What does WG pain feel like?

[NicShaf]

I was diagnosed in the pretty early stages of WG, and I never had pain related to it before. As my medications have been reduced in the past couple weeks, and in the coming weeks, I have been paying very close attention to any changes in my body.

Yesterday, out of nowhere, I had these aches in my legs that lasted most of the day, and then proceeded to move to my arms. Toward the end of the day, before I went to bed, they got much better. And when I woke up this morning, I feel like myself again.

I had experienced something like this about a week after I started Cytoxan last January, in my left leg, and it also went away quickly, within a couple hours. After ruling out a clot, my doctors chalked it up to the higher than usual Bactrim dose being taken with the Cytoxan together, so I started taking them at different times, and only 1 Bactrim pill every other day, and the problem never returned. So, I thought, problem solved.

What I had yesterday felt the same, but more widespread. So I was wondering if it could be Wegs, or if Wegs pain would go away that quickly?
Another thought I had was that I had a load of sugar in the past two days. I received a Starbucks gift card, and thought I would treat myself to a sugary coffee drink...in hind sight that may have been a horrible idea. Could too much sugar while still in 3mg of Prednisone cause this sort of reaction?

Thanks for your thoughts

[Dirty Don]

Hi Nicole, I was dx in early stages too this summer. Am on pred and mtx. Sugar doesn't seem to affect these drugs, BELIEVE me!! LOL! I did experience the body pain off and on, but just prior to the flare that put me in the hospital. Not trying to scare, just be aware. And act on anything that even seems strange...docs should know this...if your docs don't allow/react to your needs, then you need another WG doc. Anyway, because WG varies so much from individual to individual, it's hard to get a lock on any feelings this disease brings up or promotes...part of the fun of WG!! LOL!

[Sangye]

Nicole, migratory pain that appears and disappears can be a sign of active Wegs. Keep an eye on it, and let your doctor know if it continues or gets worse.

The Wegs dog likes to toss symptoms around like tennis balls sometimes, but many times nothing comes of it. I guess he just gets tired and goes back to sleep!

[NicShaf]

You're right, Don. I just sent my Doc an email. He is very attentive, that isn't the problem. I think it is more that sometimes I'm almost afraid to admit to myself that something could be wrong, almost like if I ignore it , it will go away. I know that is stupid, but I'm sure we've all been there at one time or another. We'll see what he says, and see if it comes back. So far, so good.
Thanks for responding

[NicShaf]

Nicole, migratory pain that appears and disappears can be a sign of active Wegs. Keep an eye on it, and let your doctor know if it continues or gets worse.

The Wegs dog likes to toss symptoms around like tennis balls sometimes, but many times nothing comes of it. I guess he just gets tired and goes back to sleep!

Thanks Sangye, that is helpful to know.

[Dirty Don]

Nicole, you seem to be on the right track...WG is what it is, different for all of us...be patient, be persistent...it ain't going away and neither should we/you!! Knowledge helps a lot, friends help even more, taking care of your self is the greatest thing you can do for others...narcissistic, but very true if one wants to survive!!! LOL!

[delorisdoe]

My answer to this is really long so I will not go there but the short of it is...it comes out of nowhere, it hurts like hell, it moves to different areas with no rhyme or reason and can spontaneously go away without any explanation only to reapear after you convince yourself it was not wegs.

[Dirty Don]

LOL...and really good sense of humor about all this is very important!!! Well stated Leigh!!! lmao...

[HypnoticEyez]

What Leigh said. I've had 8 children, 2 by c-sect, 6 drug-free and I can tell you the joint pain from WG is far worse.

[Al]

What Leigh said. I've had 8 children, 2 by c-sect, 6 drug-free and I can tell you the joint pain from WG is far worse.

Wow. Getting them all raised up must have involved a few pains as well....

I doubt you can blame the sugar. Prednisone can push glucose levels up into the diabetic range, but your dosage is pretty low. Leg aches can come with edema, which is a sign of depressed kidneys, but you didn't say anything about swelling. There are a lot of unknowns with this disease, but you are right to let any anomaly drop just because you can't explain it.

Al