Achy legs. Next to impossible to stand

[TOBEY32]

In particular, in the morning. I'm hopping from one leg to another, and then it's only for short periods. Staying off of them till it's over (a few hours) is the only thing that helps. I will ask my kidney doc if he knows the cause. I wear anti-embolism stockings, but it doesn't seem to matter whether I wear them overnight or not, mornings are still the same.
Have you experienced this?

David

[Psyborg]

That was one of my main symptoms at my initial flare. It got so bad I had to slide down the stairs on my butt to get downstairs every morning. And in general it did clear up a little a few hours later, though it hurt constantly...just a bit less later in the day. I'm not sure how far you are in treatment, but I'd suspect things aren't under control yet if that is an issue for you.

[TOBEY32]

I take 100mg/day of Cy and I am down to 10mg/day of Pred. Should I be on more than I am? I have no idea. Hopefully the kidney doc tomorrow will know better. He's rather straight-faced and not overly forthcoming with info, but he has said he has other Weg's patients.

[Jack]

Foot and lower leg pain seem to be very common, but not mentioned much in the published material. Many on here have had investigations of various sorts and nerve problems are common, but no-reason-found is common too.

[elephant]

I agree, it sounds like a flare to me. Hope you get it sort out soon.

[Sangye]

Yup, sounds like active Wegs. I had severe joint pain before being diagnosed. Mine always followed the same pattern, too--- terrible in the morning, better by midday, then began increasing again by 8pm.

[aewaustin]

I had the same thing when I was diagnosed the first time. In the morning the pain was so bad that it was a ten minute process to just get out of bed. 10 mg of prednisone sounds really low to me... Based on how my body reacts to prednisone I know that I had to be on 60 mg to help control what I had the first time.

Also are you seeing a Rhummy? I personally would not let a kidney doc manage my care (actually did that for a bit and was a huge mistake). Have you been to one of the experts on Wegs? I am a huge fan of Dr. Langford at Cleveland Clinic and *highly* suggest getting yourself to a Weg's expert somewhere. It is an expense, but was worth every penny (I had to travel from Texas to get to Cleveland). Others on here will echo the same sentiment...