I’m a month behind with this but thought I would post my yearly update on my “joys and delights” of suffering from PMR.
I finished year three at the end of June and I have to be honest and say that from the PMR point of view it has all gone in a fairly straight forward fashion. I have had no major flares or disasters and am still not having any problems with taking Pred. I have taken my little white pills, which gave me my life back, steadily, no rushing and reduced in 0.5mg at a time over a planned five-week cycle on a modified DL taper. It is not a taper set-in stone and if I do not feel its right to reduce, I stay where I am until things seem right. On 1.5mg at the moment. Still not convinced that my Adrenals have totally returned from their holiday break so may well stay at this dose for a few weeks/months. No rush or pressure from my Doc who is happy to leave these things up to me.
Not been a totally fraught free year though, in the last few months I have been on the fast track for a skin cancer scare, fortunately turned out OK, I’ve had a full MRI due to the pain I was getting in my hips, leg and buttocks and this turned out some fairly uncomfortable results which will be ongoing with Sciatica and possibly other outcomes, fortunately at the moment it only gets me if I do something to upset it, but when I do the pain is completely debilitating. I’ve also had a heart scan as my heartbeat was a tad odd. The scan was inconclusive and as things seem ok at the moment the doc and I have agreed to ignore it until something else does or doesn’t happen. On my Docs suggestion I have also upgraded my smart watch which now gives me continual BP and heartbeat as well as an ecg if I ask it. Plus, all the other things these watches do. Seems to be pretty accurate as well.
The thing that is giving me the most grief at the moment is my Carpal Tunnel Syndrome (CTS) which is really deciding to be difficult, pain, trigger finger and loss of feeling in fingers. I have done a bit of experimenting and it disappears at 10mg and pretty much so at 7mg and although the Doc has left this decision to me, when I get back from holiday in a couple of weeks, I’m going to make an appointment to chat through all the possible alternatives, surgery, local injection, Pred. I have no problem with going up to 10mg if it sorts the problem, but I do want to make sure he understands that I will be on Pred for another couple of years or so if we go down that route – probably preferable to me than surgery.
So, all in all it’s not been a bad year PMR seemingly being very well behaved (could easily change though!!!) a few general problems which, I guess are to be expected as we get older. Doctors and the NHS here have been brilliant with everything being put in place very quickly and efficiently.
Once again, my thanks to everyone on this Forum. Amazing dedication/knowledge/support from PMRpro and DL. Also, to all the contributors who provide all sorts of amazing/useful/wonderful information and help to keep us all sane.
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Bcol
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As I already had a Samsung phone, I purchased a Samsung Galaxy Classic 4 Smartwatch from John Lewis 18 months ago. It has proved to be very useful, especially recording AF incident ECGs which I can print and take to my GP. Smartwatches with this sort of feature are not cheap!
Same setup as mine. Expensive, cheaper than the Apple ones though, but very useful. Users have to remember, as you and I do that they are not a replacement for the Doc. but a very useful tool for throwing up possible problems which can then be taken to the Doctors for further advice/help.
Hello Bcol, I have been meaning to send you a Personal Message, in reply to yours to me, for some time, however I have been having a rough time recently and haven't been in touch with anyone on the site. I owe others responses too.
Just briefly, because tis hard for me to type nowadays, the CTS which I've mentioned before and which has been coming on for some time, is causing me major probs at the moment. I saw another rheumy about this and steroids were put up from 8.5to 10 and then 12.5mg. This has made no difference to the pain in my hands/wrists/arms and I know this is not PMR pain, so wish I hadn't upped the steroids now.
As I'm with Benenden, I have recently had an appt with a neurologist at The Nuffield who agrees with my Physicians Associate that:
'I feel she would benefit from review with a neurologist and consideration of cervical spine MRI and nerve conduction studies to confirm carpal tunnel syndrome'.
The neurologist said he agreed with my Doctor, so that's one up for Physicians Associates' I thought!
I now have the MRI booked for next Tuesday at The Nuffield courtesy of Benenden. Meanwhile I am having many sleepless nights and the pain is now getting worse in the day too. When I do wake up in the morning, my hands are bent over and take some time to straighten out.
Thank you for your interesting update. I'm glad much of your PMR journey is going well generally, but sorry to hear about the CTS. Fingers crossed (ouch!) that you can get something sorted before long. I will be interested to hear.👍
Hi tempusfugi, sorry to hear you are still having problems which would appear to be getting worse. It will be interesting to see what the MRI comes back with. Have to say I don't see where the Cervical Spine would come into play here as that is usually associated with problems at the neck end, rather than inflammation or pressure on the Median Nerve.
I believe that the medics think there may be problem with my neck/spine because of (nerve?) pain radiating from there in my upper arms, though it's not exactly clear if it's actually starting in pressure in the Carpal Tunnel area. I understand that CTS can cause pain in the upper arms too.
Have you thought about getting dictation software? Grammy80 uses it - you get some interesting interpretations at times but in general when they are well trained they can be quite good.
One of the reasons that I like this forum so much: the humour, which is so needed in the circumstances. Walking up 'the wooden hill to Bedfordshire', chuckling to something I've read here is a real boost!
Thank you, PMRpro, will definitely look into that. I am using similar on WhatsApp (either recording messages or using their dictation thing). As you say, some interpretations are somewhat odd ie carPOOL tunnel syndrome and my friend, Mitsue, has become a car - as she is now MITSUBISHI🤣.
Sounds like an overall great year in spite of PMR. Maybe some year I will be at 1.5mg but for now trying to get to 8mg especially after having four fusions of my lower back this year. I’m four years into this adventure!
Like PMRPro, I would be very interested in which smart watch you went for. I would like to change mine but unsure which one at present. Good to hear your update and hopefully you will get the rest sorted. Sounds like your GP is a keeper.
Morning, sorry for the delay, the original idea for a seperate post hit a snag. Anyway, my own smartwatch is a Samsung Galaxy. The latest version is a Galaxy 5 but the 4 classic is just as good and a bit cheaper. It works well and in conjunction with my Samsung mobile. Happy to PM you if you want further info.
Hi Bcol, I too am just about to reach the 3 year mark on my PMR journey. You’ve done very well to get to 1.5 mg of Pred. The lowest I’ve managed so far is 8.5 mg but I’m currently back to 10mg after a bad flare. Keep up the good work!! 🌸🌸
I’d love to be lower but I keep getting flares when I try to reduce. Also I only reduce by .5 mg at a time using the DSNS method. I feel that my disease activity has increased over the past couple of months. My Rheumy wants me to reduce by .5 each month but I can’t do it without the pain coming back. 😩
As we often say on here, your PMR is yours, and yours alone… you may have similarities to others, but it’s never exactly the same.
..as it’s self limiting, some are off within the 2 years often quoted, some longer - nearer to 4 years and some even longer..unfortunately not an exact science… so maybe think yourself as one of the luckier ones.
Hi Tiggy, apologies I'm a tad slow replying there. It's difficult to compare how we are all doing as this does seem to be a very individual disease. Some manage it a couple of years some are still working through it after ten years. I've been lucky with a relatively easy journey, no pressure from docs and no side effects from the Pred, so I've not felt any pressure to rush. All you can do is what works for you and which gives you the best quality of life. If I was struggling with QOL I would have no hesitation on going back up to whatever was neccessary. Take care and I hope all goes well.
Hi Bcol, no need to apologise🤗. Most of us try to keep busy if we can. I’m currently looking after my two youngest grandchildren (10 and 8 years) for a week. Fortunately I have my husbands help. They expect to be entertained every day! The first thing my grandson says when he wakes is “what’s the plan for today Nanny?” Re. The carpels tunnel, I had surgery on both wrists over 20 years ago, 6 months apart. It was painful afterwards for the first couple of weeks and my fingers resembled a bunch of bananas. I needed a bit of physio otherwise no problems since. I hope you get it sorted soon 🌸
Don't be afraid to have surgery, I had it 30 years ago, Instant relief, never regretted it. It didn't take long to recover either. My husband had both hands done at the same time and never regretted it. Good luck.
I wouldnt do it. Maybe you need another rheumatologist. I had a lot of trouble until I found the right one. I finally got off the prednisone at 2 1/2 years but with a slow taper
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