First three weeks on Prednisolone !

[Mistyfied]

It has been a slow start on prednisone for PMR, after three weeks there is improvement apart from right shoulder still painful, doctor thinks that could be something else, that could do with some physio . I am still feeling anxious taking the medication. Saw the doctor yesterday they have strongly advised to take Alendronic Acid for osteoporosis, I already have osteoporosis. I tried alendronic a few years ago it upset my stomach . I am so concerned about the side effects they may cause. Is there anyone taking alendronic acid that might be able to give me some reassurance, please, thank you .

[PMRpro Ambassador]

Alendronic acid is only one option - there are annual infusions (zolendronate) and bi-annual injections (denosumab/Prolia) for patients who don't tolerate the tablets. There is also another tablet that is less harsh on the stomach (risendronate). Speak to your doctor and make it clear you don't tolerate the alendronic acid tablets.

[Mistyfied in reply to PMRpro]

Thank you appreciate your help .

[DorsetLady PMRGCAuk volunteer]

If the shoulder is something else - and you are referred to physio then they need to be aware of your PMR…and be careful with what exercises are employed.

PMRpro has replied re AA…

[Mistyfied in reply to DorsetLady]

Thank you for your advice . Not expecting to see a physio anytime soon !

[DorsetLady PMRGCAuk volunteer in reply to Mistyfied]

Just keep a track of your shoulder then - it could still be PMR and the dose is not quite enough.

To test that out you could try painkillers and see if that makes any difference - or a topical gel. If they help then it probably is another issue, if they don’t then it could be PMR … heat might help either.

[Mistyfied in reply to DorsetLady]

Interesting , I am due to reduce Pred dose for the first time on Tuesday . Will take your advice over the weekend with painkillers and topical gel , already using heat pad , thank you again

[DorsetLady PMRGCAuk volunteer in reply to Mistyfied]

What dose are you due to reduce to- 12.5mg or just by 1mg to 14mg. If to 12.5mg just be aware it might be too much -doesn’t suit everyone so monitor things…

[Mistyfied in reply to DorsetLady]

Should be 12.5, which they don’t do, doctor said 12mg. It’s a minefield, will see what happens thank you , in the meanwhile I now have low back gone into spasm !

[DorsetLady PMRGCAuk volunteer in reply to Mistyfied]

What do you mean they don’ t do? You can get 2.5mg tablets or split a 5mg in half.. and you can get 1mg… which is what I’d be asking for.

A drop of 3mg is too much in my opinion.

[Mistyfied in reply to DorsetLady]

Morning DorsetLady, I am inclined to agree with you that a drop from 15 to 12 does seem rather a big jump in one go ( wonder why doctor said they don’t do 2.5 🤷‍♀️). Been wondering during the night about cutting a 5 in half . I was given a program of gradual reduction , dr crossed out 12.5 changed to 12 ! Also wondering as I now have some 1mg , if cutting down to 14mg this week and see how I feel. Can’t imagine the doctor inspectors are monitoring what I take 🤔 are they ! Thank so much I appreciate your advice😊

[DorsetLady PMRGCAuk volunteer in reply to Mistyfied]

Plain uncoated 2.5mg are very expensive compared to other doses - ironically the opposite applies to enteric coated/gastro resistant variety!

Bonkers 😜

But if you already have 1mg -then you know what I’m going to say😊..

[Mistyfied in reply to DorsetLady]

👍😊

[PMRpro Ambassador in reply to Mistyfied]

Only the UK gets funny ideas of cutting tablets! The rest of Europe is realistic and tells patients to cut tablets for half doses unless the tablets are ridiculously small. Like my 2.5mg bisoprolol which I can barely pick up never mind position them in the pill cutter!

[Bluey-1 in reply to PMRpro]

You can get 1.25 Bisoprolol tablets Pro. I started on those but have increased to 2.5 since.

[PMRpro Ambassador in reply to Bluey-1]

I now have them - didn't need them originally but then a hospital doctor reckoned I needed more and added the half tablet in the afternoon. I took it to look willing since I had refused the other instruction she'd made to drop ALL my other medication as "It is doing nothing" until I had spoken to a proper cardiologist!! A year later it was doing nothing but in the intervening period it had been doing something!

[Koalajane in reply to PMRpro]

I had a doctor who halved my bp medication down and said to cut my 10mg to 5mg until I got the new pack.

[PMRpro Ambassador in reply to Koalajane]

And what did your BP do?

[Koalajane in reply to PMRpro]

Doctor was worried it had gone low so dropped the amlodopine down from 10mg to 5mg. It went up a bit and she was happy with that.

They seem to want diabetics to have low bp but she said they want it a bit higher than it was

[Mistyfied in reply to PMRpro]

Interesting , will be cutting in half , thank you

[Nagswoman in reply to Mistyfied]

The new booklet from PMRGCAuk about PMR and exercise is excellent and has very gentle exercises in it.

[Mistyfied in reply to Nagswoman]

Thank you will have to get a copy on the new booklet 😊

[DorsetLady PMRGCAuk volunteer in reply to Mistyfied]

See here - Downloadable or hard cop available

pmrgca.org.uk/information-a...

[Mistyfied in reply to DorsetLady]

Brilliant have downloaded, thank you , will have a good read and digest 🤗

[piglette]

I am so sorry you have been diagnosed with PMR. Have you had a recent Dexascan to see what your bone density is now? I don’t know if you interested or not but we have a private gardening group at facebook.com/groups/6288051... it cheers me up with some of the lovely photos.

[Mistyfied in reply to piglette]

Morning piglette, last Dexascan was 2021 , bone density had got worse from 2018! I declined medication at that time ,I was already on extremely strong drugs over a very long period for Mac TB which practically killed me ! Thank you, kind of you, I am a lover of gardening and gardens , I am not actually on Facebook . To lift my spirits I visited rococogarden.org.uk/ on Friday it was just breathtaking its wonderful what nature does for the mind and soul , have a good day 😊

[piglette in reply to Mistyfied]

The Rococo Garden is fantastic. Do you also know St Mary’s Church in Painswick with the 99 yew trees? There is a legend surrounding the 99 yew trees, that the Devil would never allow the 100th tree to grow.

[Mistyfied in reply to piglette]

I do indeed know St Mary’s Church in Painswick, I often park up and walk through the church yard down the other side and up the hill towards Slad ( Laurie Lee’s home, Cider with Rosie) and back again, beautiful views back towards St Mary’s Church.😊

[Koalajane]

Do you take d3/calcium with k2

[Galore]

I've been on Pred now for 18 months down to 1 mg from 40 mg. A/acid same time and I've been fine. No side effects to mention. Ache in shoulder but think that's something else. Tired and itchy sometimes. Also on Adval and Methotrexate.

[Galore in reply to Galore]

Should have read Adcal!! I reduced very gradually 1 mg per month, eg 12 mg to 11 then 10. Did increase last month to 2 as shoulder ache and lit of stress with hubby in hospital. Made no difference so back to 1 mg.

[DorsetLady PMRGCAuk volunteer in reply to Galore]

An increase of only 1mg is probably not a lot of good to be honest. we usually suggest an increase of 5mg for a few days - and then if/when that works back to just above previous dose. As described in this link -

healthunlocked.com/pmrgcauk...

[Galore in reply to DorsetLady]

Thanks for your comment DorsetLady much appreciated. Wasn't sure how much to increase so stayed safe at 2! Have been down to 1 mg for a month not sure if I could stop altogether or go to half? What do you think? Have dexa scan Friday so that will be very intetesting. Thanks for your help.

[DorsetLady PMRGCAuk volunteer in reply to Galore]

No don’t just stop -go to half… you’d be surprised how much help even a half is….and preferably using a slow tapering plan even though you are still on MTX.

Good luck…

[Galore in reply to DorsetLady]

Just read the next post What comes around etc which is very interesting and comments by PMRpro and yourself. Will go to half thanks 😊