why after 3 months are the side effects of this bloody Prednisolone getting worse. There are those on here that seem to tolerate it, I’m so sick of everyone telling me how ill I look and really feel it! What can I do to tolerate it better? It’s like it’s gone from bad to worse. No head problems so I know it’s controlled but it’s almost like it’s destroying me inside. 🙏
prednisolone: why after 3 months are the side... - PMRGCAuk
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lennysmummy
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I found the effects felt like they were cumulative and by 3 months in I felt really ‘Preddy’. It reached a peak and then gradually reduced with the dose.I think it was in the low teens when I didn’t feel quite as rubbish but it is so individual. What effects are upsetting you in particular?
As for being told you are looking ill, complaints from people here are either about being told how well they look when they feel grim inside and therefore feeling misunderstood or invisible. Or, being told they actually look ill which can rub it in or act as a constant reminder. Which is worse? I don’t know, depends on the person, what they want from the people around them and how they view themselves generally.
I’m on 15Mg so not that high. I have no colour whatsoever. It’s a overwhelming feeling like I’ve been turned off by a switch… I just thought that the 3/4 hours hit would have adjusted to my body by now. My energy levels are even less than they were 2 weeks ago.
No colour is a good description of how I felt too. You may well have the autoimmune activity going on as Pred doesn’t get rid of that and it can dull one’s lights for sure. It is still early days for you. I took a good 6/7 months before I felt a shift after my GCA diagnosis. I guess the question is what were you hoping to be feeling by now? Distress can be magnified by being given expectations that come from a textbook.
I just want to be as strong as some of the others on here and I’m angry and frustrated I’m not. By the evening I feel a bit normal. Not as wobbly and not as angry and anxious. I’m like a scene from The Exorcist. ❤️
You might want to be as strong as others -but honestly that’s totally unrealistic.
It’s your illness, not theirs…. You can only be the best version of you (and I realise that’s not where are are at the moment) but one day it will be.
Anger and frustration is completely understandable-but a complete waste of precious energy.
As the song says “Let it go! ”😊
can you be my house buddy DorsetLady!? 🥰
virtually - of course 😊
ah yes, being strong. Again, it’s usually down to harsh expectations of oneself and beating oneself up with probably inaccurately imagined images of everyone else. The trouble is you can’t judge how people really are from a few bits of text here and you need to be careful of filling in the gaps. For example, I made light of my hair falling out here just before a holiday so I looked like a polished red apple with my Pred face and rosy cheeks. Jolly japes aside, it didn’t show me sitting there crying about it which I did frequently. Walking round Rome looking like Friar Tuck because it was too hot to wear a wig was grim but funny later. When I had cancer and pulled my best self forward to see someone, they would say, “you’re soo strong and brave” which made me want to punch them. What did they expect? That I should be publicly displaying my feelings all the time? People didn’t see the fear and utter lack of energy. Bear in mind also, that many of us are out the other side or further down the line than where you are right now. After the event is soo much better than during the event.
Lord knows what I put my husband through with my mix of Pred fuelled chatter, short fuse and anxious scatter brain. I could barely do anything that I did before. I suspect you are how it is for now and the trick is accepting that and focusing energy on self care until things ease off. The other thing is not trying to do things that are out of the question for now to avoid over doing it or seeing it as proof that you are doing badly. One day you will one of those down the line who are not feeling like you do now.
’pred fuelled chatter’ - not something I’ve heard of but I totally get it. I wondered why I was talking so much. I think people must be sick of hearing me wittering on about PMR, side effects of pred, etc etc.
Now I’m aware of it I can make a concerted effort to control it!
😂 Good luck with that! I just apologised to people in advance once I realised some months down the line.
My hubby got into the habit of telling me to stop talking [although maybe not as politely as that]! Very brave if him really- all things considered…..especially short fuse…😉
Reading your post is just like re reading my first post from 4 years ago. Like you I didn't know how I was supposed to feel,the side effects were something I just couldn't figure out and maybe not like you I had this raging anger at a disease that I couldn't seem to grasp any understanding of.
I would bet the likes of PMRpro,Dorset lady and a few others will remember that first post of mine but fortunately I also remember many of theirs,all of them helping me understand and do the right things on my long journey to now.
Make no mistake ! Your stress level,anger towards this disease and loss of a lifestyle that seems to have disappeared amongst many other things will cause you untold grief, wanting to be like some of the people on here is understandable and no doubt you will be at some stage of your journey,it just isn't yet.
Of course people will say you look ill but no doubt it comes from clumsy concern rather than anything else,they don't really know how you are feeling inside,the pain,frustration,anger and despair are emotions they can't see.
I just hope and pray that your present situation improves rapidly,dealing with this disease is a tough ask at the best of times. Do take care and know that we are all thinking of you.
I did remember how fizzing you were so I went back to have a look at Confused.com!
healthunlocked.com/pmrgcauk...
You know - I think it was one of the best threads I can remember and should be compulsory reading for a lot of people when they arrive here!
Think it probably needs to go in FAQs….couldn’t see it in quick look through….or Pinned posts
Oh wow that is some reading. It has made me tearful - but of course it would as I am presently reducing down again and emotions are EVERYWHERE but contained 😲! Thank you for highlighting that thread!
Thank you. This has made me cry, I want to see my 2 granddaughters tomorrow up north, I haven’t seen them since Xmas day. I know I’m not well enough to travel even though in my head I’m thinking do it! I want to enjoy them but they are too young to understand nanny can’t do any of the things I could do before Xmas. I’m fooling myself. Your reply is so heartfelt and I want to thank you 🙏 I joined the meeting of the pmr/GCA that took place a few weeks ago… I felt so much better for it then went downhill again. It’s the people like yourself and others that help. Bless you. ❤️❤️
So so many bloody hills,just as you reach the top some poor soul pops up and says just one more, THAT'S when you get angry and take a swing.lol. Thing is ! when people on here say that they know how you feel they really do know how you feel. Keep explaining to your grandchildren, they will understand eventually. The more you care for yourself now the sooner those visits will become regular.
"they are too young to understand nanny can’t do any of the things I could do before Xmas"
How old are they? Don't underestimate children! There are many things to do with children and they don't have to be grovelling on the floor - small children love you just as much when you are sitting comfortably doing quieter things with them, You aren't the first to struggle with this and I'm sure others on the forum will come back with their experiences if you ask. I just can't remember the names but it has been discussed a fair bit. It will improve - I skied with mine when they were small, even with PMR. You just have to get used to YOUR PMR/GCA and know your limits - but they will improve with time too. You wouldn't be in such a state if you'd had surgery or a broken leg - this too will pass.
As always thank you PMRpro. They are 4 and 6. I have always been the silly nanny that does the crazy things with them and it’s all fun. Wish they were nearer. ❤️❤️
They are plenty old enough to understand you are not well and they need to help you - it will stand them in good stead for when they are older and they will be better young ladies for it. It is all part of their education from grandma,
I've just got off pred, but I still have a good dose of the deadly fatigue! Very galling when people say 'I can only walk 5 miles a day now'! As others have said, their illness is affecting their body, not mine. So many times I have decided this is ridiculous, I'm not putting up with it, and set off down the road... for a couple of hundred metres, then have a struggle getting back. But I am persuaded that it will not go on for ever. Sometimes all you can do is keep hoping!
We look after our granddaughter once a week. I am very limited with what I can do, but have to do all the food and toilety things, which means there's not much energy left for anything else. So my husband is the fun one, and he is her favourite. But - at least I have a granddaughter, and have lived to see her, which is not given to everyone. And she does like me a bit!
Mu friends often tell me how much better I look, but I think that is them being kind. My husband regularly tells me how dreadful I look, and at least that is an acknowledgement, but I prefer the first version!
Sorry if this sounds preachy, it's not meant to. I really sympathise with your frustration.
No not preachey at all. As you say, we are lucky to have seen our grandchildren as many aren’t so lucky. The children keep me going. I think the frustration comes from whether it’s the GCA or the Prednisolone that’s the issue! It’s probably both tbh. I know the journey is not going to help… it’s been known to take us 8 + hours on numerous occasions. I have to admit defeat at this time and be grateful for FaceTime. Being Mother’s Day Sunday hadn’t helped much as my eldest wanted to take us all out to dinner. To be fair even that is the last thing I want at the moment. The only thing steroids hasn’t done is make me want to eat! 😊 Thank you for replying to me. You take care. ❤️
My grandchildren soon caught on, even the youngest at 3. My third eldest granddaughter (8) quickly became my nurse, with strict instructions of what I could and couldn't do and what I should and shouldn't do and timely reminders to take my medicine.
❤️😇
I have always felt very blessed in having great affinity with young children and dogs. My Wife says it's because I act like the former and smell like the latter.
Hi - lots of good advice already from people but just to say you can get anemia linked with inflammation so worth getting that checked when bloods done/ trying a supplement
I have bloods done again 31/3. That should show up if it was wouldn’t it? They have all been fine so far. I was thinking of taking a multi vitamin supplement but again don’t want to overload something that’s ok. I have so many bad reactions to meds even cod liver oil capsules I could never take… just didn’t agree with me. X
I’m sure they’ll cover off your iron level then on 31/3. Iron supplements can be hard to take so probably best to wait. Take care x
The anaemia of inflammation is treated by dealing with the inflammation - not iron supplements as usually the body iron stores are actually OK and taking iron leads to overload.
which side effects are getting worse?
The unsteadiness. The anxiety. The weakness. The blurriness. Feeling so unwell. My b/p is steady between 139/67 to 78. Gets higher if I get upset. 150 ish ❤️
I had to repeat like a mantra to myself, “this isn’t me” to try not to respond to the false fight or flight sensations in my body. One has to try not to let it spiral. I could barely lift a kettle at one point; weakness comes with the territory, but doesn’t last forever.
Remember you are ill. The steroids may help the pain, they do nothing for the underlying illness. We are all different. Even when we are well we find people can do things more easily than we can. Start pampering yourself, say no if you don’t want to do something. Sometimes you have to give in and forget the stiff upper lip.
PMRproAmbassador
A lot of that is as likely to be the PMR as it is to be the pred. I had had PMR for 5 years before I was offered pred so it was very clear to me what was PMR and honestly, a lot of things pred gets the blame for happen with untreated PMR. As piglette say - the steroids reduce the inflammation and so the pain and stiffness. Lots of the other stuff is due to the autoimmune part of PMR which is still dripping away in the background and making you feel - and often look - as if you have flu. And if you try to fight against it and rage at it, you feel worse because you are using energy that could be a lot better applied somewhere else.
No PMR as yet just GCA. Although saying that since 2 weeks ago I’m getting pain in other places not my head. Maybe it’s the beginning. Next bloods 31/3 so see what they show x
So sorry to hear you are struggling - I'm sure we all do and I certainly do but as others have said don't waste your energy and I know that's easy to say but try and realise that you will feel better. This site and the people on it have and still do give me so much reassurance and support that I feel blessed that I can ask for advice and know I will get a response. Don't think of the things you feel you can't do at the moment, just concentrate on the things you can do and I pray you will be able soon to look forward to seeing your granddaughters in the near future.. Take care.
Thank you. I feel I’m letting the little ones down at the moment… just miss them so much. You are all such good souls. 🙏❤️
Hey you can't think like that PMR isn't your fault you haven't let them down! Someone said (was it Kate Gilbert in her book) make the illness your friend - be kind to it which helped me stop the anger. Be kind to yourself - how would you treat a friend who feels like you?
About 50 years ago I got very sick indeed following a tummy bug. My 3 year old daughter was emptying the bowl because I was too weak to get to the bathroom. Your grandkids will benefit from learning a bit as PMRPro said.
it is hard I know but things really will improve
the yorkieme short rope option is an apt way to describe how I feel about life sometimes—I look like a walking stick, my hair is falling out, I can’t walk very far (the days of 3 miles a day probably are gone forever), I’m covered with bruises from doing nothing and the fatigue, oh, the fatigue. But I just had a doctor tell me I’m very healthy—all my labs are normal, I take only one med: pred, and there’s nothing I can do about that. It gets worse: I’m allergic to the Covid vaccine and can’t breathe in an n-95 mask so I just passed my third year of isolation. But you know what? Every night I say, “tomorrow will be better.” Sometimes it really is—intermittent reinforcement is the strongest kind of reward—so I keep plugging away. Always that chance tomorrow will be better.
❤️❤️
The beginning of the journey can be SO difficult. I would read posts and get caught up in “the numbers game” (the daily dose of pred I took compared to others on this site). Why did I get stuck at 9mgs for 14 months and others are able to reduce? How can others be so active?
I have learned that my PMR journey is unique to me and in comparing myself to others I often came up feeling “less than”. Of course there are others who are worse off than me too. So now I understand that even though I have the same condition as others, my body is different from theirs, I tolerate medications differently, I have different side effects, I have a different support system, etc.
As for folks telling you that you look ill, is there a way to communicate to them your struggles and how their commentary impacts you? I found that people responded to my illness differently, and this resulted in the end of one special friendship due to the lifestyle changes and adjustments I had to make after PMR started.
The most difficult part of having PMR for me is not being able to be the grandma I want to be. Like you, I was active, funny grandma to my 4 grandsons before PMR. And although I’ve found ways to connect with them differently, I still miss the past. Plain and simple. I may always find this difficult.
We go through a range of emotions, especially at the beginning….and that’s ok. We are processing the loss of our old life while dealing with pain, stiffness, new medication, people’s reactions.
For me, things got better over time, and my hope is that they will for you as well! We are here for you and “get it”. Keep us updated.
I am fortunate not to of suffered too many side affects from the medication… but really feel for those who do. To help with the problems I have and do have, first I never let myself get cold, making full use of wheat sacks and heated blanket. Second is only do a little, even if it’s making a drink, then rest for a while… do not try to keep going, it only makes things worse…. And the most important I find if all is ignore what family and friends say about how you are looking and behaving, this is your illness, your body….. xxxx big hugs xxxx
❤️💔
my eldest granddaughter gets married in a couple of weeks and I’m dreading it incase I have a flare…. It’s going to be a long day, 2 hrs journey then wedding, and meal( meeting groom and his family for first time) then journey home…. Not much chance of pacing myself, but it’s one day, and I have many more to get over it….. Our youngest granddaughter ( she’s 3 now) is totally besotted with her granddad ( my husband) even tho we have only actually seen her 3 times, she has told everyone at nursery he’s the very best, and I’m just granny…. Xxxx you will get to spend good times with your grandchildren xxx tc cariad xx
❤️🙏
Dear Lennysmummy. See those kids and grandkids. Be there to love, give unsolicited advice, protect them, spoil them, watch cartoons with them. What I wouldn’t give to go back in decades and to have visited my adult son living a day and a half away more often. He is gone as of Christmas.
❤️❤️
And PS—some of the funniest comments on this site have had to do with steroid-enhanced dark face hair growth. Noticed recently I have hairier fingers! But I join you in being testy, emotional, tired, unmotivated. Higher bp, higher sugar leading to all-out diabetes, fat jowls. Truly sucks. Distraction helps. Murder mysteries help. BBC helps. Hugs and sympathy.
PPS: about dingbat brain//on vacation in the last few days. left my handbag and prescription glasses in places where they had to be retrieved by husband and friend, tripped on uneven sidewalk and broke my sandal. Any of those airport wheelchair people see me, they come rolling up! And my husband is eight years older and they don’t do it to him 😬 You are not alone!
I found it was such a learning curve and still is. I lived in denial and to be honest, you don’t want to do that.
Your asking the right people here, there is a wealth of experience and expertise from people who know. I had googled GCA and spoken to my rheumatologist, who to be honest had no more information than a leaflet.
I can only give you advice from my experience, just how I have learnt to live and come to terms with it, l. My philosophy is that the pred is my friend, helping to dampen down the inflammation, which is good. You can’t put a time on your recovery but the way I try to get through the days is to remember how awfully ill I felt before. You need to listen to your body, rest when you need to rest, go easy on yourself, you’re poorly but in time you will heal. You need to go through all the emotions, that’s part of the healing process, or it is for me. I hope you start to feel some kind of better soon. I hope that helps in some way?
Sounds so familiar, but for me those life limiting fatigued 'switched off' symptoms come when I reduce, wipe me out every time. Are you bad on reducing, or full time ? I suppose I'm wondering if its the pred, or the PMR underneath thats the cause. (Obviously the moon face etc is full time, I hate that too, for me I hate it when people say I look well with my cheery cheeks !)
Only GCA no pmr at present… no it’s been like this with the prednisolone since the beginning, just b/p was higher at first due to being on higher dose. I just thought it was a medication that once your body gets used to it the side effects would wane somewhat. Who knows. ❤️
I don’t take the Pred because I can’t cope with the side effects.
so what do you take? Is it GCA you have of PMR?
I have PMR. I don’t take anything for it but I’ve been offered Methotrexate but I don’t want to take it. I’m very sensitive to meds for some reason. It took me well over a year to get diagnosed and in that time I’ve lost so much muscle that I’m partially bedbound. X
Oh no! I am sorry. I was blaming Pred for my loss of muscle! So you’ve lost not because of pred but because of PMR? I think I have been blaming Pred for a lot of things when all along it could have been the PMRGCA?
You absolutely can get muscle loss from Pred. Mine is directly due to inactivity. I just can’t do much because of the severe pain and stiffness. It’s so bad that I finally gave in and asked my GP for help and I now have carers coming in every day to help me shower.
Ahhh! I know! The doctors don’t warn you about that. I know the side effects can vary but for sure there are side effects. I lost myself. I wasn’t me anymore! The pain was under control but I unravelled! Also I was on a very low dose by normal treatment for this weird and horrible autoimmune - thing/disease/reaction. Three months in and I was on BP medication then later on blood thinners! Then I was offered sleeping pills and bone density pill etc etc.
I want off all pills! I want my thinner body back! I want my enthusiasm and interests back! I want my energy back or any little bit of energy! I mean calm energy not anxious fever! I want me back!
BUT! I guess we are lucky. We can learn. We have this site. There is an end, either a remission or acceptable management and there are so many worse things out there……!
Courage my friend!
❤️❤️
I think I’ve had every side effect available, & pred was nearly responsible for a complete breakdown of our 40+ years of marriage. That’s not an over statement, btw! It’s very tough, however, people say how well I look, & it seems I am expected to continue as if I don’t have 8 diseases, especially as many people haven’t heard of most of them. It’s gruelling, & at times it truly gets you down! But, it’s better than not having pred, when I remember back to how I suffered before diagnosis! I don’t wish to be housebound 24/7, & unable to do anything…but it takes some mental strength to deal with the side effects, I find. I’ve a job seeing the light at the end of the tunnel, but, in our household, humour rules….when I fell down the other day, my husband shouted ‘is the radiator damaged, that’s a new one, we’ve only just paid for it’…when one of my joints dislocated a week ago (another new problem), he said ‘if you just stay like that, will it drop off’….when I ripped the tendon & broke a finger, he then laid down his wooden spoon, & said ‘best head for A&E, but sad as supper us just ready…your choice’. I opted for supper & strapped the fingers together for support! Hugs help! I always try to find one good thing each day, whether it’s sunshine, hugging the puppy next door, achieving something…took me four weeks to decorate the utility area, just doing an hour each day, but at the end a great sense of achievement! This week I’m having a bash at macramé, it’s not just about plant holders these days! Not sure this will help you, & believe me I have very black times…& I only ever have a max of five hours sleep…always think forwards, take care, hugs, S xx
Tgsnk you. Hugs back at you. ❤️
thank you! S x
If it's any comfort after 18 months I'm still finding it up-and-down. I have months when I feel great and others where either the PMR pain hobbles me or I'm lethargic and anaemic. All made worse by a friend diagnosed 2 months after me who is already off pred and back to normal. I'm learning it's unhelpful to compare myself to others in terms of progress whether I think I'm doing better or worse at any time - my body is handling it in its own way and I have to listen to it (and occasionally swear at it I must admit). I hope you get some improvement soon
🙏🙏
Hi So sorry you are struggling. Not everyone tolerates Prednisolone, I had the horrendous experience while taking it. I did however persevere and eventually got to the end. Support and advice from those on the forum also helped me get through it. 🫂
🙏❤️
lennysmummy, I can relate to what you're going through! I was on also on prednisone for three months and reducing pretty quickly on the advice of my ( not so good rheumatologist.) While during this reduction I had some of the PMR symptoms of pain, but had no side effects...none! I couldn't figure out what all the fuss was about. Then three months in ( similar to you ) I begged my doctor to go back up to 20 mgs, as I was experiencing bad flares, and shortly after that all of the PMR symptoms went away, but the depression, and anxiety hit with a vengeance! This was bone crushing clinical depression, at times I just wanted to go to sleep and not wake up. I lost interest in any thing, my appetite went, and also had fits of extreme anxiety. At other times it seemed like I was a zombie and just going through the motions and not really living. But then during my tapers ( now down to 7 mgs ) and the few times I had a flare, it was impossible to take the pain, as nothing else worked but Prednisone. At this time the most horrible thing was to realize that I was truly stuck between " a rock and a hard place, " and that prednisone was, for me anyway, truly " a deal with the devil." Having PMR is a hard task master, and the only good treatment for it ( almost 100% efficacy , ) for some of us anyway, is an even harder task master. but above all always keep in mind that PMR is most usually self limiting. PMR doesn't usually last forever, and only a few are on Prednisone long term, and even then only on the very lower doses where the side effects are minimal, if at all. lennysmummy, if you like you can tap on my name and a page will come up and to the right it will say start chat and I think you can direct message me in this way, if you want to know more of my story, and what I went through, am going through, and how I was treated for the side effects. It's sometimes hard to talk about some of the mental side effects experienced, but it does help to know you're not alone.
Thank you so much. I really appreciate that. It’s taken 3 months for my sons to suddenly realise the the effects this is causing. I can’t blame them as they honestly thought that once you are on medication it just all goes away. Thank you again and I really appreciate your time to reply to me. 🙏❤️
I can’t blame them as they honestly thought that once you are on medication it just all goes away..
Trouble is, some doctors think that as well…🤔
I can certainly relate to your experience. As you say there is no alternative treatment.
If it is any consolation i'm struggling at present and it seems like another step back. however I have learned a lot since first diagnosis and trying to carry on as normal as possible. I have a routine now which totally accepts what is happening and it has to be that way until I can push back a little. Tackle one key thing at a time and let the rest bypass.
Thank you. ❤️
hi there! Keep a diary! Just for you, How you feel, where the pain is, where the stiffness is, runny eyes, how you feel at any moment, what people say ,“Oh, you’ve got a fat face” - thank you for nothing,seem to sleep forever, weight piling on, etc, simply everything. I am virtually 2 years down the line and on 2 mgs, feeling pretty good, Half a stone lighter now than before the start of this awful disease, but when I read back in my diary, yes, it really is a rough ride as my lovely doctor told me . Keep strong! You will improve.
If someone told me I had a fat face I would be greatly tempted to tell them it was better than a stupid face like theirs ,,,
Unless they were an exquisite natural beauty aged under 30 I think you could find plenty of faults in their face to notice. That might make them think about what they were saying.
I adore you!
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