Help with tapering pred

[jane57]

Newly Diagnosed with PMR March 2015 and put on 15mg of Pred along with Vit C & D. Also suggested Alandronic Acid which I haven't started as I intend to question due to having GORD & a hiatus hernia! 57 years old and started with severe right hip/pelvic girdle pain along with painful shoulder & neck. Recently both thumbs ache and bones in feet. After 6 weeks on 15mg have been reduced to 12.5mg and after 2 was down to 10mg. 2wks later 7.5mg. Most pain went almost immediately on the 15mg except in hips which took a couple of weeks. Now on the 12.5mg pain in hips is back with vengience. So worried about dropping more. Seeing Rhuematologist 2nd June. Does anyone think I should suggest a bone scan and should we be having regular bloods etc. Any advice would be welcome as this is a horrible debilitating disease.

[PMRpro Ambassador]

You need to INSIST on a dexascan and refuse to start AA - you have a history of GORD and hiatus hernia which is a direct contraindication for bisphosphonates. There are other options - but not needed unless there is a problem with your bone density. I have not used AA - just calcium and vit D and my bone density never changed over nearly 4 years.

i would say your initial reduction was far too fast and accounts for the return of the pain. Six weeks at 15mg, 6 weeks at 12.5mg and then an extended period at 10mg is far more likely to work - as described by this top PMR/GCA expert group.

rcpe.ac.uk/sites/default/fi...

Many of us are of the opinion that 1mg drops are even more likely to succeed and cause less discomfort. The problem is that if you allow the inflammation to resurge by reducing too far and too fast it becomes more difficult to control the next time.

If your ESR/CRP were raised at the beginning it may well be worth having them checked before and after any decision to reduce - you must also remain at the new dose for at least a month to be sure it is still enough. The pred is only managing the inflammation and, as a result, relieving the pain and stiffness. The cause of the inflammation is ongoing, chronic, and as long as it is active you will need some to manage the symptoms. It is not like other illnesses where pred is used to remove the inflammation due to a short illness - this is a long term situation and most real experts realise this is something that is going to go on over years - not months.

In addition to the ESR/CRP being done as required you need blood sugars and cholesterol and all the usual stuff checked every 2 to 3 months. Have you also had your vit D checked? Even if you were going to try the alendronic acid you must have that checked first and corrected if low - otherwise the AA won't work.

Yes, PMR is a pain - however it doesn't kill which the positive thing to hold on to. It does also get better with time - as long as you do your bit in management too. REST!!!!!!

[jane57 in reply to PMRpro]

Hi PMRpro, so grateful for your reply. My ESR levels were normal at the initial diagnosis and I wasn't offered CRP check! Not offered Vit D either. Bloods done 6 months ago. I certainly will insist on a bone scan now and loaded with all your advice I will certainly want to reduce the Pred at a much slower dose. Do you think I should stick at 12.5 mgs 4 days on and see if I am experiencing withdrawal pain or wait and see if it is the PMR? I am seeing my Rheumatologist on the 2nd June. Thank you again.

[PMRpro Ambassador in reply to jane57]

If it were me I would want to go back to 15mg until stable again and then reduce much more slowly - like this (but I am biased )

healthunlocked.com/pmrgcauk...

It all depends getting things under control and then not allowing it to resurface. And everyone is different.

[jane57 in reply to PMRpro]

Yes I agree, thanks. Will hassle Doctor before I see Rheumatologist and be far more pro- active. This site is great, I don't feel so isolated now.

[wendythom]

Hi Jane

I have been on steroids and alendronic acid, plus calcium and vit D for 3 years. Your steroid reduction programme sounds pretty speedy to me. I think slow and steady is better- literally by half a mg or alternating day by day. I had a bone scan last year and all was normal. I haven't had new blood tests since the first few months- High ESR and CRP are indicators. Unfortunately, in my case anyway, it seems that this PMR isn't something that can be quickly knocked on the head however much you might want a speedy recovery. Good luck!

[jane57 in reply to wendythom]

Thank you Wendy, yes I agree my reduction does sound quite speedy, but have some loaded questions to ask my Rheumatologist now. This is a great site. Good luck with your PMR journey.

[Parijm]

I find this site informs and enables us to ask educated questions to GP/Rheumy. My Dr gave me a 2 year reduction schedule at beginning when I started at 30mg, monthly reductions, but PMR flared at 7mg and I am back at 10mg for nearly 3 months now. I intend to stay at 10 to stabilise until life and PMR tell me it's time to reduce very slowly from there. I was prescribed Alendronic and VitD (which was v low) and am on calcium. I asked for bone scan which will have soon. May not even need Alendronic? Why not see if I need medication before dishing it out? You seem to have got a good grip on what is required and asking all the right questions. I know my flare up was not helped because I thought I could put up with aching and pains just to keep reducing. I know better now! Good luck.

[Lin-63]

Hi Jane I was put straight on Calcium tabs, Alendronic Acid and was sent for a bone scan last week. I'm 63 and also have Hiatus Hernia and various other medical probs. If you want to chat message me .

[jane57 in reply to Lin-63]

Hi Lin63 thank you for your offer. How are you coping with the Alendronic acid plus having a Hietus hernia? Having read all the info on this site I am going to insist on a bone scan, did you have one?

[jane57]

Sorry Lin63 I see you did have a scan. How was the result?

[Lin-63]

Hi Jane, seeing the rheumatologist on the 16th and should be getting results of a load of tests then. Hernia seems to be coping with the Alendronic Acid, but the pred, makes me feel sick. So need to see GP about that.

[jane57]

Sorry Lin-63, just saw your post. With my stomach probs which started 7yrs ago, I was prescribed Omeprazole to deal with the excess acid. Also gallstones were found but a "wait & see" approach was decided. However the gastritis continued and because the Omeprazole made me feel sick an anti sickness drug (metaclopramide) was added. Then in July last year a gall bladder attack placed me on a list for removal! Somewhere between then and my operation to have the Keyhole surgery, I developed PMR symptoms and after a very painful period of Doctor visits, X-rays frustration and many tears. Eventually last March the Rhuematologist suspected PMR and I was put on 15mg Pred. Have today just gone back up to that dose after too big a reduction (12.5mg). Taking everyone's advice on here, particularly PMRpro's and now going to taper slowly by 1mg at a time. Was wondering if you are on Omeprazole because it certainly made me feel sick. It's very reassuring that the Alendronic acid hasn't affected your hiatus hernia and I will be tackling this with my Rheumatologist soon. Kind regards.

[Lin-63]

I have been on Lansoprazole for years with no side effects. Also had gallstones but they removed my gall-bladder about 4years ago now. I also have fibromyalgia so loads of other symptoms for various health probs. Drives me nuts lol. x

[tangocharlie]

I've had PMR for about 4 years now but it wasn't diagnosed for a year because I was only 50 and therefore not suspected. I started on 15mg and it was amazing, I could move again, I dropped down to 12.5 after a few months then 10 then by 1mg until every few months until I go to 5mg over a year ago. I got stuck at 5mg and just can't get below even with very slow tapering, and meanwhile the stiffness has all come back with a vengeance, my hips in particular and shoulder muscles. My GP suggested I go back up to 6mg but it's had no great effect, do I need to go up to 10 again or higher even? I'm going to see a rheumatologist but not until August and I'd like to be more mobile for my holidays before then. I'm reluctant to go back to 15mg because I put on a stone and a half initially which is refusing to budge, classic spare tyre round stomach and round face. Any info welcome. I'm finding it really depressing this going on so long and long term steroids are not good for you. Any info very welcome. Thank you. Tess

[jane57]

Hi Tess, sorry to hear that you have suffered for so long. PMRpro is the one to give advice on this site as regards tapering, but I would say that it sounds as though inflammation has got a hold for you again at around 5/6mgs of Pred. Perhaps a visit to your Doctor to discuss a higher dose to get the inflammation under control at least until you see the Rheumatologist. And 5mg seems to be the dose most get stuck on. Maybe a list of all of your symptoms at each dose could help the Rheumatologist decide with you the next step. Perhaps a suggestion of bloods with the Doctor? These are probably all obvious suggestions, I recently had to go back up to 15mgs from 12.5mgs due to pain returning in hips. Also having an MRI scan soon. I hope you get the pain under control quickly, let us know how you get on. Kind regards Jane.