Anti steroid

[Kezy]

I am new here. Suffered pmr for nearly 4 yrs . Dr has taken me off steroids too many bad side affects. Currently taking Tramadol when I need to for the pain. I have a trapped nerve also ,. Seeing a surgeon for pins and needles in my hands which are full of pain all of the time.

[polkadotcom]

Hello and welcome here. Sorry to hear that you are having problems, hope the surgeon will be able to fix you. Do they think the pins and needles is due to the trapped nerve?

If you find Tramadol helps with the pain of PMR then you are lucky. It didn't touch the PMR pain for me, but then neither did anything else except steroids. They are a love/hate relationship for me.

[SheffieldJane]

Hi Kezy, welcome to the site!

Your post raises more questions for me.

Do you feel better now you are off Prednisolone?

Does the doctor think that the pain in your hands is a PMR symptom?

Do you experience other pain?

The hand pain sounds inescapably, miserable, I really hope your doctor comes up with something effective for it. I can't imagine that Tramadol does much more than take the edge off.

[DorsetLady PMRGCAuk volunteer]

Hi Kezy,

Sorry to hear you have PMR and the problems with steroids.

As polkadotcom says no other drug touched the pain as far as I was concerned.

Is everybody certain that you have PMR? If you find that Tramadol helps then well done for you, but personally I would be concerned that the inflammation is being kept under control and not likely to spread into other blood vessels.

Please monitor your symptoms, and if you begin to suffer any head problems then you must report them to your doctor ASAP.

[Kezy in reply to DorsetLady]

Hi Dorset lady, Thankyou for your reply. Yes It's certainly pmr. The trouble with me is I have become intolerant to all the other medications. Even cocodamol . Doc gave me gabapentin oh my goodness the trouble I had with that, funny though I can tolerate the Tramadol.

[PMRpro Ambassador in reply to Kezy]

There are no other medications that deal with PMR. Gabapentin doesn't - PMR is not a nerve pain.

[DorsetLady PMRGCAuk volunteer in reply to Kezy]

Ok, but my last sentence does still apply. Wish you well.

[Toenti]

So sorry for your problems. I personally believe that painkillers do absolutely nothing for PMR pain. I was given 6 oxycodones a day before my diagnosis, which did not even take the edge of the pain. It took me more than a week to wean me off the oxies. Is it possible that your diagnosis is incorrect? I hope your docters will help you to get better while delving into the symptoms and look again. Wishing you all the best!

[Kezy]

do you think that changing my doctor will help because I don't seem to be getting anywhere.

[PMRpro Ambassador in reply to Kezy]

If you don't take pred then no doctor will make any difference to be honest - there is no other answer.

You said you have become "intolerant" of all the other medications - there aren't any that work.

What were your pred side effects that led to the stopping it? I had some doozies - but none that made me feel it wasn't worth it.

[Kezy]

Side affects. Hair loss , memory loss, bad temper that was so bad ? Didn't lose it with anybody else only myself. Thinning of nails , fatique, sleeplessness. The probs go on. Went to see specialist and he wrote to my doctor saying you must get this lady off steroids as soon as poss. Also I have COPD which the steroid did help with that. Sorry to moan all the time

[PMRpro Ambassador in reply to Kezy]

No, moan away, if you can't do it here, where can you.

But you have to decide whether the side effects were worse than the unmanaged disease. I had some of those side effects - between us, we've had all those and more.

However, the fatigue is possibly nothing to do with pred, it is mostly the autoimmune part of PMR. I had 5 years of PMR without pred (not my choice and I wouldn't go back there): I gained weight, I couldn't sleep, my nails disintegrated (they were fabulous on pred!), I had brain fog, was disgustingly bad tempered (also with other people and it is a hallmark of a flare even now) and, and...

It isn't a clear cut pred does this, no pred doesn't.

And the specialist should have suggested trying a steroid-sparing medication. There are no guarantees, they don't work for everyone and for some they have nasty side effects too. But for some people methotrexate does help. It should be tried before leaving a patient to manage alone - but then, it wasn't his pain, was it?

[Stroppymoo]

The hand problems could be a separate issue. Carpel tunnel. Good luck with that. My better half is having operation on both hands, waiting to get a date. I know what you mean about steroid moods. Hopefully the pmr will burn it out soon for you. 4 years is about the average time.

[tgca in reply to Stroppymoo]

Two years ago I had massive shoulder, elbow and hand pain plus pins and needles in my hand which went on and on. Having been to regular GP etc, thought I'd get a private opinion. Carpel tunnel was his answer but, before being referred to another specialist, I went to a sports physio who did massage and acupuncture (never had it before) and miracle of miracles, everything started to clear up. Apart from being able to live again, £250 for private and £40 for the physio!!! Good luck