leg issues

[renidrag]

Ditto to that Sangye, I was having incrdeible cramps and then one night incredible pain in my left leg. It passed, anyway, there was a clot and it was only three and a half months after diagnosis. Pred probably. Check for the clots.
Dale

[Stephanie78]

That makes a lot of sense. When he came in the immediately began giving him shots of heaphren in his stomache. But they said the joint pain (in his knees)
Were due to the inflammation?
Explained it like arthritis.

[renidrag]

Try to go deeper into that one, I am assuming the heaphren is what is called Lovenox which I had in my stomach also. It is a blood thinner, he needs an ultrasound of his legs. I also believe we can have arthritis at the same time as what ever it is called (WG/GPA) but please push for the ultrasound.
Dale

[vdub]

Euphoria! I have had a bad week not being able to sleep even with the ambien. Have no idea why, but I'm blaming on the humidity here in the mid-west that I'm not used to and, of course, the ever present aches and pains. Tonight, I just couldn't take it anymore, so popped an oxycodone about an hour ago. Life is good at the moment. Maybe I'll get some sleep.

[Sangye]

Stephanie, I agree with Dale. You need to find out exactly why they gave him heparin shots (blood thinner) and I think a leg ultrasound is in order. The knee pain is not arthritis but is inflammation secondary to active Wegs. It's probably gone by now because of the high dose steroids he's on.

[Stephanie78]

They did an ultrasound on his legs the first night he came in. They said it was xue to inflammation. Everything seems to be inflammed. They didnt say he had arthritis, they said the pain and joint swelling is due to WG but "comparable" to it.
The heapran was to prevent a blood clot while he was in bed. Or so they said. They said that clots are very common with WG and with him laying in bed constantly that it would give him a higher chance. They gave it to him in his stomache. I asked why they didnt do it thru the IV and honestly I can't remember the reason. There have been so many "Big" words over the past 5 days and a lack of sleep that im impressed I remember as much as I do.
=)

[Sangye]

Okay, that is excellent. They definitely know what they're doing. Whew, I'm really relieved. The Lovenox (heparin) shots cannot be given any other way. They're quite painful and will leave huge bruises on the abdomen. I doubt that he's feeling much pain on pulse steroids, though. LOL

I'm very impressed with how fast you're learning and keeping up, Stephanie. John is really lucky to have you! I hope you can get some sleep.

[alexciasmom]

So my question is. Is it bad to feel like you have rls from your hips down and shoulders to fingers?

[Al]

Before I got dx'ed and the Wegs was severely active, my legs would sort of writhe all night long. It was as if they had turned into snakes or something. I know it sounds crazy but there it is. It was one of the early symptoms and returns whenever the Wegs dog is fully awake. I have restless legs on and off these days but it isn't at all the same thing. When it's Wegs, I also can't lay still at night for longer than 2 seconds. I'm serious about that timing. I'll flip to one side then instantly have to move again. All night long.

Yeah--that is my story too. Both before and after DX. Drives my bed buddies (the wife and the cat) crazy....

Al

[pberggren1]

So my question is. Is it bad to feel like you have rls from your hips down and shoulders to fingers?

Not bad at all. But it can be caused by numerous things, mostly meds. When I had it last year and in 2010 it was caused by an antifungal med called Voraconazole. After I went off the med it went away.