Please can you give me some advice about seeing my GP?

[katiemills]

I'm quite nervous about seeing my ( quite new to me ) GP tomorrow for the first time since he diagnosed PMR 6 weeks ago. He started me on 15mgs then increased it to 25mg 6 days later and then another GP ( couldn't get to see mine) increased it again to 30mg 2 weeks after that. That was the only time I've been pain free. At my GP's instructions I started to taper it back to 25mgs which I've been on now for 2 weeks. Enough pain has returned for me to take paracetamol at least once a day and sometimes I need tramadol.

I suspect that he's going to want me to reduce it again and I'm nervous that I won't be able to cope...........I now realise that it's a balance between acceptable levels of pain and reducing the prednisone, but I can't help but think I'm still in rather an acute phase at the moment. Should I insist it's too soon to reduce and I'm not ready yet, or give it a go??

Also I now think it's time to ask to be referred to a rheumatologist and insist on a Dexa scan. He doesn't yet know that I've not been taking the Alendronic Acid he prescribed............Is it reasonable of me to expect/ask for ESR ans CPR levels every month as well as BP checks and blood sugars? Is there anything else I should ask for?

I don't want him to think I'm a pushy, neurotic fuss pot, but I can't help but feel that if I don't ask for things he won't volunteer them.........

Also has anyone any advice about controlling athlete's foot ( not a problem I have normally - a reaction to predisone?) . Daktarin and Lamisil creams aren't clearing it up and even the ball of my foot is irritating.

Finally, does anyone have any experience of using cannabis oil for pain?

[PMRpro Ambassador]

Are you saying that paracetamol or tramadol help with the pain? If so, I would go so far as to say the PMR diagnosis must be questionable - especially since you needed so much pred and pain is breaking through at 25mg. And so, don't start on the AA until you have the results of your dexascan AND seen a rheumatologist - you may end up on something other than pred - and you are being atypical so it is perfectly reasonable. It may turn out to be PMR but it doesn't sound "usual". You won't crumble in the next few months.

If your ESR/CRP were meaningful initially and you are struggling - then yes, monthly checks are not unreasonable but you will have to find out how much they mean for YOU. In some people they fall and stay down while they are on pred even if they have symptoms. Symptoms are always king. No ifs or buts. You can have raised ESR and no symptoms - then it could be something else and increasing the pred would not help.

Athletes foot - no, can't help I'm afraid if the usual doesn't work. Tell the doctor.

At the top right corner is a search box - type in CBD oil and you will get a list of the posts about it. They aren't entirely encouraging for you to spend the money on it! But it might help - only one way to find out! But no-one knows much about dose etc etc - or even if it does do anything.

[Laurapc in reply to PMRpro]

Hi there, this is my first post. Mine is very long story so I'll cut to the chase and say I have RA which is currently running rampant. I know this is a PMR board but I have been convinced I have it in addition to the RA. The shoulder, arm and neck pain is so typical. I do take a lot of Paracetamol and Ibuprofen in addition to Actemra, Methotrexate (25mgs) and Pred (5mgs). To be quite honest it seems clear to me the Actemra and MTX are not working. I have been getting worse not better. My question is; if I get some relief from paracetamol and ibuprofen - then judging by your answer to a previous post -- I don't have PMR and the immobilisation I am feeling at the moment is entirely due to the RA. My Rheumy doesn't want to increase the Pred until she's certain Actemra isn't working. I am in no doubt but need to wait for results of MRI and my next appt in January.

[PMRpro Ambassador in reply to Laurapc]

If there is some suggestion it might be PMR then I think your rheumy needs to have a bit of a read about Actemra. It doesn't work for PMR/GCA for everyone - that is clear from the study documentation and you can flare even while on Actemra if the pred dose is too low. They must be used together for some patients - maybe you are one.

But generally - if ordinary painkillers are effective, the PMR must be questionable. For most of us paracetamol etc do nothing. Even ibuprofen which is an antiinflammatory doesn't usually do much.

[Laurapc in reply to PMRpro]

Thanks for that - very helpful. I have one option left which is Rituximab and being seropositive I am hopeful. That won't be until well into the new year so I need to tough it all out for a bit longer.

[katiemills in reply to Laurapc]

Thank you so much for replying, PMR pro. you are amazing!!

Paracetamol doesn't really help me but tramadol does take the edge off the pain.

Some time ago you questioned whether I had PMR because of my symptoms and questioned whether I had late onset Ankylosing Spondylitis ( which my son has) or spondyloathropathy. I did google the link you sent me but TBH it was a bit beyond my comprehension........however I've just found a site that might be helpful for you too, Laura. I have to admit I'm useless at pasting and giving links so the best i can do is this -

AB0905 late onset spondyloarthropathy mimicking polymyalgia rheumatica

(I didn't mention I've had some chest pain/discomfort that the GP Pooh poohed...........) and as a child I had synovitis in my hips and knees..........

[PMRpro Ambassador in reply to katiemills]

That was part of my thinking. I would be asking for a rule-out in line with Prof Mackie's paper.

Can't remember - have I asked where you are?

[katiemills in reply to PMRpro]

I live in Suffolk but would travel anywhere......Prof Mackie's paper?? Is that your original link( that I struggled to follow...) I will revisit it with a medical thesaurus!! Will my GP know what this is ? Or should i just wait until I see a rheumy? I can't begin to tell you how grateful I am............

[PMRpro Ambassador in reply to katiemills]

Well, once upon a time I would have expected a GP to know a bit about it but these days they often don't appear to know basic physiology never mind rheumatology! What hospital are you under? Southend is probably your nearest decent rheumatology department (Prof Dasgupta) but Chertsey and Dr Rod Hughes would be my personal choice.

[katiemills in reply to PMRpro]

My nearest hospital is Ipswich. Am seeing GP in an hour......

[Daisychain12 in reply to katiemills]

Hello Katie. Welcome. PMRpro is beyond fabulous xxx

[Daisychain12 in reply to PMRpro]

Even endone doesn’t touch it xx

[katiemills in reply to Daisychain12]

Isn't she just? I've never heard of endone, but I have now- thank you.

[Stifffingers in reply to PMRpro]

I’m a newbie to this PMR curse.

I’ve been using the oil. Had no success with it.

It’s not a cure.

[patriciawhite]

Tell him what you have told us ,if you don't tell him what you feel he can't know .Ask him about the blood tests he can only say yes or no .Then you will not be wondering .I am the worlds worst for coming out of the doctors realising .I didn't ask this or that . I am getting better now at it .I even take a list to the Rheumatologist I have explained to her I am very forgetful and easily get side tracked . Guess what? she was fine with it . Not the reaction I thought I would get . You get a 5 minute appointment .Make the best of it

[katiemills in reply to patriciawhite]

thank you.

[Tigger2018]

Try Tea Tree ointment for athlete's foot.

[katiemills in reply to Tigger2018]

Oh , sounds a good idea , thanks .