I have just posted this on another thread. How our bodies and muscles in particular, react to this drug is critical to the way we need to address dosage and approach.
Here is my take on how this condition moulds us and progresses.
Confusing symptoms occur and they are similar to many conditions so diagnosis is often delayed, sometimes by years simply coping with increasing debilitating pains, stiffness or worse. We try to control pain through osteopaths, physios. acupuncture, alternative options and painkillers. Ultimately we discover PMR and GCA autoimmune conditions most have never heard of and for which prednisolone is the only relief. Some initial doses are eye wateringly high 80-100mg. some are too low like mine at 40mg. In nearly all cases it seems the consultants try to reduce too fast or the patients start off that way and flares occur. As realisation dawns that we are in for the long haul we need to take other drugs to regulate heart beat and blood pressure. Statins for liver damage are needed and diuretics for fluid retention plus others all adding to the mix and confusing our bodies. Our bodies are now no longer healing themselves automatically as they were but actually attacking themselves and we need the drugs to counter the effects. Balancing the states now is key. We have to work out what is happening at each stage and adjust dosing and type accordingly. If like me you had a condition like cellulitis when younger then it sits in your system for life and 50 years later because of damage or the weakened immune system decides to rear its head and further complicate the current condition.
The fluid retention in legs comes alongside muscle wastage from pred. The loss of balance is down to a slower response to nerve messages and the muscles not responding to the brains instructions. The lack of activity worsens the wastage and weakening and contributes to the fluid retention which cannot be cleared by the lymph system because of poorer blood flow from a weakened circulatory condition. This is caused by the pred. and less activity. Puffy legs and feet make for less flexibility and an unsteady feel which hampers proper walking and exercise, balance.
All in all it is interrelated and complex. No one person reacts in the same way as another and each needs to adjust to circumstances which suit their metabolism and physique. Not enough research is being done at the neuromuscular level of muscle response to pred. and I am convinced that by tuning exercise and dose to match an individuals response is key to improving our condition whilst suffering and post pred. state. There is clearly a genetic predisposition as to how we react to pred. and how it therefore debilitates us or otherwise. The later we start on pred. and the longer we take for remission plus the time we suffer whilst waiting for diagnosis the worse our state during the illness.
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cycli
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Sorry to hear it! I know how that feels. Although I have found moving about a little less painful over the the last two days. I changed to Methotrexate injections two weeks ago and hope that I will continue to improve. I have the weakened muscles, fluid retention etc, and I am trying to break the vicious cycle that you describe so well. It’s very disheartening when you realise you are not progressing in the way that you hoped.
I think my instincts parallel your thoughts. I have frequent asthma flare ups, that they are attempting to control with 4 week pred courses. So I lurch from attack to attack.
When in good form, I attempt to increase the exercise levels to help my body recover from the pred course. I kick off with gentle swimming, increase it, and then do 20 minute walks, slowly lengthening. In the summer I even got up to a 5 minute run, albeit in a gym.
I agree completely with everything you've said but for people new to PMR and this forum I think it's also important to reassure them that they won't all experience all these side effects themselves, or be completely debilitated by pred. As you touched on, we're all individuals with unique circumstances and unique health issues so we'llall react to pred differently.
I know that many of the side effects can be successfully managed, either by preventing them occurring in the first place, deploying strategies that will ease them or in some instances, actually eradicating them completely.
I am of course very aware that there will always be some people for whom these actions won't be effective but it's still important to have hope and belief that you can to some degree influence some of your outcomes. I know this to be absolutely true from my own 4yr journey (and counting!)
Pred can do a lot of damage but in many instances the damage is not usually as severe as expected, particularly if you do your research and take some measures to avoid any potential problems.
Understand and totally agree with you Kendrew. these are simply observations on how I have reacted and my thoughts on the journey so far and conclusions I have drawn. I expect to improve and progress, but at the moment it feels like a very long haul.
I can't obviously speak for anyone but myself and can only relate it to my own set of circumstances.
Firstly I know that glaucoma can frequently be present as a result of diabetes, and diabetes is frequently linked to weight gain and diet.
Steroids can both alter how you metabolise foods and can also make you feel hungrier than usual which in turn may make you eat more. If you eat more then its quite likely you'll gain weight.
So for me, the key to attempting to prevent these things happening was to ensure I ate a healthy, appropriate diet and didn't gain weight. (I also have regular eye checks)
I quickly learnt that just cutting calories didn't work so well and so began a very low carb (but not no carb) diet with lots of the right sorts of fruit and vegetables..... selecting carefully what fruit and veg I chose based on their natural sugar content. I cut out pastry, bread, pasta, rice sweets, cakes, biscuits etc....although of course still have a treat from time to time.
I have maintained my weight and blood glucose level has remained normal over the past 4yrs.
As for osteoporosis.....I already had evidence of some osteoporosis before diagnosis and a DEXA scan showed some further deterioration so I was immediately put on Alendronic Acid.
I'm pleased to say that a calcium rich diet and regular, moderate bone strengthening exercises has meant that 3½yrs later another scan has revealed a significant improvement in my bone density readings and has taken me out of the osteoporotic range and into the osteopenic range. Obviously the AA had some impact on this improvement but as a result, I'm no longer taking Alendronic Acid or calcium supplements and regular blood tests have so far shown that my diet is still providing me with enough calcium to not require supplements. This of course may change in the future.
I did a lot of research beforehand and have put measures in place to minimise my chances of developing many of these other side effects. They're obviously not guaranteed to always work and I may find I too develop diabetes later, but for now I feel that maintaining a healthy weight is key to staving off many of the potential side effects of pred.
I know not everyone is well enough or in a position to exercise daily... all be it gently!.... or to monitor what they eat so intensively, but my interventions are working for me so far with regard to glaucoma, diabetes and osteoporosis.
PS. I do have steroid related cataracts though, at a very early stage..... despite wearing glasses with UV filters on the lenses!
Hello Kendrew. Thank you for your input. I have been pre-diabetic for several years, in spite of doing everything one is supposed to do to avoid diabetes. I was shocked when I found out. I'm underweight, exercise religiously, eat a healthy diet, but the numbers don't change... Also, I was diagnosed with advanced osteoporosis ten years ago, again in spite of doing all the right things to avoid that. My reading is -4.2! At one point, bisphosphonates were recommended, but I refuse to go that route! Talk about rat poison! The one thing I have not done is have my eyes checked recently. I have been avoiding it because I'm afraid of more bad news, but your suggestion hit home and I will make an appointment to see what might need to be done. Thanks again!
I have never heard of anyone my age being able to actually grow bone once it's lost. I have done years of strength training and taken supplements, but I have only managed to slow (or halt), continued deterioration. That is why I am so afraid of Pred. A broken hip or back will change my life forever,,, How old are you?
It is definitely possible to strengthen and improve bone density and as you have already said, weight bearing exercise and strength training are very effective. I've sent you a simple link. Also take a look at 'Osteoporosis ' in FAQ'S.
I'm 65 in March.
It seems you've already been doing all the right things though but unfortunately, there will always be some people who are always going to be more predisposed to conditions like diabetes and osteoporosis and sadly this may mean that it's much more challenging to affect any significant change. You may be one of those people who fit into that category.
I'm sure your efforts will be helping to slow down the progression of osteoporosis and although I agree that biphosphonates are extremely toxic...as are steroids!.....we have to weigh up our own individual 'needs' and the considered risk if we decide to not take these medications. I very reluctantly took Alendronic Acid because after researching my situation and the condition itself, I felt I had no choice at the time..... fragile bones that may break with a simple sneeze was not an option for me and would only have rendered me even more incapacitated. So I took them for 3yrs (with no side effects) and when I dropped into the osteopenic range I came off them...my decision, not the GP's.
You have to figure out what the consequences may be for you should you not take biphosphonates and then weigh them up against the risk of experiencing some side effects should you decide to take them.
Not easy to do, I know.
Whatever you decide, I wish you well and hope you find a way forward you're happy with.
Not sure what you mean by "grow bone". Bone is a living tissue and is constantly being broken down and replaced - if the turnover gets out of balance and minerals are lost from the bone, the density falls and may reach the level that is defined as osteoporosis. It is possible to increase bone density whatever your age by lifestyle and dietary changes and, when necessary, by using medications that slow the breakdown. There are a few that actively build bone.
When on pred, a normal "healthy" diet is not enough to avoid steroid-induced diabetes, dietary measures must include cutting carbs, sometimes drastically. Pred causes spikes of glucose to be released into the blood from the body stores of glycogen. You can't control that but you can control the contribution made to blood sugar levels by diet. There are a lot on the forum who have been successful in reducing their Hba1c by doing so though it does require discipline.
Glaucoma - above all have annual eye pressure tests to see if it starts to rise and then it can be managed with drops. Diabetes - 6 monthly Hba1c blood tests will signal rises in average blood sugars. OP - have a baseline dexascan to see the status. Then take calcium and vit D at least and other medications as appropriate.
Agree with Kendrew comments, we don't all have the same issues.
Although it took 18 months to get a diagnosis, starting on high doses of Pred, taking 4 & half years to get to zero [no added extras], I certainly didn't get as many issues as many other do [including you].
In fact, I consider myself very lucky in that compared to many others I almost sailed through my treatment [Sorry, probably not what you want to hear at present].
I did lose some strength in my legs, but no issues with fluid retention etc..and Pilates and ability to walk regularly [until the dread OA returned, but that was a couple of years after remission and Pred] soon remedied that.
So I have to say your last sentence doesn't reflect my situation, and hopefully it doesn't for a lot of others.
As always good to hear the nicer side if it can be called that. I love the way you have accommodated the lost sight so positively. All credit to your spirit DL
As you know -we can’t give in. Not in my nature, nor yours, so you will get through this . Just because I didn’t have your issues, doesn’t mean I don’t sympathise.
Keep strong… things will get better… that’s a Viking Goddess’ promise…
As the years elapse I become weary at times. Only human...and then apply myself to a hobby or some other interest.."Spirit-Mind-Body" alittle of each every day Thank-you all
Yes, do not despair, folks... I've no idea of the statistics, but I have had very limited side effects while on Prednisone : about 1.5 kilos weight gain, trouble staying asleep at night and some whooshing or whistling in ears noticeable only when I'm sitting in a completely silent room or lying in bed waiting for sleep to come. (Full history in bio).
I was not an athlete like you, Cycli, but physically relatively active: walking, Pilates, line-dancing, e-biking in good weather ... and I can still do all of this while on Pred. I definitely have a bit less energy than before, but pacing is the key for me. No unreasonable expectations. Instead of walking 3 hours, it's now 1 or 2.
Thankfully, I have retired, so no long working days to cope with. And life isn't so bad all things considered. Obviously I would love this condition to go into remission, but at least I can still enjoy life without debilitating pain.
Am I misunderstanding you? I don't think you can blame pred for some of those things - in particular, the poor balance. I had balance issues that were legs/arms no moving as fast as the brain expected as you put it and they certainly weren't anything at all to do with pred, it happened years before I was offered pred. The 5 years of PMR/nopred perhaps helped me accept the downsides of pred because I was able to make it my friend when it gave me my life back and removed most of the pain.
I do have some of the issues you address - again, not entirely due to pred. I was still pretty active and my endurance was not bad until the year before Covid when other factors had already reduced the exercise I was doing. Covid made it worse and you know the next instalment of the story. Last winter I was improving again though a more driven spirit might have made it faster! But then I had a massive flare and have been held back by that and its repercussions. Once you are incapacitated it is a very rapid downwards spiral and without a lot of the right support it can be disastrous. That support may be medical/physical or mental. But currently it is not recognised or offered.
title says it PMRpro...not all pred. However, balance issue is one significant side effect of pred. induced myopathy. I never had balance issues before this even struggling with multi symptoms before diag. Something is complicating my condition and needs sorting but I struggle on trying to outthink it and cope. I will get there but it's quite an effort just getting by at the moment. Rex, my collie, is in a bad way, we think internal bleeding, probably ulcer. He's on omazaprol 50mg daily to cut stomach acid and blood count red cell 20 when a low is 30-40 and normal 40-60. Happy days
I had balance problems at the start of my PMR journey but prednisolone helped with that. I haven’t put any weight on and walk more than I used to so somethings are good!
Good piece you wrote and for me, suffered many of the same symptoms AFTER starting Pred. Mind you, because was blind from GCA (not being diagnosed early), was on a very high dose of Pred to start. Being a person until then, not taking any drugs at all for 77years, perhaps it just hit my hard. Initially, swelling feet/hands and loss of balance for sure. (have the scars for to show) It hit me like a whammy and had never experienced anything like it before. Had enjoyed a very active life: golf/curling/swimming etc. just like many of you: the difference being that had never had any health pbms until PMR/GCA. Once the drug hit my system, threw me off. So perhaps not everyone experienced this, but I do agree with you on that. TCZ aided in me getting off Pred and nice to see that the swelling has ceased and some of the crippled fingers are not so painful. (can't grip a golf club anymore) Now happy to be walking without the aid of a stick although do keep it handy "just in case". So good luck to you, and think it was good that you put your thoughts on paper. Not everyone experiences the same but this was a good outline. Good health to you.
Oh no. It could be worse so we must be grateful for the good side. We just get on with what we have: just a few adjustments along the way. Enjoy your canine in meantime,
So sorry. It’s the last act of kindness you were able to do for him and however hard it is at the time I'm sure it's been the right decision for Rex. ❤️ 🌈
thankyou. First supper in 7 years without Rex curled at my feet like the baronial hall meals you see depicted. He didn't have a bad bone in his body and probably irreplaceable.
As PMR stated, yes, you can make another feel wanted, in time. Enjoy your memories of Rex in the meantime and when you feel able, you will know when the time is right. Another 4 legged creature will be waiting. Think we have all been through this and do send condolonces but Rex likely smiling as he crosses the Rainbow Bridge. Chimo
thank you. its's been a hard day. we all know the feeling . It's because of that total trust they give you that makes it worse because you feel so guilty you couldn't make them well. He knew how bad I was at the moment and gave me total comfort during his last days and I tried to comfort him likewise. Makes me well up every time I think of it.
I’ve been told by my rheumatologist that my poor balance and lost of muscle tone is related to pred. I walk 2-3 miles daily and do Pilates weekly in addition to arm and keg strengthening exercises all seemingly to no avail. However it would probably be much worse doing nothing. Unable to get below 10 mg pred pd despite Mtx. Patience required.
Obviously depends on the individual. I was very fit active and healthy 5 yrs ago before PMR struck. We all have such a spectrum of symptoms. Hopefully onwards and downwards pred wise for all of us.
I was pretty fit - at the gym 5 days a week, did aerobic classes and weights, the cross-trainer. It was the cross-trainer that finished me - went to use it to get ready for the si season and after 2 minutes the claudication pain in my thighs was unbearable.
Hi Heron. Yes, me too and for some of us the pred.is central to balance loss. If I close my eyes I will have no sense of my alignment to vertical and start to fall. I need to see where to put my feet and my orientation . I never had to do this before and always knew without looking.
I fell a few days ago in my living room and cracked a rib on the edge of the coffee table. I don't understand how it happened really (though I was in stocking feet on a parquet floor, not the wisest of moves) but maybe dizziness due to Pred, or adrenals struggling??? I'm on 7 mg. I've just been out for a walk and when my gaze was up searching for birds in the trees, I veered off course completely!
It's the balance your ears or cochlea automatically provide that is affected. Looking up seems to negate our sense of place and orientation in the same way as closing your eyes. It's a facility that drugs affect and the slowed response due to the neuromuscular response as a side effect of PMR and GCA work to complicate our responses.
hi.I have to say my first reaction on reading your post was that I'm glad I didn't read it when first diagnosed! I guess I would probably have been in despair.
I think that, after seven plus years on this Forum it's those with all sorts of co- morbities that suffer the most, and it's not always possible to know what's what.
Having said that. Your last paragraph, pointing out that we all react differently is certainly relevant, and should always be born in mind. I was 74 at time of diagnosis and experienced very few side effects; such as there were, were to do with fatigue which was presumably, a combination of the pmr and prednisolone, and could be mitigated
Quite agree. Sorry it is a little depressing . I'm only trying to express the reality and in truth it may even help those experiencing similar buut thinking they might be the only one. This is certainly a complex condition to get ones head around. Interesting problem.
Hi. I am glad you posted this. I am one of those who.has been looking at the pred lately because of new issues. I have sores in my mouth that are beyond painful and wake me up a lot. My legs are swollen and the skin thin and narly looking...and one leg is now weeping. My right knee is screwy...not sure what is happening but I can barely walk on it. So..no idea I didn't injure it....I do think the pred is part of all of this. My balance has been off for quite some time. I went to my GP and he gave me treatments for my throat and water retention. So we will see how it goes. For me I have never reached the sweet spot with the pred. I got screwed up on the dosing because while I had improvement when I first started my rheumy pushed me down too much too fast and it has been a nightmare. What happens is you never get relief....and things get more complicated. You try to figure out what is PMR versus something else versus pred......I think it is wonderful that we have pred! But I do.agree that there are those who.will experience bad side effects and what is key is having a sense of what is going on with your body. I don't read your post as an anti-pred post but just another piece of information and another experience. I have read about pred and your info fits with what I saw. I am trying to start Actemra because my RA is an issue but these infections ...still working on skin thing too....need to resolve before I can. So last night I was thinking about reducing the pred in conjunction with the treatments for all of these things to get me closer to Actemra. I am hoping that med with the pred might bring me the.allusive PMR symptom reduction at a level many of you have had.
For those who know the.dosing info...my GP said I could drop down quite a bit on the pred dose if I wanted....I am at 27.5. How much.do you think? I think reducing it could help.
As I understand it you will need to be taking actemra in conjunction with pred. in order to reduce faster.Not reduce pred and then get the sparer. others on it can advise better.Good luck and completely understand.
Yes you are right. But the pred is not working and I have been on this high dose for a loooong time. My concern is the pted is slowing the healing and without the healing I can't start the Actemra.....see what I mean?. So with the treatments now on board reducing the pred might help since the pred slows healing. I can always go back up but I think I need to try this.
That's our situation in a nutshell. I understand and agree that at some stage the experts need to take the lead from us . If you think that will work then you must try. Good luck.
Didn't find your post depressing at all, in fact comforting to know I'm not the weird one experiencing every side effect going. Then there's my doc giving me strange looks and new meds that make no difference when I describe my health issues. Despite already having insulin dependent diabetes (41 years) and reasonably active, I had not expected to be hit with GCA & PMR together which to be honest knocked me sideways and changed my life completely. I was told Pred accelerates the aging process, and sure enough I both look & feel 10 years older in the 2.5 years I've been taking it. Not wishing to depress anyone starting out on this journey at all, and it's unlikely many will feel like me after this long, but I think it's fair to warn that it could be as bad as this and I know I would have appreciated knowing this myself from the outset.
I'm so sorry to hear about Rex. Animals are very special and give us so much unconditional love. The Rainbow Bridge story was beautiful. Thank you for sharing it. 😊
Hi strawclutching. It's reassuring to know others share the worst and that we can share this. I'm sure there is a better place we can all attain but the journey is sometimes quite hard.
I guess, I have to add my thoughts here and sorry, not really been around the last few days as been a bit preoccupied the with the loss of my Border Collie which has left me pretty devastated. However, to the point, I'm 2,5 years into this journey and although, to some/most doctors/medical practitioners that may seem to be a long time, in reality I've had relatively few problems. I had a few days at 15mg then upped to 30mg by my doc (see bio for more details). I am convinced that my initial high, short term doses, have helped with a quick squashing of the initial problem folowed by slow and controlled tapering from then downwards. No pressure at all from my doctors to get off, taper quickly or anything else, totally supportive. Yes, I've/we upped the Pred for specific reasons CTS the main one and I probably won't be off it for, at least, another twelve months, if all goes well!!!
Pred has given me, in real terms, a normal life, after the first few weeks. I've walked many miles with my BC, every morning/day, continued with work I do, part time and as I say led a generally normal life. I've been lucky and I fully understand that not everyone is in this situation. This is/ can be a very indidual disease/ailment which hits people in different ways. I guess what I'm saying is, if you are new to this you will not necessarily get the possible side effects that can happen and get the problems that others here, have/are suffering. I do have to add I have PMR not GCA.
Just to add none of the above would have been possible without the amazing people on this forum.
Good post Bcol. I grieve for you over collie. I'm hoping we can get Rex well again. He is so off his food, quite unnerving. Don't know what I will do if he gets worse.
I will keep you and Rex in my thoughts and prayers. Hopefully Rex will.find his food again....so the meds can work and he can gain.his strength back. Take care of him and yourself. 🌻❤️
I am so sorry about your loss. Our relationships with these wonderful creatures are so pure and the grief we feel is overwhelming ...they are ever present so you see them everywhere. I wish you peace of mind and heart and nothing but.wonderful memories. Be kind to yourself.
I just want to say THANK YOU. Of course, we don't want to imply that this is everyone's experience. In fact it seems to be a minority (and a small one at that) BUT for those who have had side effects from the pred it is very reassuring to know we are not alone.
I am still battling severe steroid induced muscle myopathy (which arrived in the first couple of months at 60-40mg. Now at 4mg after 3 years) but when I continually read about people walking x thousand steps, cycling, swimming etc...I am left wondering what I have done wrong...have I not tried hard enough...am I a wimp? But then your post reminds me that this is just what happens for some of us.
We have as much responsibility for our physical decline as we had over the arrival of PMR.
I find exercise extremely problematic but I am grateful to someone on this forum who recommended a qi gong video. I like to think the minimal leg exercises that I have done every couple of hours for the past 3 years has prevented further deterioration...but certainly nothing has improved.
Thank you also. If I can get the swelling down to near "normal" then come hell or high water i'm going back on the turbo and just plough through to get some exercise. I'll have to sort the achilles tendon first though.
I can't tell whether I am one of the pred damaged yet but I suspect that I am. My body seemed to start to decline in new ways after about 12 weeks of pred. Consultant Rheumatologist has decided that I no longer have PMR (and nothing in my blood tests dissuaded her). She has told me to reduce by 0.5mg every 3 weeks until I am off. A nasty process but, if I can stick it out, I might discover whether my muscles, tendons and ligaments start to recover. We will see! Very sad about your struggles xxx
What dose are you on? All the markers are showing is that you are on enough pred at the moment, not that the PMR is gone. And 1mg is plenty to keep that under control if the activity is low. But there is also the return of adrenal function to consider - and adrenals rarely cope with a reduction of that speed. Never mind the PMR.
You can also fight back, which I have had to do numerous times with my doctors. The only person that will advocate for you is YOU. I have negotiated with doctors (4 weeks between drops vs. 2 for example) and told them no numerous times (not willing to take methotrexate). I have changed doctors until I found one who would listen to me. At a very minimum, they need to know if this taper is making you sick (adrenal symptoms) or what symptoms are returning. Don’t just blindly follow. Do as much research as you can. Know your symptoms and condition and ask lots of questions and don’t settle for being ignored or being treated badly. (not saying that your doctor is doing any of that but i have experienced it from several.)
Well said, the things that come with Pred are not good !, Wish i had known before i jumped in head first to get rid of the pain.I honestly would have thought long and hard before taking them !
Couldn't agree more, the problem will be persuading some body to provide the funding for the research into something which probably isn't going to make someone lots of money.
Isn't that funny. I've been thinking similarly lately. When you see how people lucky enough to win just waste it I am staggered at what could have been done with such bounty
You may think you understand, but to be honest you don’t…. you haven’t walked in my shoes, any more than I have walked in yours.
We all have different experiences, and different choices to make in life….but on here they can be discussed …and if not fully understood at least we gain an awareness of others struggles.
And we are doing our utmost to advise on side effects and how to manage them.
so true. Being informed still doesn't replace the experience. None of us would wish this on another, but if they just knew how it felt they would really understand. It is essential to keep discussing and sharing whilst recognising it's different for each of us. I'm intrigued at how much useful info has been teased out on this thread.
I have not heard that loss of sight can be a side effect of prednisone. Am I misunderstanding you? I was warned about GCA…so far I don’t have that. Please clarify for me. Thank you.
Yes you are misunderstanding -loss of sight is not side effect of Pred
I had already lost sight in one eye due to 18 months of being misdiagnosed by GP.
When it was finally diagnosed in A&E - there was a great possibility that I would also lose sight in other other -and I was on 80mg of Pred for 2 weeks until ophthalmologist was certain it had been saved. Then other 8 weeks on 60mg before taper started
Would you really? I think it depends on how long it takes to be diagnosed and offered pred. I'd had it for 5 years before pred - I can still remember that first dose of pred, taken at 10.15am, standing outside the pharmacy. I got home, crawled up the stairs on hands and knees and worked at the computer until about 4pm when I stood up and walked downstairs, made a cup of tea and carried it back to the computer.
And then I realised what I had done - walked down normally and carried the mug back up normally - not stomping down like a toddler one step at a time or placing the mug as high as I could reach and crawling up to it. It was a few months before all the pain when walking had gone - but I was immediately able to turn over in bed, stand up from the toilet without risking dragging the washbasin off the wall, take a cup out of a cupboard. It gave me an almost normal life back, something I'd not had for years. It definitely colours your view of pred believe me.
I'm at that stage again PMRpro. one step at a time, trying to take stuff with me and putting as high on stairs as poss. Just waiting for blood test on 3rd and FtF with GP on 6th for assessment. Expecting result will show higher CRP and ESR.
I honestly think it was the stair stomping and crab climbing that did me a lot of the damage that I struggle with now. I used my body in the wrong way and distorted it?
We have to retrain ourselves to do it properly, but only when we are ready. I can't rotate the right ankle properly due to the achilles tendon. Don't want to ping it again. Too painful
I keep trying every so often but it still seems to cause more harm. I may have just got rid of a problem that I developed in September by giving myself another one.
It certainly is unlikely to have done your back any good!!! As cycli says, physio retraining is needed. I have been very lucky here with that. My physio sent me off to do aquafit classes in addition - they really have helped.
My exercises were set by an NHS physio. They make logical sense but seem to do me harm. I am now on the waiting lists for 2 other physios (one spinal and another as a follow up to the chap I saw in the summer).
Hmm - I know exactly what you mean, I have had bad experiences with NHS physios in the past, One of the things that I think is important is an engaged physio who understands PMR - anyone who is a patient of Sarah Mackie does have access to a superb team but in general in the NHS they can be poor. It is one of the things that is really precious to me here. One by one my current physio is sorting the problems that developed over Covid lockdowns and then crashed like a landslide this time last year. Had I got to her then it would probably have been less onerous for both of us. I finally reached her not so gentle ministrations last September when I could do very little. Between her and the Pain Clinic I am more mobile than for a long time!
Did your GP refer you to the NHS physios, I ask because mine has just referred me and I have a telephone assessment on 21 Feb. I was interested to read that you are on the waiting list for a spinal physio. I have spinal stenosis and have been offered an operation but wondered about asking the GP about a referral to a spinal physio. too.
Via my Rheumatologist. I had a phone assessment for the first one last Spring. The latest 2 referrals are still in progress but I can't tell which is which. One has been triaged for Routine Advanced Practitioner. The other one is on the worse hospital waiting list. I am meant to wait until late March to chase it up. I guess that is the spinal one and don't know whether it is urgent or routine. I have scoliosis which is what triggered that one.
The same here, I didn’t know until it was picked up on an X ray last year. When I was a child I was always being told that I was round shouldered, a GP told me that if I wasn’t going to pull my shoulders back I would have to have a brace.
In my early 20s I was told categorically by an ancient locum orthopod in Scotland that I had nothing at all wrong with my back - even I can see the scoliosis on x-rays!!!! Luckily they are rather better here!
I have no idea!!! It wasn't good outing altogether - I was x-rayed despite having said I was in the second half of my cycle and it was possible I was pregnant. Apparently I had been ... But a few years later a Germn GP told me to see a local orthopod and he was brilliant.
We installed a stair lift for very ill husband. I used it because I cannot manage stairs without two railings. One railing had to come down because of lift. The physio told me the other day that stair climbing is not essential for heart health because walking will do. so, I use it now and am glad of it. Myopathy and balance are real issues for me. Upstairs I have to walk because of space limitations, but have walkers downstairs. Still on 14 mg after 3.5 years and flares . Thinking of trying to reduce again after 8 weeks. Feel like a water balloon! I'm using diuretic, but warily as kidney failure not a good option. Big problems with eye coordination, now, unexplained worsening.
It may just be the collective drug dosage which causes unpredictable effects. Reducing them in a controlled way might be the answer but the medics don't really have a good handle on cause and effect.
Hi, this is one of the problems with Pred and I guess many other drugs as well. They all affect different people in different ways. I was carried into the "walk in centre" unable to move and in absolute agony. Pred, my little white wonder (for me) pill took away that pain and within a very short time gave me back my life. No matter how long and hard you might think there is no alterative at this time.
Pred can/may have side effects for some, it is not a given, and for many those side effects can be mitigated with behavior and diet.
I accept that I have, like it or not, a long term systemic illness which will/may affect my life and what I can do for the next - who knows number of years.
So,assuming the diagnosis is correct, then then it's a choice between Pred or a life you are unable to enjoy because of pain and an inability to move and perform any normal activity.
A big problem would appear to be medical practitioners who do not understand this disease/ailment, and whose actions, rushing patients to get off Pred ASAP, actually cause more distress, a continuation of the disease and the intake of even more Pred. That is a real problem for many and as Cranberryt says you may have to fight your corner. I've been lucky on this and not had this problem but I realise many do.
In the US 40mg of steroids is considered a high dosage. Cellulitis is an infection that occurs from even a small nick or scratch in the skin. We all have staph and strep on our skin. Steroids decreases our ability to fight off infections we normally would. Cellulitis is not like shingles. Shingles happens due to having dormant chicken pox virus in our bodies that gets activated especially when our immune system is challenged or suppressed.
a bit of info on your bio would be helpful. Cellulitis nearly killed me when I was 23. It does sit in your system once you have contracted it. Hay fever is the same and it gets stimulated by pollen each year. There is no cure like PMR or GCA. Antibiotics are the only approach and simply hitting it hard with a high dose is still the answer.
Thank you for this. I definitely can relate to parts of your journey. I was also very active and just explained pain and stiffness secondary to strenuous physical activity and DOMS. All good until it wasn’t. I also had PE’s and circulatory problems.
Right now it is hard to get going- although I try. Hard to look at my cross country skis and skates and snowshoes and kayak without being reminded of what I used to be able to do and enjoy- it was like my church. Sigh.
I do appreciate witnessing your story/journey. Although everyone is different like you said, I took comfort in some shared events and therefore feel less alone and somewhat understood and validated. Take care and hope things ate brighter for you and your dog today.
thanks for this karegodd. I look at my bikes cleaned and hanging ready and wonder if ever I will get back to that heady joy of 60mph downhill. Probably not but to get back on the velodrome or enjoy a shared ride with cycling friends would be enough. What we were isn't so important as what we can still be.
sorry no. The specialist Dr Freer told me 50 years ago when he prescribed magnapen for 3 months. My current specialist echoes this approach. Cracked skin, and wounds give access to infection but it seems some are more predisposed to get it. Both my sisters suffer from it.
Well said! I agree that not only Pred needs to be looked at others do to. I was taken into A&E recently with raging BP and a strange heart trace shortness of breath and Pins and needles all over my upper torso and face? It was after multi blood tests that they found I was Calcium and Magnesium deficient? Once I had the 11 hours of Calcium the pins and needles went but then they needed to give me magnesium which was another 5.5 hours infusion. This was blamed on my just coming off Preds but also my Omeprazole? I called my GP's and explained that I been in A&E but no further tests or checks are being made?
I have multi conditions so have an array of meds. But while in Hospital they suggested I look at other meds for my RLD and COPD and all I got from GP was we have maximum treatment for you bring it up with your rheumy when you see him next month?
I have had AF since 1992 and they only ever picked up low Vit D. Which was farce as they kept taking me off them as my last blood test showed I was just on the right side of Vit D then next one it was too low? Which seemed obvious to me I needed the extra Vit D?
Like me - I live in Italy, far enough south to theoretically make vit D from sun all year. Unless I take 4000 IU vit D per day, the level just slowly drops until I am back where I was. Take the vit D and everything is fine.
I will not go back on prednisone. I got all the side effects even on low doses. My pain did decrease, but my labs never normalized. Now, I suffer PMR symptoms. I take NSAIDS, but they only take the edge off. They really don't do anything to the stiffness. See a new Rheumatologist this week. We will see what happens.
wow this is me . Having to take duretics to counter massive swelling which have helped but now my kidneys are being affected. Liver too . Was taking horrible pills for cramps. All of a sudden on top of steroids I’m taking extra 10!pills a day. PMR is life changing I had no idea at the beginning a year ago. Doing basic things like dressing is now hard work. I appreciate all of you on here . It’s devastating as I can’t work now & that affects my life even more. But you guys keep me going
It may feel like a nightmare but you will come through to a more stable place. I am going through a bad patch at present and need to sort these issues. I'm at the hard to get out of bed and going stage again but it will pass I hope. Clearly others are in a similar state so it's just a matter of being patient and getting through it. just another hurdle.
What a way to start the day. Rex made it through the night and i saw him off to the Vets. He was very low and i could have just sat there cradling him. Just heard his blood count now at 12 so there is no hope. I won't see his beautiful trusting look ever again. Better to be free of pain. Didn't want him cut up and messed around. He has put up with enough.
Who knowsw what our bodies are trying to correct when all these drugs layer one onto the other. Even without the autoimmune condition there was uncertainty. The issue with such potent drugs is their strength and purity. nature has a more subtle balance unless we consider the toxins. The more we learn the better armed we are to guide others, Especially the consultants.
I guess I am one of the lucky ones. I developed PMR in 2018, after months of trying to discover what was happening to me. It took a trip to the ER to finally find someone who didn't think I was there just to get opioids. When a consulting Rheumatologist came in, she told me her guess was PMR, gave me an injection of 60 mg of pred, and 2 hours later I was pain free. That was my starting dose, and over 15 months I tapered off successfully. Not only did I have zero side effects from prednisone, but felt better than I had in years when I was above the 10 mg mark. I had read so many horror stories about it, but it was a lifesaver for me. So it's possible to get through it with no side effects, though that may be rare.
Great story and good to hear. I'm sure many do and it's probably why the medics stick to their own programme. Unfortunately many don't and their blinkered approach jeapordises us.
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Aunty Bees Advent Calendar. Dec 16. Travelling with Chronic Pain. Like a Puppy , Pacing is for Life , not just for Christmas! And a quiz! 
