New to site, 'treat as ' PMR rheumatology diagnos... - PMRGCAuk

PMRGCAuk
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New to site, 'treat as ' PMR rheumatology diagnosis July...struggling already

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Great site and amazing resource. I've learned so much in recent weeks about PMR.

Short background, female 68, been waiting over 12 months for rheumatology referral. Thought I had FM, knew nothing about PMR but after seeing consultant he said he thought my symptoms indicated PMR. Hands and feet xrayed, range of bloods...all within normal range incl ESR. 4 day 15mg of pred and he said he'd ring to see if they helped.

Life changing within 3 hours. I could stand from sitting, unaided. Step up, bend, lift arms, move head and neck, hip pain gone. Unbelievable. The pain, stiffness etc etc gone and after over two years of unremitting and relentless pain and restricted movement, it was incredible.

Referred back to primary care; 15mg pred for 2 weeks, reduced to 12.5mg for 2 weeks then to 10mg for 2 weeks. Then reduce by 1mg a month. Due to start the 10mg daily at beginning of next week. No probs until a couple of days ago. Feeling great, cleaned the gutters and later that night, burning throbbing pain in upper arms was as bad as it's ever been. It eased next day after pred. Lesson 1 for me; probably did too much cos I felt good. I know the payback but formerly very active, walking, cycling, surfing, gardening and I felt like the person I was a couple of years ago. I guess it doesn't work like that.

I'm struggling with the idea of steroids; side effects are potentially more disastrous than PMR but I've gone for the easy fix. Bliss to have no pain after all this time, but what a knife edge. Taking Prescribed Vit D and calcium tab daily. GP wants me to take osteoporosis preventing med, but after osteo necrosis mentioned, not rushing to that and probably won't take it. I've spoken to dentist and pharmacist who were helpful.

My B12 low for at least 2 years. I don't have any of the risk factors, but seems I'm not absorbing, so likely to be on daily tabs supplement for life. I thought my pain felt like lack of oxygen to muscles, like too much lactic acid which gives a real burning pain. B12 has an oxygen carrying role, so that's interesting, but no conclusive research. Was on statins for about 11 years but stopped a couple of years ago because of fatigue and muscle pain. Cardiac risk for which they were initially prescribed turned out to be nonsense. And one other odd thing, my oxygen sats are regularly 94/95. I'd expect 98/99. I know it's marginal, but it's odd. General health is excellent, so PMR is a real bummer.

I guess what I'm trying to manage is activity v rest when apparently 'better'. I've never looked unwell and don't think those around understand what it means to take 5 mins to get out of bed, or turn over or peel potatoes in tears because the shoulder/ head neck pain is bordering on unbearable. It's going to be a longer road than I hoped.

So, there we go. This is an amazing site and my thanks.

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PMRpro
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"I'm struggling with the idea of steroids; side effects are potentially more disastrous than PMR "

As someone who has had PMR for over 14 years, has been on pred for now 9 years I think I can say that this piece of work from a top Mayo Clinic PMR/GCA expert is pretty accurate:

practicalpainmanagement.com...

Most pred side effects can be managed when you know how and well managed - they don't do damage.

It isn't as simple as pred is bad, no pred is good. Without pred there is no reliable way of managing the rampant inflammation that is coursing round your body - and it increases your risk of developing cardiovascular disease and some cancers.

But you must remember: while the pred really does make a major difference to how your FEEL - it is doing nothing about the actual disease process, an underlying autoimmune disorder that causes your immune system to attack your body tissues as if they were foreign. That is what causes the inflammation, swelling and pain - but while they are controlled your muscles remain intolerant of acute exercise. That's why you hurt! Pacing - and resting...

BTW - if you aren't absorbing B12, then it is likely oral tablets won't be absorbed properly either. You may need injections.

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in reply to PMRpro

Thanks PMRPro. I've looked at numerous research papers, but hadn't seen this one. It's reassuring. I know anti inflammatories don't work. At all. Paracetomol doesn't. I have osteoA in a few joints, but that's chicken feed compared to this!

B12; it's now checked every 6 months and levels show as 'normal range' with tabs. Whether the body can utilise artificial B12 in the same way is a different question... I'm a keen home cook, grow organic veg, eat little processed food, buy all meat online from Turner and George who use suppliers who don't use antibiotics, growth hormones etc. so I can't make huge changes to diet in the hope of improvement.

I'm really going to have to get my head round the pacing. Thank you😀

PMRpro
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in reply to Hidden

Have some lighter reading:

healthunlocked.com/pmrgcauk......

DorsetLady
DorsetLadyPMRGCAuk volunteer

We know, oh boy do we know!

Welcome.

Couple of posts to read - and take note of - to make life easier. Not easy, but easier!

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk......

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in reply to DorsetLady

Thanks DorsetLady. I saw your posts and they're very helpful. Luckily, by pure chance, I had an eye consultant check up last week for narrow angle glaucoma so I was able to ask about GCA and increased cataract risk. Annual optician check ups will continue.

You have some of the information you need to proactively manage your disease but not all of it.

The median length of time for PMR to last is 5 years 9 months, so you may well have to put up with this for a while longer. Poor you suffering for 2 years without Prednisalone- our only drug for the relief of the inflammation that PMR causes. It is not curative, it just controls the inflammation, pain and stiffness whilst the disease runs its course. Unchecked PMR inflammation can cause real damage to your eyesight if the PMR is allowed to spread and GCA develops. It can also damage the Aortic Arteries that serve the heart. Personally I would prefer the side effects of Prednisalone, most of which can be dealt with, than to endure untreated PMR and the attendant dangers. PMR doses have been shown to be less dangerous than was once supposed in a recent study. There was a slightly higher incidence of Cataracts but that may be because PMR patients tend to have their eyes checked more regularly. They can be corrected by simple surgery.

Members on here have found that cutting out carbs prevents steroid weight gain.

In my opinion you maybe reducing your Pred dose too soon by to big a drop. 15 mgs is a modest start dose for PMR it can be anything from 25 mgs. A drop of 1mg maybe more comfortable when your symptoms settle. If you think that you are in danger of a full blown flare then the advice is to return to the dose that you were last comfortable at. If that doesn’t do the trick people have had success by going up 5 mgs.

As you have learned, the burst of energy you feel on steroids is fake and you really have to pace your activities.

I hope this is of some use. I have had diagnosed PMR for 28 months and have learned everything I know from the experienced people on here and some research of my own. This forum has been a lifesaver. I am currently tapering from 7 mgs to 6 mgs using a slow taper described on the site ( DSNS).

Interesting about your Statins for 11 years, I understand that PMR can arise from Statin use. I have managed to neatly swerve them along with Alendronic Acid. Ask for a bone scan ( DEXA) before you agree to take AA or similar. Mine was excellent so I didn’t need them, thankfully.

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Cheers SheffieldJane. I refused to reinstate statins; I think the whole cholesterol thing is poorly understood and much is based on hypothesis. Cholesterol deposits are an inflammatory response, nothing to do with 'good' and 'bad' lipoprotein. But...I've started again because there's limited evidence that they may have a protective role in osteoporosis, particularly head of femur. PMR used to be a listed adverse effect, but it's not there any more. Big Pharma probably know all about the link.

Hi Astralsurfer, I would be interested to talk to you about cholesterol, I am sick of the hype about it. Mine is high from non dietary reasons and I eat the best food I can afford. No crap ever. I don't know how to manage the fear mongering about it though.

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in reply to Daisychain12

Hi Daisychain. I bought this a couple of years ago:

amazon.co.uk/Great-Choleste...

I have the ebook which is only 99p currently.

It's written by a GP, it's packed with info and I stopped taking statins after reading it. I had immediate muscle pain after I first took them, but it wore off. In last 2 years or so, I was losing muscle bulk in arms and feeling weaker, plus all over pain was starting. Looking back, that was probably the start of PMR, and stopping then was too late.

Many of the 'facts' about cholesterol are based on hypotheses and many 'conclusions' are extrapolated to women. There's a basic assumption that what's true for men will apply to women. I'm not convinced it's so simple.

There's no easy answer. GPS seem to work on risk management rather than treating underlying causes of illness and many of us present ticking all the 'prescribe statin' boxes; age, gender, bloods, lifestyle, family history, BP etc, so end up on statins. It's a minefield! But as I said, I've wimped out and gone back on them but only because they may help with osteoporosis as I've decided against that Alendronic stuff. Hope that helps.

Statins Won't Help Protect Bones, Study Finds – WebMD

webmd.com/osteoporosis/news...

Dec 1, 2014 ... 1, 2014 (HealthDay News) -- The cholesterol-lowering drugs known as statins ... Fractures from the bone-thinning disease osteoporosis are a ...

I remembered reading that statins would not prevent or help protect bones. Statins have a deseredly bad press and pharma are bent on preserving their 'bread and butter drug' and in statins case, the jam and cream on top !

A way forward in dealing with osteoporosis, would be to read Lara Pizzorno's book 'Your Bones'. Pizzorno had osteoporosis herself and reversed it by supplementing with Strontium CITRATE; Vit-D3; Vit-K2; Vit-C; Boron; Calcium (C. Threonate is considered the best); Magnesium; Zinc; CoQ10. Might have missed out a couple, as a time since I myself took - By following her programme, I also reversed my own osteoporosis, 2004. Have not looked back, DEXA scans all excellent / normal. After publishing her book, Pizzorno was asked to join a supplements company, Life Extension. She has been doing sterling work on the osteoporosis front. There was a thread on all of this sometime last year. Should be able to pull it up.

By the way, not to confuse Strontium Citrate with the chemicalised form, Strontium Ranelate, a drug pushed out by the discredited French company, Servier, which has subsequently been pulled from the market (was not passed by the FDA, pulled in France a couple of years ago, and in the UK in 2017). Chemicalised, and carried adjuvants.

Certainly the Bis drugs have a lot to answer to, thank goodness the side effects are 'now' acknowledged, and doctors advise to only take for three years max 5 yrs, then take a break...no pun intended ! The Bis drugs harden the bones but, at the same time stop the bone turn-over : eventually the bone ends up like dried wood and breaks. Hence the number of fractures, especially to the thigh. Prolia is a new one on the market, will need time for the post-marketing unwanted side effects to appear.

Yes, Malcolm Kendrick, superb. One very sane doctor. He has an excellent blog, easy to sign in and follow - put in a search, up he pops. Worthwhile and vigorous comments from group members, many of whom are doctors and scientists. Kendrick is presently writing on the 'True cause of heart disease', is at part 40 now. A veritable tome, especially when you count in the comments ! He has also authored other books apart from the Great Cholesterol Con.

Hope this helps.

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in reply to Ruadh

Thanks Ruadh, I read the Taiwanese research paper, which you've also highlighted below. I wasn't aware of the one above and will take a look. You pay your money and take your pick!

I'm interested in the Bones book, thank you. And I didn't realise Kendrick has a blog, so more stuff for my ever increasing circle!

PMRpro
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in reply to Ruadh

"Prolia is a new one on the market, will need time for the post-marketing unwanted side effects to appear."

Not that new and they are already under examination - rebound bone demineralisation after stopping it. You either have to keep taking it or switch to bisphosphonates. Which rather begs the question one feels.

Search "rebound fractures denosumab" for an evening;s reading...

Ruadh
Ruadh
in reply to PMRpro

Hmmmm. A very bad scene indeed. Surely they will have to remove the product from the market ?

Plus, IF a person has only *had one dose or possibly two, would they be put in the same position as those who have been on the product for a year or two odd ?

I think we need to take even more matters re protest into our own hands. Pharma does not care a monkeys and the medical scene together with governments are right out bought.

Same in France. Just announced, France has just put a ban on Homeopathy ! Shakes one's head. Whereas before, Homeopathy came under the health services care ! Sigh.

I am not sure this is the place to ask this question or whether I should just start a new question on this board.

I was diagnosed with PMR over 2 yrs ago. I found out it was actually a differential diagnosis to a new diagnosis of non-hodgkins lymphoma that was discovered shortly after the PMR diagnosis. I treated with immunotherapy - a drug named Rituxan. It was primarily used for the cancer, but it also treated the PMR too! I still had to wean off prednisone after my treatment with Rituxan, but I am in remission for over a year with both diagnosis’s.

I have read wonderful things about Rituxan and how it is being used for so many conditions. It helps the body to help itself. Does anyone know if this would be a beneficial treatment for PMR or GCA? I haven’t done the research yet.

PMRpro
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in reply to nymima01

You would be much better starting a new thread - simply so people who have already dipped in here and not "followed" would see it.

It is very possible that your PMR was actually being caused by the non-Hodgkins - treating the non-Hodgkins treated the symptoms. PMR is not the disease, it is the name given to the constellation of symptoms which are due to an underlying disease and there are several.

This is a case report of a similar case - heaven knows what the abstract is doing there!

ncbi.nlm.nih.gov/pmc/articl...

Do Steroids Protect Bones ?

Do Steroids Protect Bones in Steroid Users ?

Research criteria - worth having a dig around :-

*statins do not protect bones in Caucasian population who are on steroids*

jamanetwork.com/journals/ja...

Re above : Check in the comment section, no real definitive 'conclusions'. (addendum) Just found this in a different section of the same paper : Quote : " Because we did not have data on actual compliance of patients, the statin group may have included patients who did not fill or use their prescriptions. This would lead to a lower likelihood of observing a protective effect of statins."

Did wonder if this might not have been the case. Glad the article is asking questions. Hmmmmm. Seems a badly implemented research into the drug: willy nilly, hit to our target and don't ask too many questions ! IOW what you don't like, stuff under the carpet. Sheesh. One gets sickened by the whole darn mess of em.

They seem to have some benefit for the Taiwanese peoples - rather a different kettle of fish.

They have also found a higher incidence of the development of diabetes-T2 in steroid users - this across the board.

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