FLARE at 5.25mg??

[Slosh]

Hi all,

I have been in Australia for almost a year and have been doing very well lately. I have steadily been reducing SLOWLY. No flares that I can remember for a very very long time.

My Mast Cell Activation Syndrome / Histamine Intolerance / Multiple Chemical Sensitivity issues have been my struggle. And of course trying to get off of the Cortisone.

I was convinced that the PMR was in total remission.

But about 3 plus weeks ago I got really sore shoulders and figured it was the way I was sleeping. Then the muscles in my neck starting hurting both sides - so stiff. Bought new pillows, did exercises etc….. nothing helped.

Something made me wonder if it could be a PMR flare because I was also feeling so tired and fatigued after doing minor exercise and just a bit under the weather as if I have a low grade fever.

So I went up to 7 mg (from 5.25 that I’d been on for a month) for three days - on day three felt a bit better. So took 6mg today - but quite sore again today and with pain in hips and buttocks and back of thighs.

Do you think it is likely PMR resurfacing?

Should I go up to 10mg for a few days - and how many days? Then how should I reduce?

Would appreciate any input.

Thank you

[DorsetLady PMRGCAuk volunteer]

Usual advice for flare is 7-10 days on higher dose - no more than 14... but only 3 is a bit optimistic.

This contains advice - and you should be able to drop back down to 5.5mg or 6mg in one go, but if unsure then try 2 steps down - staying on interim dose for 5 days -

healthunlocked.com/pmrgcauk...

[Slosh in reply to DorsetLady]

Thank you so much for your response.

So do you think 7mg is enough for 7-10 days. Then 6mg 5 days and down to 5.5mg after that - which is where the PMR was controlled?

[PMRpro Ambassador in reply to Slosh]

Going to 10mg will do it faster - that's why it is suggested. A very short time at a higher dose has less effect on the adrenals than a longer time even at lower. And after only a week - no need to taper really. Bit whatever you do - don't go back to the dose where it happened. And be honest - was it the 5.25 or was 5.5 already skating on thin ice? How often were you reducing?

[Slosh in reply to PMRpro]

Thanks PMRpro - I did 5.5 for probably 6 weeks and then 5.5 / 5.25 alternate days for at least a month then dropped to 5.25 about 4 weeks ago.

I think I’ll go to 10mg for a week or 10 days. Drop to 7 for 3 or so days and then 5.5 again?

I am devastated.

[PMRpro Ambassador in reply to Slosh]

Why? You aren't heading relentlessly for zero - the pred cured nothing. It is a management strategy and you are looking for the lowest effective dose. At present that is 5,5mg, it doesn't mean you won't get lower. Just not yet. 5,5 is pretty good. Half of people get to 5mg in 15 months or less - the other half take longer.

[Slosh in reply to PMRpro]

Yeah I suppose - I’m in the 6 year category from when I started on Pred.

[PMRpro Ambassador in reply to Slosh]

Member of an ever-growing club ...

[readingbooks in reply to Slosh]

Me too, Slosh ! It happens.

[DorsetLady PMRGCAuk volunteer in reply to Slosh]

No, best to follow advice and add 5mg... and give it time to work... and if you are dropping down in two stages,stay at the interim for at least 5 days.

It's no good trying to short circuit the system... rarely works..and disappointing as it might be, you just end up taking more and longer to get to zero.

You’ve done so well so far, don't spoil it now by trying to rush - and lower doses are much more difficult than you thinks sometimes....

[Slosh in reply to DorsetLady]

Good advice - thank you so much once again.