As you know, I'm not a Medic but maybe (or probably..?) the PMR inflammatory 'stuff' is still roaming around in your body and currently causing some weakness in your legs especially.
From experience, and also what I've learned here, the various and often confusing PMR symptoms (esp. Fatigue / Weakness) seem to affect different bits of us at different times and in different ways - a recipe for Confused.com re. Cause and Effect?! I can relate - sometimes my legs feel very 'heavy / weak' even when the rest of me is feeling relatively ok (whatever 'ok' means!).
I guess that we have to keep in mind that during the course of enduring a complex illness like PMR / GCA, we have significantly altered / challenged Physiological endurance / stamina too.
But, as you say, a visit to your GP (in conjunction with the opinions of The Aunties / experts / veterans here?) might help you to make more sense of what's going on?
At a relatively young aged 64 (and if you have previously been fit and active?), my money's on the perverse and often unfathomable effects of PMR and / or the steroids that are intended to manage the symptoms.
Also, as you suggest, the Yo-yo (Pred vs symptoms) effect might have some bearing on what you are currently experiencing. But that's only my amateur opinion..
Either way: good luck and wishes for some resolution, and try to keep smiling on this often frustrating health Journey.
I would honestly stop worrying if I managed to get down to 5 mgs. The side effects would be negligible and I would be happy to rest there for a good while. The leg symptom could be muscle weakness simply from having a debilitating disease and taking steroids. If your doctor is not too worried then perhaps a good physiotherapist could give you some strengthening exercises. Do you find some days are worse than others? I do. It’s hard to avoid hills in Sheffield.
Steroid use at low doses for long periods of time can cause muscle weakness it happened to me it was mostly in the legs. Sometimes it takes a while to manifest. I think that might be what's causing it because it sounds very similar to my situation .
Can I ask - did you have pain also in our legs? I've had to just increase my pred -having gotten to 3 mg because of severe leg and foot pain - I just couildn't bear it any more. And also that heavy weak feeling in the legs.
Yes exactly as you describe. Some say that after a while the week this will go away. I don't know because I had to stop taking the Pred to continue to function at my job because I can barely stand or walk. I have finally gone out on disability now .
oh how awful but I could certainly see how that would happen - if I hadn't increased the pred - I'd be in a real bad state. I am due to be "kicked out" in about 10 months (they retire us at 60) so I am trying to hang in. I'm hoping that not having to travel every day and sit in work for all that time - it might h elp matters. All the best!
I was & sometimes still have issues up hill, in my thighs & having problems being short of breath.
Therefore, l cheat & avoid inclines if possible.
I think my PMR is in remission or at least being held at 7.5mg so maybe stay at 5mg for a while & see if the situation improves. It’s so difficult when friends just don’t understand. I still sometimes get pain in my thighs like a ‘reminder’ of the past but it’s nothing like PMR pain really!
“do not reduce by more than 10 %”........ so you would not go from 5 to 3.5. Take it much more slowly from 5 to 4.5 so your body doesn’t notice and doesn’t go into panic mode!!!
it’s all down to fooling your body so it doesn’t notice!!
Hi Poly, yep join the club. I was diagnosed Sept last year. 20 mgs straight off, reducing 1 mg a month. I gone from being a fit " can walk 8 miles no problem " to to a weakened muscle depleted OLD man. Balance and simply walking in a straight line, is embarrassing and initiative spoiling. Might try building myself back up when these steroids have been used up. I`m 75 by the way.
I stopped taking pres a year ago, but am still having problems walking, especially uphill. Doc suggests lack of circulation and to take statins, to no avail. With your info I shall see a different Doc.
Sorry to sound like a broken record, but my legs were very weak when I was on low doses, and I decided something needed to be done. I also have arthritic knees so walking wasn’t an option, so I tried Pilates to build up my leg muscles. As much of the work is done either laying on the floor or a bench, you are increasing strength without the feeling that your legs are going to give way.
Many others swear by Yoga or Tai Chi as a method to increase leg strength.
Like DorsetLady I have found that starting with Thai Chi combined with Aquacise has gradually strengthened my muscles and doing the exercise has definitely made me feel better. However, a word of caution-take things gently with plenty of rest in between sessions. I was diagnosed in Jan 2013 and it has taken me all this time to reduce to 2mg Pred. I now exercise 4-5 times a week and just recently started Cardio Dance! Slow and steady wins the day. I am 60.
Back now from my long weekend break in HARROGATE and so lucky with the weather ...
I guess that maybe, being in company I did more walking than I should have, to please my friend, although he is very understanding and caring, so we did have frequent stops and rested when the opportunity arose ...
Reading lots of advice and thoughts that have come in ( and thank you everyone) it appears that maybe I need to stay at 4-5 mg Pred for quite some time and maybe consider some form of light exercise to build up muscle strength particularly in my legs .
I will "report back" in due course 🤓
Best wishes to everyone, have a lovely Summer and take things easy x
Hi sorry to hear about your difficulties, I do yoga to help with flexibility and have recently started a Pilates class ,to help strengthen the body, which I find very beneficial, like Dorset Lady, but I do take things easy, and try not to over do it.
I think your drop from 5 to 3.5 seems rather drastic, better to go from 5 to 4.5 say..
It’s taken me three months at least to go from 5 down to 4 , which I am starting tomorrow, so excited!! ( think I need to get out more) ha ha
It’s good that you are seeing our Doctor, Hope they are understanding.
I too am in my 60s and have had PMR for a few years now. When I started having issues where I suddenly had extra problems walking I was diagnosed with fibromyalgia too. Apparently it is not unheard of to have 2 autoimmune illnesses at the same time. As it happened this time it was a mis-diagnosis. I will say at this point that I started having other symptoms, which led to an MRI being done and they have discovered a cyst in my spinal canal, causing compression of the spine and narrowing of the spinal canal, but that is a different story. I have also started having more issues at the top of my spine, but they won't investigate that until they have sorted the lower spine with the cyst.
As you can gather from what is happening with me at the moment there is more than one problem can cause walking issues so it would probably be wise to speak to your doctor so that it can be investigated as may be due to your PMR, but as you have suspected it can just as easily be something not related to PMR at all. Either way the sooner you have it looked into the sooner it can be sorted out.
I don't think 3.5mg is your dose - 4mg maybe. It doesn't mean you won't get lower - just not yet. And anything under 5mg is a very low dose so if 5mg is a good/better place for you, stick.
Pred and PMR do both lead to loss of muscle tone/function. Maybe some targetted physiotherapy would help - the guidelines do suggest patients should be given an individualised exercise programme but of course it almost never happens. A lot of us struggle with upwards slopes - you aren't alone!
3 and 3.5 seems to be the magic number at the moment, I've been on 3 for 17 months and I was well on that, just gone up to 5 following a minor procedure as my body complained and trying to get back to 3 on rheumy advice - not that easy but getting there.
I too have problems with my legs on inclines. I do core strengthening exercises daily, on my bed before I get up or I would forget to do them. They seem to be helping as I'm not troubled as much with 'heavy leg'. Physio recommends Tai Chai, might try that sometime.
Think also you need not try too hard to get back to 3.5 your body needs to settle so slowly slowly - it's not a race - I agree with PMRpro 4 sounds more suited to you for a while and see how you go. Still have a chat with your doctor it will ease your mind, tell him what you are planning to do with your dosage, I trust he's a good listener!
My knees hurt most of the time, makes walking and climbing stairs hard, but I keep going. Can't walk as far as I used to, today I've done 1.66 miles at lunchtime. Before PMR it was over 3 miles in the same time.
Most of the pains I'm getting in my knees are old pains that I'd forgotten about, some take longer than others for me to get rid of.
As for weakness, standing can be hard, but has to be done. I end up with shoulders hurting from pushing myself up!
it must be funny for people watching us with legs not working as we try and walk or climb stairs!
You appear to be doing pretty well, despite the pain in your knees ...
My pain, if I overdo the walking, is in my leg muscles, mainly calves but occassionally thighs and then ... just cannot walk another step without resting a while ...
I have received lots of advice on this wonderful forum, so I now have a plan!
I try not to overdo the walking. Planning on going to the Royal Welsh, think I'll need a shooting stick as seats are hard to find there!
Once I'm on my feet I'm not to bad, but the knee pain is a drag, with me whenever I move my knees. For me PMA is working wonders, but I do see reductions in what I can do. At least I'm still in work which is good. More for the interaction with other people as that helps keep me insane!
“I keep getting down to 3.5mg......” - the story of my life! I’ve had PMR for 6 years and goodness knows how many times I’ve got down to 3.5mg.😏 It seems to be a “magic” number that a lot of us get stuck on.
I just ignore it now. If I am stuck at that dose for the rest of my life - so be it!
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Counted my chickens too soon...!
Tapering
Can I say I'm a veteran now?
