Weird Wegs Symptoms

[AndrewMcC]

Have you found any remedies? Sorry to hear of your afflictions but glad of the solidarity. Its amazing how that common symptoms become less scary.

[Cindy M]

I agree with Col 23. I have alot of the same symptoms, my left foot and ankle swell instantly as soon as the weather turns warmer. Never had this problem before. I also get alot of leg and feet cramps. Just rolling over in bed or walking up the stairs will set off a muscle cramp. I am getting worried though because I still cannot walk long distances, or any sort of distance without feeling weak, back pain, just totally exhausted. I also tend to feel hot, almost like night sweats, but not.

[elephant]

How is your calcium, potassium and magnesium level? If those are off you can have muscle cramping. I also got muscle cramps when I was on high dose of Prednisone.

[Cindy M]

I am taking calcium vitamins but I am not sure about my potassium and magnesium levels. I also take Vitamin D. I went for a bone density test today and will get the results back in about 1 week. Also I have started taking Etidrocal over 1 week ago because of the high dose and long term that I have been on preds.

[jola57]

Cindy M, eat a banana a day and say goodby to cramps (well at least we can wish), it does seem to work for me. It has been 3 and 1/2 years and I still feel like you just described. I don't think the tiredness and achiness will ever go away. I simply have gotten used to not being able to take long walks and doing everything in modaration.

[Sangye]

Cindy, you and I have such similar symptoms. You should take a calcium supplement that has magnesium in it, in the proper ratio. (You might need more magnesium because of the pred, but start there and see) As for the utter exhaustion, that's a combo of active Wegs and the deep depletion caused by pred. The best advice I can give you is not to try and push through it. That only digs a deeper hole.

Focus on motion, not exertion at this point. I posted suggestions about using a pool and a pedal exerciser. Both will accomplish that without weakening you more.

[Col 23]

Sangye, I was wondering how you were going as you mentioned in a earlier thread your had just been to JHU. Love the focus on the motion not exertion, I pay for it everytime I overdo it.
Col 23

[Sangye]

I'm doing okay. No signs of major Wegs activity. I'm tapering the pred as slowly as is humanly possible-- by 0.25 mg every few days. I've been at 3 mg for longer than I thought. I was getting a lot of worrisome symptoms and decided to hang out at each level until they eased up. Basically I have so much damage from Wegs directly and collateral damage, that it won't be until I'm totally off pred and have the Wegs totally under control (which it's never been) before I can tell what I'm left with.

[elephant]

I'm right there with you Sangye, wondering the same thing. Another wait and see! Hoping no Wegs activity for all!!!!!!!!! Did you hear that WG! Oh, yea ...i'm suppose tip toe ever so gently..shhhhhh

[Col 23]

Its great that your tapering the dreaded pred. fingers crossed for you.
Col 23