Awaiting PET Scan

[CSMM]

Update had to email Rheumatologist for review per his instructions I’m of pred awaiting my PET Scan this will allow them to see where the inflammation is coming from and if I indeed do have PMR after 6.5 years being tested for it ! I have 4-6 week wait but I’m in sheer agony Neck , breastbone , ribs , hips , legs can’t lift my arms ! I’ve been prescribed Codeine 60mg two 500 paracetamol four times a day and two 500 naproxen per day !!! This does nothing for pain . Laxido for Codeine complication !!!

I can’t get out of bed without agony , can’t turn in it , can’t sleep , can’t get bra on or off .

I walk so slowly and sitting is so uncomfortable as I’ve got added complication of tail pain . It’s going to be a long wait for scan ! Then what ???

Noticed a pain in middle of my head sheer piercing pain come goes hope it’s not GCA my biggest fear !

Inhumane not to know at this level of pain when scan actually will be .

Thoughts fellow suffering friends ?

Catherine

[PMRpro Ambassador]

What an unfeeling medical team - I'd have thought the symptoms and your reponse to pred would have been a pretty conclusive test. If the array of painkillers is doing nothing (which it won't in PMR) I wouldn't be taking them and at least avoid the potential and actual adverse effects.

But you do have my heartfelt sympathy - I had PMR without pred for 5 years so I do know what you are going through. I found I was more mobile if I used an electric blanket BEFORE getting out of bed and then did stretching in a warm shower. The best effect was to get to the gym and do an aquafit class first thing in the morning - once I had done that, I was able to do a Pilates or Iyengha yoga class and they also helped mobility. Didn't make much difference to pain though.

And ANY sign of GCA and the ED is your only hope.

[CSMM in reply to PMRpro]

You are to be admired managing your pain thank you for your reply . I’m finished with the painkillers the constipation was so awful and with no pain relief as you say what was point .

[PMRpro Ambassador in reply to CSMM]

Is their complaint you have had it so long? Honestly - they are terrified of using pred but happily hand out Naproxen which has cardiovascular and renal effects - well, if the truth were told, effects on every system including liver - and then they give you the max dose of paracetamol, which is really bad for the liver. And codeine which is potentially addictive.

One lady was told by her GP to take nice "safe" paracetamol because her pain was OA, not PMR. SHortly after she had a routine blood test - with sky high liver markers, bad enough to trigger an urgent ultrasound. The operator asked why she'd been sent since nothing was to be found and said that the majority of her liver scans were for the same thing. Nice, "safe" paracetamol ...

At least where I live they are terrified of NSAIDs and prefer a mg or 2 more of pred!!

[Pinkcrocs in reply to CSMM]

Tummy problems make everything so much worse.

[Pinkcrocs]

Dear CSMM, I'm very sorry to hear you are in so much pain. It reminds me of how I was before pred. Sending a gentle hug.Pinkcrocs

Wouldlovetorun has changed to Pinkcrocs

[CSMM in reply to Pinkcrocs]

lol at the pink crocs x it’s just the worst and no end in sight . I will keep you all updated

[Pinkcrocs in reply to CSMM]

The timing is bad for you too.Try and do as little as possible and a hot water bottle is helpful, or an electrica heatpad. Would be good if you could be seen sooner rather than later. x

[CSMM in reply to Pinkcrocs]

It’s true what a time of year to feel this bad ! From when I was fifty I cared for my darling Father then 52 diagnosed with PMR my father passed away later that year only for my mum to take Alzheimer’s the worst case an escapee with no carers available at all I kept her at home and cared and nursed her till she passed away 2023 everyone assured me after all this it would by my time my health would improve etc alas I’m right back at square one !! Worse as I’ve no steroids for now . Anyway I will try keep my chin up plenty have worse to deal with x looking out the heat pad and bottle … I will try anything

[Pinkcrocs in reply to CSMM]

💐xx

[SnazzyD]

Any chance of a second opinion? Someone who doesn’t go in for the inhumane approach? I doubt they would put themselves through this. There’s no way I’d take Paracetamol at that kind of level; I have seen people with liver problems on less. It is individual where the threshold lies between therapeutic and damaging. Naproxen also carries a risk of bleeding. Is all this in order to ‘save’ you from the problems of Pred? If they are doing nothing, why are you still being told to take it?

There aren’t many posts in your history and I tried piece together your Pred history. It wasn’t easy but I got the impression of numerous ups and downs even within the first year. Is that correct?

If there has been a pattern of reducing too fast, hitting the skids and then going back up and getting relief, it could give a doctor with little recall or poor note taking the impression that Pred is not working. If you see different doctors, the pattern will be lost and all they will see is 6 years, still on Pred, no better. You implied that you are always busy in one post so your Pred dose would likely have needed to stay higher because PMR and busy don’t mix.

It might be worth, if you haven’t already done so, writing down your dose/symptom/activity/stress history might be useful to get the bigger picture, especially if you do decide to go elsewhere. I understand that being in constant pain might make this difficult but it looks like you may have to do a fair bit of self advocating.

[Pinkcrocs in reply to SnazzyD]

Brilliant suggestion, SnazzyD: a second opinion! I did this Oct '23 for the same reason.

[SnazzyD in reply to Pinkcrocs]

Oh dear. Third time lucky. Shouldn’t be like this but it can be.

[CSMM in reply to SnazzyD]

I’m absolutely fed up although I said I was prescribed all the drugs didn’t mean I took them as in 2018 I had that cocktail and it didn’t touch the pain ! I meant that they prescribe all that but say pred will damage everything. ! If the rheumatologist was worth his weight he’d would have arranged the scan asap . I’m phoning the Scan place on Monday to ask if they have the referral and when I can expect it and to put me on a cancellation list . I’ve tried everything my life is far from busy now . Thanks for your help

[SnazzyD in reply to CSMM]

Very good idea to chase the referral and you could ask if it can be expedited (by the right person) given the distress you are in. Does the Rheumy or GP know exactly how debilitated you are?

It beggars belief that they are happy to prescribe that cocktail. Just as well you are being sensible.

[Body_bonkers]

I do feel for you - my coping strategy involved moving as little possible, keeping warm and staying hydrated. Do consider going to A&E if you’ve reported the serious nature of symptoms and been told to carry on - not sure your rheumatologist has much of a clue

[CSMM in reply to Body_bonkers]

I’ve hardly moved today the wood burner is roasting Im afraid im fit for nothing. Thank you for caring x The Rheumatologist told me PMR has nothing to do with stress being busy or otherwise and I was far too young to have it ! That’s why I’m not awaiting the scan .

[PMRpro Ambassador in reply to CSMM]

There is a rheumy to avoid and who needs some reeducation!! My rheumy would immediately acknowledge how wrong he is on all count and he's forgotten more about PMR than that one has ever learned by the sound of things.

A large bit of me hopes when you do get the scan you light up like a xmas tree in all the right PMR places. Though I doubt he'll learn somehow.

[DorsetLady PMRGCAuk volunteer in reply to CSMM]

Someone to ditch methinks..😳

[Nagswoman]

I had been on 40mg preds for 2 weeks when I had a PET/CT and the inflammation showed up well.