So 8 years in and still struggling to get anywhere on steroid reduction. I’ve been at 11mg for a couple of months or more and enduring pain and fatigue and general malase. So at the beginning of June I thought what the hell I need to improve my quality of life even if I have tissue paper skin now! Anywho here we are 20 days in and I’m feeling quite good, even managed a walk around Trelissick today. I still have tightness in my hips and low level pain but it’s a lot better and I feel my mood has lifted.
I’m still suffering with nerve pain (PHN) and the side affects of taking Pregablin and Amitripyline but at least I’m feeling a bit more normal😃
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Griggser
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Hi Griggser, you’ve had a tough old year, one way & another so l hope the increase has helped & you’ve enjoyed your day out n about. We have to do what we need to have a good as life as possible, l had to go back to 10mg rather than suffer at 9mg - l’m going to stay there for a bit, at least until we get back from France……
I’ve injured my left arm again so not a happy bunny at all.
Thanks for your reply and I hope the arm gets better soon. My right arm is covered in bruises from the thin skin that steroids give you. I’ve passed on your regards😃👍
Hi Suzy, pretty basic really I went from 11mg back up to 15mg of prednisolone. I’ve never got below 10mg and decided that I’d rather have the quality of life than chase reducing the steroids.
I don't think anyone could fail to have their mood lifted if they walked around those beautiful gardens, its one of my places to visit whenever I come to Cornwall. Until last year I came down to Budock Vean Hotel in Mawnan Smith 3 times a year with my dog. The Roseland Peninsula is a favourite too and one my dogs was name Roseland Rosie. So good luck, 20 days in many more to come.
Well done, Griggser!Mention of Trelissick took me back to our holidays in Cornwall when our boys were young. Beautiful gardens-also Cotele and Lanhydrock.
No wonder your spirits are lifted. Long may it stay like that.
I'm pushing as much as I can for the PMR research people to take an increased interest in Long PMR. We've achieved getting a clear statement from Prof Sarah Mackie in Leeds the there is a "PMR 2 year myth" that must be dealt with. Max Yates at Norwich is on board too. We are getting there!
Hope this is the start of a really good period for you - you've waited long enough.
I have been thinking of you and wondering how your appointment with our GP went the other day. I had a phone consultation with her first thing in the morning and she was really trying to get me to take statins to which I said no thank you. I really would like to try and improve things in a more natural way and have looked up a cardiologist who has thoroughly looked into this.
Anyway, enough of that. I am so pleased for you that you have managed a trip to Trelissick. On such a lovely day too. I must say, before the pandemic we used to go there and have a bowl of soup and a short gentle walk, haven’t been back since, sad to say.
Hopefully with the sun appearing more now ( fingers crossed!) and what you have done today which has obviously cheered you up a lot, this will encourage you to try and get some good things out of life again. Lots of rest now and maybe a plan to try some other short trip in a few days time. Pacing is often I find hard to do when other stuff interferes. I have just been to the hairdressers and am now done in!
Perhaps just sitting in your garden with a nice drink 🥤!
I’ve always found our GP to be very empathic. We went through my latest blood results together and the only one that was not normal was my CRP @ 29. She wrote to rheumatology whilst I was there asking if they would consider Tocilizumab as a steroid sparer for me. She offered me Naxproxin for the hand pain I’ve been having but I declined as I didn’t really want to add that and omeprazole, I’d rather focus on something to help me reduce the pred. Funny enough though since I increased the pred my hands are not so painful at all. Sitting in the garden sounds nice but I think it will have to be with tea or coffee for now as I’m on the wagon I hope you find some natural remedies to avoid having to take statins.
As far as I know you can only get TCZ if you have LVV not 'just' for PMR as it isn't licensed for PMR yet. And very expensive. CRP of 29 is still quite high, or would be for me, and confirmation that I'd need to up my steroids at least temporarily. Sorry not read your previous posts yet, have you every been offered methotrexate?
Oh yes I tried methotrexate, mocfenalite mofotal, azathioprine, leflunomide, hydroxichloriquine (not sure on spellings). They made no difference apart from stopping me drinking and being very I’ll on azathioprine 😂😂😂 When I first gif diagnosed my CRP 64 I think. It’s been so long I forget details like that but I’m pretty sure I’m right. I’m booked in for bloods next week so it will be interesting to see if my CRP has dropped due to the increased steroids.
I'd imagine it has if you're feeling better and are more mobile, for me there is a clear correlation betwen CRP levels and symptoms. I've tried most of the drugs you've tried, also with no luck, so mtx is my last hope, een if it is a shot in the dark. With a bit of luck, PMR will eventually go away for both of us, but until then, like you I'm choosing quality of life over not being able to do anything and even getting worse. Enjoy the sunshine!
She is a nice lady and think perhaps lucky that Dr Schuh recommended going to her. Brilliant that most of your blood results were OK. Annoying that your CRP was up. Obviously not enough Pred to deal with your inflammation I guess.
Interesting that your hand pain is better since upping your Pred. I think it’s very hard taking more and more drugs for things that are troublesome. They come with their own side effects too. I am now wondering whether some BP meds I am taking are the cause of my longstanding cough and croaky voice. Getting my BP down obviously is a priority, so don’t know what I could have instead. I’m on three already and she tried a different one a while ago and doubled the dose. Phew, that was awful! Came off those pretty quickly!
Interesting too, that she has referred you to rheumatology. Wonder who you might get to see? Also how they will treat you?
Do keep us posted and I do hope you get to enjoy more. Take care and enjoy even small pleasures.
Great news! Congrats, Griggser, for going for it, and best wishes for reducing your prednisone intake. We’re all in this together so really understand the frustration.
Another one from the Cornish contingent here! Well done, it gets to the point where you think 'I've had enough of just getting by, adding more pills to adjust this/alleviate that/combat something else, what I need is a life!' so I increased to 12mg and rejoined my archeology group that meets once a week to maintain ancient sites (gentle strimming and secateurs with lots of pauses). Works for this ancient site, too... Just being outside, chatting with people, doing something useful and looking at our wonderful countryside beats my 4 walls 😊
I've never been referred to a rheumatologist in my 7 years of PMR and have been left to my own devices with pred, lots of other issues but a good pharmacist who follows up and a GP who refers me for other treatments when necessary.
So much of our wellbeing is dependent on mood, and you've made a great start with your 'what the hell..' Enjoy making plans, and getting out there - this is a sweet spot at the moment, not too many crowds, sunshine, birdlife, gorgeous gardens. Enjoy yourself!
Hi. Im another Cornishman - well Woman ! - living in your area , I am still a comparative newbie being diagnosed last August , Like you , Love Trelissik and Glendurgan but am finding the fact they are so steep too much of a challenge for my breathing ! so a big well done on getting there. just wanted to say I am with a rheumatologist based in Treliske ( luckily I see him in WCH ) named Timothy Jenkinson . he is a youngish man with older idea, believes in tapering preds 1mg a month from beginning straight down to be off the Preds in 2 years -he was annoyed with me for doing 1/2 mg a month ! but after a " Discussion "thanks to what I have learnt on here , he agreed if my GP and I were happy he would be happy too , so you could maybe get him as well. I do hope you improve soon Im sure being able to o to Trelissick will have helped . all best wishes
Same with Mukhytar at Norwich, He claims 80% of his GCA patients get off pred with his fixed 100 week reduction. I'd like to see figures for the following 100 weeks. And he says the highest rate of GCA in the UK is in East Anglia - because of the high influence of Viking genes. I wonder if is also a different variant. Read an abstract from a paper this morning that said quite firmly that GCA is not a heterogenous disorder - just as PMR isn't. But they all want to manage it as if one size fits all.
Sorry to hear your breathing prevents you from visiting the NT gardens.I saw Dr Jenkinson 3 x times and on the second visit he said he thought I didn’t have PMR and he thought it might be fibromyalgia. This was despite my history, CPR results being high and how I relapse if I drop below mg of pred. On the third visit he agreed that there was little he could offer as I had tried all the steroid sparing drugs. He said he would keep me on the books so it would be easier to see him if I needed rather than get back on the waiting list. Great I thought at least I gave back up if I need it. I then got a letter saying as I hadn’t been in touch over the last two months he was discharging me back to my GP. So I’m not really impressed with him!
Hi Griggser, I was like you struggling to reduce prednisolone and decided to listen to my body so I could maintain a reasonable quality of life. I was on steroids for 14yrs from 2006 - 2020. After the first 6 or 7yrs and with some difficulty, having to go up and down on steroid dosage I eventually managed to get down to 5mg which I understand, is a level at which you get minimal side effects. After another 7yrs of going up and down to maintain a decent quality of life, I got down to 3mg. Then at beginning of lockdown decided to try to reduce again.
I found the most successful method is the DSNS (dead slow nearly stopped) which I learned about on this website. Having got down to 3mg, I planned to reduce 1mg over 2 to 3 months and repeat over 12months. This worked well up-to the last 1mg. Then I reduced 1mg per week which meant no steroids 1day on first week, 2days on 2nd week etc; making sure to separate reduction day so they didn’t follow one another. When I got down to taking 1mg twice a week I started feeling unwell and nauseous on the day I took the steroid. At first I thought it was because the PMR was coming back and needed to increase steroid dose again, but instead, I decided to discuss it with my doctor.
After explaining that I’d been reducing Prednisolone and got down to 1mg twice a week, the doctor said “stop taking the steroid right away!” Further discussion made me I realise that, while reducing steroids my adrenal glands had started to function more normally each time I reduced the steroids. I had reached the level where my adrenal glands were functioning well and when I took the steroids my adrenal glands were being thrown out of balance, hence the unwell symptoms. I stopped the steroids right away and the unwell and nauseous feeling never came back.
However, I did occasionally have pain in my shoulders for a few months but rather than thinking I’ll have to go back on steroids I got my bloods checked to see if my inflammation levels were up. Usually they were at an acceptable level so I kept using heat pads for painful areas and extra paracetamol if needed.
The conclusion I’ve come to is, listen to your body each step of the way, and don’t be quick to go back up on steroids unless your inflammation levels show it’s necessary. But of course always follow your doctors advice or get a second qualified opinion. I hope this is helpful to you and others and wish you all the very best in your recovery.
That is very uplifting - that you were able to get off pred after 14 years!! Maybe it would be worth writing this as a separate post in it own right so more people see it?
I used to find something similar when I was reducing using the DSNS plan - as the days of the new lower dose increased I came to a point where I felt better on the new dose days than the old. When that happened I went straight all new dose.
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Hello Griggster ... my history with steroids is similar to your. I also have lower arms that are literally disfigured with permanent brown skin, white from scar tissue and all shades of red. I have a moon face plus weight gain etc. I am willing to take my chances with steroids for the benefit of a decent day.Forgot to mention I am 77 years old and just been diagnosed with interstitial lung disease, but that's another story. Good luck
I wish I'd known at the beginning some of the things I know now, and the most important one would have been that you need enough steroids to control your inflammation, not what some textbook or doctor says is right. It's quite possible (though as yet unproven) that we are long-timers because we weren't treated correctly in the first place and tapered down too soon or too quickly. I remember being in agony and barely able to walk by the time I was on 5mg within 6 months but assumed the doctors knew what they were doing. Or it could be that some of us will, for whatever reason, have PMR long-term or even for ever.
Like you, I have chosen quality of life over pain but it angers me that he steroids cause such horrendous side-effects. I joked with my rheumatologist the other day that if it was mainly men that got PMR and these side effects, better solutions would have been found by now, we have been overlooked because we are 'elderly women'. I'm sure if there is profit to be made by developing new alternative steroids some drug company will be on the case soon though.
Yeah - and NICE got very upset when on completely separate occasions it was suggested that had something to do with some of the TCZ decisions or that they would never cough up approval for a biologic for PMR because they wouldn't spend the money on an elderly population. Apparently they did change their tune with GCA afterwards.
Your spot on about listening to your body but might overlooked that I am of the make species. However I completely agree with you and of course steroids can be produced for pennies so no interest from the drug companies.
Yes got me there LOL I hadn't noticed your picture and you being of the male species, how silly of me! #ShouldHaveGoneToSpecsavers. Men tend to have shorter PMR journeys so you must be extra peeved to be a long-timer. You've made me think of getting to lovely places like Cornwall today which has done my mood good, so thanks for the post, and as my rheumatologist says, 'never give up hope'.
And the Pred may be cheap, but I don't think NICE take into account things like the lost years and productivity and earnings due to PMR. As I got it it in my 50s I struggled to work as I was self-employed, my earnings were severely reduced, I must have lost out on about £250,000 by not being able to work much of the last 10 years, I'd happily pay £17k (Ithink that is the annual cost touted) myself somehow for TCZ if it was a cure for PMR!
They take QUALYS (quality adjusted life years) but no, don't think the financial side is considered as it should be. But not least because it is such a high preponderance of older women who were mostly retired or not working when they got it. The demographic is changing - and will make an impact eventually. NICE got very stroppy at that suggestion though!!!
I am on a different NICE committee and must say that I am quite impressed by their expertise and the rigour with which they look at the evidence. I am not aware of any investigations in NICE on PMR/GCA or long term use of PRed. If there are, the charity could become a stakeholder and comment on any guidelines/ recommendations released which then have to be considered by the committee. The committee I am on is very diligent and takes a lot of care. Trouble is, the conclusions are not always the ones we want for various reasons!Snap with you, tangocharlie, I was also self- employed and had to retire much earlier than I had planned, having cut down my workload bit by bit once I got PMR.
I have been on a scientific advice committee as a patient. I came away much more impressed with NICE than I had been. But there are pharma companies out there with ideas - not sure they are quite on the right track yet though,
Revived a text from the GP :- Dear Mr Griggs-Trevarthen,
I've had a response from the rheumatology team who feel that tocilizumab is not an option for PMR. There is an option to try leflunomide. Please make a phone review with me to discuss.
It isn't an option because it isn't approved for use in PMR so funding is a problem. There is off-label use but that requires a special process and application.
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