Had RD 20 yrs. also PMR 1yr. Rheumy said RD in remission but in a lot of pain especially in morning.

[siskin]

I am currently on Prednisolone for the PMR and rheumy won't up it.

I have just read about delay release Lodotra, has anyone been prescribed this and if so has it helped with the awful morning pain. Can hardly move.

I can no longer take NSAID,s due to duodenal ulcer because of long term usage.

My ESR & CRP both over upper limits.

Has anyone found other pain relief that works without bad side effects?

Have had Butrans patches, antidepressents, gabapentin and pregabalin.

All ideas appreciated. Thank you.

[allanah]

Sorry but what is PMR short for?

[siskin in reply to allanah]

Hi Allanah, Polymyalgia Rheumatica. Painful inflammatory disease. Arms, shoulders and pelvic girdle mainly affected. Like RD worse in a.m.

Tends to go along with RD but does not do the damage RD does, sometimes can burn itself out.

[Hidden in reply to siskin]

Also tends to be something only over 60s get although I'm sure there are exceptions - and I think it usually burns out after a couple of years - certainly my mother-in-law's has but occcasionally turns into Giant Cell Artritis which is very serious.

Have you tried Amitriptyline yet? I am trying Duloxetine just now for nerve pain (maybe this is one of the anti-Ds you've tried) but too early to say if it's working yet - might be worth asking about this or Amitriptyline if Pregabalin and Gaberpentin weren't right for you?

Hope the pain eases off soon.

[siskin in reply to Hidden]

Hi Twitchytoes, yes have tried Amytriptaline, bad side effects of disorentation, dizzy etc., Also had nortryptaline which I tolerated a lot better but it did nothing for the pain.

I believe my rheumy is wrong the RA is not in remissions as she believes it is.

I have had RA longer than she has been qualified.

Am going to try for a 2nd opnion.

[Hidden in reply to siskin]

We know our own bodies I feel so perhaps you would be more confident in this diagnosis if you could find a more experienced rheumy. Are you off all RA drugs presently then? I had dizziness and severe disorientation and mood changes with Gaberpentin and heart palpitations from Amitriptyline but so far Duloxetine (Cymbalta) seems to be okay re side effects although I'm on the lowest dose and also on Naproxen which maybe helping me the most I think. Bad luck not to be able to tolerate NSAIDs - although they worry me as I have lots of abdominal trouble too.

[siskin in reply to Hidden]

Hi Twitcheytoes, am going to ask GP about Duloxatine, have not heard of that before.

I was able to tolerates NSAID's well Slow release diclofenac did the job, but when I had my hip replaced in June 2013 I kept being sick, I think because of the anaesthetic but docs wouldn't listen and decided to do an investigstion of gut and found a part healed duodenal ulcer and stopped me from having NSAID's. After re-admission to hosp. I was given an anti sickness injection which stopped the sickness, so in a way it was a mixed blessing and if they had listened to me I might never have found out about the ulcer as I was asymptomatic. But the ijnection confirmed it was the anaesthetic causing the vomiting.

Regards

[Hidden in reply to siskin]

Oh blimey that's a bit of a tale. I'm very drug intolerant so keeping fingers crossed that I do manage to cope with Duloxetine. I'm also taking naproxen but for some bizarre reason my body is rejecting stomach protectors now too and so I'm just hoping that my tummy doesn't fire off anymore than it is now (grizzling unpleasantly). It's like a card house sometimes balancing drugs with the rest.

Hope you get to try Duloxetine and it helps.

[cathie in reply to siskin]

I really relate to this

[cathie in reply to cathie]

About having ra longer than rheumy qualified

[siskin in reply to cathie]

The rheumy consultant was well qualified in RD, but I sometimes think if they are so specialised they get a closed mind to anything else, and don't look at the individual.

[cathie in reply to siskin]

I agree. And sometimes experience is of greater value than academic knowledge isn't it. the ideal rheumatologist should take our experience into account - if they haven't had direct experience themselves.

[olive2709]

Go onto the browse communities part of HealthUnlocked and put in PMRGCAuk . That is if you haven't found it already . What dose of pred are you on I have GCA and just gone down to 25mg a day

[siskin in reply to olive2709]

Hi olive2709 thank you, am aware of PMR site. A year ago my brother was taken very ill with GCA which I didn't know about.

It was then I heard about PMR and asked doc about it and she said yes she thought that was what I had and put me on 15mg pred.

I was given a protocol for gradual reduction over a year.

At 4 weeks I had to drop to 10 mg. which was disasterous it all came back with a vengence. Doc said go back to 15 but I had read about more gradual reduction so went to 12.5 cutting 5 mg tabs.

I improved a bit to go down to 10 and eventually got to 3 mg. but was poorly. so went to 5 again.

Still on 5 but not good.

When I asked consultant about steroid card I should carry she knew nothing about it and worse she never told me about GCA symptoms. I knew from my brother and internet but others might not be so well informed.

Have docs advised you on how to reduce dosage?

[olive2709 in reply to siskin]

My doctor is willing to go with me on reduction this is my last 5mg drop from New year it will be 10% drop every month .know what you mean about people having no knowledge of GSA I am doing my bit to change that.I got my steroid card from local pharmacy. If you look on Amazon there is a book by Kate Gilbert on these conditions it is my bible sits by coffee machine in kitchen with pages marked and point everyone to it

Olive

[allanah]

Oh that sounds quite horrid and being on steroids myself at the moment I can associate with how much they help but how many side effects, I'm like a chipmunk at the moment!

[siskin in reply to allanah]

Hi allanah, you made me smile, I had to google "chipmunk" so I gather you are scurrying around gathering in all the food for winter storage. (:-)) Me I am a sloth with hypothyroidism. (:-((

[Hidden]

I'm hypothyroid too but fight the sloth in me tooth and nail. Tiger meets sloth on a daily basis! Steroids turn me bipolar so I don't know how I would cope with PMR - just have to hope I never have to find out.

GCA is a form of Vasculitis isn't it? I'm guessing you know about the Vasculitis UK HU community too? I don't have Vasculitis myself but people there know a lot about peripheral neuropathy so I sometimes go there for advice on dealing with this condition. It's a good community.