Is this really ever going to get better? Is it really even PMR?

Amkoffee, I'm so you are having such a hard time.  I believe that there is a percentage of PMR sufferers who do not necessarily ever achieve complete remission, and continue to need prednisone or some other medicine that replaces prednisone.  However, my understanding of PMR symptoms is that the pain is primarily in the hips/pelvic region/ and upper legs, and also the shoulders/neck and upper arms.  

Could the hands be something else? OA or even RA?   Sciatica can certainly cause nerve pain all down your legs, and stenosis also can cause nerve pain in many places.  

I hope you find some relief.

Sorry I don't have more advice or helpful personal experience.  I've had PMR for 6+ years and was only med free for 6 mos of that time.  I've been on prednisone and tried Aravia, Methotrexate, Actemra and now Cimzia to help get me off prednisone.  None have really worked.

I'm fairly new to all this so more experienced people than myself will be able to help you. But I do know that lonely feeling of just you and the pain and the weariness, and just wanting it all to go away so that you can get back to normal. I am glad that you have a sympathetic rheumy who is prepared to try new approaches. Whatever the cause of your symptoms it sounds as if some are alleviated by Pred, so do you need to taper further while investigating the others? I give you a big and very gentle virtual hug and say that you are not alone 

Oh Amkoffee, you are having a really horrible time! Did somebody tell you that PMR would be gone in about a year? It's more like 3-5 years with some exceptions. One year is nothing to PMR, I'm afraid. As the Prednisolone doesn't treat it, just deals with the inflammation while we wait for remission, you have to take enough to keep the pain away. If you still have so much pain, you aren't ready for the low dose you are trying to reach. PMR is in charge not us and certainly not the medics. What is the rush? Acceptance helps a lot, I found. Not a whole lot of new drugs with their side effects. 

As to whether you have PMR or not. Did the steroids help initially? If the pain went or about 70% went then it's likely you do have it. You cannot take less steroids than keeps that pain away. 

Personally I have been on steroids for just over 3 years and am at 4-4.5mg right now. I have had P MR for almost 4 years, but I believe it may be going into remission now. I need the steroids to slowly decrease while my adrenals start to work properly again. 

We all have different experiences but you can't rush it. It seems to take longer if you try to.

Good Luck!

PS

steroids are the only drug that controls the inflammation but you have to take enough of it.

and Ibuprofen doesn't affect PMR pain but we mustn't take it alongside Steroids because of its effect on the gastrointestinal tract, so it's not an option anyway.

Why can't you get your taper lower? Because everyone is different in their response to pred and also everyone absorbs different amounts (the bioavailability). I may absorb 90% of the dose - you may only absorb 50% so if we are both taking 10mg that is a massive difference in the effect we will get. You've also only been on pred for a year, and you probably had ongoing PMR for a couple of years before. Patients who have been misdiagnosed or ignored often have a harder time getting things under control - it took me a good 4 years to get reliably below 10mg prednisolone. When I was switched to Medrol even 20mg didn't do as good a job, plus the side effects were awful. With Rayos/Lodotra - I'm cooking on gas! And you have had a serious illness in the meantime - that is bound to have set you back.

Have they said WHY you have sciatica? PMR plus myofascial pain syndrome can cause pretty good going sciatic - all muscular - but you say there is MRI evidence?

Someone has suggested the hands may be something else - hands and feet can definitely be part of PMR. The Leeds research group looked at inflammation in hands and feet in PMR patients - yes, part of PMR.

Sheilamac has already said a lot of what I would have said. I know it is dispiriting but PMR doesn't go away quickly. Less than a quarter are off pred in 2 years. Half need up to 4 to 6 years, and Italian study found that one third of patients overall still need some pred at 6 years, whether they had been put on methotrexate or not. And a quarter of us need it for longer. even for life.

Fighting against it, messing about with other drugs in an attempt to stop the pred, often makes it all harder. If the rheumies would accept these facts and stop worrying so much about the pred we would benefit a lot. Gabapentin is unlikely to help PMR - it MAY help other things but I wouldn't hold my breath. I accepted a long time ago that this was a long journey and I won't compromise. I take the pred I need and I reduce VERY slowly. I have flares - but never because of over-reducing, it is an increase in disease activity. That's the way it is. But I live well with it 99% of the time. When I have wobbles it is nearly always due to something else.

Amkoffee, what a mess, I'm so sorry you are going through this.  Have your doctors run all the other tests they should do before confirming that PMR is the right diagnosis?  I get the impression that PMR is what you have once everything else has been ruled out.  At least that's the theory, I'm pretty sure not many other things were checked for me because I had the sought after miracle response to pred, but you are still in pain although your dose is really what you'd expect would work for PMR.  I also would question the wisdom of messing around with other medications which are shown to be less effective for PMR than pred is before having more investigations done. 

I did have pain in my lower legs when I was reducing pred, and all my doctor said was she wasn't worried about it and after I figured out if I kept my legs warm at night I didn't hurt I didn't worry any more either.  But I didn't have pain elsewhere, and certainly didn't feel I had the flu.

Why not look up polymyalgia rheumatica differential diagnosis and see if there's anything there which matches your current slate of symptoms?

Hope you feel better soon.

        I am on my second adventure with PMR and I believe from both experiences:

                            # Reducing from any starting dose to 10 mg is easy

                            # Reducing from 10 mg to 5 mg harder - 1 mg/month works

                            # Reducing from 5 mg to zero is extremely hard

The final reduction, 5 mg to zero can take three times as long as the first two reductions. One mg a month may be two fast. I am currently planning 1/2 mg a month and if pain returns I will move up to the previous level and stay there for another 30 days.

From 2010 to 2013 I had PMR and reduced prednisone to zero and never had a flair  From 5 mg to zero took 743  days. That is almost 5 months for each 1 mg reduction. I am not suggesting that is a good reduction schedule but I am stating that from five to zero has to be done with great caution. 1 mg every two months or 1/2 mg per month seems to be a reasonable approach recognizing that if pain returns to have to revert to the higher level.