Hi All!! I've been on 17.5mg pred for 10 days having dropped from 20mg and my legs feel 'heavy' when I'm walking and they seem hard to lift them! I've not stiffened up at all like the original symptoms of PMR but should I be concerned that this heaviness will turn to stiffness again???
Oh dear you're having a 'lead suit day... had a week of those when I dropped to 19 pred. now on 16 but have had to go back up to 17 after my tooth extraction because I could feel my deep sea diving suit coming on fast. Feel slightly better today so will drop down again by the weekend if it continues.... this is a funny old game believe me!
Hi Andrea many years ago I was sent for body scan as my legs had become heavy like yours & it was hard to lift them. The result came back with no answers. I've since gone on to get PMR so now wondering after reading about your problem was this an early sign of the PMR. It's very frightening with this heavy leg syndrome.
Hi Christine!! Will the 'lead suite' go??? Hahahaha! I've booked a massage on my legs tomorrow to see if that will help!! 😄
I had heavy leg syndrome for 10 years before PMR. Had numerous test, scans, xrays and saw a few specialist over the years with no diagnosis. Then PMR hit. The specialist and pratitioners I have seen now all agree that the previous cement legs of 10 years was likely PMR. When diagnosed I had developed severe shoulder and arm pain and I was started at 20 mg of prednisone with some improvement, then 25 mg. After 4 days at 25 mg I had a total meltdown, pain was incredible in neck, shoulders, arms, hips, legs. I couldn't lift more than I single plate onto a cubboard shelf, toileting and dressing was agonizing, and forget lying in a bed. Prednisone was upped to 40 mg and 12 hours later I was a new woman. I even had legs again! I could actually run up and down stairs. Unfortunately, I didn't know what I know now, thanks to this fantastic forum and others, and followed a taper schedule set out by the specialist that was too much, too soon and had a relapse at 25 mg. I tried slowly increasing without success and ended up returning to the 40 mg once again. My legs did not return. :-( I have successfully tapered to 15 mg over the last 11 months and still have cement legs. I remain hopeful that things will improve.
Andrea, my legs retained a certain amount of stiffness almost all the way down through the doses. Unfortunately, this is part and parcel of PMR, and is worse for some than others.
Providing you remained on your 20mg starting dose for a good 4-6 weeks, after achieving at least a 70% improvement in your symptoms, then the reduction to 17.5 will hopefully continue to control the inflammation, even though your legs feel heavy. Do try and have a daily walk within your limits as this will help reduce/tackle the amount of stiffness.
Hi MrsO!!! Thank you so much for that information,, we all at one point in the journey of PMR think that once you're on Pred that all your symptoms will disappear!!,,, how wrong are we?? This illness is still there even if the inflammation is under control!
Thank you again xx
Hi Andrea, I had heavy legs when I was diagnosed with PMR in May 2014 but it disappeared with 15mg of pred but came back again trying to reduce from 9 to 8mg. Now trying to reduce again! It's a funny feeling, I feel like I will not make it home if out for a short walk. Pleased you have brought this up as I had not seen it mentioned before although only recently joined this brilliant forum
Hi andrea, sorry to hear about your "heavy" legs. I have been working my way down over the last 4 months from 25mg to 14mg a day and have found the same problem. It seemed to get worse from 17mg downwards and like you I sometimes find them hard to lift. I usually walk the dog first thing in the morning for about 1.5 miles which seems to help but the achy bit stays all day. Hopefully as time goes by they will lossen up a little but I may delay my next drop due at the end of the month (down to 13mg) for a few weeks. I have also found that my shoulders have started to ache as well which was a symptom I had originally. Good luck, Dave
Effects the majority of PMR sufferers at some level but usually retreats if you don't reduce at too fast a pace. The order of the day is slow and sure. It will improve, but try to do some exercise but very gently to start with don't overdo it. Best of luck
Hi Kay, this is the good thing about the forum, someone somewhere will talk about a thing that's relevant!!
Thanks again!! Xx
Hi tavidu!!! It's good to know this is 'normal' I'm due to reduce again in a week, but I may hang on for another week until this subsides!! Xx
Hi John!!! Thanks for your comments, there's no substitute for the experience of everyone on here!!
Thanks again xx😄😄
Be careful Andrea - it could well be a sign you are at a borderline with your dose. "Normal" in the sense of "it often happens" - but not "normal" by any means.
Don't rush to drop any further for a few weeks. This is no race - except in the "hare and the tortoise" sense. It really can be "more haste less speed".
Hello Eileen! About the further reduction of pred, would it be possible for me to cut a 5mg tablet in half for a 2.5mg as I've only got enough 2.5mg tablets left to take me to reduction day, but I feel I should maybe stick with this dose for another few weeks, and I don't see my rheumatologist for at least 6 weeks! Xx
Hi Andrea, just reading your post about the heavey legs. You brought it all back to me. I remember even as a very young girl compaining to my mum about my thighs were sore and I remember her taking me to drs. and it was put down to growning pains. But then later in life, well January 2001 I was diagnosed with ME/CFS and that was one of the things I remember (when I could walk) that my legs were so heavy and I used to say that I had Divers Boots on. My legs were so so heavy and there were times I would and still would happen that I would fall up the stairs. I am surprised I haven't broken a wrist yet. So I wonder was the heavy leg syndrome, or ME a precursor to PMR just diagnosed November. It's interesting. Food for thought.
Providing you are on ordinary white pred tablets, yes you can cut them. If you are on enteric coated tablets (red 5mg and brown 2.5mg pills) then you must NOT cut them. They have a special coating to protect the active substance from the stomach acid.
I can't remember where you are - but in the UK it is the GP who normally provides the prescriptions. Or call the rheumy and ask for another prescription. A reduction of 2.5mg at a time is a big step in PMR, even at 17.5mg, and it might be worth either asking for 1mg tablets to be able to do 1mg steps even now. Or use the slow reduction in this thread
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
which can also be used to smooth out the effect of 2.5mg drops
Just had a lower extremities circulation/BP test with excersises comparison to try and eliminate circulation/claudication causing my problem with walking. My comment concerns the tech asking me to describe the pain. She asked if it was an ache a pain etc. this discussion finally answers it. It is Heavy Legs. Thanks.
The insight this site gives is amazing. I also have had these 'heavy legs' for a few years. Looking back, it would seem that this was my first pmr symptom. I am on a reduction programme and reduced to 7.5mgs two weeks ago. My legs are not only like lead but also very stiff, especially after sitting/lying down for any length of time. When I get up, I have to stand still to stretch out before I can walk forward. Then I sort of shuffle for a bit. My left leg is the worst. Some days, I get to the bottom of the stairs and look up and they look like 'Everest'! It's only the fact that our loo is upstairs that forces me to make the effort! Yesterday I also started getting the pelvic girdle pain again that was one of my original symptoms. Don't think I will be reducing any more for quite a while. Thank you everyone. Once again you have all helped me to put things into place. Take care, Debbie.
You have probably gone too far in your reduction. What size steps were you using? Below 10mg you should be using 1mg steps at the most or you will miss your endpoint: the lowest dose that manages the symptoms adequately. The pred hasn't cured anything, it is managing the inflammation to relieve the pain and stiffness it leads to. You cannot use a "reduction programme" unless it takes that into consideration. What you are describing is typical PMR stiffness and myogelosis - you are now on too low a dose, you need to go back to the last dose that you were comfortable at and then reassess the reduction. Leave it alone and you risk being back where you were.