What a Night (not the Dr John version)

[Theziggy]

What a night

History:- I was in the process of tapering from 12.5 to 11 DSNS and had taken one dose of 11 and was due my second dose of 11mg on Tuesday last.

Mild flare up started in left forearm/upper arm on Monday night which developed into full blown pain, limited range of movement on Tuesday. So I stayed on 12.5 mg. This shoulder pain was easing off by Wednesday morning and was back to just a dull pain but it had moved down into my left hand!

By bedtime on Wednesday night hand was on fire, I couldn't bend my fingers at all without excruciating pain, touching anything with my hand e.g. laying on the bed etc. increased the pain twofold. So - no sleep at all just pain. I took 15mg at 4 o'clock in the morning and by getting up time had had two half hour snoozes.

This morning, could bend my fingers a wee bit, still severe pain, can't hold anything, getting dressed was fun, couldn't tie shoes so have slippers on. Took another 5 mg this morning out of desperation. Won't be able to drive today either.

An early Christmas Present from PMR? ( if it is PMR) ho ho ho more like no no no!

[PMRpro Ambassador]

I think 1.5mg at a time is too much.

No - the more you say, the less it sounds like PMR causing this. Above all, just one arm being affected. Needs to be looked at while it is there.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Agree with PMRpro one arm only doesn’t sound typically PMR.

Why 1.5mg reduction? 1mg better.

[Theziggy in reply to PMRpro]

It has affected both sides of my body, both shoulders and upper arms, both hands both hips, both knees and one heel - not all at the same time lol (though I have had a shoulder, hand and hip on different sides affected at the same time though which more or less immobilised me and the combined pain was not good)

Any idea apart from Palindromic Rheumatism as to what it could be?

Thanks for answering.

[PMRpro Ambassador in reply to Theziggy]

The definition of PR fits - even if there are differences that seem not to. PR is probably a forerunner of "An" inflammatory arthritis, I think what it eventually consolidates to can vary. Or it can disappear altogether.

This mentions possible differential diagnoses:

hopkinsarthritis.org/physic...

[Theziggy in reply to PMRpro]

Since I replied I have been looking at PR more PMRpro and it definitely seems to fit my condition more than PMR does. Shame there aren't many resources, forums on the net. I hope I can convince my Rheumy to re-diagnose me. Be a shame to leave this welcoming forum though - Health Unlocked doesn't have a PR forum - it is lumped in with RA.

[PMRpro Ambassador in reply to Theziggy]

We aren't bothered - if the advice helps to manage a condition, does it greatly matter what the label is?

[Theziggy in reply to PMRpro]

Different management for different conditions though, a lot of info, advice and support for PMR, not so good for PR. No Forums for PR that I have found, much rarer than PMR

[PMRpro Ambassador in reply to Theziggy]

Other than the actual medication I bet there are a lot of parallels. The usual complaint I hear is there is no recognition of PMR!!!!

[Theziggy in reply to PMRpro]

When I first was told I had PMR I found so many sites about it, there are far far less sites about PR. I even thought at the atart that I must have a strange form of PMR as my symptoms seemed so atypical - so thanks for your suggestion on PR PMRpro

[Lee1945]

I really do think that adjusting your own doses is unacceptable! It does your body NO favours!

My rheumatologist reminded me yesterday that ANY changes to my doses need to be done by him - even my GP should not make adjustments!

If you are struggling you really must speak to your rheumatologist so you can be monitored properly.

I do hope that you do not mind me stating these facts but this yo-yoing really will not help in the long run!

[Mic67 in reply to Lee1945]

That depends on how good the doctor is and the availability of appointments and treatment.

Personally I think that the reason people find this group so helpful is because they have been left to self manage their illness most of the time and the voices of 'experience' are expert and more powerful than those of the textbook.

[Gary1310 in reply to Lee1945]

I agree. Best left to Rheumatologist to prescribe meds and doses. Try to follow his plan for you. I think taking Aspirin, Tylenol, etc is OK when tapering and there is some pain.