So what do I do now?

[Griggser]

My hips, shoulders, hands are all painful and I’m on 16mg of pred. Just got my latest blood results back and my CRP is 2 and everting else was in the normal or no concern range. I’m still in a lot of pain from post herpetic neuralgia and am on amitripyline and just about to start pregablin as well. (I have tried gabapentin, duloxetine, carmazapine, tramadol and lidocaine patches non seemed to make any difference)

Do I just reduce my pred at a fairly quick rate? Any advice appreciated, I just can figure out what to do to get some relief from all the issues.

[PMRpro Ambassador]

Have they looked for other reasons for the pain? Like deterioration of OA? And of course - some people don't have raised markers while on pred, some of us never have markers that are out of normal range - though that doesn't mean it wasn't raised for us. My normal ESR is low single figures - rumbling along at 16-18 looks "normal" but is very raised for me. Normal range isn;t what is OK in a single patient - it is 95% of the results found in a massive population, usually 10,000 plus.

[Griggser in reply to PMRpro]

Originally my CRP was 64. The focus has been on my PHN issues. I’m waiting fir my appointment to come through to see the rheumatologist. The last time I saw him he was muting that it might not be PMR and more fibromyalgia. All I know is it’s very limiting at the moment and I’m a bit rudderless as to what to do!

[DorsetLady PMRGCAuk volunteer in reply to Griggser]

So is he doing anything actively to try and ascertain what you have?

All you can do is, if you have energy and willpower, push for some clarity- and just keep reducing Pred as you feel able….not much help I’m afraid…and it’s very frustrating when you’re waiting for others (hopefully?) in the know to give guidance.

[Griggser]

I last saw the rheumatologist last November so I’m waiting for the next appointment!

[Linny3 in reply to Griggser]

So sorry you are going thru so much. Pain is just the hardest thing to get a handle on.Sounds like you are staying on top of it as best you can. Good Luck with it all.

I feel your pain.

[FSP25]

I’m very sorry to hear of your continuing pain. I’ve taken both Gabapentin and Pregablin. They didn’t make enough difference to me to justify taking them. I’ve also taken Tramadol and Amytriptoline to no avail. I’m in my eighth year of PMR and also have Spinal Stenosis and OA. I’m currently taking 2mg of Prednisolone, Cocodamol & Paracetamol. I’m in constant pain but trying to live with it. I have Physiotherapy, Accupuncture at present and try any therapies offered to me eg Aquatherapy, massage therapy and Mindfulness all of which I have accepted gratefully. I hope you can find some relief very soon. Best Wishes. Stay strong.

[Griggser in reply to FSP25]

Thanks for your reply. I know I’m not alone In this battle and sorry to hear you’re still suffering after such a long time, like you I will try anything that’s offered, I had a really bad day yesterday but started on the Pregablin and today has not been too bad. Fingers crossed things are improving.

[FSP25 in reply to Griggser]

Glad you’re finding some relief. I hope it continues for you.