lowest effective dose. If you ignore warning signs, or stick to a fixed or a too fast reduction plan irrespective of such signs, you will overshoot and the inflammation build up again. Obviously, there is a likelihood that the dose at which you flared is too low - and it makes no sense to go back to that. Err on the side of caution.

[PMRpro Ambassador]

I would try adding some pred for a few days and see if it helps - if it doesn't you can go back.

Flares due to too low a dose of pred often go for your weak point and that fools a lot of people because they expect flares to always be bilateral like it started.

[Billiebobdog]

thank you ladies

I had thought an increase might be the answer so tomorrow morning up,I go for a week

I did like the ‘or you might be doing too much’ comment in the description of a flare - pretty sure that I have been doing just that as I haven’t stopped for weeks, including a return trip ‘up north’ that was 4 hours each way, husband being away twice in the last two months, two long ‘boot’ camps training the dogs, a lot of dog shows and more! In fact I’m not sure when I’ve last had more than one complete day at home!

Oh and add not being able to sleep well at the moment to the mix

Definitely need the holiday

[PMRpro Ambassador in reply to Billiebobdog]

"or you might be doing too much’"

Yeah - well after that catalogue I think that is the most likely answer!!! If you want/need to do more, you need more pred!

[DorsetLady PMRGCAuk volunteer in reply to Billiebobdog]

ditto, ditto, ditto to PMRpro’s reply….

[Billiebobdog]

well we hope we don’t need to and to be fair I have been doing really well, I think it’s just decided to catch up with me and I’ve got over confident with how much I can do

[Sharitone]

O{n the other hand, a very stiff neck was one of the precursors to GCA/LVV for me, so just be extra wary. But don't worry!😬