rheumatology appt

[OrwellMan7]

I was diagnosed 12 months ago with PMR but possibly had it up to 12 months prior, started on pred at 15mg, progressed until October following the advice given by many people on this site and was down to 7 mg. Then had a flare and went up to 15mg to contain it which I am still on. Just had a visit to the rheumy who said my blood results indicate that PMR is inactive in my body and that my symptoms over the last 4 weeks indicate that I have fibromyalgia. I have to reduce dramatically 15mg-10mg alternate days for 2 weeks etc. He is writing to my GP advising her to prescribe a different drug regime . Thank you for listening, hope you have a Happy Christmas and has anybody got any comments.

[PMRpro Ambassador]

Of course your blood results indicate the PMR is not active - you are on 15mg of pred. There are no "blood results that show the cause of PMR is active" - there are only blood results that show there is no inflammation being caused.

You had a return of symptoms - when you then took 15mg of pred did you get relief? If you found they improved dramatically then that is a sure sign that whatever you have is NOT fibromyalgia - it does NOT respond to pred because the mechanism of the symptoms is totally different.

If, on the other hand, your symptoms were unchanged - it could be fibromyalgia!

[SheffieldJane]

I have a diagnosis of Fibromyalgia and PMR ( only knew about Fibro very recently, worry that it's a bit of a catch all for all the symptoms that don't fit).

If you had a fairly dramatic positive response to Prednisalone, initially, I would say that, that is the best indicator that you have PMR. If you still felt pretty ropey with aches and pains and all systems affected ( bowel, bladder, digestion, yuk) then maybe it was Fibro all along.

My worry is that coming off Prednisalone so steeply would make a healthy person feel rough. My instinct is that you should gradually come off the steroid in tiny increments. Ask your doctor to help you. I am about to begin the descent from 10mgs to 9mgs probably alternate for a month, then 9 mgs for a month. My body has ( hardly) noticed so far, I have come from 20mgs and was painfully seized up when I began.

I hope PMR has left you, I really do, Happy Christmas and a fab healthy 2017.

[HeronNS]

I'm shocked that after over a year you would be advised to reduce so quickly. As Sheffieldjane says even a healthy person would suffer with that kind of dose change. Never reduce by more than 10% at a time, and after such a long time on pred probably stay on each reduced dose for a month. Even if it's not PMR you will suffer steroid withdrawal pains at the rate being prescribed for you. At the very least your adrenal glands will need time to wake up and start producing cortisol again once you get to something like 7 mg. so I hope they don't plan to keep rushing you down once you get to 10.

[piglette]

I really begin to wonder what planet some of these rheumatologists are on. It is not exactly rocket science to realise that if the steroids are working it would appear that the PMR is at bay. You don't need a medical qualifications to employ common sense.

[PMRpro Ambassador in reply to piglette]

My experience is that having a medical qualification often negates commonsense...

[OrwellMan7]

Thank you all for your wisdom, I am mulling it over and your opinions do help, I will include your thoughts in my chat with the GP. just to elaborate on the taper he said 10/15mg on alternate days for 2 weeks then 10/5mg another 2 weeks, and then 1mg drops over a period which I cannot remember, and I think the new drugs are introduced soon in parallel with the tapering steroid. Again best wishes to you all.

[polkadotcom]

I was diagnosed with PMR some 16 years ago and with Fibromyalgia 4 years ago. I find they are a completely different type of pain and, of course, it isn't easy to explain how they differ to someone both with and without them, but I'll have a go.

For me PMR pain is localised muscle pain in various degrees in specific muscle groups, whereas Fibro is a 'hurting all over' rather like a background generalised toothache pain. That is until someone manages to hit a trigger point! But I also have tendonitis and (what is being called at the moment) peripheral neuropathy. On a bad day I tend to give up and go to bed as I'm unable to tell which is what, but I do usually know which is affecting me at any one time.

I have found Bowen therapy to be a boon, especially with the tendonitis. I've had Achilles tendonitis for many years and Bowen clears it immediately.

[OrwellMan7 in reply to polkadotcom]

thank you for that. What sort of drug regime are you on? Is it steroids plus FM meds? I wish you well and hope that Christmas brings you what you wish for.

Dave

[polkadotcom]

Yes, steroids also gabapentin and amitriptyline both for FMS and for the nerve pain. I'm not totally sure that gabapentin works for me, but amitriptyline certainly does. I don't want to stop the gabapentin (in case it is actually doing something) as I've got other problems right now and I don't want to rock the boat.

[missmylefteye in reply to polkadotcom]

Do you have any inflammation with the fibromyalgia? if you can sort the two illnesses out like that...?

i was diagnosed with fibromyalgia many years ago, but i never felt it was either a complete or very useful diagnosis. rheumatologist said i had fibromyalgia with clinical inflammation & said to take celebrex 3×a day. from what i know, fibromyalgia does not cause inflammation/arthritis. that was about 15yrs ago, & its like i became blacklisted by local rheumys, who all refuse to see me because they refuse to see fibromyalgia patients, really crazy.

now i have so many more inflammation & serious arthirtis problems (my left tmj is bone on bone), probably gca with the pulsating temple & loss of vision. I also seem to have peripheral neuropathy - tingling in fingers & toes, shimmering in my eyes, too sensitive hearing, & a general buzzing-fest in my head much of the time. It does become overwhelming & i do wish i had managed to get more help over the last several years.

[PMRpro Ambassador in reply to missmylefteye]

What an appalling attitude - dishing out a diagnosis that is still a cover-all for "I don't really know" and then refusing to see patients even if they have symptoms that could be another form of arthritis! Having one thing doesn't excuse you from having another one, or two, or three...

There has been a quite heated thread from someone in Oz who was told fibro by the person who "discovered" the diagnosis - sounds as if your local rheumies are his disciples! If you are interested:

healthunlocked.com/lupusuk/...

But it does sound as if you have an autoimmune disorder that may be neither fibro nor PMR/GCA.

[missmylefteye in reply to PMRpro]

Thx, PMRpro. I will take a look at this. My multiple health problems do seem auto-immune to me also. For now I'm still keeping GCA/PMR on my short list, but really I have no clear path/test results to an actual diagnosis. I felt so good on 60mg of pred; now I'm consistently tapering down, on 40mg right now, & I feel pretty bad again. A lot of my troubles are neuropathies now. I swear getting the GCA biopsy reduced all the pulsating lines of pain on the left side of my head & face. I do get a milder version now in my right temple, over right ear & down the right side of my neck; one set of symptoms why I am still keeping GCA/PMR on my short list.

[PMRpro Ambassador in reply to missmylefteye]

Fair enough - but you can have more than one problem - and autoimmune symptoms have a habit of overlapping, "cross-over" they call it.

[missmylefteye in reply to PMRpro]

Yeah, i know.

[missmylefteye in reply to PMRpro]

Thx, yes, i'm glad to see someone is writing about this - doctors who over diagnosis of fibromyalgia, while under treating/diagnosing inflammatory symptoms, etc.

To put it plainly, these bastards have probably ruined a lot of peoples' lives.

[OrwellMan7 in reply to missmylefteye]

thank you for your reply, I dont know yet, I am trying to differentiate the different symptoms in order to understand what is going on. The pains are in other places and seem to move and last less long than pmr did before steroids., The rheumy diagnosed fm very quickly less than 5 minutes, based on bloods results and a finger press test. Im waiting for him to write to the GP, as it takes 2 to 3 weeks to get an appointment and the new drug regime Im not happy.Who is looking after your health now and what meds help?

Best regards Dave

[missmylefteye in reply to OrwellMan7]

Well, i've been bouncing back and forth between going to doctors, and 'going off the grid' so to speak. i just finish 20 days of acyclovir anti-viral. it definitely helped me feel less overall sick & it helped with severe trigeminal nerve pain i was having. i had a script for it, but used it differently than prescribed. my idea was to treat varicella zoster. im getting lumbar puncture next week & asked that be added to infectious diseases that they will be checking for in my spinal fluid.

I am still on high pred, tapered to 37.5 today. i only really felt good on the 60mg so far, but i must get my dose down after 3.5mo of these high levels. i am not enjoying the taper much.

More later, falling asleep

[missmylefteye in reply to missmylefteye]

I'm also taking nor-rotten, helps some with nerve pain, but wakes me up when i take it at night & puts me to sleep when i take in am. Also know as gabapentin...

I'm taking baclofen for spasms. Nothing i have tried really helps with pain except the pred.

[PMRpro Ambassador in reply to OrwellMan7]

Think I might want a different rheumy! There is no blood test that will dx fibromyalgia - unless it is this one (maybe):

healthrising.org/forums/thr...

although as I understand it from the article it is not yet mainstream and is expensive. So if you are in the UK - it won't have been that one! It is also (the article suggests) not 100% accurate.

Other than that - it would take more than a finger press test to fulfil the criterion of 11 tender trigger spots out of 18 potential ones! I definitely do not have fibro, I have PMR, but if someone pressed my muscles pre-pred I would have shrieked.

[OrwellMan7 in reply to polkadotcom]

polkadotcom best wishes to you, thanks for that. i THINK those meds were mentioned but will talk later when I have seen the GP, soldier on.

Dave

[polkadotcom]

I've never associated inflammation with fibro, but for a good few years I was labelled with an additional diagnosis of 'inflammatory arthritis' which is the rheumy's catch-all label for things where they haven't really got a clue. That seems to have dropped off my latest list of medical conditions - my best guess is that they really haven't got a clue.

I do know from my reading that arthritis can be very hard to diagnose - like PMR. But it's all in the game as whatever the label, the same drugs are used for everything!

[missmylefteye in reply to polkadotcom]

They wouldn't give me the meds for many years! I'm only on the pred now because my left eye messed up.