Struggling to walk at the moment, not sure if it's the PMR or not. I was increased to 20mgs of Prednisolone 24th January by GP due to pain and struggling to turn over in bed again, I reduced to 17.5mg on 11th February, my legs feel like lead weights at is is like I am wading through mud. I am exhausted all the time and am wondering if it is the PMR or a side effect of the prednisolone. I was going to try and decrease to 15mgs next week but need some advise, not seeing my gp till the end of the month. I also had some bad news about the gp who has been Looking after my PMR since diagnosis last November, she is leaving the practice at the end of the month, I am very anxious about this as she seemed to know a lot about my condition and as I still haven't got an appointment to see a Rheumatologist due to my area not having anyone available, I would appreciate some advice. My legs are quite swollen by the end of the day with fluid retention, but even elevating them is not relieving the heaviness. I am unable to even walk around doing my shopping without giving up and going home. Getting very depressed with it all now, unable to work, unable to walk my little dog. Just need to know if the symptoms are normal for the condition or steroid induced.
Struggling to walk: Struggling to walk at the... - PMRGCAuk
Struggling to walk
They are definitely not "normal" but it could be something other than either PMR or pred. Have you spoken to a doctor about it?
It is difficult to say - but I WOULD consider you only being left at 20mg for 2 weeks wasn't really long enough to get inflammation under control.
Lots of people mention the feeling of wading through treacle or wearing a concrete overcoat. It is something I have only experienced when I have been doing far too much and am so tired I can't put one foot in front of the other. Are you sure you are simply not trying to do too much?
Certainly not doing too much as just don't have the energy. Have only felt good the first couple of weeks after diagnosis, when I had been struggling so much and had been for months the fact I could actually turn over in bed was like a new lease of life. I managed to walk the dog a couple of times but it didn't last long. Struggled in work for about 3 weeks before I gave in and went on the sick, just not felt right now for a few months. Very hard to get an appointment with gp, the same every where I think. My last bloods had shown an increase in my CRP which is why doctor increased my steroids. I have also had a virus, twice now so that docent help. Just feeling so sorry for myself and so fed up. To go from a fairly fit 61 year old trained nurse holding down a very stressful but enjoyable job to not even being able to go shopping on my own I am finding it so hard to come to terms with it. Listening to myself I get angry with myself as Well which obviously isn't helping, just can't see light at the end of the tunnel at the moment, which isn't me as I am usually the glass half full kind of person. This forum does help as I read lots of things that show me I am not alone and also things that give me some positively.
That adds to my suspicion that you weren't at 20mg for long enough - were the blood markers checked before you reduced? You need to stay at 20mg until they have fallen considerably, preferably into normal range. Only then should you reduce the dose.
One thing I'm a bit concerned about is your markers rising - what dose were you on when that happened?
Many of us know where you are - Snazzy was also a nurse and had to retire, although she had GCA so was on very high doses of pred. I was 51 when mine started - and there was no way I could have worked in such a physical job, I had only to fall from bed to computer desk to translate and even that had its moments!
I was on 15mgs and had been since December. Started on 15mgs in November when diagnosed that was increased to 40mgs as they thought I had GCA but that was ruled out a week later and was decreased to 15mgs over a week. Stayed on that dose till bloods checked in January, got a cold virus and felt unwell went back to go with pains in neck and shoulders and struggling to turn over in bed, that is when she checked bloods and increased Pred to 20mgs. My CRP was 45 in November went down to below 5 until January when it went back up to 12, haven't had it checked since. My gp doesn't seem to check it all the time. Might make an appointment this week rather than wait until end of month.
I think if you felt good initially and you have been yoyoed, had bugs and tried to work that I would go with symptoms rather than the markers at ghe moment. However have you always had fluid retention or is that a new thing? Have you tried low carb diet as well as low salt?
I only had a few good weeks at the start then the reduction made me feel like I was in a deep sea diving suit with lead boots. I can't remember who said SDOFD... Sit down or fall down on the forum once but it stuck with me as I felt like that before diagnosis and for months after as my markers rose to higher than at the start and Dr keep reducing pred. Eventually put me back to starting dose for 6 weeks.
You need to find a dose that works and do 4 weeks minimum. Is your doctor amenable to you raising your dose? Because of the fluid retention I think you need to see or speak to her anyway.
If it went down to 5 while on higher doses of pred, that is the level you should be aiming for. If it is above that it is rising so needs a close eye kept on it. For some people it is less important to check the markers if their symptoms are clear but until you really know your body and your PMR it is helpful to have a look maybe monthly and certainly any time you change the dose.
How did they "rule out GCA"? And what were your symptoms.
I hadn't read your second post, Rebel 21. Sorry. I too felt so helpless going from an active and accomplishing person to one who was battling extra fatique every day, and dealing with body pain, mainly shoulders and neck plus awful digestion and sleep issues. It is horrid. You are not alone, it is a massive adjustment. Eventually, I certainly hope, your condition will start to settle down and you will find ways to get pleasure and joy again.
You’ve had a rather chequered start, and I think that is part of the problem now.
Too much change in dose for the body to cope plus a couple of viruses is a recipe for issues.
If it were me, I’d be inclined to go back to 20mg, stay there for 3-4 weeks, and then reduce by only 1mg per month.
It might be disappointing, but I think you have to wipe the slate clean with what’s gone in in the last few months and “start again!”
As for blood tests, yes they are useful- for you and doctor, but they aren’t the be all and end all. Concentrate on your symptoms, or in the case of reducing - lack of symptoms.
You need to rest as much as you can, and that’s difficult for someone who’s had a busy life, but put your nurse’s head on for a while - and follow the advice you would give to a patient.
You will feel better in time, you know that! Just believe it.
I'm so sorry to hear how you are feeling because I've been there. Work on keeping your spirits up-start listening to music you love again. Maybe try a Sirius satellite subscription and some headphones. They have music for everybody, all the time. I got the Calm app for my phone and do the mediations while lying down, because sitting tends to hurt. They also have environmental music on the app that is good to fall asleep to, and God knows we all need help with that. Amazon Audible is nice because you can listen to books (and fall asleep). You can set a timer.
Hang in there. Not every day will hurt as much as today. These ladies on this blog are very knowledgeable and it is nice to have access to people who can relate.
Did you notice that this post is over 6 months old?
After I commented. I'm new to blogs. But, the advice is still good!
Just in case you expected a response - sometimes the person is still around but often they aren't
Thank you for all your responses, I am still struggling to walk and stand 6 months down the line, got down to 9mg of prednisolone before relapsing yet again, back on 15mg at the moment. Took 3 weeks to see any improvement and only just starting to feel a bit better. Became very depressed and diagnosed with high blood pressure commenced on medication, still not controlled despite being on Indapamide 1.5mg and Amlodipine 5mgs. Got to speak to go again tomorrow with bp recordings, but unfortunately still elevated. Spoke with a physio over the phone, she sent me some exercises to try, but each time I do them I am in pain for days after. Very fatigued and could sleep most of the day and night. Will see what the gp says tomorrow.
You say "yet again" - if you are flaring at a similar place repeatedly that is your body sending you a very firm message: 10mg is "your" dose for now. Every time you go down and have another yo-yo it makes the next time harder - many people find that and even doctors agree and warn against it.
It is actually better for you to take high BP down slowly by titrating the dose (increasing it slowly to find the right dose) so don't worry about it. Most physios don't have a clue about what you can do when you have PMR - and repeated motions are poison for PMR-affected muscles. We always suggest starting with just one or two reps of a physio exercise and add one a day until you feel it being too much and then go back. Like walking on alternate days for 5 mins at first and add 1min a day until you feel it on the rest day - rest days are VERY important! You aren't being lazy.
No I didn't! Ah well, time for bed said Zebedee
Oh I am sad to hear his, how this must be affecting you. You mention fluid retention in your legs. Do you know what is causing that?
The other thing that comes to my mind is, maybe, onset of a lower back stenosis? - when in the autumn of 2007 I used to have heavy feelinga and aching legs (with no sharp pain) I was finally diagnosed after an MRI (after nearly 5 years of trying everything else) with a lumbar spine impingment. Luckily this was something I could gradually manage and improve through weekly Alexander Technique sessions and daily lying in the semi-prone position. Now no symptoms at all . Have you been to see an experiencesd, well recommended chiropractor?
I found your reply very interesting as I'm in a similar situation. My leg issues started 6 years pre PMR and have continued through the last 6 years on prednisone. A recent MRI revealed the possibility of lumbar spine impingement. Exercise to increase core muscles and back support muscles is helping. I must look into the Alexander Technique.
I did have an experience similar, but at a much lower dose (around 4 mg) which I attributed to adrenal insufficiency. However that can't be what's causing your issue as you are well above 7 or 8 mg at the moment. It could be muscle weakening and that can be a pred side effect. Do you normally exercise or walk? We should all be recommended (but often aren't) to maintain or begin regular gentle exercise when we start pred in order to maintain our muscle tone as much as we can.. That being said, you should tell your doctor in order to have a few things checked, if they haven't been lately, like iron level, electrolytes, whatever else might contribute to unwarranted fatigue. And when you do exercise or take part in any activity which might be stressful (even good stress like socialising) make sure you have an equal amount of down time where you can relax and recuperate.
Sounds like a combination of something else with some Severe Fatigue that has been made worse during Tapering while also suffering added Stress . You may also have needed to stay on a higher dose for a bit longer than you were.
Fatigue could end up being one of your primary side effects from Overactivity, Stress and Tapering over the months . It may mean you need to experiment a little in getting the right balance between rest and activity , but also include a little light exercise for a few minutes at a time in the day to try and reduce the Fatigue taking over . Fatigue unlike Tiredness gets worse if you find it hard to even manage just a little wander in the house or some gentle activity. If Fatigue takes over it can add to a feeling of Muscle weakness and make your body feel like Lead.
It does sound like you could do with having your electrolytes checking too in case you need extra help , or adjustments , in medication for your water retention issues , especially if raising your legs and other self care techniques are not helping it to improve.
Getting control of these symptoms with advice from the GP will be a great help for you , as you don't want them to begin to cause a Flare in PMR Activity if you can avoid it.
Perhaps , you could try using this as a way to find which GP at your practice you will feel more confident seeing in the future. Try an appointment with someone else first before your usual ' go to ' GP , you may find you can work with the one you see with confidence and that in itself will remove that lingering worry about whom you can trust to see after your preferred GP leaves , this reduction in a Stress issue will help relieve Fatigue symptoms too.
Good luck , hope things improve soon.
Can you get telephone appointment with GP to discuss - mine spoke to me regularly through early stages
You are having to adapt to a great deal and no wonder you feel the world is grey. It does get better, you do adjust but it takes time. I would try to get hold of your sympathetic GP before she goes and get her to review your symptoms and get her support. I look upon my energy levels like a bank, a bit of activity followed by a rest works well and I can feel my energy topped up. I get up late when I can, enjoy daytime TV from 1pm to 3pm, am grateful for the grandchildren forcing me to play (😀). Having time for friendship is a bonus, a bunch of Spring flowers cheers, social media is brilliant. Code words, crosswords, jigsaws, reading, radio, keeping the brain ticking over somehow - all good. Getting through each day a triumph - oh and chocolate! 🌺
Just to add to Bee's reply - trying out other GPs now may be a very positive step: I found that one of the others knew far more about PMR than my usual go-to. I no longer encourage continuity at all costs - if your GP seems overwhelmed or is leaving, do your homework, maybe someone has a special interest or comes highly recommended (although that usually means getting an appointment with them is next to impossible!)
You might be interested in my reply to Bennijax.
In addition to the heavy weak legs I've had for more than 12 years I also experienced fluid retention and wore compression stockings for 10 of those years to keep it under control, even in the heat of Panama for many months of the year. I was able to abandon the compression stockings a year ago and no longer have fluid retention. The only thing that's changed is that I was diagnosed with celiac disease and my diet has changed accordingly.
There are so many things to consider and we're all so different.
However, I do agree with those that have suggested that you may have got off to a rocky start getting the PMR under control and a return to 20 mg for a month followed by a slow reduction may be the best idea.
I get problems with swollen feet, ankles and legs unless I am on at least 20mg of Pred. The swelling definitely responds to steroids. I have had other tests to ruleout heart failure and kidney problems. Water tablets don't do anything. I asked my rheumy if it could be polymyositis but she said no, my blood test was negative for that. Ditto RS3PE although that can be part and parcel of PMR. This question of swollen legs does come up on here frm time to time and I know I'm not the only one who has it.
Have you had all forms of cardiac possibilities ruled out?
Yes I think so, even a cardio ultrasound. I think it's related to circulation and a type of vasculitis but LVV ruled out. I'm torn between living with it and going up to 20 Pred rather than the D-M injections. It gets a bit better over-night. One day i'll wake up and all this has gone ...... with a lot of luck.
That used to happen to me - and other things parallel too. Just wondered...
You have A fib if I remember right?
Yes. But it wasn't until something else caused a massive a/f response as a drug reaction that I realised what those strange episodes had been. Nothing found before - and over the next 5 years it got worse. Still not entirely recognised - except that higher pred made it less bad.
Thanks, I'll ask my rheumy next time
I keep coming across people who complain of dizzy spells. Some where they precede a fall. And the doctor suggests they stand up more slowly or get a walking stick!!!! No thought of WHY!!!
Yes it's another thing where doctors prescribe meds or a sticking plaster without looking for a root cause. That's how modern medicine works though isn't it.
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