15 yrs of PMR and still going !!

[Avadip12]

After 15 yrs of up and down on pred , I have been going through a bad time again since Dec , but remained on 4 mgs as inflammation markers Neg. However the month it has became worse , with all the classic symptoms . That have reduced my activity and ability to sleep well , my concentration has blown away , and I don’t trust myself to drive. I can’t garden or do my house work without spasm pain in my neck or lower back and hips. Again bloods Neg .

Dr Has suggested that this time it is fibromyalgia, but I am not convinced . Therefore I have taken it upon myself to use 15 mgs of pred for 5 days as a diagnostic tool , to see if all the symptoms disappear as before when I was on this dose. But is after 7 days there is no change I will return to my previous dose. This short burst will not affect my adrenal response.

please you knowledgeable ones , are you able to say if I was suffering from fibromyalgia, that my symptoms would NOT go away on 15 mgs of pred . I am not sure what the school of thought is on this .

I am aware that I am acting without recent medical advice , but using my past treatment regimen . And I do not advocate this for others.

advice will greatly appreciated. Sending wishes for better days for fellow sufferers

[piglette]

You are right, by increasing for a few days you will find out if it helps or not, which should tell you if it is fibromyalgia or not, as pred does not have any effect on fibro.

[PMRpro Ambassador]

Fibro is not an inflammatory condition so is unlikely to respond to pred.

I really do get annoyed at this "You've had PMR too long so it must now be fibro." guff, To tell the truth - I don't care what the label is, if pred keeps me functioning and there is no other option, give me the pred please. If pred might shorten my life a bit, I don't really care if my QOL now is acceptable. I will be a long time dead.

[Longtimer in reply to PMRpro]

Couldn't agree more!.....I will be saying this when I go to Neurology or whoever I see......big problem though....useless GP:s have to prescribe pred!......this is becoming so common!

[Avadip12 in reply to PMRpro]

Yes exactly how I am feeling at the moment. Thanks for helpful reply

[tangocharlie in reply to PMRpro]

Not just that but we need to get the message across that PMR can and often does last a long time and therefore needs continuing steroids as there isn't yet any alternative. The first rheumie I saw wrongly said I couldnt possibly have PMR at my age and even if I had it would have gone in 2 years. And they're the people who are supposed to know what they're doing ....

[Greensleeves in reply to tangocharlie]

I experienced this too , two years and too young, now 13 years later it’s still here and ONLY Pred stops the pain. I’ve managed to low doses , after a rheumatologist told me to stay at 5mg as a maintained dose, which I did for a few years,

Since having Covid in 2020 I can’t get below 7.5 , only feel completely comfortable on 10mg .How I’ll get below 7.5mg I really don’t know. It’s not just the pain I feel physically ill , nauseous, weak headache etc .

Some of these doctors don’t have a clue . I’ll take 10mg next week to cope with cardio appointment and tests etc .

Long timers Club! x

[tangocharlie in reply to Greensleeves]

I was once on 5mg for 3 years but it was trying to get below that when all the problems kicked off and it all flared up big time leaving me far worse off. Currently finally got down to 10 which I think is due to the hydroxychloraquine but no way of knowing whether time on its own might have got me there. It'd be nice to get a bit lower eventually but it's up to the PMR to say, not me. Lontimers club indeed - according to text books we don't exist, hows that for gaslighting in action

[Greensleeves in reply to tangocharlie]

Sorry 5mg caused major problems for you . It’s awful and puts us off tapering.

It’s great you’re down to 10mg , I feel I should stay there instead of taking 10mg during stressful times which are all too frequent. Why should I suffer! The PMR makes the decisions, we certainly don’t.

The gaslighting is appalling, on the one hand we might be the unusual cases , but I don’t believe that’s the case.

To be told by my GP she gets her patients off Pred in 2 years is scary,

I’m glad I stay away from her and am probably viewed as an awkward patient.

When I told an A & E doctor I increase my dose accordingly , he said “ well done , you’ve done your homework “,

He wasn’t being patronising but understood the toll stress takes and the need for extra Pred at such times,

Take care you’re doing great xx

[Greensleeves in reply to PMRpro]

Absolutely PMRpro , those of us who start PMR at a younger age seem have a longer standing problem.

Quality of life is so important, more so than suffering pain, xx

[PMRpro Ambassador in reply to Greensleeves]

Certainly seems a nasty little critter!!

BTW - Covid is another one

nature.com/articles/s41574-...

[Greensleeves in reply to PMRpro]

It is a very nasty little critter PMRpro .

Thank you for the link , explains a lot , I had a gastric bleed , they couldn’t find the source, IV Dexamethasone sorted everything almost immediately. It was remarkable.

Paying for it all now with vascular issues , or so it seems. xx

[Avadip12 in reply to Greensleeves]

Oh blimey it’s round in circles, I’ve dexamethasone would certainly put inflammation in its place . Such a shame we can live on meds like this.

[Greensleeves in reply to Avadip12]

The Dexamethasone was great, I had every Covid symptom and a gastric bleed, it was amazing how quickly it made me feel better.

Wish we could live on these meds or get an occasional boost . xx

[Longtimer]

I could have written your post myself...I am 13 years into the battle...which is still ongoing. Have been told it's now Fibromyalgia which isn't supposed to respond to steroids....it does with me!..I'm on 5.5....my legs in last year has become increasingly weak, so much so they collapse on me!....had MRI scan....seeing Neurologist next month.....the batte goes on,like you feel too ill to deal with it.....QOL if what I'm after...like we all are......Keep us posted how things go.......good luck...

[Avadip12 in reply to Longtimer]

Yes I will keep you updated on the effects of pred . And GP response to my actions , I have written and told him what I am up to. My message has been triaged and deemed to give me a call back on 25 th . Watch this space

[Greensleeves in reply to Longtimer]

Bless you, you’re doing so well. Good luck with neurology x

[Longtimer in reply to Greensleeves]

Thank you....will post on here how it goes....hope you are doing well.....

[Greensleeves in reply to Longtimer]

Fingers crossed for you LT , I’ll keep an eye out on how you get on at your appointment.

Thank you , we have to get on with it , stress doesn’t help, unfortunately we can’t completely avoid it, Take care and keep well xx

[Pixix]

Hm. A difficult one for me. I have fibro & PMR. When I started on pred I was on 15mg, but it didn’t work as well as expected,so it was increased to 17mg. The following month we had already booked to go to southern Florida for 3 weeks & I’ve never felt better. I did all the driving, planning, cooking, all of it!! I had side effects, like pouring sweats, from the pred, but the fibro was no problem. I Was so full of energy, fatigue gone, fibro pains all gone. But who knows why? Maybe it was the wonderful sunshine & holiday?! The warmth? The pred? I’ve no idea. I do know that lower doses of pred don’t help my fibro, & that winter is always worse. Probably not a helpful answer, sorry.

[Longtimer in reply to Pixix]

I agree we don't know what's going on....and I don't think they do either!

[Pixix in reply to Longtimer]

I don’t know. My diseases have been properly & promptly diagnosed & my treatment has been excellent. I have been diagnosed with fibro by 4 different consultants, not all in the same hospital, & each gave physical reasons why they know my body has it. My body reacts to their prodding & probing!! I don’t see a specialist for either. My fibro diagnoses were carried out during appointments for osteoarthritis and for hypermobility & for inflammatory arthritis. The first one, yes, was to confirm GP diagnosis of fibro, though. I am down to 1mg pred and the fatigue is awful, & nausea…but these could equally be being caused by heavy doses of morphine as I have a bad soft tissue injury in my knee, after a bad fall, & have been on crutches for 11 weeks.

[Avadip12 in reply to Pixix]

Yes you are correct, morphine is known for causing nausea, sweating. Poor u on crutches , you must be struggling with it all. Sending well wishes

[Pixix in reply to Avadip12]

Very kind of you. Yes, I’m struggling badly right now. I have bad osteoarthritis in my thumbs & wrists which makes using the crutches more painful, too! Plus the tendon tears in shoulder & foot. Just a bit of a mess, really!

[Pixix in reply to Longtimer]

See my reply below…it will probably surprise you…as I do know what’s going on, & the consultants & doctors I see do,too. What is hard for me to comment on is what affects what…how much does pred help my other diseases like fibro & osteoarthritis, or is it just giving me a false high. Now down at 1mg I’m having trouble,see below, but likely to be my current health situation & lots of morphine rather than anything connected with PMR or fibro!!

[Longtimer in reply to Pixix]

Yes I agree will all what you have said, one doctor said to me pred is a painkiller so you will feel better! Like you I have Osteoarthritis (lower back) Just waiting for sunshine, the cold dosen’t help us!

[Pixix in reply to Longtimer]

The other interesting thing is that Dr is right, IF he were discussing steroid injections, in my case! The regular injections I have for other things always help with the pain!

[Avadip12 in reply to Pixix]

All those things you say are true , I really don’t understand what happens with me , I usually put mine up a few mgs before a holiday and cope very well , even done paddle boarding. Then wham back down again . Who knows . All I know is how my body feels

[tangocharlie]

When I hear the word spasm I instantly think of spinal/vertebral fractures as that is what happened to me and my back went into spasm, and I have since found out that the most common cause of back spasms is a fracture as the body tries to protect itself from further damage. Have you been throughly checked back/neck as my fractures were missed by several physiotherapists and doctors until eventually diagnosed by x-ray over a year later. PS I'm going into my 13th year of PMR and also had a terrible journey thanks to doctors who didn't know how to treat it properly It's what drives me on to change things as we need and deserve better. The Two-year myth needs to be totally put to rest

[Avadip12 in reply to tangocharlie]

Yes thank you for that observation, I have indeed have had a back problem .i had a bulging disc that finally tore and leaked out. I had scans and saw a back surgeon after 15 mths .who said just keep exercising to keep the support strong. And definitely yes , the 2 yr is a myth. Keep well as you can , I believe suitable exercise is beneficial to both problems , if you can overcome the fatigue to do.

[tangocharlie in reply to Avadip12]

But have you had recent x-rays? Even something as simple as a sneeze can cause a fracture.

[Avadip12 in reply to tangocharlie]

I had a Dexta scan since and my bone density are good , thank you for checking my well fair

[tangocharlie in reply to Avadip12]

But I had DEXA scans shortly before and after my fractures and both said my bones were fine - even though they clearly weren't. DEXA scans do not check if you have a fracture or not, they only give a very rough estimate of bone density. In fact they would be even more unreliable if you had an undiagnosed fracture. All I am saying is that you probably warrant further diagnostic tests before concluding you have fibromyalgia which is often a catch-all general description used when doctors don't know exactly what's wrong.

[Avadip12 in reply to tangocharlie]

Surely your bone density has to be low to sustain a vertebral fracture , Without trauma. The only thing I think I could be having is another disc prolapsing. I am going to discuss with my Dr. Thank you. Hope you get a pain free weekend

[tangocharlie in reply to Avadip12]

Well now that's exactly the problem. Docotrs think a normal DEXA means there is nothing to worry about but that can be and often is a wrong assumption.

[Karenjaninaz in reply to tangocharlie]

People with normal bone density break bones, all the time. Bones breakable at any age.

[PMRpro Ambassador in reply to Karenjaninaz]

They do, but more with higher intesity trauma. With OP, needs a lot less of an insult.

[Karenjaninaz in reply to PMRpro]

Of course; I knew a lady, a heavy smoker by the way, whose hip just broke one day while she was standing.

[Avadip12 in reply to PMRpro]

And that is exactly why we should be having our Dexta scans to spot any osteoporosis or osteopenia that can be possibly be treated

[tangocharlie in reply to Karenjaninaz]

I'm talking about fragility fractures caused by osteoporosis rather than broken bones caused by falls, accidents and other trauma. Most common the the spine, hip bones and wrists

[Karenjaninaz in reply to tangocharlie]

I get it ; it’s a constant concern.

[PMRpro Ambassador in reply to Avadip12]

Like TC, I also had a perfectly OK dexascan result - but I had also developed a compression fracture that was found on an x-ray that hadn't been there at the previous one done when my back spasms started 2 years earlier. Sometimes it takes more than just exercise.

[Avadip12 in reply to PMRpro]

Yes I am learning that it’s not straight forwards. I appreciate that a Dexta scan can’t look at the vertebral disc spacing , Exercises are always the first option , unless there is signs of stenosis with nerve compression symptoms. That is an urgent situation , that usually requires surgery to decompress the nerves . However surgery remains the last option .

[Greensleeves]

My bloods have always been negative, even after a TIA ,possible GCA was disputed because of low inflammation markers.

This could still be PMR , requiring a higher dose . I self medicate and monitor, I’ve found there have been times I’ve needed 20mg to alleviate pain in my hips .

One wise GP reinstated me on 30mg to knock it out when she saw the state I was in , perspiration dripping down my face, severe pain. I also don’t suggest this for others but feel we know our own bodies .

I lost all faith and trust after losing my mum to GCA and the unbelievable different diagnoses she received whilst suffering severe pain from both PMR and GCA ,

Sendings and hoping you feel better soon. xx

[Avadip12 in reply to Greensleeves]

So sorry to read that . They say it’s not heiredary , but my mum had autoimmune illness with sorjions disease , lymphoma . My older sister has developed PMR , GCA, and lately scans showing vasculitis of the Aorta. Looks like I may have been predisposed.

[Greensleeves in reply to Avadip12]

Sorry to read this for you too and your family , I feel we are predisposed, it attacks when the opportunity arises.

Absolutely horrible condition with many affiliated diseases.

I hope you get some relief from the pain. xx