Reducing

[Tonysue]

My doc. Has been convinced that my PMR has left me and the pain I have in my lower back and legs is due to the problems I have with my spine. Although I have been doubtful I think he may be right as it actually is different from how I was with PMR. So I have reduced to 4 and a half mg. From 16mg I have been very tired and of course if I have had a bad back day I have been terrified incase it is PMR flaring. Anyway can one of you experienced people tell me if 1mg a week is ok or do I need to slow down again as I have been doing for months when I thought I still suffered from the horrible condition. When my husband took steroids during his chemotherapy treatment he came off them, with advice, quite quickly. I’ve never had a positive blood test which, as others who haven’t, know how unsettling this is. I was diagnosed 4 years ago . Anyway I now have an appointment with a rheumatologist, the first one ever. I’ve waited months. My doctor says it’s worth going as he might help with my pain anyway. ( I had an MRI scan last year which showed various problems and have a history of bone probs. Two new hips, shoulder pain, broken bones taking ages to heal.) I feel in limbo and would love a positive diagnosis but I’m not alone in that am I?

I’m reducing a half mg every 6 days at the moment.

[DorsetLady PMRGCAuk volunteer]

Hi

Would be inclined to carry on reducing half mg every six days until you see Rheumy.

Even if your PMR has gone - maybe, maybe not - you’ve been on Pred for some time (unlike husband, so different scenario) so you still need to go slowly. Give your body time to adjust. Think, unless Rheumy instructs differently, that 1mg a week might be too much

Do hope GP is right.

[Tonysue in reply to DorsetLady]

Thank you Dorset Lady. I feel more confident already because , with all your experiences you seem to think I need to keep going until told otherwise. My doctor is as helpful as he can be but is a GP and can’t know the ins and outs of all things that can go wrong with us.😊

[Tonysue in reply to DorsetLady]

So do I .🙂

[PMRpro Ambassador]

Even if the PMR has gone, at this level you need to reduce slowly for another reason: your adrenal function is now king. I'd say what you are doing is fine - it's a low dose so hurry isn't called for. And while your GP may be right - maybe he isn't and if you go too fast you'll just not know where you were if he is wrong.

How long was your husband on steroids during chemo? I can't remember how long OH was on or took to reduce (it's 26 years ago...)

[Tonysue in reply to PMRpro]

Thank you PMRpro. Tony was on steroids for about 18 weeks. When we asked at the hospital about dropping them she said, ‘straight away.’ I knew it was wrong but I thought it was because the dosage and circumstances was different but we did as was told and was he ill. 😨 We’d been told the chemo might kill him but in fact the steroids nearly did.

Thank you for your advice which has given me confidence to carry on. I’m going to see my physio tomorrow and she helps too.

We’ve just moved house and I think all the bending over packing cases and the lifting hasn’t helped my back. We’re both pretty exhausted as Tony has lots of health issues but we love it here and are really happy for the first time in quite a long time. 😀

[PMRpro Ambassador in reply to Tonysue]

If I move again I shall sit and watch the men packing! Not that I have any desire to move anywhere...

18 weeks was quite long enough to require a couple of months taper - you really would think they'd know wouldn't you?

[Lafontainepam1 in reply to PMRpro]

Yes, don’t be a crazy woman like me and do it all, then have to fight myself back from it all! But it’s done, house sold, now wondering if I could ever make the trip all the way to New Zealand 😎

[PMRpro Ambassador in reply to Lafontainepam1]

Probably easier than moving house!!!!!

[Lafontainepam1]

I had to look twice to make sure I didn’t write this post! I’ve been on Prednisone for over 6 years, at 6mg for over a year trying to s l o w l y reduce at 1/2 mg. In March we sold our winter house in Arizona, I had to sell, give, bring home in my car everything!! I have several bulging disk, spinal stenosis, and a curved spine! By the time I came back home after two months to Michigan, I was in so much pain and could hardly function! I’ve been home now for a month, I’m also in therapy. I cheated and took 10 mg a day for 3 Days to regain some energy. Went to see my rheumy yesterday, he said, no, no!! He wants to see me in 3 months and by then I should be down to 5mg. It felt sooo good to feel a little like normal, if only for 3 Days.

Please go slow reducing, 1/2 mg at a time only, these gals know what their talking about. Back pain alone will make you feel horrible!! God Bless💕

[Tonysue in reply to Lafontainepam1]

I never really thought about it when someone was complaining about back pain. Felt sympathetic but that’s all. I know now how bad it can be. And one of the worst things is , it only makes it worse if you don’t make sure you are moving regularly. It gets worse if you sit too long. 🤨 I walk our dog every day.although not so far as I did. And the first 20mins is hell!

Thank you for your good wishes. 🙂

[Lafontainepam1 in reply to Tonysue]

The disk problem never bothered me to the point I couldn’t walk, with the stenosis I can only walk about a block. It’s like my life is cut short, although in a few months I will be 69. When I took the 10 mg for 3 Days I felt almost myself, and little pain. But my Rhumy wants me now down to 5mg. I do know how bad Prednisone is for you for to long, so I’m on my way back down, of course the pain was roaring this morning😩

[PMRpro Ambassador in reply to Lafontainepam1]

I don't agree with your rheumy - the whole point is quality of life and constant pain doesn't represent quality. If 5mg leaves you in pain, you might as well not take any. Either you take enough to manage the inflammation or, if you don't, the left-over inflammation builds up again and you are back to the beginning.

There is evidence that long term PMR level pred doses isn't anything like as bad for us as many doctors think:

practicalpainmanagement.com...

I have been at above 8mg for a great deal of my 9 year pred journey. As a result I am still relatively fit and well - no osteoporosis, bone density has barely changed and I don't take bisphosphonates, and my weight is similar to what it was pre-pred. But above all - I feel well.

[Lafontainepam1 in reply to PMRpro]

He said it wouldn’t help with my back pain, I think he is wrong, I do feel my PMR is no longer much of a issue, but the back pain is horrible. It’s either Prednisone or Tylenol 3.

[PMRpro Ambassador in reply to Lafontainepam1]

Surely you are the only person who can judge if it helps YOUR pain? Which is better - more pred or T3?

[Lafontainepam1 in reply to PMRpro]

I know, right!! It was either increasing to 10 for a few days or not moving off my couch!! And that’s not happening😎.

My sister says at our age it’s the quality of life that matters! I have been on 6 mg for over a year, I think my adrenal gland should be functioning by now on its own, I hope!

How long have you been on Prednisone? By the way you are a life saver on this site💕

[PMRpro Ambassador in reply to Lafontainepam1]

I've had PMR for 14 years and counting. I have been on pred nearly 9 years now - I was given a 6 week taper to get me over a trip to the USA. In less than 6 hours after popping 15mg I felt normal and near enough pain-free for the first time in 5 years. The rheumy still disputed it was PMR - but a GP agreed and provided pred. The rest is history.

[Lafontainepam1 in reply to PMRpro]

If anything it gets us out of the pit when we need a boost. Yes I agree it works fast, I could tell the difference pretty quick with upping it by 4 mg.

[PMRpro Ambassador in reply to Lafontainepam1]

If it makes a difference - he is wrong to rule it out.

[Lafontainepam1 in reply to PMRpro]

All he is ever seen was when I was better, to get me down to the lowest mg. They cannot know, for they do not walk in our shoes!

Are you in New Zealand now?

[PMRpro Ambassador in reply to Lafontainepam1]

NZ? No, that's not me, DorsetLady has the NZ connection. I'm in Italy - that is where I live

[Lafontainepam1 in reply to PMRpro]

Oh that’s right, I remember you moving, ( I think), couldn’t remember where. Lovely, my grandparents are from Belgium. Who would of ever thought we could communicate like this 50 years ago😎

[PMRpro Ambassador in reply to Lafontainepam1]

I doubt you remember it as we have lived here for nearly 9 years now, officially resident for 6 years, before I joined this forum. First thing we did post-referendum was get our permanent residency papers. Just in case - but who knows what will happen now!

Never mind 50 years ago - you'd have struggled 15 years ago!

[Lafontainepam1 in reply to PMRpro]

PMR, they say comes from European decent. Since grandparents came from Belgium and the others, Germany, both sides in my family have it. One aunt, a cousin, and my older sister! Prednisone is the only thing that will take care of it. I have no symptoms of it, but the pain in my back is helped by the Prednisone, it drives me crazy trying to figure out which one is bringing me down sometimes.

[PMRpro Ambassador in reply to Lafontainepam1]

It is not quite that PMR comes from European descent - but studies found that having Scandinavian genes increase the likelihood of developing it. But that is just a single factor - and PMR is the product of many and varied factors combining in their assult on the immune system which eventually flips and has a paddy.

[HeronNS in reply to Lafontainepam1]

Have you been getting physiotherapy? I found this:

myhealth.alberta.ca/Health/...

which outlines some of the treatments which can help alleviate pain of spinal stenosis.

[Lafontainepam1 in reply to HeronNS]

Thank you, and yes I am again going to therapy now, and doing my at home stretches, and exercises. They do help, but the pelvic tilt I cannot do because it hurts, could be the disks, or pinches the nerve. Also they do the shock, to tire the nerves I think.

[HeronNS in reply to Lafontainepam1]

Shock?

[Lafontainepam1 in reply to HeronNS]

No, I misused that word, not sure what they call it but when they first turn it on you can feel the jolt. Four patches hooked up by wires to a machine, it’s suppose to get rid of the pain.

[HeronNS in reply to Lafontainepam1]

I can remember having something like that maybe it was before I got the PMR diagnosis? I think it was more like tingling, and they actually let me increase the current as I got used to the sensation. I'd forgotten all about that. More recently I've had dry needling and low intensity light therapy.

[Tonysue in reply to HeronNS]

I think you are talking about a Tens machine. I bought one but couldn’t understand how to use it! 😳

[HeronNS in reply to Lafontainepam1]

Looking at your post again, are your "home exercises" prescribed by a physiotherapist? I only ask because I've never been told to specifically do a pelvic tilt. Years ago I had an episode where I thought I was having a stroke. My left side felt sort of numb. Got all sorts of investigations at Emergency, and was called back to the hospital on Monday (of course this was a weekend) for more, and nothing found. So my doctor said the only thing left was my back, and reminded me that over the years I'd complained of back pain several times. We decided that probably I had to get physio to strengthen the muscles which support the spine. Since then I have faithfully done these exercises. X-rays show there are a number of issues with my spine, including osteoarthritis in lumbar and cervical sections, and other stuff I don't understand. Although I have no fractures I have lost at least two inches, maybe more, in height. I believe it is keeping these muscles strong which has kept me in much better condition than I otherwise would be.

[Lafontainepam1]

Yes she was having me doing the pelvic tilt but it causes pain in my lower back so we stopped that. The core muscles have to be strengthened to hold me up because my back is so messed up😩