Fetlar 72

[Fetlar73]

female age77 had polymialgia since Sept 21. On 4 mg Pred. Managing to taper 1mg every 5 weeks. Want to stop taking Alendronic acid having some dental treatment hate side effects of this medication . How can I check I don’t have too much protein in my blood if I do. Am I at great risk of fractures if I stop. I am looking or advice.

[piglette]

Do you suffer from osteoporosis? I assume you have had a Dexascan??

[Fetlar73 in reply to piglette]

Hell Piglette, I have had a decade scan and it showed that my bones were ok except for a few bones in my spine nd neck which were classed as pre osteoporosis. (Sorry forgotten the medical term for this) . But I do not have osteoporosis at all.

[piglette in reply to Fetlar73]

Osteopenia is pre osteoporosis. I am told a large number of people’s bone density deteriorates as we get older. I must admit personally I would not take AA if a doctor could not tell me why I needed it. I spend a lot of time fighting with my GP over it. Even people with osteoporosis should only take AA for a limited time. I would question the need for AA when you talk to your doctor. I am not sure what protein in the blood has to do with bone density?? Why do you ask?

[Fetlar73 in reply to piglette]

Sorry I meant calcium in the blood. My understanding is that if you take calcium supplements ( and I eat a lot of food high in calcium, eg cheese, yogurt) that one may then have too much calcium in the blood because the AA is not now forcing it into the bones. I still find it difficult to make sense of PMR and the related medication. So forgive me if I am on the wrong track.

[piglette in reply to Fetlar73]

High calcium in the blood is normally caused by some problem. I would not have thought eating a lot of cheese etc would cause it.

[Fetlar73 in reply to piglette]

Thank you Piglette much appreciated.

[Janstr]

Hello FetlarFirstly you need to tell your dentist you are or have been on AA.; it stays in your body for some time.

What sort of dental treatment are you having? AA may effect you if you are having an extraction, & my dentist sent me to a specialist for this because I’ve was on AA.

What side effects are you having on AA, & what other drugs are you taking?

If you are taking the weekly AA tablet, are you having it 30 to 60 minutes before food & standing or sitting upright during this period. You shouldn’t bend over at all doing this time eg to pick something up or feed the cat

Are you doing lots of weight bearing exercise, like walking?

You need to be aware that osteoporosis not only causes breaks, but can make the bones in your spine collapse, giving you a hump. My mother had this & it was extremely painful.

[Fetlar73 in reply to Janstr]

Thanks for your reply. Yes, I take AA exactly as prescribed. I don’t have any side effects. But I have always been wary of the side effects. Recently I was referred by my NHS dentist to a private dentist to have an implant. This private dentist made it plain he didn’t like the drug without telling me not to take it. Happily I have found out that I only require a crown after all. But I would have been very worried if the extraction had gone ahead. I do walk the dog daily but must make an effort to do weight bearing exercises. But I realise one has to balance not taking the drug and as you say maybe having a crumbling spine. I do take other meds for stents in my heart and of course statins. Guess I may be anti drug as last year I was diagnosed with PMR and then Macular degeneration and have injections in one eye to save my sight. Plus shielding from Covid it has been a big learning curve. Guess I will have to decide myself, but it is good to get other peoples opinion. So fat I have managed to decrease my Preds by 1mg every 4/5 weeks and am now on 4mg. So my thinking is I may be off Pred before Christmas. So not taking AA may not be a problem. But I do read from this site how difficult reducing the last few grams can be. Thank you again.

[Janstr in reply to Fetlar73]

I was advised not to have an implant when on AA. It’s good that they are giving you a crown. I made the decision to take the AA as I also have osteoporosis & didn’t want to end up with the pain my mother had. I was diagnosed at menopause, a long time before my PMR days & for years didn’t take AA, instead walking long distances, & doing vibration therapy, where you do exercises on plate that vibrates at different speeds & oscillations. This was developed for astronauts who lost bone density in space. For a long time my bone density increased.

Then after getting PMR symptoms & a few months before diagnosis of it & pred, my bone density dropped significantly. At that point in decided to go on AA.

[Fetlar73 in reply to Janstr]

Thanks for your interesting reply. I shall Google vibration therapy.. i have lots to read and learn.

[Exflex]

I’m not an advocate of bisphosphonates but I do take a weekly tablet as instructed. I queried the need with my GP when I got below 5mg and she took advice from Rheumatology on my behalf. I was told to stay on Risedronate until off steroids. Currently on 2.5mg and reducing at 0.5mg every 5 or 6 weeks (I’m going longer as I go lower). Impressed that you can reduce at 1mg every 5 weeks. I don’t think my adrenals would keep up! Anyway at the rate you’re going you’ll be off steroids in 4 months so why not continue until then.

[Koalajane]

Do you take Vit d3/calcium plus k2. I found after my first bone density scan that I had very mild osteopenia and a year later my bone density was normal. This was without AA.

I do lots of walking to help with it.

[Fetlar73 in reply to Koalajane]

That is very encouraging I do take calcium carbonate in water and vit.D separately. I don’t take K2. But will ask my trusty pharmacist if it will interfere with any of the other medications I take. If not I will. Thanks.

[Countrykitten in reply to Koalajane]

I also take vit D/K2,& Magnesium with B6 ( and eat plenty of prunes!) and have raised my T score from-2.3 at last DEXA scan Nov2017 to -1.7 in March of this year. No other treatment. Doctor quite surprised and pleased with that result. (Can't do walking because disabled.)

[Fetlar73 in reply to Countrykitten]

That is amazing I wonder if other people have experienced anything like that. Gives me hope so thank you for posting. I am pleased for you.

[PMRpro Ambassador]

I took calcium and vit D religiously for years until the calcium was causing UTI-like symptoms, The calcium was forming grit that irritated the bladder and urethra. I hadn't eaten much dairy initially and needed the supplement but changed that to eating plenty of calcium containing foods and the UTI symptoms improved loads.

I have never taken a bisphosphonate - after 4 weeks I discussed it with a different GP and we decided to wait for the dexascan result. Osteopenia but not bad enough to require anything more than calcium and vit D - and I take more than the supplement amount, I take 4000 IU a day. There has been little change in my bone density in over 11 years on pred, much of it above 10mg/day, and even our local osteoporosis guru is perfectly happy.

But stopping AA doesn't alter the fact it is present in the bones and never goes away - there will be dentists in the future who will refuse to do implants or other invasive procedures.

Your body is unable to absorb more than 500mg of calcium from the gut at a time - any excess is simply excreted. The body is very clever about maintaining the blood level of calcium (and a lot of other substances) because too high or low levels cause problems. If it is too high it is because there is something wrong, not that you are or are not taking AA. You should be having some level of blood monitoring, every 3 months is ideal, every 6 months is OK. If you are worried - ask your GP to check calcium amongst the other things they do.

[Fetlar73 in reply to PMRpro]

Thanks. Your reply is also very informative. I have only ever had one blood test requested from my GP and that was when I first emailed him to say I was in so much pain moving. He then confirmed that I had PMR. I have never seen him face to face, but he has spoken to me several times. Finally he prescribed the medication told me to reduce pred. Every few weeks and I have never heard from him since. What exactly should I be asking him to do, and why? I did see a rheumatologist as I felt I wanted a second opinion and he confirmed the same, but without any blood tests. I also paid for a dexa scan and sent a copy to my GP he stated that I should take A.A. Telling me that a bone fracture would be very painful.

Hence I found this site and am learning a lot.

[PMRpro Ambassador in reply to Fetlar73]

Are your symptoms still well managed? By that - are you as well as you were on the starting dose? If so, you have done brilliantly to get to 4mg since last September. Are you managing the 1mg every 5 weeks OK? This may be harder now as your adrenal function will need to start up again from now on and you may feel more tired - but not necessarily as you haven't been on pred long really. However - the morning stiffness does suggest that the PMR is still there so I would slow down to 1/2mg every 5 weeks because that will help smooth the adrenal function stuff and make it less likely you miss the dose you are looking for - the lowest effective dose until the PMR burns out. You may be really lucky and get much lower but it would be a shame to waste all the earlier good work by overshooting and a flare start up.

A follow-up blood test with Hba1c and all the usual things would be a good idea - otherwise no-one knows if the pred is having any bad effects on you - it can lead to steroid-induced diabetes amongst other things.

[Fetlar73 in reply to PMRpro]

Yes my symptoms never change, I do have morning stiffness and I do get tired, but this could also be age induced, except that the PMR and the tiredness seemed to arrive together. For some months before PMR I did have aches and tiredness, maybe my body was preparing me for it. Who knows I then got PMR the day after I had my third Covid jab. I am not saying the vaccine caused it just that it may have triggered it out into the open. Or maybe I am completely wrong. I think your idea of a slower taper is a good one I shall do that. I shall also request from my GP a blood test. Thank you for replying to me.

[PMRpro Ambassador in reply to Fetlar73]

The morning stiffnes is normal - the inflammatory substances are shed in the body about 4-4.30am and start to work then until the morning dose of pred starts to take effect. The ideal time to take pred to minimise that is 2am so it is there ready and waiting at 4am. Some people do but the earlier after 4am you can take the better the rest of the morning will be - less for it to do as there has been less time for the inflammation to get going. If you wake to go to the loo that is an ideal opportuity to take the pred and go back to sleep and let it work before getting up for the day.

The fatigue is a normal part of any autoimmune disorder - and I think you are probably right that you were hatching it before the jab was the final straw - I'd had a variety of increasing symptoms for about 9 months before it hit me like a ton of bricks. If it is any consolation - we are beginning to get the impression that cases where the vaccine was the final straw do seem to do well and some are off pred quite quickly compared with the rest of us!

[Fetlar73 in reply to PMRpro]

Well your last piece of information sounded good to me but not of course to those to whom It doesn’t apply. So I only allowed myself a fleeting smile. It will be interesting to see what happens. I do often wake in the night but not always, can one take Pred at different times over a week? and for some unknown reason I thought Pred should be taken with food. I am being lazy I can look all this up myself. You have been a great source of knowledge. Thanks.

[PMRpro Ambassador in reply to Fetlar73]

Better to take with food - but for many just a spoonful of yoghurt is enough and piglette takes hers witha chunk of cheese!

Timing to an hour or two isn't critical - and we used to suggest setting an alarm for early and just settling down for another hour or so until ot startd to work - prednisolone only takes about an hour, prednisone take a couple of hours as it must be processed in the liver.

Have you seen the FAQs??

[DorsetLady PMRGCAuk volunteer in reply to Fetlar73]

This link might give a bit more general info-

healthunlocked.com/pmrgcauk...

[Fetlar73 in reply to DorsetLady]

Thanks I know how busy you are. I have been reading them this evening.

[DorsetLady PMRGCAuk volunteer in reply to Fetlar73]

No probs….if they help that’s good.