Is this a flare?

[Kendrew]

Having tapered down to 2.5mg in the early summer, PMR symptoms that I now think had probably been grumbling from about 5mg, began to increase. I took advice from more informed people on here and eventually increased my dose to 5mg above previous dose that was managing my aches and pains effectively. (7.5mg) So I increased to 12.5mģ. This improved things a little over the first week but the aches and pains have continued to increase during the past two weeks again! I get a fizzy, tingling (and sometimes burning) sensation in lower legs (not calf muscles) and upper arms and is always most obvious when I'm sat at rest doing nothing. Usually worse in an evening when restless legs kick in too! I returned to work as a nursery HLTA in sept, working mornings only and completed the first 7wk half term with no time off and feeling quite well. I'm now at home again as my gp says I'm likely to be immunocompromised again at this higher dose and feeling quite frustrated by it all. I'm really confused as to what might be going on......am I experiencing a big flare that requires me to increase dose further.....is it side effects of the increased steroids (they did cause problems before at the slightly higher doses) or something else, completely different?? I've just had a whole battery of blood tests done in readiness for a telephone consultation with prof Dasgupta next week, and everything was within normal parameters.

Would really appreciate people's thoughts, and any advice offered would be gratefully received. Thankyou.

[DorsetLady PMRGCAuk volunteer]

As you have consultation next week, suggest you leave dose as is for the time being.

Just make bullets point of symptoms, what action you've taken etc so you explain to Prof Dasgupta - and hope you get some answers.

Please let us know how it goes.

[Kendrew in reply to DorsetLady]

Thankyou DorsetLady. I'll definitely let you know what he says. Thankyou. I don't think he'll be happy to hear I'm on 12.5mg. He came across as rather thinking I shouldn't have increased dose back in summer and wanted to put me on amitriptyline to 'help me sleep' despite my sleep being ok! He said sleep was key, and talked about something where technically the pain is kind of in your head because your brain can't shut off from it even when it's stopped! It keeps 'remembering' it? Sorry that's a bit vague, but I KNOW this is genuine discomfort and not in my head. Thankyou for your advice. You ladies are worth your weight in gold.

[Kendrew in reply to Kendrew]

......and gentlemen!!!

[DorsetLady PMRGCAuk volunteer in reply to Kendrew]

👍😊

[DorsetLady PMRGCAuk volunteer in reply to Kendrew]

"He came across as rather thinking I shouldn't have increased dose back in summer and wanted to put me on amitriptyline to 'help me sleep' despite my sleep being ok! He said sleep was key, and talked about something where technically the pain is kind of in your head because your brain can't shut off from it even when it's stopped! It keeps 'remembering' it?"

I perhaps shouldn't say it, but I do wonder about his thinking sometimes.

[Kendrew in reply to DorsetLady]

I find that comment coming from you....a person with so much knowledge and experience......utterly reassuring. I sometimes feel that I shouldn't contradict what an eminent and 'leading authority' on this condition says to me, but although I have huge respect for the prof, I don't feel I can always trust his recommendations and feel the advice and help I receive here is far more reliable. Particularly as you always explain your reasoning behind any advice you offer. If I can understand something...I can deal with it.

Not sure how helpful or productive my consultation will be but I'll think positive. 🙂

[PMRpro Ambassador in reply to Kendrew]

My fear really does have to be that this is PMR that has decided to go walkabout and maybe morph into something else. You HAVE been under stress, however much you like working.

[Kendrew in reply to PMRpro]

I hear what you're saying. What do you think it could be morphing into??

[PMRpro Ambassador in reply to Kendrew]

All sorts of things. Starting with GCA as the most likely I fear.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

My thoughts as well.

[Kendrew in reply to DorsetLady]

Thankyou for your help.

[Kendrew in reply to PMRpro]

That had crossed my mind too. I'll let you know how things go. Thankyou.

[Kendrew in reply to Kendrew]

Just would like to ask you one more thing please. How would prof Dasgupta diagnose that......would there be specific test/s I should expect him to do or will he be able to reliably say it is or isn't GCA from just a conversation with me?

[PMRpro Ambassador in reply to Kendrew]

At this stage it would probably be on the basis of suspicion. I doubt a biopsy would show much, not sure about ultrasound. Being on pred doesn't help the result of a PET scan to look for large vessel vasculitis, the other obvious concern.

[Kendrew in reply to PMRpro]

Ok. Thankyou for your time. Much appreciated.

[PMRpro Ambassador in reply to DorsetLady]

Me too - and these left field moments are getting more frequent ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

mmm!