Pmr confirmed: Further to my first post last week... - PMRGCAuk

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Pmr confirmed

Lola5670
Lola5670
40 Replies

Further to my first post last week, saw my gp today who confirmed pmr due to huge lowering in esr levels and crp levels since taking the prednisolone. He has reduced to prednisolone to 12.5 from 15 for one week and then to 10mg and then I need a further blood test and need to see him a week after. He has also prescribed cholecalciferol and alendronic acid once a week, is this medication normally taken with pmr. He says the alendronic acid is to prevent osteoporosis as the steroids unfortunately thin the bones xx

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MhairiP

At least you know what you're dealing with now! That sounds a very quick reduction - from 15 to 10mg in 2 weeks. Normally you'd stay at 12.5mg for a month, then reduce further, but only if everything is under control.

Re the alendronic acid, you may not need it. Can you ask your GP for a DXA scan? If your bone density is good, there's no need to take alendronic acid.

I'm sure the experts will be along shortly to give more specific advice!

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Lola5670
Lola5670
in reply to MhairiP

Thank you for your good advice xx

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Rugger

I agree with MhairiP to ask for a DEXA scan so you have a baseline reading of your bone density. I didn't get a DEXA scan until I'd been on pred for 8 months. It showed osteoporosis, so I'll never know if I had it before taking pred, or if the pred caused it or made it worse.

When you know what you're dealing with, you can then make a decision on how to manage it.

I do take another bisphosphonate drug like Alendronic Acid, but am hoping to stop it in the next year, as we shouldn't stay on them long.

Do take the vitamin D and calcium from your diet and/or a supplement. Others will say what they do to protect their bone health. HeronNS in Canada is our 'expert' on bones!

Best wishes.

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PMRpro
PMRproModerator

Pred does not necessarily "thin the bones" and often a calcium/vit D supplement is enough. You do need your calcium and vit D levels checked before starting to take alendronic acid (AA) and personally I would refuse to take it until he has ordered a dexascan and you have the result. In over 7 years on pred my bone density barely changed - it would have been a waste and it isn't without its own risks. HeronNS on here has written an excellent post about her journey without alendonic acid but using exercise and diet/supplements.

Your GP is in a great hurry - recommendations are to leave a patient on the starting dose for a month - and the same for the next dose down. It may work but if the symptoms do return, don;t hesitate to go back up and see the GP again.

Good luck.

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Nuff1

DEXA scan a must - OH was on a higher initial dose of steroids andrefused Alendronic Acid if there was no indication of need; scan after two months ahowed good bone structure .

He has a daily calcium with vit D tablet.

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phoenix22

Whether to take any medication is largely down to personal choice. I’d urge you to do some research into Alendronic acid before you decide whether or not to take it, thus ensuring your choice is fully informed.

Presumably your GP has also advised you that you need a full dental check up and any dental work to be completed before you start AA? That’s because of a serious and known side effect of AA. You may want to consider other ways to deal with a possibly higher risk of osteoporosis. Not everyone taking steroids will experience thinning of the bones. But medics will always advise in a way that covers their back.

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HeronNS

I agree the start to taper is too soon. It would be better, safer, to be stabilized for a month before tapering. Just for comparison, I had my one week trial, followed by four weeks at 15 mg, total five weeks at 15 mg. I then tapered by 1 mg per week, which worked fine until I hit 9 mg, which was too much of a taper too soon. I went back to 10 for a couple or three weeks then started using the Dead Slow Nearly Stop (DSNS) taper which I found thanks to Patient forum - hadn't found this one yet. My doctor approved my trying it. It has worked very well for me and I got down to 3 mg within a year, slowing my taper down as I got into the lower ranges. I've been around 2-2.5 since then, getting on for three years. As PMRpro said, although my DXA scan showed "low bone mass" aka osteopenia, I didn't take nor did I need any medications and in fact through diet, exercise and a few supplements improved my bone density from -2 to -1.6 that first year, from the time of the first DXA scan when I was at about 9 mg (autumn of first year on pred) to the following autumn, although for more than half that year my dose was still 5 mg or over.

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Suedeshayes
Suedeshayes
in reply to HeronNS

Hi. At 2-3 mg of Prednisone, are the PMR symptoms lessened? I mean the tiredness, and also aches and pains? I just imagine that at these lower levels the fatigue lessens? I have reduced to 7 and would like to think that the tiredness is negligible. Perhaps wishful thinking. Thanks. Sue

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SnazzyD
SnazzyD
in reply to Suedeshayes

Hello. There is a very real possibility that at that dose level even if your PMR not active you may get fatigue from reduced adrenal function. The Pred will have put your adrenals to sleep because the body thinks it has more than enough cortisol, so the adrenals stop working. When your dose drops to lower levels than you would have in your body normally, the adrenal glands need to wake up. This is often a bit delayed or patchy.

Whether you PMR symptoms are better or not depends on whether the autoimmune bit of it has gone into remission or not. The Pred has no influence over that because it’s job is just to stop the inflammation of your condition is not doing damage. As is repeated here many times, the dose you are aiming for is one that manages the symptoms, not necessarily zero until your condition is in remission.

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Suedeshayes
Suedeshayes
in reply to SnazzyD

Thank you.

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HeronNS
HeronNS
in reply to Suedeshayes

It's hard to say. I did find the fatigue lessened, but even today after all this time I can suddenly find I'm completely wiped, and then I realize I've been on the go for hours, so no wonder! Pacing is still very important. But on the other hand I have to remember I'm over seventy now, so no doubt normal aging is added to the effects of PMR/pred. I've had a recent period of being so exhausted all the time, more than could really be explained by the stress of moving. I mentioned it to my doctor at a routine visit and she ran as she put it "all the fatigue" tests. Turns out my ferritin level is down again, so back to the iron supplements.

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Noosat
Noosat
in reply to Suedeshayes

I am now at 3.5mg after being at 20mg in December. I still become very fatigued at times, but believe this is part of the process. As long as I don't have a return of the unbearable pain in my thighs, I feel I am doing OK. Sometimes I give in the tiredness and lie down (this occurs in the afternoon) at other times I find a chore that can be done sitting down and just try to ignore the feeling, eventually I seem to get over it.

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DianeA1
DianeA1
in reply to Noosat

Hi Noosat, did you reduce from 20 mgs to 3.5 in four months? Just curious, have a great day!

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Noosat
Noosat
in reply to DianeA1

Yes, I did. I have expected to go up again, but so far OK. I have not taken every pain I have as coming from PMR. I have arthritis and my hips have some osteoporosis. This afternoon my back is aching, but I gave a number of tours at the Nature Centre where I volunteer for 4 hours on Thursdays. It means I am walking a lot, especially outdoors. Afterwards did a bunch of grocery shopping. I feel as though the pain is in my "bones" not my muscles or nerves. I probably should have taken a couple of Tylenol in the morning. I know all of us are different in pain levels and how we handle it. Occasionally, when I think I may have trouble sleeping, I take 5mg Zanax, but do not make a habit of doing it. Good luck on your tapering

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Lola5670

Really worried now as at first the reduction was going to be 15mg to 10mg!!!

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HeronNS
HeronNS
in reply to Lola5670

Oh, no. That is one third, and it should not be more than 10%. I think your doctor is confusing use of pred for PMR with the way it's used for short term treatment of other kinds of problems. With PMR we are, unfortunately, in for the long haul. Pred doesn't cure the disease, only damps the symptoms to give us some quality of life, until the body decides it's time for true remission. The median length is close to 6 years.

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PMRpro
PMRproModerator
in reply to Lola5670

So soon it would possibly be OK, I did it after 2 weeks and it was fine. But the concern is that at this stage 10mg wouldn't be enough to manage the symptoms.

I did 2 weeks 15, 2 weeks 10 and 2 weeks 5mg. It was OK - until 6 hours after missing the first 5mg dose. It took me a lONG time to be able to get below 10mg again - I'm sure because of the flare stopping then started.

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Lola5670

Maybe I should just stay on 15mg???

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MhairiP
MhairiP
in reply to Lola5670

I'm not sure how long you've been on 15mg (2 weeks?). I'd stay on 15mg for a month, then if you're feeling ok - no pain or stiffness, you could try reducing to 12.5mg. If you feel any discomfort don't "soldier on" - go back up to your previous dose, then try again once things have settled.

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Hidden
HiddenAmbassador
in reply to Lola5670

Hi Lola...no indefinitely. But at least a month on each drop. I went down to 8mg that way and it was too quick and I ended back at 15. You are aiming to get to the lowest dose that controls the inflammation. Making such high jumps down so quickly might mean you miss the tipping point. My GP told me I would be on steroids for at least 2 years. My rheumy has left me at 6mg indefinitely. We each have own relationship with PMR and pred. Don't panic. Keep a bit of a stock of pred if you can and SLOWLY reduce. Hopefully you and your gp will learn together. 🌻

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alvertta

Step one. Get your teeth fixed. Step two. Bone scan. Then check results. The bone drug is awful and can burn a hole in your esophagus according to my pharmacist. Scary drug.

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rosie_jones

Hello Lola 5670.

Please get your GP to read the NICE guidelines for clinical management of PMR at cks.nice.org.uk/polymyalgia... . Please get him to note particularly the section on prednisolone dose reduction, with especial reference to the sentence which says "Rapid tapering of corticosteroids has been associated with longer duration of therapy". Then give him a copy of Quick and Kirwan's paper which you can download from rcpe.ac.uk/sites/default/fi... - note particularly their reference to their patient-centred approach which has taught them that their patients "fear relapse". The regime they use to minimise the potential for relapse shown at Table 2 includes a year at 10mg of prednisolone. Then please tell him that the expert on how you are is you and that he needs to work in partnership with you to deal with your illness. (I'd be inclined to look for an alternative GP who is more open to how PMR treatment should be a partnership with their patient.)

I can't respond to the stuff about alendronic acid because I don't know very much about it but I know I try to minimise the number of drugs I take - somebody recently asked me why I was still on prednisolone after 2 years of PMR. Because I've still got PMR - do they really think I'd be taking harmful drugs if I didn't have to? Good grief!

Good luck with 'managing' your GP.

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Lonsdalelass

Hi Lola5670, just to add to the already great posts, I haven't taken the AA drug and requested a bone scan first, my rheumy confirmed last week that I don't need to take it, so really pleased I hadn't just gone along with it. Also, I was taking the Adcal but it was giving me heartburn so I stopped it, and try to take enough calcium in my diet (I take Vit D3 in addition). I've since had my blood calcium levels and they are normal, so again, I haven't needed the Adcal which is one less pill! My advice, is to maybe ask for your calcium levels to be checked also? It has worked for me. Good luck.

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SnazzyD

I refused AA at the beginning until I had a DEXA scan. It came out as osteopaenic but I’m still only being treated with Vit D and calcium. My Vit D was very low which is most likely what helped cause the osteoporosis. If your doc checks Vit D first they can see if you need a 12 week course of high dose Vit D before settling on a maintenance dose.

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Lola5670
Lola5670
in reply to SnazzyD

Why is AA not liked by many are there bad side effects?

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PMRpro
PMRproModerator
in reply to Lola5670

Bisphosphonates do have some unpleasant side effects but the main concern is that in some people the bone it forms after some years starts to develop microcracks and a different structure which makes it MORE likely to fracture. Exactly what it is meant to avoid. Many dentists will not do anything at all invasive on patients on bisphosphonates - and any potential dental work should be done before starting on them.

It is not recommended for people with a normal range bone density - so a dexascan is essential to know that. It should not be used for more than 3 years without a holiday from taking it - so it makes sense to reserve it for the situations where it is required. My bone density was barely osteopenic after a couple of months of pred. I refused AA and took calcium and vit D instead. I have had 2 more dexascans showing my bone density had barely changed in over 7 years on pred and is fine, does not require any management. I did not need it - and there are quite a few people on the forums who have had similar experiences. Why take any drug you don't need?

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HeronNS
HeronNS
in reply to SnazzyD

SnazzyD (and Lola5670) It is no longer considered best medical practice to prescribe bisphosphonates for what is called "osteopenia". Osteopenia, or low bone mass, is a manufactured disease created by the osteoporosis drug companies to flog more medication. Knowing your bones are not as strong as those of a healthy thirty year old is not surprising and the "treatment" we need at this stage is simply what you and many of us do - eat right, get enough of the right kind of exercise, and take a few supplements to make up for deficiencies in the modern food supply (and our own changing needs as we age).

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SnazzyD
SnazzyD
in reply to HeronNS

Didn’t stop them putting pressure on me every single appointment I’ve had, though the last three have been a bit more half hearted and just ticking the box rather than trying to ‘turn’ me.

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Jura1959

I'm really confused now because you mention lowering in est and crp levels I thought it was caused through levels being higher than they should be.🤔

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Rugger
Rugger
in reply to Jura1959

High levels of CRP and ESR are indicators that there is inflammation somewhere in our body. Before we're treated, the levels can be high, although this varies from person to person. When we take the pred, which treats the inflammation, that will lower the CRP and ESR levels, if they were raised in the first place and if the dose of pred is enough.

PMR and GCA aren't caused by the levels being high - the inflammation associated with PMR and GCA causes the levels to rise, in some people.

If you want to see this in graphical form, have a look at my previous posts which show graphs of my CRP and ESR levels rising when my PMR flared and then falling when I increased my dose of pred to cope with the inflammation. I need to update my graphs.

Excuse this long explanation, but I hope it makes sense!

Me: PMR since May 2016. Now on 7mg and CRP & ESR in normal range for the first time in a year!

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Yellowbluebell

Inwas diagnosed in Oct 18 with p.r and started on 15mg. My gp was great and did t want me reducing in a hurry unlike a lot of gp's. I started reducing in Feb this year and both gp and rheumy are letting me do it at my pace. I am at 12.5mg and staying here till after daughters wedding in April to avoid too much stress in one go. You really shouldn't be reducing so quickly as its a huge drop from 15mg to 10mg in such a short time. There are reducing plans available on the forum. Good luckx

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yogabonnie

do NOT take the AA unless you are CERTAIN you have osteoporosis and even then I say do not take AA. BUT have you had a dexa scan__ I need to read the comments. ! Sorry you have joined our club. BUT it really helps to be on this forum. LOTS of good info!!! Good good luck!

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phoenix22

Lola, PMR is a life changing illness. There’s no easy quick fix and because it’s not fully understood by medical professionals, there’s a lot of conflicting advice/options.

What suits one, for a whole range of reasons, may not suit another. So you need to think about what you’re being offered and be sure that it’s the right choice for YOU. Alendronic Acid is routinely offered by UK GPs. I bought this book before deciding whether or not to take AA as recommended by GP and rheumatologist.

amazon.co.uk/gp/product/160...

I then spoke to my pharmacist and dentist and decided I wouldn’t take it. That’s my choice, but it’s based looking at all the supposed benefits and risks. I did the same with PPIs, which you may be also be offered to ‘help prevent’ gastric damage.

There isn’t an easy answer to anything with this dreadful disease. But, with the help of informed and reliable advice from many here, you can be as sure as possible that any choice you make about what to take, or not, is based on sound fact and experience. Don’t be afraid to keep asking if you have questions.

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Lola5670
Lola5670
in reply to phoenix22

Thank you for your advice, I think I am going to see the doctor again and perhaps ask for the dexascan first before taking the AA, will continue with the the calcium supplements in meantime. I am only 48 going on 49 so it does seem a bit extreme, mind you it seems also strange that I have pmr so young too!!! Thank you once again xx

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PMRpro
PMRproModerator
in reply to Lola5670

There are more people in their late 40s with PMR than most doctors will admit - most of them are palmed off with a verdict of fibromyalgia, depression, "your age" and the like. I was still 50 or 51 when the first signs of PMR appeared - I was nearly 57 by the time it got a name.

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Lola5670
Lola5670
in reply to PMRpro

Thank you for this welcome news, when I initially googled pmr was so shocked to see that there had only been about 2 cases involving adults under 50 lol!!! Was convinced I must have something else, until the blood test results confirmed the doctors diagnosis xx

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Yellowbluebell
YellowbluebellModerator
in reply to PMRpro

I was 55 and told I was youngish but not too young! Rheumy said he has a large amount of under 50's on his list.

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PMRpro
PMRproModerator
in reply to Yellowbluebell

Wish he'd write a paper about them then!!!!

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Yellowbluebell
YellowbluebellModerator
in reply to PMRpro

I sent an email to the secretary but didnt receive a reply but will fire another one over and see what happens. It doesnt need many of them to do papers and the things would change and help everyone.

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PMR2011

I was 51 when I got PMR and was on Prednisone for 8 years. I have taken Calcium (with Magnesium), vit D and K2 and kept up with daily walking ( a fit bit with 7500 steps a day). It has worked well for me. Having only been off Pred for 1 month, I’ve continued on the bone supplements and have a follow up Dexa scan scheduled next week. This is definitely a disease that involves “managing” so educating ourselves is important. You’ve come to the right forum for that!

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