PMR / steroids = pills for water retention pills for cramp more pills for pain no sleep kidney & liver problems. Depression / anxiety & skint as I can t work . I hate PMR . Sorry I just feel low and shocked at what can happen in a year. Used to walk every day now can’t even get dressed. Sorry just needed a rant and there no where else to say it
Fed up of PMR. : PMR / steroids = pills for water... - PMRGCAuk
Fed up of PMR.
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Vito5566
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If you can't rant here, where can you? But you are a member of a rather large club I fear!
I feel like screaming sorry but even after a year of this nightmare it’s hard to get my head around it. I can handle most of PMR it’s just all the other things connected to it . No one else understands
Sounds totally rubbish. I have some idea of looking back and seeing the old me being fit and working which went up in smoke without much warning. I have been reading through your other posts and a whole bunch of questions spring to mind. What is stopping you from getting dressed? Pain? Something else?
Has your GP tried to rule other things out rather than just saying it’s kidney or liver which = PMR/Pred? Did they check things like sodium and potassium (Urea and Electrolyte test). If your liver is out of whack, what is showing up on the tests (there are different things) and what is the GP’s explanation? Have you had Covid in the last year? Do you get fevers and other types of pain?
Back pain - Did you ever get physio? Is your lower back being constantly aggravated by lifting etc? Did you GP actually check your prostate physically or just do a blood test. An enlarged prostate doesn’t necessarily show up on a blood test but can cause merry bell with the bladder. Have you asked for an x-ray?
Pred - What pains do you get when you try to reduce?
What is your diet like? Did you take any magnesium? That doesn’t come up in routine blood tests. Did you try reducing salt before going on fluid tablets? Did you feel better before the fluid tablets?
Are you getting any benefits due?
I’ll stop there, but it does seem like your doctor needs to step back and take stock overall.
For a start you come over a bit harsh but that’s ok . For 10 months I got on with reducing steroids. I have always been fit I run marathons. I eat well I take vitamins. I had prostrate checked all ok . Two months ago I developed water retention which cripple as my legs & feet were huge. Put me on water pills also had terrible cramps so more pills . I’m not stupid I know these new pills are not good but they have helped. I want to stop and seeing doctors tomorrow & consult next week. No real problem tappering . I’m on 19 atm . Had prostrate checked all good . Dressing a problem as the water pills have affected my kidneys and I get breathless I get test done every two weeks. Do take vitamins & a very healthy protein shake. I eat well no crap . Had Covid few years back badly. Had 3 jabs and after third jab within 2 weeks got PMR . Before water problems I was doing reasonably well. Also had terrible cramps and was put on pills for that . They helped but apparently they are no good. My urea is very high . Have I answer your questions as I m sorry but you come across a bit harsh but no worries I just needed a vent . Sorry if I offended you . Suffer back hip & leg pain every day. Up every two hours every night . Benefits don’t happen overnight and being self employed does not help
I’m sorry if I came across a bit harsh or even judging. That’s the problem solver in me and also being anxious that that you are just having pills thrown at you without looking at why (other than Pred) whilst your quality of life gets you down. You every right to complain. I’ll back off and leave others to give you what you need.
To be honest you’re right I have had pills thrown at me. I’m seeing Doctors tomorrow & seeing a good specialist next week. I am feeling a bit sensitive and maybe ranting at stupid o’clock is not a good idea . I do appreciate your help maybe I read your message in the wrong way. Thanks for your reply
Think you need a frank and full discussion with doctor about everything …there is help out there,
Definitely will be asking lots of questions & you’re right I was bought up in that way to be strong & not moan . Everything you said was spot on . Thank you for your time
My personal impression from your story is that doctors were taking each thing in isolation without understanding how it would relate to other things.
Having given you diuretics, the first reason to be considered for the cramps was probably low magnesium but also low calcium, low potassium and low sodium. This would be exacerbated by pred. Just stopping the diuretic was not necessarily the way to go - changing it may have been better. That's just one side of things.
When we reply we are mostly working through tick box exercise to be sure we don't miss something. As such we possibly do come over a bit brusque - because you can't see us f2f and the whirring cogs! Or the wry grins. Try reading replies and hearing different tones of voice - none of us bite really.
You're very welcome....my late husband found it very difficult when through cardiac issues he couldn't do all he want to do/and was used to doing. Son has inherited his genes...
I'll be doing that on the 6th when my FtF is scheduled. It's important to think it through and list all the issues so you don't forget any. Try not to leave out anything and make sure you have a response to each.
This is good advice, SnazzyD . Now, if you had only not begun with that first sentence. 😉
Sounds like me and we exchanged on my thread vito. you are younger than me so it's harder for you. My three A's accept, Accommodate , Adjust are the way forward and only way. Snazzy is one of the most helpful and knowledgeable posters here and only trying to help list some of the ways to adjust. Stay strong.
cheers mate just felt like i said something wrong.
We all have moments and I'm sure Snazzy and others will understand. I am still trying to understand how I can be such a physical wreck at the moment and it is really hard to take, However, that is where we are and we have to adjust and cope.
You haven’t said anything wrong -and SnazzyD was only trying to find out what your exact issues are to be able to make suggestions to help you.
Sometimes when you are feeling as low as you are, questions from us may seem intrusive-but they aren’t. The more we know, the better we can help.
As you say being self employed puts a lot more pressure on you as well -do hope you soon feel better.
Fair point maybe I feel a bit sensitive. My family are very dependent on me as I’m a carer for my very ill wife . My only son has watched his mother be ill all his life and I try to protect him. . I have a small family so not much help. If I don’t work money becomes a big issue. I m on a couple of benefits but it’s a massive struggle. Lost my home in the last year due to Covid and illness . Lost my dad and dog in the last year too so feel pretty crap
Sadly, that is probably why you got PMR. It is cumulative stress on top of everything you try to cope with that often tips the balance of our body's defences. Stay strong .
Then you do have a lot of pressure on you, both at home and work, mentally and physically. So no wonder you feel as bad as you do…and I think men still feel they should be the “strong one” in a relationship/family. That may not be PC to many nowadays, but thousands of years of indoctrination/expectation cannot be wiped away just like that.
Can you/do you get any social help caring for your wife…again not easy in these difficult times, but you do need some respite, or you will crumble…and you probably need some sort of counselling help yourself… even though you may not think it’s necessary. Again I know it’s difficult to consider, but just throwing it out there…
We can help on the PMR front, but that’s only part of it….my best wishes to all of you.
Yes In answer to your reply. Lots going on thanks for your advice
Vito, I recognise the bit about looking after sick partner and falling ill yourself. My supporters told me to get a Care Assessment fr myself and it got me quite a bit of help, including Attendance Allowance, which makes a difference. It’s not means tested. Every little bit of help makes a big difference, so keep after Social Services to get everything you can. I was an extreme gardener, ran the Park society, terrified the local council and got things done. Now, I am scarcely able to heat up a dinner. You are not alone, AND, we are not Spring Chickens. It comes to us all, one way or another. Keep after doctor to make sure he remembers you! They have obligations by law to listen and respond.
Thanks for your understanding & reply
Hi Vito, I don't have much in the way of advice or reassurance to offer- i haven't experienced most of what you are going through. You have been through so much in a very short time. I just wanted to say that I 'hear' you and my thoughts are with you.
It takes strength and bravery to share how you're feeling. Post your rants as often as you like x
Ahh that’s so kind of you. Made me feel emotional maybe I needed that . Really appreciate your reply.
Hi Vito5566
There's not much I can add to what's already been offered, but I do know that most of us on here have also experienced that feeling of desolation, despair and utter loss of a life previously lived well.
You'll find people from many walks of life on the forum, and most of us were leading full, busy, active lives too before being diagnosed. We can all share that sense of loss and bewilderment that you're expressing with such emotion and sadness.
All I can say, is that many of us will indeed recover but it takes time and it's not easy. Just accept that for the time being, life will be a little different and may need a few 'tweaks' here and there.
As soon as I accepted my diagnosis and focused on what I could still do, rather than what I couldn't, new and unexpected adventures and opportunities began to present themselves. Make no mistake....my life is not without its challenges, but my current 'normal' is every bit as fulfilling as my previous 'normal'..... I just have to recognise the value in the 'little wins' and take joy from each small achievement.
You will get to a point where you are 'managing' your condition effectively and can feel the joy again. It takes time though.
Oh lord Vito! I hate being trapped too. Unable to work. Running out of money, plagued by bills, with others waiting round the corner that will be far too much to pay with the dregs of my savings.
Is there a time of day when you feel marginally better? Mine is late morning and early afternoon. I try to find ways to appreciate that time.
I find reasons to believe that I will be free. If those fail I look for another. Try to keep your hopes alive.
Hopeful squirrel
Love the squirrel Seacat. My eyesight isn't as good as it once was - is that a nut in the grass behind him? : )
Probably. They were loads of squirrels all looking for nuts like crazy.
Yes I feel trapped. So used to being out and I find myself at home a lot now . Your reply is me to a T . Best time in the day is afternoon. Morning & especially nights are the worst. Have not had a proper sleep for months it can make you feel a bit cranky. Thank you for your advice
Take care of yourself. I tend to collapse into a beanbag on the floor and fall asleep in the evening and then struggle to sleep properly at night. I wake up early and can't drift back off again.
Sorry to hear you re struggling.We all have at one point or the other.I just wanted to say for you to write down the issues you want to discuss.Sometimes things get forgotten under stress.Good luck!!
I agree with everything you say. Trying to get off ASAP.
Be careful - sometimes being too determined about getting off pred ends up leading to flares and prolonging the journey, sometimes by a lot. You will need pred as long as the underlying autoimmune disorder is active and there is nothing you can do to shorten that. But trying to force reductions in dose will just allow flares in the symptoms and if you get into a yoyo situation with the dose it makes things harder and harder over time.
just desperation speaking. I am hopeful that I will be able to tolerate Methodrexate and be able to get off the steroid (and away from cushings) more quickly. Thank you for your advice. x
I was admitted to hospital at one point when I was on methyl prednisone and at the top of the list of diagnoses was Cushings syndrome. I was switched from methyl pred to prednisone and switched to a low carb diet. Within a year I had lost 35lbs in PMR and pred associated weight and all the signs of Cushing's had faded away. All my doctors say it isn't obvious I am a long term pred patient - 13 1/2 years and counting. I bruised badly and my skin was very fragile when I was up in the upper teens of pred in 2020 but since being put on Actemra I have got down to under 10mg pred and the skin effects have also just about gone.
It can be done - don't rely on methotrexate getting you off pred.
Wow, I thought it was just my age causing me to have bruises on my arms all the time and my skin tears like wet paper. I am currently doing 6mg two days then 5.5mg Pred. one day. Praying that eventually my Pred. journey that started end of 2019 will come to an end or at least taper to next to nothing so it quits playing with my thyroid, blood sugar, etc. LOL Reading Vito5566 post almost made me cry. As all of us can probably remember feeling many of the things he is, at least the pain, loss of ability to be active or even just brush our teeth or get out of bed because of muscle weakness. Add to that the other parts of reaching 80 and it can be pretty dismal. I hope the doc has answers that will help him or is at least willing to look closer at symptoms and do what docs should do.
You may be trying to get off ASAP -but your PMR may not allow it -as PMRpro says reducing too quickly may actually result in taking more and a longer time getting to zero.
very true. I am hoping the methodrexate might help but it is replacing one poison with another so we shall see. Cushings is very overwhelming at times.
I know... I was on 80mg and 60mg early days...and first thing Rheumy mentioned when I saw him for the first time - 7 months after diagnosis - 'oh I see you have Cushings' - put me right off him...
My GP did not say anything when I visited her last March 22 with the list of miserable PMG/pred moans - she just picked up her dictafone and said "letter to (consultant) my patient has been on pred since oct 2021 and now has Cushings can you see her asap" - I was stunned as she hadn't said this to me and too surprised to ask - she did not explain anything just shooed m out of the room (not impressed) - she has now retired. I have seen a new GP recently as my blood pressure has gone haywire (180/110) and drugs not working well - however we are at least working on it and finally I saw the Consultant last week so a bit of a wait and he is doing tests for RA !! I do feel more optimistic and have got down to 9mg from 35mg and can stagger around the meadow with the dog. I would like to be well enough in the summer to help (interfere) my daughter with her new baby. Thank you for all your support and generous sharing of your hard acquired knowledge. x
Sure you will be well enough to enjoy new grandchild.....
You don't have "Cushings" as such - your appearance has become Cushingoid because you are on exogenous pred, they KNOW why it is happening. In Cushing's disease they don't know where the excess pred is coming from, it is likely to be a tumour of some sort. Excess steroid is excess steroid and has the same effects wherever it comes from but it is to be expected in any patient on pred. Doesn't stop it being upsetting but strict control of carbs often helps lose the weight in general and a very low carb diet should mean the fat deposits are used up to supply energy - and that also reduces the Cushingoid appearance.
It's a shame our health is not looked at holistically.
Things will improve. x
Thank you
I know where you're coming from.I sometimes sit and have a good weep.
It is common now for doctors to only deal with one problem per visit. No one looks at the whole picture.
I have PMR, Osteoporis, Agressive breast cancer and cardiovascular reurgitaton.
I am not looking for pity because they are all being dealt with BUT no one really knows what is causing pains. Each department calls me an enigma. Like you, I have severe water retention and breathlessness and am just about house bound after being very active.
Water pills don't seem to help and meds seem to add symptoms.
Good news is cancer treatments are working to reduce size of tumours but bad news is they add to fluid retention and the cardio problems.
I hope and pray your doctor listens and looks for other reasons other than PMR for all you're going through.
Thank you
PMR/GCA is just one great big thief, and you will always be sure that people here will understand that very well.🙂
But sometimes it brings good things with it too
Umm?
Thanks to PMR I have met some amazing people I wouldn't have otherwise. I have learnt lessons and changed attitudes too, I think I am a better person.
You were clearly a good person before(if a tad feisty) but if you think it has improved you then that is wonderful. For me the silver lining has been the appreciation and empathy gained of others' issues that are not apparent until one has suffered this condition. Mind you, I'd rather not have it at all.
Sorry to hear you are going through such a bad time. Things will improve for you but it all takes time and patience. I have the mantra ‘this too shall pass’ when everything gets a bit much. Sending you a virtual hug 🫂
Just seen this Vito. I might be able to understand a bit of what you are going through as I was self employed & it is not easy, were not looked after by the government when Covid struck.
All I might add to what other people have already said is do as much homework as you can before seeing the doctors/consultants/specialists. They are all under a lot of pressure at the moment so will only give you so much time, so make a written list of questions you want to ask them, it's very easy to forget things when you are there talking to them & be ready with follow up questions when they give you answers that you might not fully understand or give you a satisfactory response. I now write a dairy outlining how I'm feeling each day & what medications I'm taking which is extremely useful as you forget how you were a few months back & doctors will ask you about your past history.
As has been said & as I now know, you cannot rush reducing Pred but have to be organised & patient.. All your other medical/mental problems can't be helping & if you can get some counselling it would give you a place to let go & work things through - don't be afraid to tell the doctors how you really feel, they will have seen it all before - all of us need help sometimes in our lives & it's not a weakness to ask for it.
All the very best.
ahh thank you my friend. I made a list and wife coming th remind me . I definitely report back to you guys e . . Hope things improve for you . . Going Friday 17th we speak then
Sorry to hear of all your troubles. Just wanted to check - too much protein can put a strain on struggling kidneys. That protein shake may not be a good thing. It might be wise to check how much protein is ok when you see your Doctor. I do hope you feel better soon.
I totally understand where you're coming from Vito5566 - and often feel much the same way myself. One thing I've found helpful is not dwelling on what I can't do, but appreciating what I can. For example, it's a beautiful day here today, but I am definitely not up for my usual long walk. Instead, I found a spot in the sun and sat and read a good book.
I'm sure that sounds a little trite, and definitely is not my typical reaction, but I'm getting better at it, and sometimes it works great. Of course, it might all be a simple result of taking a sleeping and having a good night's sleep. 😉
Anyway, feel free to rant away. I'm on a couple of these forums, and that seems like a very standard thing to do. We definitely understand.
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