Discomfort in leg: I have been experiencing... - PMRGCAuk

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Discomfort in leg

bert403 profile image
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I have been experiencing discomfort on the left side of calf only when walking or standing. As soon I I raise my leg it goes away.. it is pretty constant and hard to walk. Have had it awhile ago, but disappeared right away. Could this be another side effect of Pred? I have GCA and down to 15mg for 3 months due to gallbladder removal an other issue. Hoping to tapper down next week. Was wondering if it could be a vein or circulation problem. Any thoughts? Thanks

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bert403
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21 Replies
PamelAnneCT profile image
PamelAnneCT

I get it too, I'm at 25mg a day. I think it's my muscles getting weaker because of the pred, asked my gp and she said to try massaging and if it gets worse to let her know. She said to walk as much as I can or to at least stretch to keep as much muscle tone as possible. I try to, when I have some energy!

PMRpro profile image
PMRproAmbassador

If it were a side effect of pred on the muscles I'd expect both sides to be similar. If it starts when you walk - does it also go away when you stop walking, even without lifting your leg?

It is important to try to walk as much as you can - even if you don't feel you have the energy - in order to keep your leg muscles in good shape. If you don't use them then they will waste, even without the effect of pred.

Strangely - keeping up some form of exercise, walking being ideal, will have a beneficial effect on the fatigue and lack of energy. It doesn't have to be half an hour all at one go but repeated 5 or 10 minute walks, as briskly as you can manage, all count. Half an hour a day is the minimum you should be aiming for. A study is about to be started on this on patients taking pred.

I know how difficult it can feel - but it does work. I always notice I feel less energetic (all things being relative!) when the weather has been bad or too hot (the latter is rarely a problem in the UK but I live in Italy) to go out for our usual daily walk. After 2 or 3 days getting out though I really do notice a difference in how fast I can walk! Three years ago I could barely get to the village, about 200 yards, even with crutches. I have slowly built up the distance and speed I walk - and the difference in how I feel has also noticeably improved.

bert403 profile image
bert403 in reply to PMRpro

Thanks....I don't think it is lack of exercise...I go to the gym 4x per week...treadmill, abs, legs & arms...also ride my bike and walk 6 miles on the weekend with a friend...so that can't be it...I am never tired..have been exercising my whole life, other than GCA was in perfect health.

It doesn't go away when I stop walking..as long as my leg in in the down position it is there. It doesn't always start up as soon as I walk, but it doesn't take long for that discomfort to start...I haven't been exercising for the past 2 weeks due to gallbladder surgery, have to wait another 2 weeks. Glad the exercise has helped you and I am sure for me also, but it seems to be an isolated area only on that left calf. I will wait and see if it gets better...have appt next week with Dr. Thanks

PMRpro profile image
PMRproAmbassador in reply to bert403

I'm assuming there isn't any swelling or heat where it hurts?

Actually, my post was as much directed at PamelAnne as you - you've been very lucky if you didn't develop the dreaded pred fatigue! Sometimes I think GCA has some aspects that are preferable to PMR!

bert403 profile image
bert403 in reply to PMRpro

No swelling or heat...I do have a spider vein in the area, so maybe that is why is was so concerned...going to the mall today...should be a good test...ugh.

PMRpro profile image
PMRproAmbassador in reply to bert403

No see - PMR does have positive sides: I can always claim I'm too tired to go shopping anywhere! I'm not a normal woman - don't do shopping, shoes, fancy clothes, make-up...

bert403 profile image
bert403 in reply to PMRpro

Oh...so sorry...I do hope things get better for you. Your posts & reply's are very helpful...hang in there!!!

PMRpro profile image
PMRproAmbassador in reply to bert403

They are better bert - but I don't always let on as I detest shopping! Well, maybe for a car...

Told you - not a normal woman!

We spent 3 weeks in China earlier this summer and I kept up with the tour group from early morning to late afternoon - still on 4mg of pred but otherwise I'm fine. We were home for a week and set of for the UK - I drove 4000km/2,700 miles in just over 2 weeks. My husband did about 80 miles one afternoon when I was sleepy after driving through France, otherwise it was me all the way!

bert403 profile image
bert403 in reply to PMRpro

It's good to hear you can do the things you want to do without much discomfort. sometimes we have to push ourselves, but in the long run it pays off. Keeping active plays a big part...also learning to not complain too much...it gets old after a while...people not on Pred just don't understand it is a daily thing and may get tired of hearing about it...so have to keep quite and use this forum for answers. take care...off to the mall...leg already started acting up.

babssara profile image
babssara in reply to bert403

Hi bert 403, totally agree with you. This site really keeps me sane! Loads of gentle hugs and great recommendations all to help fellow suffers. Have a good weekend everyone with lots of gentle hugs for those in need. Babs x

PMRpro profile image
PMRproAmbassador in reply to bert403

See - told you, that leg doesn't like shopping ;-)

I had 5 years of PMR without pred - which is a pretty good training for not complaining! No-one at all takes it seriously so you just have to bite your lip and get on with things. Five days a week at the gym kept me upright - when that was taken away I crumbled completely. But the pain relief with pred was wonderful when it finally happened - but that was the beginning of the next round.

bert403 profile image
bert403 in reply to PMRpro

Your right...leg did not like the mall...had to leave. Wow, 5 yrs no pred was great, unfortunately things change. I find its a new adventure e eryday. Getting tired of the daily changes and the unknowing. Just wishing to get off pred...long way to go....good luck to you and everyone dealing with this....bert403 .

PMRpro profile image
PMRproAmbassador in reply to bert403

My 5 years WITH pred have been far more comfortable than the 5 without - I was never out of pain. The last 5 years have held some interesting moments for other reasons - but I wouldn't go back.

bert403 profile image
bert403 in reply to PMRpro

PMRpro...I have been searching about the discomfort in my calf...It is almost impossible to walk on it for more than a few minutes and then it starts...everytime I sit down or raise my leg is stops. I have come up with Intermittent Claudication. Symptoms are exactly what I have. It seems artery in leg is narrowed and not enough oxygen in the blood going to the artery. Not sure if Pred related or GCA.. Can't wait to go to Dr on Tues with my diagnosis. I am 99% sure that is what is happening. I was searching this for hours and I am very worried about it. Says you need to go to a vascular surgeon for testing. Did you or anyone else ever hear about this? Thanks, bert403

PMRpro profile image
PMRproAmbassador in reply to bert403

I have - vascular medicine was my husband's specialist area in the NHS! I worked there too for a short time.

That's what I was asking about before - if it started after a short time of walking and did it stop when you stopped walking or was it ONLY when you lifted your leg. That is typical claudication pain.

Peripheral vascular disease is often a late consequence of GCA - the inflammation damages the inside of the artery wall and then it thickens for various reasons, reducing the blood flow on the other side of the blockage, away from the heart. It may be only when exercising that the blood flow isn't enough to provide the amount of oxygen required - but as it gets worse eventually the oxygen supply isn't enough for anything the muscle has to do and then you can have pain at rest.

Testing includes measuring the BP in your arms and ankles and checking the pulses in your ankles. Often you have to walk on a treadmill to see how far you can walk before pain starts. They usually also do ultrasound to look for narrowing of the artery. This allows them to decide on the best way to go about it.

The first thing they usually tell you is to try walking further - walk until the pain starts and then a bit further. Once the pain has gone with rest, walk again and repeat this. With time this can increase the distance you can walk considerably. However, once the amount you can walk gets below a certain distance they consider other approaches.

There is no need to "very worried" - but do go and discuss it with your GP and ask for a referral to the local vascular service. Usually it has been the surgical consultant who then referred you for the tests but in some areas the GP is now able to refer you directly to the lab for the initial tests - usually the ultrasound and ankle pressures pre and post exercise. The lab is far better able to get accurate readings since they use different equipment and do it every day - the nurse in the practice just uses an ordinary stethoscope.

bert403 profile image
bert403 in reply to PMRpro

Thanks...it seems exactly what I am experiencing. Is there a difference between Intermittent Claudication and Peripheral Vascular disease? I live in the USA, Florida and have the best medical Ins there is. No referrals, no waiting, no centers, etc....straight to the Dr of choice. I do have appt on Tues with my regular Dr (Gastrointerologist) and he will send me to the proper Dr and proper testing...Can't wait...leg is really bad. Just hoping its not to serious. It just started one day last week, no warning, no symptoms, just there. You made me feel a little better, because I was worried about blood clots or other major issue. Thanks so much for you input...keep you posted...Good Job!!!

PMRpro profile image
PMRproAmbassador in reply to bert403

PVD is the general name for the cause of the symptoms termed intermittent claudication. If it started suddenly then that MIGHT suggest a small clot or other blockage somewhere - but that you can still walk some distance probably means it isn't a total blockage. However - some prompt investigation is called for so your insurance will come in very useful.

Do let us know how you get on.

bert403 profile image
bert403 in reply to PMRpro

Hi PMRpro...thought I would update...went to Dr...had ultrasound of both legs..veins and arteries..everything clear..also 6 vials of blood..waiting for results. Possibly constriction of calf muscle causing same symptoms as intermittent claudication. Also, as I walk it hurts and when I rest it stops.. the muscle relaxes. Hopefully not serious. Will give update...bert403

PMRpro profile image
PMRproAmbassador in reply to bert403

That would be a far more pleasant option - fingers crossed!

bert403 profile image
bert403 in reply to PMRpro

Hi PMRpro...ok..update on leg...all bloodwork came back good. Since the gallbladder surgery things have calmed down except for the leg tightness in calf. Ultrasound of legs showed nomal. I think I have the answer. I started to take Biotin and Folic Acid for the hair loss. A friend of mine told me she tried 3x to take Biotin and each time terrible pains on bottom of feet. I then searched "Biotin and muscle leg pain" and sure enough it can cause my pain.

I'm taking It about 3 weeks and shortly after the pain started only walking. Yesterday I took it around 6 pm and was home for the night and since I was not walking...no problem. I will see what happens today. If I'm wrong, do you think it can be another side effect of Pred? Thx, bert403

PMRpro profile image
PMRproAmbassador in reply to bert403

But it wouldn't be a problem if you weren't walking would it! I'd try leaving out the biotin rather than leaving out the walking.

Muscle pain and cramps are listed as a side effect of pred. I'd have thought it would be more generalised and not just in a single place but I might be wrong. Pred can lead to muscle wasting and muscle breakdown but I imagine your doctor has considered that.

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