Can I say a massive thank you for all your support and best wishes . I guess its obvious that I`m not in a good place and I felt aprehensive at disclosing that my potential trials with pred for PMR were perhaps not done very well and my struggles with alcohol. I was truly touched at the amazing Love , support and advice received . Brought a tear to my eye .
Thank you to /What no Carbs /Winslades offload/Oddmanout/Den73/Angelsmummy/random901/sophiestree/Rynn33/Pinkcrocs/Badger1966/Frewen1/Kendrew/Groggrim/and of course piglette /PMRpro/Dorset Lady and Snazzy D.
There are so many suggestions I will need to take time to go through each one carefully .
In 3 paragraphs I will try to tidy up and clarify some points and perhaps ask a couple of specific questions which I would love to find answers to ?
Para 1. A lot of you mention stress as a potential contributing factor in my health getting worse . There has been a load of it . In the last 2 years alone, I have lost my dad , moved house and opened up an archery holiday business North Wales which has become very successful . Throughout all of this my health has been deteriorating . PMR symptoms descibed in para2. But also these are the main things I`m battling with . To recap , feeling super wired and anxiety as if I`m on 15 coffees / Feeling Super tired at the same time(terrible fatigue )Inability to do the smallest exercise without fatigue and a horrible feeling of unwellness as a result !! Stomach issues and wobbly legs .generally not feeling well at all . The last 5 weeks have been worse , as has been the stress, due to the new season of archery guests starting . I am a perfectionist by nature and a very hard working person .Luckily I have a young friend ( fellow archer to take over with any physical work ) . In my defence of taking on something like this, It has been a dream of mine to create such a venue in the UK and prior to moving and starting it I was in rental accommodation with very little stress but my health was also declining at the same rate . As a matter of fact the focus of this project has helped give me a positivity throughout this horrible illness . My biggest stressor by far however is my health and how it affects my ability to function overall .Ive gone from British archery champion to someone who has to stop every 2 steps when going up the stairs otherwise this fatigue malaise hits .. It is NOTED as I write this and reflect on your comments and my recent actions that I need to slow down and take time to recover . Ive started that process.Thank you .
Para 2.The predominant PMR symptoms seem very separate and I have got to know them very well . Back of neck starts to ache , as do my hips and hip flexors and some other joint pain . Usually in the evening or when I suffer from a flare ,when bad it leads to the flu like feelings as well and you just want to go to bed .! Horrible but apart from some fatigue and anxiety totally different to the stuff I describe in paragraph1. Therefore I suggest and think that the stuff in the paragraph 1 is partially if not mainly due to steroids or something else ? Batteries of blood tests Ecgs etc have not shown anything abnormal .
Para 3.With that in mind I am thinking to definitevely come down most recent higgh dose was 15mg currently on 10.5 and whilst a platform of perhaps 10mg for a prolonged period would sound sensible (a couple of you have mentioned it as a more tiered approach) ,surely if I`m as bad as this I need to drop levels. Ive considered whether I have adrenal insufficiency BUT I feel as bad on 13 mgs as I do on 8 or 9 mgs in terms of paragraph 1 symptoms . So far Ive never got past 8 mgs without a flare but Ive never waited more than 3 days after the increase of pain before boosting pred by 5mg . I`m thinking to wait and bear with it when I get to this stage again and see if it settles, if not use methotraxate to continue the tapering necessary . What do you think about this ? or is that yoyoing again ?
Has anyone had the battery of symptoms and feeling so rotten as I describe in Paragraph 1 and have you attributed this to the pred? Can pred side effects increase over time and can they be this horrible ?
Thank you once again for all your support , I`m truly touched .
Marek
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Marek1
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There is one thing about PMR - it is confusing. Definitely stress has a big impact on the disease. I remember one time writing on this forum a list of the stressors I'd experienced over the past few year, I counted sixteen things. Then, for some reason, I deleted the post and never tried to remember those things again. It was quite unexpectedly therapeutic!
Another thing, which nearly all of us have to learn, is patience. If you have tried repeatedly and find you flare at a particular level, that means you are not ready to taper any more at that moment. If others have suggested you stay at 10 for longer, why not try that? Or, if you really do feel all your symptoms are controlled at 9, stay there. Or if you need 11, so be it. And when you are ready to try a taper again be sure to use a slow method and if need be go even slower.
One thing I learned was it doesn't matter how slowly you taper, once you reach a certain level, and that will be specific to each person, you cannot trick your body into accepting an even lower dose. You need what you need. In a little while if you let the symptoms settle and feel more confident again you can cautiously try a half mg taper - not an overnight drop to a new dose but a slow introduction of the new dose. "It isn't slow if it works." By going slowly you'll find in the end that you have taken less pred than if you constantly cause a flare by trying to go a bit too fast and needing to increase the dose again. In time it can become more difficult to dampen the flares and you end up yo-yoing up and down and that is no fun.
Like so much else with this disease our experience of side effects varies a great deal. I felt so much better on pred! However I experienced some hidden side effects, like increased ocular pressure and elevated blood sugar. Couldn't do much about the eyes except monitor the situation with eye appointments, but I dealt with the blood sugar, and also possible effects on the bones, by dietary changes. Never took any other meds for the PMR. I was on pred for 8.5 years (2015-24), most of that time after the inital couple of years at or about 2 mg, with a brief and unsuccessful flirtation with zero in 2020. I was finally in remission and off pred Feb 2024.
Good luck on your journey. You might enjoy, even relate to, this account I wrote in early days. Eventually my relationship with pred became less ambivalent
Hi again . I agree with everything you say . esp "It isn't slow if it works." By going slowly you'll find in the end that you have taken less pred than if you constantly cause a flare by trying to go a bit too fast and needing to increase the dose again. In time it can become more difficult to dampen the flares and you end up yo-yoing up and down and that is no fun.
However, I feel awful , hence thinking it must go down to perhaps the threshold of at least 9mg?could it have been the yoyoing thats made me so ill I wonder .
Hi Marek 1, I'm so sorry that you're struggling. Well done for writing your posts, and for being honest. I'm pleased but not surprised that the responses have been good. I have a couple of thoughts...
PMR is helped by Preds, so you need to get the dose right. Speak with your GP , they should provide expertise to help. If they don't then get rid and find a good one. Do you have a Rheumatologist? I'm in mid Wales and my Rheumy is at RJAH hospital in Gobowen - a very good hospital.
You have had a lot of change in your life - good and bad, but all of it is stressful, and some research has identified tentative links with PMR. Work towards stabilising things. It sounds as if you are doing this. Well done, keep going. It sounds like alcohol isn't helping, so you're right to reduce it or stop altogether. I too recommend 0% Guinness! You must stop drinking if you start Methotrexate, as alcohol impairs its effect.
My rheumy is also RJAH !!! Dr Askari . I really like the guy , but to him its all about reduce reduce reduce every time I see him . although this time at least he wants me to do it slower than slower than before !He doesnt believe in increasing by 5mg with a flare and just says take whatever pain killers you need inc. codeine to get through the first few days of adjusting to a lower dose .
I use Dr Sagdeo. He also has his own way of doing things. I prepared for my 3rd meeting with him by asking questions of the forum members here, and preparing for the meeting. To be fair he listened to me and then agreed to change approach a bit. He has slowed down my taper and started me on Methotrexate.
Painkillers don't work with PMR - lots of people on here think this, and it is my experience also. However they will help with DOMS (delayed onset muscle soreness) - if you overdo the archery for example!
I do understand the reduce reduce reduce approach, it is damage limitation, we shouldn't be on steroids for long periods. However (again you will see this on here) if we keep flaring we end up taking more steroids in the long run. So our Rheumies need to work in partnership with us, and listen when we are in pain. I'm glad Dr Askari has listened to you about tapering.
I had (have) GCA symptoms, pain was high, headaches, double vision, and my CRP and ESR levels went higher than ever, so I was fast tracked to Rheumatology (good) and went up to 60mg preds. Dr Sagdeo is using MTX as a steroid sparing agent to help with tapering, because I flare below 10mg every time. I'm on 9mg Preds now. I'm on 15mg MTX a week, plus folic acid. I have to say, it doesn't seem to be working yet, although it can take 3 months to have full effect. Research says it only works in a small number of people. Guys on here are saying this too. I feel ok, the afternoons are a bit better, but overall no great improvement 2 months in. I should have tapered to 8mg last week but rang the RJAH helpline and they suggested remaining at 9 until next week's appointment. So they do listen!
Well if they told us, we'd ring them!!!! 01691 404432. You leave your patient number and a message, and someone, usually a rheumatology nurse gets back to you on the same day. It's good.
I do wish they could understand that painkillers are NOT the answer to a flare due to reducing your dose below the lowest effective dose! They MAY be useful to adjust to a new dose when then change in dose, steroid withdrawal, is the problem but they are totally different things and the slowed tapers are a way of reducing the likelihood of steroid withdrawal. You need to taper - reduce is something different - to identify that lowest dose and you need to BE at that lowest dose, but NOT below it, That will result in all the symptoms returning sooner or later.
This post from the FAQs has a lot of information about fatigue and pacing yourself which may help part of your issues. Fatigue although a major part of any autoimmune disease is often just dismissed by outsiders as being “a bit tired”..it’s not - it’s extremely debilitating.
Unfortunately one of the side effects of Pred can be anxiety - as if you don’t already have enough with moving and setting up new enterprise etc [well done on that it must be very satisfying as well as stressful].
As you say some of your issues do sound adrenal-like, and that’s what we would say at slightly lower doses.. but in your case, I would plump for it being Pred side effect rather than that.
As you have acknowledged your life in the last couple of years has been turned upside down, on virtually every aspect, family bereavement, change of lifestyle including leaving behind a sport you were obviously very good at to creating a new business, moving home etc.. all extremely stressful on their own, but add all together and a perfectionist.. a perfect storm.
As we said before, some of the physical things you may be able to address yourself, but you do need help with the mental side of your illness.. not necessarily drugs, but maybe just talking therapy. Not sure if something like this would be a start -
Personally I would stay at your current dose for a couple of months, and give yourself time to think about all the options open to you.. if you forget about tapering [just for now] perhaps you’ll get a clearer picture.
Hi Again , Thank you once more, I agree with the wisdom of everything you say . BUT, I feel awful . Should I not at least perhaps go down a little lower before I stabilise on a tier for a couple of months ?
Well, what dose you stay on is entirely up to you of course... but you seem to imply that you don't feel any better at 8mg or 11mg [or have I misread that?].
So unless you can prove a higher dose of Pred and it's side effects is making you feel generally worse than you do at a lower dose where it could be your PMR causing the issues, personally I'd opt for the 11mg with better controlled PMR.
But as we so often say, and this is not a negative response but a true one - it's your body, your illness, and ultimately your decision. What suits me or anyone is just our stories for your info - we can only suggest what we think may help, but sorry there are no cast iron guarantees. 😊
Having nursed my late husband [following a very active and outgoing life - countryman and military career] with serious cardiac issues, and although not an alcoholic - as the saying goes [aided by military background ] "he liked a drink" he did find that talking therapy did help him through a bad patch at one time. He was sceptical about beforehand, but said afterwards - "although it probably didn't tell me anything I didn't already know, it cemented those thoughts and definitely helped.
To add to what HeronNS says, the slow tapers that are listed here from both Dorset Lady and PMRpro are vital to aid dropping doses as they kind of trick your body into not quite realising you are reducing. Other than that , as she says, it sounds like your PMR currently needs a higher dose that you would like it to, which is why you are not comfortable at the lower doses. Finding a dose that is comfortable and staying there for a while is key.
I had to stay on 11 mgs for about 10 years - every time I reduced, I had a flare. Finally, in the last year , after 13 years of PMR, I have been able to reduce after thinking I would never be able to. I am currently going down to 6 mgs but have taken a year to do so and am fully aware that I might have to stop at any time.
Hi Suzy . Everything you say makes sense , But currently on all the doses from 15mg recently to what I`m on now 10.5, I feel awful . How bad were you when on your 11mg, was it manageable ?
Yes it was. I had a PET scan January 2024 which showed that the pred was dealing fine with the inflammation. This was helpful because it showed that my other pains were not PMR.
Yes! I’ve struggled for five years, during which I have gained no fewer than 6 new diagnoses of nasty illnesses, which are all ruining my quality of life & most of which have fatigue as a major symptom, & pain as another! On any given day,the following happens…one of my joints dislocate from merely opening a window/door, I bend down a pick something off the floor & stand up too quickly, & my BP drops like a stone & I pass out…I forget my dreadful tremor in hands & arms, pick up a drink & it goes everywhere, floor, walls etc, I fall over a lot (last year I broke my Coccyx, this January I ripped the meniscus in my knee & still waiting for surgery…on crutches & morphine). That’s just the morning! I used to play hockey for the county, our main hobby WAS hiking in the forests we live in, skiing, alpine hiking, gardening, cycling…all are gone. Adaptation is the key…& try not to blow your mind getting angst about what you’ve ‘lost’. Forget it. It’s gone. Think only of the future & how you cope going forward. You’ve employed somebody to help, that’s great! I feel super wired a lot on either higher doses of pred or morphine. All my muscles tense up at once, give a lot of pain & wont relax. I’m lucky (?) as some of my tablets for 15 years mean if I drink alcohol, I vomit. But our neighbours daughter is just out of rehab for the second time & her four children are all living with didn’t relatives. We help out as much as possible. I’ve learned a lot about alcohol dependency, & it’s very hard to deal with. Keep on trying to stabilise & cope with your work, it’s a really exciting business,congrats. Take time to chill & feel the suns warmth. Try to help your mental state, & get professional help if you can…you’re in the right place forPMR help, for sure! Good luck!
I think that above all you need decent medical input on this - you are blaming pred and PMR when it is perfectly possible it is something else. And it may not be a rheumy you need. Is your GP aware of all the things you have told us?
You have my sympathy and understanding. Whilst I have not reached a level as notable as Archery Champion, I have always been a 'doer' with people frequently saying 'I don't know how you do what you do' so PMR popping up as suddenly as it did (in May 2020) has slowed me down a lot in a way that I don't recognise myself as me, not really though in reality, I think I still do more than most, I just do it differently.
Today, I am about to undertake a trip to London for the first time in 4 years - I used to be up and down at the drop of a hat, now I feel rather tentative (but will do it anyway). I do less organising events and long term contracts (arts consultancy and marketing), more support and advising than running around with boxes of stuff, cook for homeless people rather than hosting big dinner events for my friends (which involves a whole day clearing up the house). All these sound minimal really but it accompanies a range of adjustments of expectations.
But your story sounds familiar to me with a feeling of being tossed around with no real sense of balance. My advice would be to try and stabilise your dose on something that you feel will control your symptoms reasonably and stay on that. I contracted Covid in April 2022 and afterwards felt that I had been thrown around in a tumble dryer (I had no knowledge of Sick Day Rules and had just dropped from 5mg to 4mg).
After a few nightmare weeks I finally found this forum and went to 8mg where I stayed for several months. This allowed me to stablise. I dropped out as much other medication as I could to try and filter out side effects eg statins and BP medication both prescribed to deal with pred effects. Eventually I felt more steady and could work out what was affecting what. In the process I had to draw back from various things, though I have kept my core work (arts publishing and arts marketing) and am still active and have adapted the way I do things. I have gradually got down to 3.5mg again, still with some pain and physical limitations but at least have a good deal of my energy. (Jury is out whether my adrenals will come back to life).
I completely understand how something that seems like a stressor to someone else can also be stimulating for another person so I can understand your drive to set up an archery school. Can you make it work by changing your role? I used to play a game called korfball which I can't do any more but I coach younger teams now which is not quite as good as playing but still enjoyable, and using all the knowledge I built up over 30 years of playing.
If you can settle your system and reset, finding a way to adapt your work (your young friend sounds like a real asset) and use your head more than your body, do strengthening exercises. The symptoms you describe (wired and anxious) sounds like cortisol imbalance and I can't pretend to understand how that all works except that I think the body can't adjust in a 'normal' way. I have felt like you describe recently but my cortisol levels are low, apparently. There are still many mysteries - but as in any problem-solving situation, reduce as many variables as you can.
Thank you for a such a detailed and heart felt answer . I will try and stop for a while on a set dose thank you . I will also look up cortisol imbalance . as although I understand there are loads of variables , Im still looking for something which lists similar symptoms to those that have gradually been getting worse with me . Knowledge would make me feel more empowered .
Filtering out others stuff makes sense . Glad you are engaging with your trip . Have loads of fun . Thanks again
Morning Marek,,I read your story with some sadness but the fact that you are accepting that you do have problems and are reaching out for help,is a good step forward for you.I am no expert at all,I leave that to the WISE ONES on here,but If I was you ,I would not be dropping the dosage any time soon.Get your self stable first ,then reassess.SO wonderful that you have realised your dream of the archery school and in such a beautiful place,my sister lived in various farmhouses in North Wales ,and I have to admit I was very naughty and used to steal a piece of the beautiful plum slate from the mountains!Being in such a lovely area obviously helps with your well-being.Get yourself a decent dr and Rheumy though I know that it is hard in such a rural place.You need to be given proper advice about lots of things ,and thankfully regarding the PMR you won’t get much better than on here.Please pace yourself,we have all tried to carry on as usual but this disease will NOT allow you to do it my friend.Take a step back,revaluate,and get yourself in a better,stable place.Pre is our friend even though he throws spanner’s in the work sometimes,but without him what state would we all be in..?Hope the reduction in drinking is going ok?Please be gentle on yourself,you are going through a lot and not everything can be sorted at once.Get this disease under control and other things will hopefully fall into place.So very sorry for the loss of your mother too.Get yourself well for her.Sending a hug and sincere best wishes,xxx🫂🌷
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I Don't Believe This!
MRI results, not GCA, but appears stroke had happened
Two for the price of one
