So, not as clear cut as I was hoping in terms of documenting my Prednisolone journey as after week 1 my dose has been halved from 30mg to 15mg by my NHS Rheumatologist so it's all a bit messy at the minute in terms of 'tapering'
Nevertheless, here goes:
Week 2 started on 15mg really well, day one and 2 I felt almost 'cured', I remember mentioning to my brother on the second day at 15mg that I felt almost back to my old self and that I had virtually no pain anywhere. I was getting a full night's sleep with minimal shuffling around to get comfy.
My Prednisolone diary says:
'Woke up, best I've felt since this thing began, minimal pain in shoulders and hips and slight pain in middle finger of right hand only, feel really good'
A few days later though pain had begun to return, possibly, as has been mentioned, because I over did it physically.
By the end of the second week and having been reduced to 15mg over that time, some unwelcome symptoms seem to have returned and new ones presented. In other areas things remain much improved:
Shoulders & Hips: Both are still hugely improved. The advice given by members to create a Prednisolone Diary is absolutely spot on. I simply forget how bad I was and without the diary in front of me I think I would be underestimating how much better I am in these areas currently. I am still about 80% better than I was. I can drive long distances with no pain in my hips, I don't need to stretch off after 30 mins of sitting in a chair. I do have a burning pain in my right hip which has returned after reducing my dose but it's not debilitating or anywhere near as bad.
My shoulders don't need a hot shower to get my arms moving, I'm not waking at 3am in agony and I'm getting a solid 6/7/8 hours sleep in a normal sleeping position.
Hand/s: This is one area of confusion for me. All this started in my shoulders, almost overnight, then hips and then I noticed pain in my middle and index finger of my right hand. 30mg of Prednisolone wiped that out too. Zero pain in hands or fingers.
On 15mg the right hand pain has returned with a vengeance and has become my worst area.....in addition, I have started with pain in my left hand middle finger which I have never really noticed before. My understanding is that PMR doesn't affected the hands, so this does worry me a fair bit.
I am not due to see my Rheumatologist until the end of March but he did say he would be happy to shift that appointment forward if I'm struggling. He's very nice. I am due to stay on 15mg until the 6th of Jan before switching to 12.5mg (3 tablets one day and 2 the next day to even put the dosage).
I'll post my weekly update next week incase anyone finds it useful.
Hope you're all having a lovely Christmas
Paul x
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Paulx222
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My understanding is that PMR doesn't affected the hands, so this does worry me a fair bit.
Not strictly true - and listed under symptoms in this link - along with many other - and you find plenty of posts about subject - maybe search on ‘PMR and hands’ or ‘PMR and carpel tunnel ‘
On your reduction to 12.5mg looks as if you are going to take 15mg one day/10mg the next etc…. To be honest not the easiest way……. Better to try a taper that takes about a month and you introduce 12.5mg as the new dose and increase the number of days you take it whilst reducing the days you take 15mg until you get to all days on lower dose.
Such a minefield this, it's amazing to have you, PMR Pro, Sheff Jane and everyone else on hand to help us navigate a way through......I am so very grateful.
I'm going to have a good read through the links this afternoon.
Such a minefield this, it's amazing to have you, PMR Pro, Sheff Jane and everyone else on hand to help us navigate a way through......I am so very grateful.
I'm going to have a good read through the links this afternoon.
Just got back from son’s -you may or may not be aware of kerfuffle I had with TV last week.. but purchased a new all singing, all dancing one Christmas Eve [under his supervision]😳 - which he had to play with at his - of course.
Anyway all set up at home now… I just have find my way around it…and all associated apps etc… that could well be my minefield 🤨… but we’ll see…
"My understanding is that PMR doesn't affected the hands"
Yes it does - it causes tenosynovitis and the finger effects can be really painful.
You are struggling and that is at 15mg, you need to speak to the rheumy at least. And get a pillcutter from the chemst or the Big A. Don't alternate doses, your body will thank you
Really grateful for the reply .....last couple of day or so my fingers have been the worst bit!! Just like you say.....super painful.
Co-codamol getting me nowhere! I think the drop has affected me but I'm going to see how things go until the 6th or until I get extremely grumpy....whichever comes first !
Hope you've had a lovely Christmas with the family !
The only flair I had (yes, I've been very lucky) was going from 8 to 7mg. It affected my hands first and, as you say, was bl--dy painful but a few days under sick-day rules overcame the problem and it hasn't reoccurred. Interestingly perhaps, when I first succumbed to PMR it didn't affect my hands at all.
I was recently diagnosed with PMR by a board certified rheumatologist and some of my worst symptoms are in my forearms and hands. My doctor did not find that surprising so I assume it can be part of PMR.
Yes......this group is such an inspirational place tbh!
I'm glad I followed the advice.....helps me put things in perspective
Hope you're well.
My left hand middle finger is probably my primary hot-spot. It swells and shrinks with inflammation to such an extent that I am keeping a twice-daily record of its circumference on graph paper! There is no current injury to cause the swelling. I broke it badly over 25 years ago and it seems as though PMR took advantage of the old injury to get a toehold. Here is the photo that I sent my rheumatologist...he had me come in and confirmed with a CRP that I was having a relapse...which is when I started on oral Prednisolone. Apologies for the rather gruesome photo... 24 hours after I started on Prednisolone it had shrunk to a more-or-less normal size again.
Finger swollen with inflammation but shrunk with steroids
I have terrible problems with my hands, I wake up and my fingers are clenched to my palms and it's hellish painful straightening them and it takes hours. Then they swell and pulsate. On the days I don't get that my hands cramp and my fingers feel like they have elastic bands round them stopping the flow and are about to explode. After consultations and tests with my neurologist it turns out I have fibromyalgia too. Such joy - not.
hands and fingers are where my PMR initially came out. Hands swelled up so much I could barely move my fingers. For the first few days I alternated one hand and then the other wrapped in a tea towel filled with crushed ice. They did go down eventually, but then the inflammation flared up elsewhere. Feet, shoulders, hips and back. Not all at the same time, thankfully, but it was a lottery to see where it was going to pop up next. Since being on Pred the pain has almost gone, but it lets me know if I’ve overdone something. Good luck on your journey.
What you are describing is not typical of PMR. It IS typical of a form of inflammatory arthritis called palindromic rheumatism - it manifests for a short time in one place, it can be from hours to days or weeks, disappears and reappears an indeterminate time later in another place. There are a couple of people on the forum with it who were initially diagnosed with PMR - mainly because there are no other forums that are relevant and pred does a good job of managing the symptoms when they appear.
Thank you. I’ll have a read of these articles. Before my visit to Dr Bevan, GPs were considering PMR or Rheumatoid Arthritis. Dr Bevan came down on the side of PMR. Its a bit worrying if something else comes into the picture.
It is the coming and going aspect that makes me wonder, and the moving around. Neither are seen in PMR - atypical doesn't cover that!! Very often what they call atypical is common enough from our point of view but moving around - no, that is usually something else.
Those are interesting articles and the symptoms do seem familiar. I have to say that after the initial swelling and inflammation in the hands and feet disappeared, I haven’t had that back again, but I am still getting ache and stiffness in the neck and pains in the hips and shoulders at times. Whatever it is also seems to aggravate the trochanteric bursitis that I had beforehand. Before going on Pred, I had a lot of fatigue as well. Diagnosis does seem to be a bit “straw in the wind” with these conditions.
Mmmm - but the rest does sound very PMR-ish as well so you still need to identify the lowest dose that manages that and keeps them away if it is low enough. Are the symptoms appearing after you have done too much? If the attacks are well spaced, then often what they do is just used short courses of pred when they appear - often a week or so. But if they are more often or longer, they need to use something like MTX to suppress the disease activity. However - that requires acknowledging this may not be PMR.
Haven’t had the swollen hands and feet since it first appeared, but the rest seem to come if I’ve overdone things. Went for a walk on Wednesday to get some fresh air after all the rain and did a bit steeper hill than anticipated. After that, hips ached. Have also had more neck aches lately, but not all the time. Am trying to keep a note of when things occur so that I can assess whether there is a pattern.
Started on 15mg in September, and have been dropping every 4 weeks as per rheumatologist. Have now got another week on 9mg. Am wondering whether to try 8.5mg next instead of 1mg. So far, when I’ve dropped 1mg, I have about 2 weeks settling down with odd spells of nausea. Then, it seems to settle down for the next two weeks, but I thought it might be wise to start slowing down from now.
Thanks...it is weird isn't it? Although the inflammation is gone from my finger, I still have very little use of it, it is locked in a somewhat obscene gesture...! I am pushing to see a hand specialist to get it sorted out...
It started with my hands, my right hand in particular. Mine was more tendons than joints.. no swelling but it was like someone took all the tendons in my body and tied a huge knot in my back. I couldn't close my right hand for over a year and 12 hours after taking my first pred, I could, along with move my head, jaw, arms, shoulders, hips and knees. It was truly a miracle drug.
I started on 20mg, dropped to 15 after a month and am now on 12.5. halving the dose overnight seems to be asking for trouble, as everything I have heard says slowly, slowly is the way. If it flares go back up one level until it settles and slowly slowly try again. Also my rheumy prescribed 2.5mg tablets for the 12.5 dose so they do make them. The other top tip I got was don't forget the pred takes away the worst symptoms but the underlying disease is still there so be gentle with yourself. If you need a nap, take one. Pace yourself, or you will end up paying the next day.. you will work out your limits pretty quickly. Good luck and keep asking questions and tweaking things. No one knows as much as those who have lived with this!
Hi Paulx222! Your post has made me keep a pred diary from now on. Diagnosed GCAPMR beginning Oct. 40mg 8 weeks, 30 6 weeks, then reduced to 20 from today "for at least 6 weeks" said rheumy yesterday. I have had comprehensive side effects from the wretched things, the worst being weak and sometimes painful back and intercostal muscles for which I take painkillers. All the best on your journey!
I've really found the diary helpful.....more in a way to show how I've improved from when I was at my absolute worst....
I think it's really been a huge help because I'm quite impatient and can't seem to accept that this is going to be quite a journey. To be this much improved by now is really good and I need to accept that this is going to be for the long haul rather than a quick fix
Dropping to half the dose after one week seems lime a lot. 30 is higher than most starting doses but to me it sounds like you need more than 15 and need to stay there at least a month before reducing.
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