Finally…..

[Bramble2000]

Hi, some of you know of my battle to get a diagnosis having had the Pred stopped due to Rheumy saying I’m too young to have it at age 52.

I have had a call from the Rheumy this morning asking me to go and see him tomorrow to “go through the Pet/Ct scan report” but that it, “looks like PMR”. I’m a bit perturbed that he is calling me in tomorrow as it’s pretty much unheard of in the NHS so I’m hoping it’s *only PMR and not anything else.

So, what do I need to get out of this meeting? What is the usual Pred regime? How often should blood be done? What’s the alternative to Pred? I understand that the Biologic is only given to those with GCA, however, I will be asking for it on numerous grounds. It can be put to a panel under special circumstances. How often should I be seen in clinic? Anything else I need to ask? Thanks.

[PMRpro Ambassador]

Probably anticipating an opportunity to fit you in given the mess of the NHS at present. maybe clinics have been reduced or there are patients not coming because they need ambulance transport. Sounds as if he may have learned something to your benefit. And realised that leaving you to New Year is really adding insult to injury.

[DorsetLady PMRGCAuk volunteer]

Probably nothing more sinister than an appointment cancelled by another patient - be grateful… just make a few bullet points of what you want to ask-but he’ll take the lead.

Maybe have a read of this today -

healthunlocked.com/pmrgcauk...

..and this -

healthunlocked.com/pmrgcauk...

[Bramble2000 in reply to DorsetLady]

I’m not ungrateful. It’s not a cancelled appointment. He’s not in clinic tomorrow but he’s going to see me. Considering he said I categorically didn’t have PMR due to my age and organising the pet scan because “there must be something more significant going on”, well, I think anyone would be a bit anxious.

[DorsetLady PMRGCAuk volunteer in reply to Bramble2000]

okay -fair comment, didn’t mean to imply it wasn’t serious or anxious for you - let’s hope it’s not ‘more significant’ .

[suzy1959]

I would be very interested to hear if you manage to get Actemra despite “only” having PMR. I am desperate to try it after over 10 years with PMR , never getting below 11mgs. Pred.

[SnazzyD]

It might be because they initially misdiagnosed you and it wouldn’t look good leaving you in limbo having suffered for so long.

[Bramble2000]

it can be done because I’ve had an unliscenced biologic before. It had to go to a panel to be approved, and it was. I can’t tolerate Pred at high enough doses to deal with the PMR due to insulin dependent diabetes, ventricular tachycardia and depression so goodness only knows what the rheumatologist will come up with when I see him tomorrow.