I stopped Prednisolone in November and felt OK, some stiffness in legs but no pain. And yoga and weekly exercise class has helped. Probably like most I felt much better when we got those odd spring days. And last week cut down a couple of bushes in the garden and went to ballet class which I think was over doing things.
Last few days felt tired and low and had a bout of what felt like hypoglycemia. Taking things more gently at the moment. Has anyone stopped pred and managed things. I am a bit of a worrier so would appreciate some reassurance .
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I think we get the impression along the way that getting to zero is the golden ticket to normal life. It’s silly when one looks at it really because we are recovering from a systemic illness, deconditioning and likely low adrenal function. The latter took me 18 months to get back to normal everyday function. There may still be some autoimmune activity that is asymptomatic pootling along too.
An inability to put out enough cortisol when you need it for a big push can make one feel a bad dose of the Weak Wobblies. I found it can also happen after a string of busy days or activities where one is trying to get one’s body up to scratch.
So yes, we have had enough of hearing about being patient only to find that we have to find a whole lot more!
Swear words are a good idea! And I would say as much stress reduction as possible--There are major links between autoimmune conditions and stress. That is my focus right now in addition to medication. so I hope I have enough in my toolkit for when, hopefully, I am at the end of Pred. I had several months of extreme stress just before PMR hit, and there is no doubt a connection given the timing.
Hi Paulagci, yes I agree feeling tired and low can get us into a cycle of stress. When I see the start of bright spring days I find that lifting. My garden is quite small but is nice to see birds and spring flowers. Sometimes I wish i lived closer to countryside. Do you have much space around you?
I have a small balcony, but it faces east so I get a lot of light and have it filled with plants. It's very cheerful! I just recently moved to Los Angeles so am enjoying the chance to have succulents, which wouldn't do well in Oregon where I used to live. The landscape here does not have much greenery since it is desert country, but I am just a few minutes from the ocean.
Like SnazzyD I’ve been off Pred for long time (over 7 years) so would say usual aches should be expected -and your adrenal glands take time (up to 12 months after Pred) to be at full function.
Would guess a bit too much in one go (garden&ballet) has overworked adrenals a tad.
If you remember to pace yourself to a certain degree for next few months, you’ll be fine.
I think getting to zero can present physiological issues to a greater or lesser extent. Elation at getting there, but will it last after all this time?
In my case it took three goes to get to zero after seven and three quarter years, so when I finally made it I was ultra conscious of any symptoms trying to creep back in. It was much more any physical niggles rather than adrenals, which have taken about a year on zero to settle down again.
As I was nearly eight years older from when I started on pred, I had to keep reminding myself that I would certainly have experienced some aches anyway. At first, being on zero, I could hardly believe it was true, but now, after sixteen months at zero, I do feel I can finally believe I may be in recession.
Others have different experiences, but I would always counsel patience, and not overdoing things. After pmr, I don’t think any of us is 100% the same as before.
Yes, perhaps it's" keep calm l and carry on but a bit differently". I think the experience of PMR/GCA changes us- perhaps physically and also emotionally the positive side is being able to connect with others in this group.
Yes, I am aware of that, that if I get to zero, I am bound to be hypervigilant about any possible symptoms and that doctors see this as hypochondria often, especially in women. But: one step at a time!
Getting to zero is the start of the next stage, not the end of it all! It can take up to a year for adrenal function to settle down and be reliable so it pays to still take things easy and not overdo things! And to be fair - we are a bit older!!!
No - only time, taking it easy and not getting too stressed, and allow it to recover in its own time. There are no medications that will help how you feel AND allow them to continue to recover, it is one or the other. It is possible they won't manage to recover fully as you age so do consider that.
Hi HarmonyGranny, I think diet is essential : colourful frit and veg.I also have yogart and milled linseeds and fruit. Protein with meals helps to balance my blood sugar. I try to avoid excess carbs. However I do have to have chocolate sometimes! Also I do basic stir frys and have Miso in the sauce and fermented garlic from the farm delivery service as it helps with maintaining healthy gut bacteria apparently- that's ongoing. And I think when adrenal fatigue happens its important to rest , watch some happy films and connect with others who understand as positive and reassuring thinking can help greatly to calm us down, I think my next project is to cook some healthy meals and freeze a few individual portions for days when I might not feel up to cooking.
I think it's very important to remember to treat ourselves in any way we can -- we are going through a condition that restricts us in many ways and brings on additional stress and anxiety. It's a good time to remember to take care of ourselves psychologically as well as physically.
I agree life needs some joy! The other day I was also thinking of the Danish word "hygge" feeling cosy at home when its gloomy outside. I have still got some sparkly lights over the fireplace.
I am on that journey as we speak, Pred free for 6 weeks now. I agree with all the above answers especially those who remind us that aches and pains are (perhaps a forgotten) part of the journey! Just back from three weeks of skiing and soon off for another two weeks but taking it much easier and giving myself lots of time to recover… fingers crossed, wish you well, patience and resilience!
Thanks! Yes the skiing is a blessing and I am very grateful!! Not the 7 plus hours of times gone by, sometimes it’s 4 hours other days just a couple of hours, but it’s just wonderful being out there drug free and enjoying nature and sports. Mind you it helps it was in the Rockies where they have no issues of lack of snow!! Off to Austria now and hoping mother nature gives us a good break!!
Currently a tad damp and warm I fear! I hope you are going high! Here in South Tirol I can't really see the mountain the other side of the village for cloud, fog and possibly drizzle!! Have to be at 2000m for snow. It was fantastic 2 or 3 weeks ago.
Where we go is ‘less Mediterranean’ than the Dolomites and/or southern Alps and yes, there is a good choice of different resorts at different heights we can easily drive to. Still it’s very sad to see the skiing industry in the Alps slowly pushing higher and higher, more snow cannons, shorter seasons… the highest resorts will become very expensive and as for lower areas, who knows, they might need to re-invent themselves into something different. But over the years we’ve skied in just about every nook and cranny in the Alps and never ever even thought about slush or high temps…
There is hope… (but possibly not in our life time!?). With Greenland and its glaciers progressively melting the sea currents that keep Britain warm (er) and the continent less cold, will weaken and that protection will erode and possibly collapse at some point plunging us and the Continent to much lower winter temperatures while the rest of the world continues warming. Nuts, but that’s the science of an increasingly warm world - it affects different parts of the world differently!
The way things are going, the tipping point may be sooner rather than later. However - when that happens, the entire world we live in will be turned on its head, food production will have massive problems and food prices will spiral even further. In the UK, houses won't cope with the changes. Many people will no longer be able to AFFORD luxury holidays like skiing. It will be the last thing on their mind!!
My hope is that those who are enlightened enough about preserving and healing the planet will out number those with their heads in the sand. I have been watching a TV prog- the Wilderness with Simon Reeve and last night Sue Perkins in Alaska.
Where are you going in Austria? I was in Ischgl in January after a 5 year break. Loved it so much we're off to Obergurgl in March. Felt really well in the fresh clean air......heaven. Loads of snow too and very cold.
Ischgl is wonderful and normally snow safe, as it’s quite high. We’ve been many times and also like Soelden as well, just down the valley from Obergurgle… Also Hinterglem and Saalbach and so many others. But loads of gems in the Italian Dolomites as well, although it gets very crowded and many resorts are not very high. But the food (and wine)… unmatched!!
We always drive to Austria and tend to stay close to Zauchensee, Schladming, Flachau, not too far from Obertauern. Loads of wonderful ski areas in the Salzburgerwelt, big and small, to suit all tastes and conditions!
As others have said, being off pred is/was a huge relief, but it's only the start of the next phase which is to take it slowly and be kind to yourself. Don't assume that you can just do everything you once did before. It takes time, and of course we're all that bit older now too. I've been off pred since May 2022, and I'm only just starting to feel stronger.....only the other day i discovered I can actually kneel properly (without it hurting) for the first time since my PMR struck, and it felt good! I am finding doing some stretching exercises (and walking each day) are helping enormously. Good luck!!
Its amazing when things start to improve like being able to bend the knees etc isn't it. I go to a local yoga class and when I first joined I was concerned that I might get down onto the mat and not be able to get up again.! I am slow getting up but the stretching etc is great for the muscles and its very soothing for the mind. I have written a note to self in my journal to remember that just because I have more energy on certain days I still need to remember to pace myself. I think starting the day with a breakfast with protein like eggs is also helpful.
So glad I found this group! Good luck Lonsdalelass!
I had a new hip 3 months ago and have also managed to get to 1mg since the op. I’ve been amazed at how much better I feel and my enthusiasm for the garden has returned!! I am taking it all very slowly but delighted to feel my old self returning. I will stay on 1 mg for 1 month and then try none or maybe half. Does that sound like a plan? 7 years is long enough!!!!!!
I went from 1 then a half and tried a quarter but just got crumbs so then went to 0. I took it gently and only reduced when I was feeling OK. Good luck!
Hi Animallover, I was very interested to read your post and all the replies.I'm currently on 1/2 mg daily and hoping to get down to zero in the next couple of months. I'm also a bit of a worrier and am hypersensitive to any aches pains fearing the dreaded flare. My main concern at the moment is some low level headaches. Not unlike sinus headache although sinuses seem fine. They do clear if I take, paracetamol or ibuprofen. No other GCA type symptoms. Have you or any of our friends on the forum experienced similar?
I'm wondering if they could caused by stuttering adrenals / pred withdrawal.
Hi CarolF1312, I was on Pred due to PMR but notice when the weather is very overcast before a storm I feel tired and wonder if its humidity/ electrical changes. I also get visual disturbance which people get with migraine but its minus the headache- only lasts a few minutes. This is something I have noticed for many years. Do you notice any affects coincide with gloomy weather? Also I guess when we get stressed and tense in the neck muscles that can cause headaches. Regarding the aches and pains maybe sometimes that is down to DOMS - the delayed onset muscular soreness. I do yoga - the stretching helps and then I take things gently the next day for any stiffness to ease.
I think we all have much in common and also vary in certain ways. My last CRP was 10 and I was feeling OK. I notice some people have lower CRP levels or do not show raised CRP and have pain.
Thanks for your reply.I was wondering if it could be related to the weather but can't identify any pattern. I can be fine for a few days, think it's sorted itself out then back it comes.
As I said previously, headache is not as bad as migraine but bad enough to need a painkiller.
Any sort of headache makes me worry these days. Never gave them a second thought before PMR struck.
I don't have any other PMR stiffness or pain. Maybe some DOMS if I do too much exercise.
I have a follow up phone appointment with Rheumi in May and will probably get some more blood tests. He's a bit moody and helpful sometimes but not always. Are you due a further appointment / blood tests?
If you started another post you might get others to compare notes on GCA and the ambassadors might see it.🌺
It isn't an entirely safe assumption, but if painkillers help, it does reduce the likelihood of it being GCA. It doesn't SOUND GCA-ish, the response to painkillers and being so intermittent would be very unusual.
If you want more responses, it needs to be a new thread as only the person you reply to, DL and I are likely to see it as most people just don't bother to read existing replies on a thread.
Thanks PMRpro. I was hoping for a reply from you or DL. Always appreciate your informed views.It is a worry. However, I have no confidence that a visit to the GP (if I could get an appt.) would be worthwhile.
I'll wait and see how I go and maybe start a new thread.
Have you tried the Australian chewing gum screener? Chew gum at the rate of 1 chew per second for 2 to 3 minutes - if you develop claudication in your jaw, either excessive fatigue or actual pain that resolves when you stop chewing, that is a red flag for GCA,
It is a pukka concept - tried and tested by a group in Sydney I think
Bit late to this -as away at son’s this weekend -but agree with PMRpro re chewing gum test initially . That is a good indication of GCA -and then take it from there.
Yes I get similar sensations to yours. Dull aches in the face & neck area but nothing more - thank goodness. Currently reducing from 7 to 6.5mg for the 2nd time - very slowly!
I myself only stopped Pred one week ago, so really early days for me. One thing I try to remember is to carry an emergency supply of steroids, just in case. (I ended up in hospital in 2020 and although I was treated with ABs, I almost immediately recovered when my dose of Pred was increased from 12.5mg to 25mg.)
Thank you . Yes I carry a card, a medic alert bracelet, water and Pred. Its like belonging to a club. Good luck and we need to remember to pace ourselves.
I've been off just about 1 yr and honestly it's been a tough year. For myself I was on steroids 9 yrs and we forget we're 9 yrs older.
I'm still trying to get my energy back but truthfully I've been in more pain off than on.
Instead of naturally getting older and 1 yr you start aches here then next yr or later something else. For me everything came at once. Bursitis of hip and 3 things wrong in my good hand. 2 operations this year and injection did not work on the Bursitis.
I was active and I've really had to pace more. Honestly I've thought of going back on a low dose because it hid these ailments but really need to fix them. It just is taking time unfortunately 🥶.
We are all different and I prayed I'd be fine but not. More patient's.
Hip or trochanteric bursitis can be part of PMR and although there are more direct treatments that work well, if PMR is "feeding" it, you struggle get rid of it.
I've actually been wondering if pmr is back however if I take a tramadol the pain is gone.Would this not mean that it's not pmr since a strong pain killer works?
If tramadol deals with the pain it is maybe less likely to be PMR I suppose, But tramadol isn;t a good long term approach either, Do other painkillers help?
When it 1st arrived was 2mos off prednisone and I was diving. By second dive I could barely walk and it brought me to my knees.
I thought it was sciatica and from April to June my chiropractor and massage therapist was treating it as such. Made it worse. Wasn't till I saw rhumitologist he then said trochanteric bursitis.
He finally after a year gave me a shot, worked for 1 day and pain is back. I will admit as well as other specialist have agreed he's not the best at needle placement.
As for OA in hands we've tried 2 drugs and I'm sick as a dog. He wants to try methotrexate which I've resisted because of the side effects etc.
Maybe it's Inflammatory and prednisone kept it at bay.
I hate to say it but I'd rather be on 2mg prednisone than methotrexate.
My 1st rhumitologist thought I'd never get off and my cousin has been told she's a lifer😂.
He wants methotrexate for my hands which he and I know I'll be sick on. Then he'll try humaris or one like it.If you and I think pmr returning then prednisone will fix both.
Or should I get my bursitis fixed vs masked by prednisone
So much is wrong with the hands. 2 fingers swollen and they initially swelled when trigger fingers happened. So we couldn't decide whether OA or Inflammatory or RA.
So operation to fix trigger fingers in which we also found dupuytren's which caused me excruciating pain.
Now that it's healed and still having problems with swelling and making a fist we're thinking Inflammatory or RA.
However I'm starting to feel the possibility of PMR returning because after the shot in hip my hand was better. As well after gallbladder surgery the pain med took away the pain and some Inflammation but only 1 day.
Very confusing. The pain meds also took away my bursitis pain for the whole time.
I'd just like to be pain free, lol that's why I'm thinking low dose prednisone.
I still have trochanteric bursitis in my ‘good’ hip, it has been worse since hip replacement but that is probably because it has been taking the strain!! I’ve just this week had a steroids jab which has helped. Nevertheless, I am feeling generally better than before Christmas and actually look forward to gardening which I haven’t done since diagnosis of PMR 7years ago and intend to very carefully reduce the last milligram slowly!!!!
Very probably! I have had extracorporeal shock wave etherapy here - not an instant result, takes 3 sessions 2-3 weeks apart, But it does seem to work - until it comes back.
I'm a 69 year old male and just got off of pred after 5-years. Last pill was October 15. I felt in the beginning there was a dip in how I felt, but I am starting to feel like my body has adjusted. But joint stuff that hurt before is probably a little worse than pre-GCA-PMR. Good luck.
Hi, that's good news that you are starting to feel like your body has adjusted. And I bet Lucy keeps an eye on you. Fingers crossed we both continue to improve.👍
I had very similar symptoms coming off a full year of Prednisone. My doctor shared with me that prednisone raises blood sugar over time so feeling hypoglycemic checks out. The blood test he gave me confirmed that (I’m not diabetic but it did raise my blood sugar and made me a bit insulin resistant). I was very tired for a long time so I definitely relate to that. It should get better and better for you now that you’re off of it. Make sure you’re supplementing anything you may be deficient in. A good nutritionist can help with that.
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