My PMR Three Year Update

[Bcol]

Hi all

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.

[DorsetLady PMRGCAuk volunteer]

Good to hear you have got through another year - with its trials and tribulations - and hope that you can get the CP sorted without too much hassle.

As for support etc -have to say, you do pretty well yourself. 😊….and not sure about keeping people “sane’ - although it’s all relative I guess.

[PMRpro Ambassador]

Not sure how I keep people sane, being as mad as a box of frogs myself but hey-ho!

Do you fancy doing a post on the process of deciding which smart watch? I suspect there are a few of us who would be interested.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

🐸🐸Reddit, Reddit🤣😂

[AyJayBass in reply to PMRpro]

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!

[Bcol in reply to AyJayBass]

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.

[tempusfugi]

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.👍

[Bcol in reply to tempusfugi]

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.

[tempusfugi in reply to Bcol]

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.

[PMRpro Ambassador in reply to tempusfugi]

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.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Not sure same can be said for Grammy80 😏

[PMRpro Ambassador in reply to DorsetLady]

I'll tell her you are casting nasturtiums ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

She won't care...she'll take it in the spirit it was intended - perhaps that was the latest problem.. no too early in the day 😂

[PMRpro Ambassador in reply to DorsetLady]

She might have fallen softer with a spirit or two on board ...

[Grammy80 in reply to PMRpro]

🍾🍷🍹🍺xxoo you two cheers💞💞

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

😊

[tempusfugi in reply to PMRpro]

No, no casting of nasturtiums against Grammy80. I am a big fan of hers😍

[PMRpro Ambassador in reply to tempusfugi]

It's OK, we are friends outside the forum - she casts plenty about me ...

[tempusfugi in reply to PMRpro]

Ah well, fairs fair then😉

[Grammy80 in reply to PMRpro]

Me? 🙃

[PMRpro Ambassador in reply to Grammy80]

[DorsetLady PMRGCAuk volunteer in reply to tempusfugi]

Me too, that’s why I can say it, ‘cos some of us have the same sense of humour…

[tempusfugi in reply to DorsetLady]

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!

[DorsetLady PMRGCAuk volunteer in reply to tempusfugi]

You’ve been around long enough to know my views on humour…😊

Haven’t heard that phrase for a long time… but then I have lived in a bungalow for the last 27 years…😉

[Grammy80 in reply to DorsetLady]

Tis true!!🤥🫣

[tempusfugi in reply to PMRpro]

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🤣.

[PMRpro Ambassador in reply to tempusfugi]

Some of them are priceless!!! But it affords a laugh or two ...

[tempusfugi in reply to PMRpro]

and we sure need a laugh or two! Nothing like a good laugh to keep you going...

[singingloud]

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!

Keep moving forward Bcol!

[Sophiestree]

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.

[Bcol in reply to Sophiestree]

Hi, As PRO suggested I'll do a post on smart watch choices in a day or so.

[Bcol in reply to Sophiestree]

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.

[PMRpro Ambassador in reply to Bcol]

I will work on that since I want to know too!!

[Tiggy70]

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!! 🌸🌸

[Lever in reply to Tiggy70]

I’m surprised. My doctor had me get off it at 2 1/2 year mark by a slow taper

[Tiggy70 in reply to Lever]

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. 😩

[PMRpro Ambassador in reply to Tiggy70]

I think that was what used to happen to me - and then in the last few years over Covid it just slowly crept up and up so I needed more and more pred,

[DorsetLady PMRGCAuk volunteer in reply to Lever]

I’m surprised…

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.

[Bcol in reply to Tiggy70]

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.

[Tiggy70 in reply to Bcol]

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 🌸

[Bcol in reply to Tiggy70]

Can relate to the GC's bit. Had three of mine the week before last and then away tomorrow for a week with four of them. 4,5 7 and 11.

[Tiggy70 in reply to Bcol]

Have fun!!! (and try to rest if you can).

[Bcol in reply to Tiggy70]

Will certainly have fun, not sure about the last bit!!

[Staffieblue]

Thank you Bcol it was good to hear how well you are doing .

My husband had carpel tunnel , had to have a little op on his wrist , it did work for him .

Beautiful photo with your dog take care .

[Bcol in reply to Staffieblue]

Lost Meg earlier this year, not really got over it yet! 😢

[PMRpro Ambassador in reply to Bcol]

It is a gorgeous picture of her xxxx

[Staffieblue in reply to Bcol]

I thought it was Meg she was beautiful .

I remember but I couldn’t post you about it I tried but just got really upset trying to say the right words to you , that was a bit selfish of me .

You were the one going through that grief , just kept thinking of my Bruno can’t bear the thought of losing him he’s my pal .

Take care

[Kiwisufferer2019]

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.

[Kiwisufferer2019]

I'm coming up 4 years with pmr, still on 10mg. Rheumy wants to try methotrexate, next appointment 2 weeks away. I don't quite know what to think.

[Lever in reply to Kiwisufferer2019]

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