suzy19592 months ago

You will get responses from the more “expert” among us, but I just wanted to say, hang in there!

You are having a horrible time, not helped by the really unhelpful misinformation you have had from the consultant. PMR lasts longer than he said and Pred. Is not the poison he made it out to be! It is all we have and we can and do make the best of it. There is no point being on too low a dose. Our body needs what it needs.

It may help you to know, I was diagnosed at 52yrs. ( you are not necessarily too young at 50), 11 years ago. I have never got below a dose of 8.5 mgs pred. And I am still here! I still have a life, albeit a different one. I have no choice but to accept it!

In terms of putting on weight , diet etc. I have had life long issues with food and weight and, speaking as a retired counsellor too, can I suggest that some kind of mental health support at this time could be invaluable? You deserve it. This is a difficult condition with difficult treatment and we all need support to get through it.

Please don’t despair- there are many of us on this forum and we are here to inform and support all the way. You need proper medical care, but using this forum is also a vital part of your journey with PMR.

RunningRabbit7007 in reply to suzy19592 months ago

Thanks so much for your reply. It means a lot to have support from people who have been there and understand.

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Colleen1974 in reply to suzy19592 months ago

Suzy you are making me feel better. I tapered to 8.5 a few weeks ago and hit a huge wall. Had to go back up to 10 and now at 9. Decided to stay at 9 for a while. Just when you think you have things in hand it gets handed right back to you.

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SheffieldJane2 months ago

I agree with your own assessment that you have tapered too fast. Like us all, you are keen to be done with Pred and all it’s inconvenient side effects. You seem to be resisting the very necessary treatment for this debilitating disease. There are no short cuts, you need to treat yourself properly to get through this. Your doctor is not helping because he is wrong on many points. Nobody gets away with a year of PMR, more is the pity. This disease can be around for years. Your tapering is aiming to find the sweet spot of the lowest possible dose to control your symptoms. It needs to be done gradually or you will miss that dose. I agree with Suzy about the use of therapy to help prevent sliding back into eating disorder behaviours. Small portions seem to be effective in my experience. Eat well, just cut out the empty sugary foods and drinks. Please read FAQs it will help put you on the right road again. We are pretty intolerant of heavy exercise, so it needs to be walks on the flat ( I got up to 10,000 steps a day using my fit bit). Water based exercise is helpful for the stiffness, but build up gradually. Acceptance is hard and necessary.

RunningRabbit7007 in reply to SheffieldJane2 months ago

Thanks, you are right about acceptance. I always believed I was invisible and my family keep telling me I'm not the usual 50 year old, with my fitness levels and abilities. But I think PMR doesn't really care about my starting point, it will bring me down If I fight it. I will do as you advise and eat small amounts but try not to worry too much about my looks. I have learned my lesson now with heavy exercise and will order the treadmill for gentle walking. I know one day I will be able to have a decent life and rebuild my body. Thanks again.

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SnazzyD in reply to RunningRabbit70072 months ago

I was diagnosed in 2017 with GCA aged 54, the other version of this condition requires much higher doses of Pred. Prior to that I was fit, working and a general superwoman. All those things were very important to me for self validation. My initial goal was to get back to that which I had every confidence in being able to achieve as I was not short of determination and will power. Unbeknownst to me my journey’s lesson (through therapy too) has been to realise that those things weren’t sustainable but the surprise of the century was that I actually could survive and thrive without them. Trying to get back as if there was no other option just caused stress and disappointment and more self admonishment. Meeting with past trauma helped a great deal not least to learn to listen to what my soul was saying. My observation in a career in health care is that these types of conditions don’t just happen for no reason even though they are often seen as some external attacker.

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RunningRabbit7007 in reply to SnazzyD2 months ago

I completely see what you're saying. My life wasn't great before PMR. I had a job I hated, but couldn't give up. I only worked two days a week but the stress and toxic environment made me so fatigued it took me five days to recover, I'd be counting down the days til Monday, dreading walking in there. Now I can't work, the decision has been taken out of my hands thanks to PMR. I hope in the future I can retrain or do some voluntary work. Having said this, I am starting to recognise the futility of setting goals, I just have to go with it and accept this as the new normal as people say.

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DorsetLadyPMRGCAuk volunteer in reply to RunningRabbit70072 months ago

You can set goals…in fact we need to I think - just don’t make them unrealistic 🤔

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SnazzyD in reply to RunningRabbit70072 months ago

Ah yes, toxic workplaces. Say no more! As DL said I think we need goals but they need to be made with an open mind because your body might have other ideas on a given day and watch out for that word “ought” and being judgmental with yourself. Your goal is healing not training. I think you know that now. Do watch your ligaments too. I love a treadmill but watch for weakness in the small muscles that keep the foot stable that don’t get strengthened by perfectly flat walking.

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RunningRabbit7007 in reply to SnazzyD2 months ago

Thanks for the tip,. I'll watch for foot problems, they're dodgy to start with! Re goals, I'm just going to accept what I can do and not question it; take each day as it comes, no high expectations.

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Pandora2 in reply to RunningRabbit70072 months ago

Hi there R R, I really feel for you and the poor advice and treatment you have been given by the so called experts. It’s a year since I pulled around from similar experiences and at age 80 I am now gradually decreasing my doses of Pred and have accepted that it will take as long as it takes, I’m now at 4.5 mg daily and feeling pretty OK for my age. I have just purchased a treadmill and find it perfect for me. I can walk on a flat surface indoors out of any adverse weather conditions. I’m on 20 mins a day now and feeling good so you should manage well being younger. Go for it!! X

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RunningRabbit7007 in reply to Pandora22 months ago

Thank you I will! It really helps me to hear of your experience with the health-care system and its failings, and that you're thriving despite all of it. You and the other forum members have given me hope that I can get through this and still have a life. Thanks for your support x

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Pandora2 in reply to RunningRabbit70072 months ago

👍🏼 😬

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SnazzyD2 months ago

Hello, it is really unfortunate you spent money and got a rubbish consultant who told you factually incorrect information. I am so sorry your experience has been made worse for it. Guidelines say 50 and above and no, Pred is not a habitual drug. They may have been referring to the way people need to slow down their tapering at the end because of sluggish adrenal reactivation. Some people struggle a bit to come off Pred on low doses but they should have known not to use emotive language that clearly suggests it is addictive. I have met doctors who think it gives us such a wonderful high that we want to stay on it. They obviously don’t actually listen to patients. I don’t know what their specialism within rheumatology is but they also weren’t following any guidelines on reducing Pred and don’t understand managing a condition that typically takes more than 2 years to go into remission. Sadly, this isn’t uncommon either.

Your crash and burn was a common reaction when people feel much better on Pred and then go hell for leather trying to be normal and then some because of the Pred stimulant effect. Like many you found out the hard way but you are not alone there!

I think it is paramount that you seek some sort of psychological help because in the best of conditions it is a difficult path to tread because it impacts one’s life so much. Getting off Pred won’t make it better as it is your friend until your condition burns itself out. Most of us have had to face having to see ourselves differently and change our lifestyle after diagnosis. With an eating disorder I’d say it is even more pressing to have support or at least someone medical who knows what’s going on.

Now you are on 5mg you really need to be careful of adrenal crisis, especially if you are making your body exercise beyond its capability to produce cortisol for itself. Your collapse with diarrhoea after the gym could well have been that; it fits the symptom list. When you take Pred at higher doses your adrenal glands don’t need to provide cortisol for you because the Pred gives you more than you need. Cortisol is needed to get the body through stress of all kinds and without it we can’t live. Above 10mg Pred the glands switch off and when you get lower in dose, usually under 7mg or so, they need to make up the lack of Pred because the dose is lower than what you would produce yourself. For many this can be a slow process so any over doing it can leave someone feeling weak, shaky, anxious, nauseated etc . If you really over do it, it can be life threatening and you may need a rescue dose of steroids. It is really important that you speak to your GP and if you go out, always carry spare Pred and a card or alert bracelet to say you are on steroids in case you collapse or have an accident. Ordinarily, I’d just say pack in the exercising asap but I realise it is complicated, which is why you need competent advice and monitoring. At this level of Pred, pain aside, if you feel ill it is a warning sign you could be in trouble. I know it sounds dramatic but this is important to realise.

Please have another crack at getting a second opinion and GP support. We’re here of course and will listen or advise or when we can.

RunningRabbit7007 in reply to SnazzyD2 months ago

Thanks for your advice. It's everything I need to know and I will take it on board. I love exercise but I know I have to give it up and adapt to something else. I will order the treadmill and start slow ten minute walks. I just need to feel I can control something. I have a review with my GP 4th April so will mention the eating disorder/issues which have resurfaced. The Rhemy was a horrible man and it cost me a full consultation fee and a follow up. I will never go again. I suppose at least he did diagnose me. Not sure the GP would have had any idea!

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Koalajane in reply to RunningRabbit70072 months ago

I walk a lot. I started off walking for 5 minutes and have built it up. I use a Fitbit and aim to walk at least 10.000 steps a day. I love walking and meeting people on my walks.

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RunningRabbit7007 in reply to Koalajane2 months ago

Thanks for your reply. I will try walking, not too far, but build up to doing more. It sounds like something I could do without taxing my body too much. Thanks again.

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PMRproAmbassador2 months ago

"I saw the consultant, who warned me that pred was a habitual drug and I needed to be off it asap for my health. He said PMR would be gone in a year and I needed to taper my dose."

What utter drivel. And that is just that bit! The UK expert in PMR, Prof Sarah Mackie in Leeds, would have a fit at his comments. SHE has patients in their 40s and the youngest patient we know of with proven GCA, closely related to PMR, was a 37 year old male in S. Wales - trouble is, it was the pathologist who diagnosed it at post mortem. She also refers to the 2 year PMR myth. And pred is NOT "habit-forming" - your body needs corticosteroids to function correctly and makes its own via the adrenal glands. When you take pred as medication the body shuts down its production as it knows there is plenty there - in some ways like the central heating boiler swiches off when the wood burner is heating the room where the thermostat is. When the dose of pred falls to lower than the amount required then the body needs to get going again and like any other body part that hasn't been used, it has to get in training again and that can be a bit slow and erratic. The only thing that was correct was that you need to taper your dose - but with specific criteria: you are looking for the lowest effective dose, the lowest dose that managed the symptoms as well as the starting dose did.

Exercise isn't the be-all and end-all for managing weight when on pred - it is avoiding unnecessary processed carbs and added sugar. And why a treadmill? Walking in the fresh air is just as good if not better since it is a more natural movement. Plus weights are a bit dodgy - the pred only relieves the inflammation, the actual underlying disease process is still chugging away in the background and making your muscles intolerant of acute exercise and susceptible to DOMS if you over do it - which will happen a lot sooner than you are used to and take a lot longer to get over as the muscle fibres are unable to heal in the usual training process. (I assume you know all about that? If not, I will explain)

I agree with all Snazzy has said - that was a narrow escape from an adrenal crisis I suspect, If that happens again - try 999 and tell them you are possibly having an adrenal crisis - paramedics carry the required hydrocortisone to avoid you collapsing.

RunningRabbit7007 in reply to PMRpro2 months ago

Thanks for your reply, it's really helpful. Having read so much on here about pred and with your response I realise the 'specialist' was completely wrong! He made me feel as if pred was akin to taking crack cocaine. I'm a bit strange when it comes to outside exercise. I would never have the impetus to actually get ready and go outside. I also have titanium plates in both my feet from ultra marathon running. My feet are basically destroyed from running. I think the shock absorption from the treadmill would be kinder; plus having it in my bedroom I could just hop on it even in my pyjamas before I could make an excuse not to do it!

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PMRproAmbassador in reply to RunningRabbit70072 months ago

That's fair enough - just running on a treadmill is very different from other surfaces as it is the same every step so the muslces all over are being used in a very repetitive manner, something that can be poison in PMR. They need variation in demand so don't pound away at the same gradient and speed for more than a few minutes at first until you find out how you respond. And really do try to avoid developing DOMS as it can take weeks to recover when you have PMR.

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RunningRabbit7007 in reply to PMRpro2 months ago

Thanks, I will be careful. Really don't intend to run ever again, or not until I'm free of PMR. I have lost so much cardio vascular fitness, even walking slowly raises my heart rate beyond what is normal. I will start with a very slow ten minute walk. I just want to feel like a have some control over this and can achieve small goals. Thanks again for your advice.

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HeronNS in reply to RunningRabbit70072 months ago

Sorry you've got off to such a rocky start. Great advice already given so I won't repeat.

Because of our climate (I live in Nova Scotia) and the fact that my winter boots hurt my feet (they used to be good but my feet have changed, arthritic) I bought a small treadmill last winter. It's been great. Unfortunately the incline cannot easily be changed. I recommend if you get a treadmill that you buy one where you can easily change not only speed but also incline. My options are 3" or flat, neither of which is ideal for me, but being able to vary that with the press of a button would be nice, only it's much more involved to change it so I leave it at 3" all the time.

The other thing is solely on me. I tend to walk much faster on the "dreadmill" than when outside. Partly to get it over with. But that exhausts me which is not smart. Better to have a few shorter less speedy sessions than go all out in one, at least until you begin to regain your strength - which you will! Ten minutes, as you propose, does sound sensible.

As I'm sure you know some of the better treadmills come with built-in digital ways to entertain yourself when walking, but in my present home I'm strapped for space. If you elect for a smaller treadmill make sure you can either listen to or watch something distracting! (I listen to radio or watch tv. This is when I think I should find some fascinating podcast but not there yet.)

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RunningRabbit7007 in reply to HeronNS2 months ago

Thanks for the advice. It really has made me reassess my choice of treadmill. I was looking at one where you have to get off and manually change the incline - choice of three levels, but I can see from your experience, the drawbacks with this. I"ve found one on Amazon for not much more money that has 0 - 20 incline settings which you change on the control panel. I know what you mean about walking faster than outside on a treadmill, I've done it, when I was well, so will heed your warning. As for distractions, I'm positioning it in view of the TV. I'm in the UK but am obsessed with The Real Housewises - all franchises. It really helps to take me out of myself when I'm feeling low.

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HeronNS in reply to RunningRabbit70072 months ago

My problem is the treadmill has to be placed in the upright position to reach the feet that can be adjusted and I'm not physically strong enough to raise it all the way. Nor do I feel safe when I try to lower it again. In my former home I had a full sized treadmill which you could fold with great ease, it simply floated up, plus the incline could be adjusted while you walked. So I was a bit spoiled. Still don't understand why there couldn't have been a lifting mechanism on the current one - it was simply physics, no electricity required. Not sure even if I could lift/lower this one that I'd actually get off and make the change. It's good quality as far as it goes (brand Domyos) but it's not all I could wish for. Oh well, chalk it up to experience and know better what to look for if ever in the market for another.

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RunningRabbit7007 in reply to HeronNS2 months ago

Easy to be wise after the event. I'm not going to rush into buying one, will do some more research. Your experience has helped me with knowing what I don't want. I also wouldn't have the strength to keep lifting it up to adjust it, sounds dangerous!

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LucilleG in reply to RunningRabbit70072 months ago

My rheumatologist actually said this to me (from my bio)... "When I had the 3rd appt with them in April, they were not happy that I had gone up and basically accused me of being hooked on Prednisone. They said that I must be sensitive to it - that I "love it" and it was like cocaine to me. I told them I wanted off of Pred and I never got a high from it - it just took away the pain. They said I might say that I want off of it, but my behaviour said otherwise "you behave like you want it.""

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DorsetLadyPMRGCAuk volunteer in reply to LucilleG2 months ago

Crass remark from Rheumy…

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HeronNS in reply to LucilleG2 months ago

Unbelievable. How can someone with that level of education be so ignorant on so many levels?

Hope you are managing okay without their input now?

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LucilleG in reply to HeronNS2 months ago

Things are much better as we have come to somewhat of an understanding. I only have phone appointments with them every 6 months now, with my next appt being late summer. And I have been slowly decreasing, albeit at a slower pace than they’d like, but at least it’s going in the right direction. I just took my first 4.5 mg today and am using the DSNS plan. I hope things are going well with you on the east coast!

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HeronNS in reply to LucilleG2 months ago

Lovely sunny day but a cool wind. FB reminded me of our Winter from Hell (2015) where I guess today would have been a nice spring day if it weren't for all the white stuff. Not much snow around this year. Think Mother Nature got her coasts mixed up!

2015 was also the year (in June) I got the PMR diagnosis. It had been a very difficult winter on a number of levels.

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Missus835 in reply to HeronNS2 months ago

On March 15th I was thinking about 2015, the winter from hell. LOL.

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HeronNS in reply to Missus8352 months ago

The Ides of March.

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PMRproAmbassador in reply to LucilleG2 months ago

What an ignoramus! Just had a very wide-ranging discussion with 2 wonderful rheumies - they at least appreviate our desire for pred is to escape the pain and disability of the disease caused by the inflammation.

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tempusfugi in reply to LucilleG2 months ago

I do find those kind of remarks from 'professionals' somewhat frightening. What on earth sort of medical training have they received? Good to hear, though, that you've now come to a better arrangement with them. I hope you continue well with your way of dealing with PMR and that tapering goes well.

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Suffererc in reply to LucilleG2 months ago

what awful comments from a Doctor. 😕

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Highlandtiger in reply to LucilleG2 months ago

Good grief - not another one who thinks we enjoy being on pred. Has some sort of mad memo gone round rheumies recently?

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Gossiplady in reply to RunningRabbit70072 months ago

hi RunningRabbit! Well I can see our wonderful experts are giving you sensible advice as usual. I bought a treadmill purely because my jelly legs are not to be trusted if I go out for a walk. Started at 100 steps and increasing by 50 steps each day. One day I will with my Nordic poles, but not yet.I am coming up for 2 years of this awful illness, and have kept a full diary on my life good and bad . Am down to 2 mgs now , no pain or stiffness, just legs. Half a stone lighter now than before the onset. If we didn’t have this wonderful forum only God knows how we would cope. I recently saw the nurse at the surgery and casually asked “how much do you know about PMR?” Reply, “not much really”. So I won’t ask her for advice. Told her to look up this forum to learn about it. Meanwhile , my dear, keep strong and smiling. You will improve.

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RunningRabbit7007 in reply to Gossiplady2 months ago

Thank you, your reply made me smile and gives me hope. It's so heartening to hear about yours and others' experiences. I feel what you say about the treadmill, I will start out slowly. I would be too embarrassed to walk outside just now as I wouldn't know if I could get back! At least if I fail in the comfort of my own home I can slink back to bed without anyone knowing. I agree, this forum is amazing, I have read all the posts since I joined in August, but didnt feel able to ask a question until yesterday when I hit an all time low. I really feel part of this community now and it is a godsend. I agree, professionals lack knowledge about this illness and they could learn a lot from this forum.

Thanks again for your kind words and support.

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DorsetLadyPMRGCAuk volunteer2 months ago

As others have said much too fast a taper, and a rheumy who has some very strange ideas about Pred [unfortunately too many like him].

Maybe a a browse through this post - and look at the links as well, one about pacing yourself and another about tapering much more sensibly...

healthunlocked.com/pmrgcauk...

Plenty of info in FAQs about weight - and adrenals...have a look through

Stay on 10mg daily for a while longer, whether as one dose or two is up to you...and then taper - 0.5mg a time and following a much slower tapering regime as described in my link...

..and PMR is going to be with you for some time, so work with it, not fight against it....and you'll find life becomes easier...

RunningRabbit7007 in reply to DorsetLady2 months ago

Thank you, everything you say makes sense. Thanks for the links I will reread them and follow your tapering plan. Your last paragraph resonates with me; I will stop the fight.

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DorsetLadyPMRGCAuk volunteer in reply to RunningRabbit70072 months ago

Please stop the fight - it isn't easy we know that, but it really is a must.. and as we often say on here

Acceptance is not giving in - it's actually taking control!

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SnazzyD in reply to DorsetLady2 months ago

well said

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Missus835 in reply to DorsetLady2 months ago

Good answer DL. Acceptance and "rolling with it" has become my MO. Thanks.

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Pippah452 months ago

I exercise VERY GENTLY on a Rebounder. If my back is playing up (nursing injury) I sit on it rather than stand. My feet don't leave the mat at all when standing. It's called the therapeutic bounce. It gives the cells a work out without taxing the body.

With the weight thing I try to shift my thought pattern the word Diet is a huge red flag to me. I just adjust a little but as someone said earlier you almost certainly need an eating specialist to help. Pred is my friend but I don't always like everything about it! I am in my 4th year and on 5.5 pred. Attempts to reduce faster were pretty unpleasant and this great forum came to my rescue. Very best of luck.

RunningRabbit70072 months ago

Thanks so much for your reply. The rebounder sounds like a great idea and I will look at getting one. It would help me feel like I've done something but not too much that it would set me back.

I'm going to mention to the GP at my review April 4th about the eating issue, see if I can be referred. It's about control, and I always could control how I look and feel through exercise and healthy diet. I know Pred doesn't care for what we call 'healthy'. It helps to know you and others on this forum experience similar issues.

I've learned my lesson about reducing too fast now. I was reckless and didn't leave long enough between tapering. I just believed I was going to be the one who would overcome this quicker than everyone else! Thanks again for your support.

PMRproAmbassador in reply to RunningRabbit70072 months ago

"I just believed I was going to be the one who would overcome this quicker than everyone else"

Almost everyone does!

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Jayveedee2 months ago

I’m so sorry to hear your problems and I can’t really add anything to the more knowledgeable replies here, but I am one of the ‘lucky’ ones that is now off Prednisolone and I can only tell you mt experience. Like you I had been active prior to the PMR and it was a huge shock to have to slow down. I did keep exercising by taking slow walks on the beach as the advice on here was to keep moving. I wouldn’t have dreamt of lifting weights for an hour though! I didn’t do a ‘low carb’ diet, but I did cut out bread, potatoes and sugar loaded cakes. It would help you I think if you just did that. Things do improve (honestly), you just have to be patient and try not to do too much. Good luck! 😘.

RunningRabbit7007 in reply to Jayveedee2 months ago

Thanks for your support and kind words. Encouraging to hear from someone who got off pred. I think slow walking will help and make me feel like I've accomplished something in the way of maintaining a level of fitness. I like your relaxed version of the low carb thing and think it could be doable for me. Thanks again

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Jayveedee in reply to RunningRabbit70072 months ago

You’re very welcome and I’m sure you’ll soon feel better. As PMRpro suggested please try to get some fresh air. I know it’s cold and an effort to get ready but once it’s warmer it will be easier.

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RunningRabbit7007 in reply to Jayveedee2 months ago

Thanks, my son loves walking so I'll suggest we have a short drive out to somewhere scenic. I know I will feel better and his involvement will give me the impetus to get out there and do it!

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Jayveedee in reply to RunningRabbit70072 months ago

Perfect, and if you don’t feel strong enough for a walk you could take a book and read with the windows wide open. 😘📚

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RunningRabbit7007 in reply to Jayveedee2 months ago

Thanks, that's a great idea. I'm learning from all these posts and replies how to adapt life with PMR so I can still do things and feel more in control. I won't let it beat me!

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Jayveedee in reply to RunningRabbit70072 months ago

one of the worst things is not feeling ‘like myself’, and thinking your life has changed forever, but it hasn’t, and you’re still young. Just be kind to yourself, be patient and things will get better. 😘

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RunningRabbit7007 in reply to Jayveedee2 months ago

Thank you, I'm taking your advice x

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posthinking012 months ago

Hi so sorry you are having to go through this I really am. May I ask have you had your thyroid function checked - sometimes aches and pains etc. etc. can be as a result of low thyroid hormone.

RunningRabbit7007 in reply to posthinking012 months ago

Thanks for your reply, it's appreciated. I had thyroid checked about nine months ago and it was ok but I will mention this to the G.P when I have my review next month. I know a lot can change in a few months. Both my parents and my brother have underactive thyroid so it's worth exploring.

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posthinking01 in reply to RunningRabbit70072 months ago

Oh I get so frustrated that the medical profession do not look into the thyroid issues that could be connected with other diseases - I was nearly crippled with pains and hardly able to walk and went on thyroid hormone and pain went - I was in so much pain I could not turn over in bed without assistance and screaming with the pain. Good luck - push for it if you can.

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RunningRabbit7007 in reply to posthinking012 months ago

Thanks, I will!

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PMRproAmbassador in reply to posthinking012 months ago

It is actually one of the rule out diagnoses when diagnosing PMR.

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posthinking01 in reply to PMRpro2 months ago

Yes that is good - but unfortunately the blood tests result criteria is set to fail - years ago symptoms were used but after blood test result came in they rely solely on that issue - I was running at 12 and baseline was 10 but even though I had over 100 symptoms and some very serious I was not given the help I needed because I had sub clinical my blood results were being blocked an antibody so it didn't show up - I had to go to another country after 15 years of suffering to get help.

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RunningRabbit7007 in reply to posthinking012 months ago

So sorry to hear this, it's absolutely shocking. Hope you are ok now x

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PMRproAmbassador in reply to posthinking012 months ago

Yes, was tallking to my daughter about this the other day - her TSH level is considered borderline in the UK, would be treated here, or at least investigated more thoroughly.

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posthinking01 in reply to PMRpro2 months ago

Thyroid hormone is free in the UK and also the most prescribed drug - they are just trying to save money regardless of the pain and suffering we have to experience. Years ago they just treated the symptoms and the health of the nation was far superior to that now.

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Bluey-1 in reply to PMRpro2 months ago

Following our chat re my bloods, I am thinking this extreme fatigue over three weeks now may be thyroid / parathyroid related not GCA. It’s so hard to distinguish what is what. My GP catch up appointment this Friday was pushed back two weeks due to the snow day. I have a long list. Hope he’s not in a rush.

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PMRproAmbassador in reply to Bluey-12 months ago

Probably will be!!! But at least you get in the door which is a start. Take 2 copies of a bullet list summary, one for him, one for you. Put what worries you most at the top - and ask if he sees anything more worrying or linked

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Artnmusiclover2 months ago

I really empathise with you...most of what you have written I could have written myself. Tbh I needed counselling to help me grieve the loss of ability to live life 500 miles an hour, and was forced to retire from a job that required me to give my all. I deal with the pain better than the inability to do what I did. I will say hang on in there, and agree tapering is to be done at a slow rate unique to you. There is so much good support here and remember you are understood and in good hands...sending love 💐

RunningRabbit70072 months ago

Thank you so much for your reply, kindness and empathy. It really means a lot to hear from people who have been through this and understand, it gives me hope x

Olympian2 months ago

Hi so sorry you are suffering. Personally I was diagnosed with PMR in April 2021 taking 12 weeks to finally get this .However since then started on 15 then 12.5 then 10 then tapered very very slowly and only now down to 3. This very slow taper for me has been perfect and no flares.I am retired so a relative easy life no stress no work able to rest when necessary. I really do think the slow taper is the way to go but of course we are all different.Good luck and better healty

RunningRabbit7007 in reply to Olympian2 months ago

Thank you for the reply, it's appreciated. Good to hear you are doing well on the slow taper. I am taking your advice and others on here and going back up to 10mg, then tapering very slowly 0.5mg. It helps to hear the sort of timescales you all work with and gives me perspective on what is realistically achievable. I know I've gone too far too fast. Thanks for your support.

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Bravedave2 months ago

Hi there, I struggled to get below 5 mg prednisone several times until I was put on a plan called the Bristol Steroid Reduction plan. It is a very slow tapering system over 6 months. ...5mg for couple of weeks then 1 day out of 7 ..4mg back to 5 ...very slow but im now on 3mg mostly with the odd 2 thrown in and so far so good for meSo maybe ask your rheumatologist for a printout.

Ive had PMR for 3 yrs and really looking forward to being pred free.

Good luck

PMRproAmbassador in reply to Bravedave2 months ago

That is basically the DSNS reduction plan I developed - I've never heard of the Bristol steroid reduction plan other than this

rcpe.ac.uk/sites/default/fi...

which Prof Kirwan's then trainee rheumatologist Vanessa Quick published but it doesn't go as slow as that in the paper

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Bravedave in reply to PMRpro2 months ago

I was put on this by a Rheumatologist in NZ..seems to be working so far

Black print

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Bravedave in reply to PMRpro2 months ago

Page 2

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DorsetLadyPMRGCAuk volunteer in reply to Bravedave2 months ago

As stated by PMRpro much as her DSNS method - and my Simple Taper[s]- but we would both recommend only 0.5mg reduction as you get to very low doses - you’d be surprised [as would many doctors] how much difference that makes.

I admire you optimism at the bottom of page 2, let’s hope it’s warranted. 😊

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Bravedave in reply to DorsetLady2 months ago

Thank you very much for that advice,I will take that on board and do 0.5s ..am definitely open to any advice I can get..cheers

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RunningRabbit7007 in reply to Bravedave2 months ago

Thanks for your reply, helps to hear from others who have been there and are surviving.

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PMRCanada2 months ago

Sorry to hear you’re having such a difficult time of it, but I’m not surprised given the medical instructions and information you’ve been given. Others on here have clarified how PMR presents and is experienced by the patients who are diagnosed with it.

You are still relatively early on in your journey. Over time you will learn to better listen to your body and make the necessary adjustments with physical activity as to avoid DOMS, and tapering as to avoid flaring.

We all must advocate for our health and our symptoms rule over blood tests (although some folks find these results to be helpful if accurate).

In the beginning months I felt a range of emotions from fear to anger and denial, sadness and ultimately acceptance (this took some time). As someone who liked to have power and control of my fate it was important that I learned what I could control (eating plan, activity, rest, and who I got support from). I let go of the notion I could control how long I would have PMR or the level of disease activity. I also had to learn to adjust and accept uncertainty….a big one for me. I still plan however I have built in flexibility and am able to say “no” when I need to.

My daughter (a nutritionist) helped me devise a LOW carb/sugar/salt eating plan complete with sample menus, to address my obesity and high blood pressure. She said it was important that I didn’t attempt to completely eliminate food groups (“low” vs. “no”. This resulted in a lifestyle that was sustainable.

I also started engaging in physical activity like walking and deep water exercises that proved to help with my mental health and overall goals (yes, we can still make goals).

Managing my PMR with enough pred while slowly tapering was also key, and even when I got stuck at 9mg for over a year, I explored other steroid sparing medications to assist me. Getting yourself stabilized at a dose that addresses your current level of inflammation is a key starting point. For you that may mean starting back at 15mgs or wherever you were at with little pain/stiffness. Splitting your dose may help eliminate morning stiffness….it does for me (I did discuss this with my GP before starting). Finding a good balance of activity and rest will help you better gauge where you are at.

All this to say you things may very well get better with accurate information and personal and professional support. I always feel so bad for the healthy, active folks who are struck with PMR that causes our immune systems to attack our joints and tissues causing muscle pain and stiffness in our major muscle groups. How awful it must be to suddenly not be able to engage in fitness routines that are a big part of their lives.

Add to this the complexity of an eating disorder and fear (or reality) of weight gain as a side effect of the main recognized treatment (pred). As others have mentioned, perhaps professional support would benefit you in your situation. Body image/self image can be very much a struggle for folks, but comparing oneself to others who may be experiencing a different PMR journey is not helpful.

Although we all identify having the same condition, our physiology, mindset, life circumstance, identified support, and reactions to medication are all different. Be patient with yourself and know that you are not alone. We are here for you and “get it” more than most others who don’t struggle with PMR.

RunningRabbit7007 in reply to PMRCanada2 months ago

Thanks so much for your reply and advice, it's appreciated. Everything you say I can relate to completely and it helps to hear from others who have had the same experiences, makes me feel I'm not alone. When there are so many people who don't understand it's a comfort to find people who do. I'm learning not to fight this illness and just go with it.

Thanks for your support. x

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Bravedave2 months ago

Here is page 1 ignore the dashes

Black print over white background

Bravedave2 months ago

Page 2

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DorsetLadyPMRGCAuk volunteer in reply to Bravedave2 months ago

As PMRpro says not dissimilar to her DSNS taper -nor my Simple Taper[s]…except we usually recommend 0.5mg reductions at very low doses.

I admire your optimism at the bottom of page 2….fingers crossed it’s warranted 😊

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Grammy802 months ago

So glad you are here!! You've received some wonderful and supportive advice. I'd be lost without the forum and .... Welcome!!!💞

RunningRabbit7007 in reply to Grammy802 months ago

Thank you so much for the welcome. It is good to be here! I agree, the forum is a godsend and everyone is so knowledgeable and supportive. Glad I found the confidence to post a question!

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