I thought I’d give you an update on where I am on my PMR journey. I stopped taking Prednisolone in Nov and am currently still at 0 mg. When I first got to 0mg I had a a couple of minor flares which disappeared with a dose of Ibuprofen. I saw the consultant on Thursday and my Synacthen results were normal, my ESR/CRP normal. I do still have muscle weakness and have signs of osteopenia which he believes are both a result of the steroids. The consultant told me that withdrawal symptoms can last quite a long time and suggested that however long on I was on Pred it can take the same length of time to recover from withdrawal. I was just wondering if anyone else has been told this or does anyone have experience of this? I did stop Pred in Nov and I do feel that I am slowly regaining strength and feel a lot better. I am able to do more exercise and swimming again and have resumed my regular 5k walks. My hair has grown back much thicker and my hairdresser has notice a considerable difference in the condition of my hair. My only hope is that I don’t have a relapse but so far so good.
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Liby57
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It is certainly the received wisdom that it takes time - but everyone I know who has got to zero pred says it has taken them about a year, sometimes more, to feel back to normal. Though of course - what is normal? Everyone is considerably older by then as well.
Normal for me is not being in pain or waking up stiff in the morning. My hair not dropping out, being able to do things I was able to do before PMR or at least some of it. For over 18 months everything I did before just stopped overnight.
What a wonderful uplifting post to read, I’m extremely pleased for you. I can’t take Pred, I’m just on methotrexate but oh to not have the pain and stiffness must be fantastic. Like you, everything for me stopped overnight, I long to be able to swim and walk properly. Please keep us updated with your journey back to‘normal’ because that’s what I hope for. 😊
Your body does take time to return to normal - in all aspects.
Not sure your consultant is correct in saying that -
a. it takes as long to recover as it did the time you were on steroids, I was on for 4.5 years and it certainly didn't take that long to get back to normality - (well my normality). Probably 6-9 months all told.
b. not so much "withdrawal symptoms" - if you have reduced slowly and sensibly - as muscles/organ recovering from steroid effects. Not exactly the same thing, but I guess he thought you would understand his analogy.
Plus you must remember that a number of years may have passed since your PMR came on, so your body would have changed anyway.
Congrats! I am hoping this will be the year I slowly wean off. I am in my 5th year. I thought prednisone results in more hair and methotextrate causes you to lose hair. I have always had fine hair so not much difference.
Since methotextrate increases risk of covid, I have stopped. I need to get my 4th dose of the vaccine, and then I will go back on it.
I agree, especially about ibuprofen taking care of aches and pains. Maybe the A&P from pushing the use of weakened muscles, but not due to any recurrence of PMR (ie Flare). Since I’m decreasing by 0.25mg since being at 3 mg/day and won’t reach zero until at least September I’m hoping, at from the Adrenal gland recovery perspective, that I won’t have to experience that aspect. My Rheumy is now on board with what I’m doing, but that could change on a whim, but now I have enough Pred on hand plus a refill that I can tell him to pound sand if he tells me to quicken my reduction.
Look under FAQs to the right of your screen. The sub heading is Bone Health and Osteoporosis it was written by Heron and I found it particularly helpful when she first posted it. It talks about how you can improve your bone density scores without drugs.
Forgot to say - no it doesn't take as long as you were on pred to recover - all depends what aspect you are looking at and how you go about it. You are undertaking a fitness regimen because you can - not everyone is still able to do so.
Had you had a dexascan before or soon after starting pred? If not, you can't say the osteopenia is due to pred. I was already osteopeneic 2 months or so after starting pred - but my bone density has hardly changed in the 12 years since despite pred. Almost everyone on the forum will have a degree of osteopenia - our maximum bone density is at about 30, after that it reduces slowly in everyone, faster in others and the t-score relates your bone density to the average values for 30 year olds.
I was on Pred for PMR for about 2.5 years reaching zero in April 2020. I would say that I still had an element of 'discomfort' at that point but I was also aware that my body was that much older and had been fighting off a sustained attack for that time so it was not surprising that it wasn't quite as forgiving as it used to be.
By late February 2021, (so nearly a year later) at 63 years old, I was working with my twin brother and realised that we both had the same level of fitness, the same aches and pains in the morning, the same 'groan' as we got up from a chair, etc and that my PMR had gone, I was just getting older. Touch wood, it hasn't re-surfaced and I feel fine now (apart from covid this week!)
That’s great news. There is an element of getting and accepting the expected aches and pains that go with it but there is a real difference between aging aches and pains and that of PMR. Wishing you all best🙂
Thank you very much for your useful update. Next week I start alternating 1 mg and 2 mg before going to 1 mg pred/day. I really hope to reach 0 mg somewhere in summer. I am still on 4mg/day DHEA to give me energy for exercising, walking and cycling. Also DHEA will be decreased again in the next months.
Isn’t it interesting? Some doctors or people will prescribe and/or consume chemicals with little to no research supporting its supposed benefit, yet fight like dogs not to receive a vaccine that was studied globally and consistently to be effective claiming it having a EUA instead of full authorization that included long-term effects meant it wasn’t safe!
Don’t know about the UK but in the USA we have a significant number that fit in that category.☹️
My GP put me on DHEA because I was no more able to ride my bike uphill. I was still at 6 mg pred/day at that moment. My rheumy was not against it and added it in my medical file. It really helped me when doing physical efforts. I stayed on it for about 6 months, then it was reduce to 4 mg/day when my pred was at 2mg/day . I am still cycling without problems. My rheumy sees me every 3 months and all medication is recorded in the medical file. They are also keen to see what the effects are. Anyway no side effects.
I am alternating between 4.5 and 5mg/day.Feel very tired and issues with anxiety and depression. PLUS the other aches and pains.I am in no rush to get off the stuff quickly.I do not want to go back to square one again.I was unable to walk because of muscle weakness.I have had a heart attack an caused glaucoma. I am very appreciative that my government provides me with some home help .I don't know how I would manage without some support.
Best news I have heard so far. Try to avoid stress
Can’t wait to restore physical strength and endurance. I am a big guy but very low body fat. Humbling experience having to have my tiny wife open drinks for me.
Congratulations Liby57!! I’m now on 3 mg of prednisone and hope to get off by the summer. I’ve been taking 100 mg of over the counter DHEA and have found it helps my depression.
I started May 2020 and reached 0mg Nov 2021. I had a push back when I got to low dose and had to increase for a few weeks and then very slowly reduce to 0mg
I was on Pred for 19 months and had awful side affects whilst on it. Not everyone suffers the same affects or the severity of side affects and some can tolerate the side affects better than others. I really sympathise with those who struggle getting off it, but it isn’t a race, you need to work with your body and at a pace that suits you. I realise I am lucky to be where I am. You will get there too. 🙂
I was on Pred for 4 & half years, certainly didn’t take that long for adrenals to return to full working order -about 6-9 months max as stated above. Not everyone reacts the same…
Dear Liby 57( is that your age?) I am so happy for you that you have managed to go down to zero on your pred.
I have been 2 years on prednisolone and managed to reduce very slowly (half a milligram per month) and got to zero in February this year . But even on 1 mg or 2mg the pain in my groin and knees was really bad again and also fatigue set in to the extent that even a relatively mild walk left me exhausted .
My ESR was high again ( 29) and I knew I wasn’t well.
I had to go Back on 3mg a day following the advice of a rheumatologist friend of my daughter and I feel so much better now . Also depression was beginning to set in because of the pain…
But I still hope I can reduce further .
Pred is great because it lifts you up and reduces the pain, but I had put on 10 kg with it . And all of it around my middle.
Maybe one day I will get back to zero .
All best wishes to you ! Well done and thank you for sharing .
Just out of curiosity how long had you been on the prednisolone?
Congratulations, great news and doubly good that you have no synacthen related issues. I found I felt much better after about 9-months off pred. Though it is difficult to differentiate as I failed the synacthen test miserable (three times now) and I'm currently on my 3rd tranche of Hydrocortiose tablets (low dose) to try to kick start the adrenals..
So pleased to read your good news story. Im on my way down from 5mg to 2.5mg every other day right now. Your story and detailed info and the replies gives me strength and hope. Thank you for sharing.
After being almost immobile, I was on pred for just three years. I stopped last July. I really can't say that my health and capabilities are in any way less than what I recall prior to PMR. I think I feel better, probably because I have stuck with the dietary changes I have learned here to reduce inflammation. I managed to lose about 1.5 stone during pred fear motivated low carb diet, and I have retained that weight loss. All and all, for me, and perhaps me only, I think my illness has proven to be a blessing.
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