I was diagnosed with PMR approx 18 months and for the last 6 weeks have been on 0mg Pred after following a very slow tapering plan ( advice given on this forum). I had a couple of set backs and had to increase the dose and start tapering again . I was very keen to get off the Pred but soon realised it isn’t a race., you have to let ‘your’ body recover at its own pace which is different for everyone.
I had my bloods taken a week ago ESR normal and CRP 18. Over the last 6 weeks at 0 mg I have had 2 episodes of what I think was a flare but was fine after taking a dose of Nurofen. The rheumatologist nurse rang me on Thurs to check how I was and advised me that the flares were likely to be withdrawal symptoms and my adrenal glands adjusting. 🤞 He said each time you reduce the dose your body has to adjust to the new dosage , this may take a few weeks and you may get withdrawal symptoms. I have a hospital appointment with the Rheumatologist consultation tomorrow so we’ll see what he has to say but overall I am feeling so much better and am now trying to build the muscle strength in my arms as they have become weak over the 18 months. I’m really hoping I can now stay off the Pred but I certainly won’t be complacent about it. I’m very aware that it could return but for now I’m enjoying feeling so much better and more like my former self. I’m not sure I would have got through this without the amazing support and advice on this forum where I have learnt so much about the condition, symptoms, side affects etc Thank you all😘.
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Liby57
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Hi Liby, thanks for sharing your experience. You've done so well getting down to 0 Pred after 18 months.We were diagnosed around the same time and I'm stuck at 5/5.5 mg.
I got down to 4.5mg a few months back then had a flare and back up to 7mg to get it under control.
I find it very difficult to distinguish between, Pred withdrawal symptoms and the start of a flare.
How much discomfort were you in during tapering and for how long before it settled down ?
I have learnt from this forum, that getting to 0mg in 18 months is quite an achievement but I am also aware that it could return. 6 weeks on 0mg is early days but for now I am happy with where I am and hopeful. You will also get to 0mg in your own time, remember it isn’t a race and everyone is different.
Like you, I also had difficulty tapering and had to increase my dosage a couple of times and then reduce to the level I had previously been at. The key is definitely to taper VERY slowly especially when you get to the low doses. My GP had suggested reducing by 1mg every few weeks but this didn’t work at all. I opted for 0.5mg decreases i.e. Mon 5mg. Tues 4.5 mg Wed 5mg etc and then 5mg 4.5 mg 4.5 mg 5 mg etc. Slow process but I do think this has helped, itI is less of a shock to the adrenals. My consultant described the adrenals as being like a lazy teenager, if they are allowed to sleep they will and they need to be kick started slowly into action.
While decreasing I did suffer some pain and it is difficult to know whether it is a flare or withdrawal but I tolerated the symptoms for as long as I could bare until it subsided. If it didn’t subside after a few days and sometimes up to a week and the pain was too much I upped Pred by 2mg for a few days and then dropped back again.
I had an appointment at the hospital today with my Rheumatologist but saw Rheumatology Nurse instead. My CRP 18 and ESR normal. She thinks the CRP might have been raised due to me recently having the Booster vaccine because they were done within a week of each other.
She was very pleased with my progress and advised that the Rheumatologist wants me to continue at 0mg and that symptoms of withdrawal are common and can last several months and in some cases up to a year.
We discussed my current symptoms, i do get the occasional twinge in my shoulders but these are minor and nothing that can’t be tolerated and they do appear to be getting less and less. Also my muscles at the moment are quite weak and I do get the occasional headache. She advised that these are common withdrawal side affects and can last several months and in some cases up to year. It takes time for your body to recover and everyone’s recovery time is different. My hair has returned to its pre Pred condition (it did become very thin and very dry and brittle) and my skin looks much better too.
She has requested more blood tests to be taken in a few weeks just as a follow up and has advised Physio, and exercise (swimming, walking and yoga to rebuild my muscle strength and also ensure that I am drinking plenty of fluids, this is something I don’t do very well. Overall she was very happy with where I am.
She is going to discuss my current status with the rheumatologist and will contact me on Thurs with his comments and any further advice.
Hi Liby, your post is really uplifting thank you.I'd be really interested to hear how your recovery progresses over the next year so please keep in touch with us on the forum.
Pred has taken its toll on my hair and muscles too.
Great news that your hair has recovered already and I'm sure your muscles will strengthen over the next few months but do take it easy.
Hello Liby- that’s a very rapid taper and really hope you can keep off the Pred without problems recurring.I managed to join ‘Club Zero’ a couple of months ago but that took 4.5yrs! (Albeit with no flares at all).
I have to say that I was on a nominal dose (1.0-2.0mg/day) for a year or so and it was a bit of a leap of faith to go to zero, so I kept going.
Don’t want to tempt fate but haven’t yet had any adverse reaction. All I would say is that don’t overdo it on the muscle-rebuilding, partly because you might think it’s a flare if start to suffer any pain!
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