I updated my Bio to show my DSNS taper over last 3 months down to zero. Along the way I was unsure about emerging wrist joint swelling and aches (not pain), ache in the bicep of my dominant arm ( not both) and swollen knee joints which I have had in the background for 2 years. No pain. One paracetamol masks all 90%. I have done a lot of gardening and knitting projects over the last few months so felt it was DOMS and overuse of joints. Some weeks back, as a test, I tried an increase of 5mg for a week which eliminated all then a two step step down and back to final taper from 0.5 mg to zero. At zero now for a week and I still have these same joint aches. Feeling well. Just not sure how to proceed. Watch and wait? Any ideas? I have sent an eConsult to my GP for advice too.
Zero Pred zone: I updated my Bio to show my DSNS... - PMRGCAuk
Zero Pred zone
It does seem that you may need a small amount of steroids for a bit longer. I know we are all longing to get of the pred, but the PMR does tend to hang around longer than we want.
You say 5mg eliminated all pain- which is probably what we would expect .. more interesting is what happened in the 2 step down - so can you explain exactly what you did - so how much each time, and how long at each step. Plus was there any return of aches during that?
How long to get from last drop down from 0.5mg to zero? Probably not as long as you may have needed… many find that 0.5mg is still plenty to halt pain, whereas zero isn’t.
However would also ask has the swollen/pain joints issue been addressed at any time…could be RA or another form of inflammatory arthritis - so maybe follow that up.. paracetamol working well may indicate there is something else in the mix.
Re-reading your bio does look like you are pushing the end game with PMR… and that’s never a good idea…as we say on many an occasion the lower the slower… 😊
Thank you for your prompt reply. I did 7 days at 5mg, all OK, 3 days at 3mg, all OK, 3 days at 1mg, some aches noticed but minimal. Then back to 0.5 mg. Then you are right I didn't do the full DSNS taper after that. Too complacent and probably paying for it now. I am also waiting for a reply from my GP about the joints issue. Had to send photos!. 🤔🤔
Probably should have stopped at 1mg….for a while… but too late now. Would agree with PMRpro that going back to 1mg would be a good idea and stay there for a while before you embark on any further reductions…and let us know how you get with the GP.
Yes, thank you, I want to follow up the RA possibility. My daughter in law has RA and I see her problems at first hand.
Hi Queenie! Just re-viewed Dr Sarah Mackie's video, then opened your post. Both inspiring. Am at 12.5 pred & feeling pretty miserable atm with aches, pains, fatigue, plus frustration. Knitting and gardening are my staple indulgences, and like you am experiencing problems with my dominant RHS bicep. Think I'll follow your example re walking and try and rebuild my ability. In fact, I'm off to the co-op 100m away and shall attempt to waddle without a break. All the best! 🙂
Yes, knitting and gardening for me too. I had to stop them earlier in my PMR journey so the pleasure in doing them again has been great. Hard to stop before doing too much. Note to self! I hope your walk was rewarding.
Did it! Thanks.
Saw your reference to Dr Sarah Mackie's video which I wasn't aware of. Can you give a link to it please? She's my consultant and I'd very much like to view it. Thanks
Might be the one on charity website -
pmrgca.org.uk/pmrgcauk-week...
Thank you for flagging up Dr Mackie's videoed talk. Just watched it and found it very informative about things I did not know. You are lucky to have her as your specialist, Pastelsinart, as I understand she does not work privately.
Her explanation on what Pred does to all parts of our bodies was alarming but helpful. I thought Alzheimer's had started because of memory loss, wrinkly skin suddenly etc. but see Pred does that too.
I hope all new members are made aware of this video.
She’s never been mine .. more’s the pity -too far away and probably too young-my GCA started in 2010😳- in remission 8 years
It’s on the charity’s page -and we flag when we can .. as I hope the helpline does as well.
Yes, DL has sent link to A Bit of Both. My brother's response: I don't have time to watch that. How sad, especially as Mackie recommends getting family aware in this way 😔
"I still have these same joint aches"
When did they reappear?
I'd say you need to take a great deal longer over the last 1mg (at least) and you may need a tiny dose ongoing - for the time being at least.
So having tried the +5mg and stepped back would it be sensible to do that again or just go back to 1mg or 1.5 mg? The joint issues reappeared about 1mg
Difficult to say - I'd try the 1mg approach first, if it works, great. If not a few days with 5mg and back to 1mg though you say you had aches there so maybe 2mg and work from there on a VERY slow DSNS taper. And always use the final step with zero as the new dose. You can't cheat PMR - it always bites back if it is still there.
Thank you for yourhelp to sort out my thoughts. No excuse for me going too fast!
My experience was similar to yours… while I was taking steroids all wrists, lower back and hip pains were gone (and of course PMR pain) but as I tapered off the arthritis pain resurfaced. In my case it was just that, pre-existing joint pain and not PMR. Easily mixed up… Good of you to discuss with your doctor before restarting steroids as there are other ways to curb joint discomfort other than via steroids!
I've been trying drop from 1mg to 0.5mg for 5 months now and the PMR just isn't having it! Amazing what a difference such a small dose can make.
Oh, many on here will tell how much difference it makes! Even though some doctors shake their heads in amazement… 🤣😂
Really sympathise. Have been on steroids since 2017. Having been reducing by 0.5mg every 2 months, I am currently down to 1mg pred., and for several months am experiencing severe l/h shoulder pain. At a routine rheumatology appointment a month ago, I was given a steroid injection, which has not alleviated the problem. The rheumy is keen for me to continue decreasing & I expressed concern re adrenal function. He suggested that when reaching the 0.5mg and coming to the end of the 2 month period, I continue for one month with 0.5mg every other day. Feeling quite desperate re the continuing shoulder pain, I subsequently saw a physio' who feels I either have a frozen shoulder, or it is OA. I now await an x-ray. PMR is baffling, and extremely trying. During this 7 year journey, I have had 2 replacement hips, and a replacement knee with the other to follow probably by end of year, or early next. I don't know whether this report will be of any help, and wish you free of pain.
A random and non-expert input from me.... I got down to 0.5mg, very slowly. Tapering took nearly 4 years in all. Still had some aches but decided they were not the almost immobilising ones I remembered from before pred and so after 4 weeks at 0.5, took a deep breath and went for 0.
Now, I got away with it and although I have the occasional stiffness, I've decided that's just something to live with. I'm not recommending the route necessarily but I think it is useful to scale the level of aches in your own mind to decide whether they are the PMR, over exertion or just getting a bit older. 😊
Your predicament is really interesting and relatable and I’m feeling frustrated and pretty hopeless in terms of NHS diagnosis and treatment and decided to give up. I think they just don’t know! I was diagnosed with “atypical” PMR in October 2022 and started on 10 mg Prednisolone which definitely reduced pain in neck and shoulders. As soon as I started reducing, it came back. Long story short, after see sawing within the 10 to zero dosage, they recommended Methotrexate, which I refused. Now have repeat prescription for 1 mg and got myself to 1 mg daily which certainly didn’t eliminate pain, but it was bearable. When I started alternating 0 and 1 mg, pain got worse, so back to 1 mg. My real question is do I even HAVE PMR? as I have fairly severe osteoarthritis in most joints. Wondering if I should pay for a private consult as I appreciate the wrecked NHS just doesn’t have the time or expertise to spend on me.
If you want info on rheumatologists maybe raise new post asking or try our ‘go to’ favourite - Prof Rod Hughes, works out of Chertsey, Surrey
topdoctors.co.uk/doctor/rod...
He likes to see people for first visit, then it's by phone if needed. Best way is to contact his secretary Jody on 020 7031 3403
Would just say whether your PMR is atypical,or not, although that’s usually a phrase well used when it is often very typical
Do you know why you were started at 10mg -it’s below the usual starting dose quoted in guidelines [12.5mg to 25mg]..
Plus a few comment on your situation [personal view only]
A. Too low a starting dose,
B. PMR lasts a lot longer than 2 years, so too fast a taper if you have been to zero on more that one occasion in the timescale, and
C. Had you been reduced sensibly, then there probably would be no need to even consider the introduction of MTX., which when it works is good, but it doesn’t work for everyone.
Plus agree you need a second opinion.
.
Thank you so much, that’s really helpful. I live in the Midlands, so Surrey too far for a face to face. I think the “atypical” was because I had recently finished radiotherapy after chemotherapy for breast cancer and they weren’t sure to what degree residual drugs in my system might be influencing my symptoms. In fact, it was the consultant in radiotherapy who commented that when I said all my neck pain had vanished when taking steroids during chemotherapy and I wondered if this was a coincidence, that it certainly wasn’t a coincidence; this led me to going back to GP, whom I had seen just before the cancer diagnosis, after an osteopath suggested I might have PMR….so many threads! Anyway, many thanks for your input. Not sure I have the energy (or the funds!) to follow up. Might just stay on the 1 mg dose for the time being.
Staying at 1mg sounds like a plan… but don’t let things get away from you. If you do feel they are, then even a small increase might be required.
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