Concerned and frustrated

[Icepack]

Hello am a newbie here.

Apologies for length of this post but need to set background.

Autumn 2018, achy pain in upper arms, left more than right. After it started affecting my day to day life I gave in and went to docs. Didn't do bloods just directed me to physio. Four weeks later I returned worse. A friend asked how my vitamin D levels were so I asked doc for a blood test. They were so low it was indeterminable on he scale. Given ongoing treatment symptoms eased but didn't go completely. Just accepted this was the reason.

Last autumn ( is this a seasonal trigger ? ) it returned with avengence. Pain beyond belief. Same pain, same places. Worse was upper arms, left more than right again, exactly where the deltoid meets bicep then radiated out and up to shoulders.

Returned to surgery and saw a new doc who strongly suspected PMR. Explained the many tests needed to eliminate everything else. Despite all coming back normal, including no inflammatory markers I still couldn't :

Do up my bra, brush or wash my hair, shower, bath, even doing my teeth was a challenge.

I couldn't extend my arms - Like reaching into back of food cupboard - raise arms above level or to the side, clean myself in bathroom, get dressed. And the pain, excruciating, made me cry.

I was exhausted, spent the day washed out laying on bed while ice packs chilled in fridge to line my mattress at night. No pain relief worked, tried everything up to Tramadol. Ice packs simply numbed my body so I could sleep. Without that the pain kept me awake all night. In the morning it would take me over half an hour getting out of bed, only eventually achieved by rolling out sideways.

My hip area was now aching and my legs felt empty of energy.

By this time my arms could only move in the foot square ahead of me, not up, down, left or right. Couldn't even change gear in the car. I couldn't function at all.

New doc still convinced despite normal results. Prescribed 15mg of Pred.

So after 16 months of excruciating pain only there is only one word I can say. Just one. Miracle ! On day 4/5 after starting Pred I went from unable to stretch for a can of peas to painting a wall 80% pain free but with 90% mobility. I cried with the relief from the pain.

Stayed on 15mg for a month then started tapering 1mg every two weeks. Got to 11 and pain came back. Went up to 14, all fine again. We decided I would use alternative tapering which worked till I was down to 8.5.

Back up to 12 and know doing the dead slow approach which is working.

I am convinced that the tapering was just too fast for me. Maybe I am sensitive to adjustments after such a long time suffering ?

So now, due to lockdown my first rheum appointment was cancelled. Last week I had a phone consult with him. A stranger.

He said because my doc put 'atypical' on his letter he has interpreted that as the doc doesn't believe it's PMR.

That I couldnt sleep ( but it was due to pain before Pred and insomnia after )

That I had brain fog ( I was washed out and heady when I stood not in a fog )

Those coupled with no inflammatory markers tells him I don't have PMR.

I have fibromyalgia. Researching this I find I don't see familiar symptoms.

He put words into my mouth and wasn't listening to me.

He has written to doc ( and CC'd me today ) telling him I have FM and he wants me to come of Pred fast. 1mg every three days ( am in total dread ) and to start me on one of two anti depressants and and maybe keep diazepam at home for bad days. WHAT !!

Also to start prescribing assortment of pain relief until they find one that helps.

As said pain relief was tried and proven not to relieve any pain. Only Pred gave me relief and still does.

So, why is he happy to re diagnose this mobile, pain free person with renewed quality of life, off Pred and so quick too, to put me in a situation of agony again, knowing pain relief won't work and want me on anti depressants every day to help with the transition. I can't see one positive in all this.

All because this stranger I have never met has chosen to re diagnosed me.

I have requested a video consult with my doc for tomorrow. I am hoping he doesn't have to follow the rheum diagnosis ?

Again so sorry for length of this post. Won't happen again.

[DorsetLady PMRGCAuk volunteer]

Don’t be sorry about length of post - at least it means we don’t have to come back and ask supplementary questions.

Up to 20% of patients may not have raised inflammation markers. Symptoms, symptoms, symptoms - always.... and reaction to steroids.

Not sure where your new Rheumy learned about PMR - atypical or not - but he didn’t learn enough!

Too fast a tapering method for sure - and not you being particularly sensitive - would have happened to most people.

Hopefully your Dr will stick to his original thoughts and restart your treatment for PMR - which I think you most definitely have - despite the “experts” views.

Please let us know how tomorrow goes.

[Icepack in reply to DorsetLady]

Thank you Dorset lady.

Another thing the rheum said was he accepted he wasn't an expert in FM ..my thought was ' nor PMR either it seems ' why re diagnose to a condition you don't know enough about.

Having researched I see while PMR is inflammatory, FM is nerves. Or rather the reaction /interpretation to nerve pain. My pain is def in my muscles and or anything that supports my bones. Any other pain stubbing the toe or cutting ,scolding, knocking something gives the same nerve pain as it always has. Not heightened or different. Maybe that's too simplistic or even wrong analogy ?

One thing I do know is if doc doesn't continue with his belief there is no way I will take the ad's. Not a chance.

Just replacing a can of worms with a far worse one, as if PMR isn't bad enough.

[PMRpro Ambassador]

Don't apologise - your story is very similar to mine except I haven't had anyone ignore the effect of pred and tell me it is fibromyalgia. Which does NOT respond to pred as it is NOT an inflammatory disorder.

But I would like to know where these doctors get their idea of atypical PMR from. "Normal" blood markers is "normal" for about 1 in 5 of us - except mine were "normal" because they were within the normal range for a population of thousands. They were at the top of the range, MY "normal" is at the bottom. They were raised for me.

And if you ask the forum - there are a lot of us who had brain fog with PMR. I had to concentrate so hard with my work - I was definitely foggy!

They are so happy to dish out antidepressants and painkillers with proven adverse effects but totally scared of a moderate to low dose of pred that gives patients their lives back.

Where are you?

[Icepack in reply to PMRpro]

Thank you.

Rheum said Pred was evil and listed all the bad side effects and it was important to get of it quickly.

When I argued the amazing effect it had within days he told me the drug helps an array of conditions, gave the example of me doing a marathon and hurting after, take Pred and would feel better straight away, mentally and physically. Ergo only gives an artificial high almost, said that proves the argument that it relieves all but doesn't mean it's right for the condition it's prescribed for.

Yet as you say, oddly, it does work on inflamatory but not on FM. How do we know this and this expert doesn't ?

Yet this is the 'go to expert' our GP's refer us to !!t

I recently ordered the book by Kate Gilbert and can't wait for it to arrive.

I am in Devon

[PMRpro Ambassador in reply to Icepack]

What utter rubbish - we tell people here that pred WON'T helps DOMS (Delayed Onset Muscle Soreness). How do we know? We have probably all tried at some point!

And I took mtx for a month - I had more adverse effects with that than in 11 years of pred! A PMR friend took 3 doses of ibuprofen (an NSAID, painkiller, as recommended by her GP) and ended up in A&E with a coffee-grounds gastric bleed. Not nice for patient or healthcare staff.

What is your hospital?

[Icepack in reply to PMRpro]

Exactly ! As said I went through all the pain drugs way back and nothing helped. Having lived through that I was aghast he wants me off Pred, back into pain and immobility and pass me off to a pain management team, put me on an AD ( never used in my life ) to help me transition off Pred and refer me to a mental health team if required !!

He also said there's no cure for FM and he has told my doc to manage as he doesn't feel he needs to see me again because of his diagnosis.

I am the most glass half full gal you could ever meet and feel so let down by this. What if I was a glass half empty person ? What damage could his consult do ?

I have received a message, went to check but says I need to click 'confirm my email ' I have done that but still can't access ?

[GOOD_GRIEF]

You might want to remind both doctors that well controlled inflammation will not show highly raised markers when Pred it doing its job effectively.

[Estellemac]

Can you ask the Dr for a second opinion from a different Rheumatologist? If it isn’t PMR doesn’t respond to anything but Pred what exactly is it and what is the treatment plan then? So much suffering WHY???

[HeronNS]

Your post nearly has me in tears. If your gp will manage your PMR treatment you need never consult with the ill-informed "specialist" again.

Your miraculous response to your first PMR-appropriate dose of pred and subsequent experiences whilst tapering seem to me to be completely typical of PMR. And as PMRpro pointed out, fibro does not respond to pred, so your rheumatologist negligently overlooked that key diagnostic tool - all else fails, all other tests are negative, symptoms look and feel like PMR, try pred. If it works, well, if it looks like a duck, quacks like a duck, behaves like a duck, why try to tell you it's a squirrel?

[tangocharlie]

Sounds like another rheumatologist who doesn't know what they're doing, sadly there are a few around. My first rheumy tried to re-diagnose me and told me it was fibromyalgia not PMR. I protested and said it couldn't be fibro because I responded well to Pred for years. He also tried to tell me I was too young to have PMR in my early 50s. I had to get a new rheumatologist with my GPs support. I would ask for a second opinon. Read up all you can about PMR so you can ask the right questions and challenge any nonsense. If you stay on steroids - and it sounds like you should if they give you relief - do not think there is a fixed taper of 1mg, per mnth. PMR doesn't work to a calendar on the wall and you have to find the lowest dose that still manages your symptoms, is a continuing balancing act, so read old post on here about tapering correctly, it's probably the most common problem people have as doctors don't give out any advice. All the best, hold your ground, I've been there and had to.

[SheffieldJane]

Your post is not too long, your situation is horrible, I am so sorry. You do need to have another doctor in charge of your case. This one is incompetent to say the least. I cannot imagine any of my doctors behaving in such an obtuse way. You really need a better doctor. It is really angry making. I think your own assessment is totally accurate.

[Loyd]

Your story and symptoms matched mine exactly! When I first went to the doctor I had raised inflammation markers and she suspected PMR but decided to do another blood check which came back with no inflammation so she said no pred and wanted me to go to a rheumatologist clinic. After reading up endlessly I was completely convinced I had PMR. I decided there was only one way to get this confirmed so I was able to get pred from a friend and like you a miracle cure in 48 hours! Saw the doctor a week later and she agreed to prescribe 15mg a day and start tapering in one month. Got down to 8mg and it all came back. I went up to 17mg and now down to 15mg. When I get to 10mg I plan to stay there for a year and go down extremely slowly after that. I think you need to be able to make your own informed decisions and not rely on doctors. I hope you find the right path and good luck.

[alangg]

Really sorry to hear your story. I'm in Exeter and the consultant at the RD&E looked at my referral from the GP and refused to see me saying that it was a textbook case and that my treatment could be managed by the practice. This was in January 2018. I think that you should definitely ditch your consultant and work with your GP to manage, what sounds like, another textbook case.

Good luck!

[Estellemac in reply to alangg]

My referral was treated the same way 18 months on. I was having a hip replacement and wanted to understand the implications of Pred and inactivity etc. He said the same the GP can manage it. The GP asked if I knew how much a referral costs. I said It’s ok I’ve worked I’ll my life I think I can the NHS and I can afford it. I’m 4.5 years in now and only got a face to face so she can get me off steroids. Didn’t seem like the priority was to treat the problem. Which she decided wasn’t PMR anyway. So much stress that’s unnecessary.

[Fireleigh]

My new rheumatologist doesn’t place much credence on blood markers, to the extent that I now need to ask firmly for a test. He prefers to rely on how a patient feels. Furthermore, one of the main indicators of PMR is its response to steroids. If it improves noticeably with steroids then it’s PMR. I’m not medically qualified but it sounds like PMR to me. Why not ask for a second opinion?

[PMRpro Ambassador in reply to Fireleigh]

If it improves with pred it increases the chances it is PMR - but it is not a definitive diagnostic tool. It is another brick in the wall of signs and symptoms ...

The most definitive thing about a response to pred is that it shows you don't have fibromyalgia - it shows whatever you have is inflammatory in origin, but there are a lot of things it could be that have to be ruled out.

[marigolds in reply to PMRpro]

Can you not have PMR and a touch of fibromyalgia?

[PMRpro Ambassador in reply to marigolds]

There are people who have both but they mostly know the difference because fibro was there before the PMR appeared.

But returning pain as you reduce the pred dose is NOT fibro - it is inadequately managed PMR. And doctor who says otherwise is in a different world from us!

[marigolds in reply to PMRpro]

Thank you. I managed to get off the pred as Doctor and Rheumatologist wanted in February but have since had groin/hip problem, first in one hip joint and then the other, alternately. It is no where near as bad as PMR though.

[Gaycreasey]

Hello Icepack

I’m 31/2 years in and currently on 5mg of Pred. It has been a roller coaster and had come down to 2mgs. but it was not enough and the symptoms (back and shoulder pain, dizziness, fatigue etc) came back. I have never been referred to a Rheumatologist for which I remain very grateful. I am astounded by the experiences that patients have with ill informed, over confident practitioners. I was very grateful to my original GP, who made my initial diagnosis and was supportive throughout. I then moved house and had to move to a different Medical Centre. They wanted me off Pred and on to a different steroid, telling me the one I was on was very expensive. Eventually ( after three phone calls from three different people) I gave in and tried it. Within two weeks my symptoms were back to square one again. I quickly went back on to Pred and they have left me alone since then. I’m afraid that you do have to stand your ground and fight for what you need. Only you know how you feel when you are not on the right medication and being asked to go on to sleeping tablets and try various pain killers when you know that one drug gives you back your life is not fair! Good luck and keep plodding on!!

[PMRpro Ambassador in reply to Gaycreasey]

What sort of pred is expensive? Did they manage to squeeze you onto Lodotra? Which is expensive! Or is it enteric coated (coloured tablets) which ISN'T significantly more than plain pred and a PPI.

[Gaycreasey in reply to PMRpro]

I take liquid Pred because I can’t take lactose and most tablets have lactose in them or coating them. Unfortunately, the original tablets I was given did not take any of the symptoms away and I was put on to liquid Pred. These original tablets were the ones my new GP surgery urged me to take and would not listen to my arguments against them. When I went back to the GP and saw a twelve year old she told me that I should have come off Pred after a year.! I hope she’s learnt a bit about PMR now!!

[PMRpro Ambassador in reply to Gaycreasey]

Ah - it IS expensive! 30x the price or was! But if you can't take lactose, you can't take lactose. Tough. Was it you a doctor told "but it is only a little bit of lactose ..."

[Gaycreasey in reply to PMRpro]

Yes it was. I nearly hit him with my handbag!! You can imagine how it would feel having PMR symptoms and having the bloated stomach, rushing to the loo and feeling ‘hollowed out!’ symptoms of lactose intolerance.

[Constance13 in reply to Gaycreasey]

How often do we feel like "hitting" doctors, rheumies with our handbags?? I wonder if anyone has ever done it?😂😂

[Jackoh]

Your post was not too long and how I’m sure, we all felt for you. Stand your ground and either ask to be referred elsewhere or if your own GP has managed your case well up to now ( which on the whole I think he/she has) then stick with them. This rheumatologist you have been referred to seems extensively lacking in their knowledge of PMR.

All the very best. Let us know how you get on.

[Cherrymoon]

Ditto, exact same story for me, cancelled appt, phone consultation, markers low, says probably fibromyalgia, quick reduce off preds - 15 down to 10 then down 1mg every month, on comes the pain. Not yet been recommended antidepressants!.... do we have the same strange!!

[PMRpro Ambassador in reply to Cherrymoon]

Were the markers low pre-pred?

[Cherrymoon in reply to PMRpro]

Evening pmrpro, I was told border line! but no figure, one week after doc put me on pred 15mg, the follow up doc moved me down to 10mg. On request for repeat prescription early May (now in lock down) yet another doc told me to taper 1mg per month. Following my telephone consultation now told taper 1mg every 2 weeks. Hip and arms pain coming back, palms of my hands and soles of my feet have massive burning sensation that has worsened, now on 7mg for past week, can't see myself moving down anymore.

He was adamant I had fibromyalgia and doubts I need thyroxine med!

Can you have both PMR and fibromyalgia?

Preds have been such miracle relief for me too, as all others testify here.

Becoming pretty miserable with it all again.

[PMRpro Ambassador in reply to Cherrymoon]

You can have both PMR and fibro - but any pain that goes away with pred at the right dose is NOT fibro.

Your doctors obviously have no idea at all about PMR - you don't give pred at 15mg for a week and then reduce the dose. PMR lasts years - not weeks - and it is a chronic autoimmune vasculitis. The first one was possibly on song, the second wasn't and the third was halfway there but should have told you to stop reducing if symptoms returned. And you DON'T speed up the reduction as the dose goes down, you may have to slow it down - was that doctor the same as one of the others? No reduction should be more than 10% of the current dose - and reducing more than that per month is predictive of a flare.

rcpe.ac.uk/sites/default/fi...

is a specialist developed, tried and tested approach to managing PMR. The main stakeholders, the patients, think it is still a bit fast but it is better than most in the medical literature. If the pain is coming back below 8mg, 8mg is where you need to be for now - and perfectly reasonable at such an early stage. You will get lower - just not yet.

[Cherrymoon in reply to PMRpro]

Thank you for all your advice. Forum is invaluable.

If only GP was a constant rather than 3 individuals all with varying advice and now the consultant too! Trying to speak with GP who first diagnosed PMR (she has my confidence, and had said it would take 18 months to 2yrs on preds)

Perseverance with all matters PMR.

[Irishfurbaby]

Sounds like PMR that was me when I was diagnosed in Nov 19. Had same symptons. On pred 20 mg a day for a month then tried to get off too fast.

Down to 2mg a day but i also take iburofen and panadol am and at night.

This works for me plus in these cold months have been sleeping on an electirc blanket which helps heaps. It is such an individual problems. If u can exercise st all walking or yoga this should help also.

Good luck

[Cherrymoon]

Evening Irishfurbaby, in my profile i said my electric blanket was my saviour before pred, so much so i had one on the sofa and one on my bed.