Knee/Leg Pain - Traveling Pain

[Meredith]

I have felt the best in the last few months than I ever have since I was diagnosed. In July I went to the beach, rode bikes, walked on the beach, even ran once when I was looking for my granddaughter when a storm was coming up. Before we left for the beach my right knee started hurting. It was really bad when I would swist it. I thought I had strained my knee so I took it easy. Approx. 2 weeks ago after I thought my knee was 95%better it hurt so bad that I could barely walk. Only lasted approx. 12 hours, then a couple of days later the left knee did the same thing. My first thought was I was out of remission though I have never had traveling pains before. I went to the ortho doctor and had him check my knees, nothing there except some arthristis and it was not to bad. Called my Weg doctor and told him what was going on - he said just wait till my appt. in Oct. This weekend the pain was in my left knee (or slightly) below. Could barely walk again. Is this what the traveling pains do? Just did not know if I should call my Weg doctor. Wondered if this shows I am starting to go out of remission or already out. If it is traveling pains should I rest it or is exercise the best to get over it sooner?

[Dirty Don]

Meredith, if that joint pain is recurring & roaming, then it may be a flare. If it is steady, it's probably a strain or damage outside of WG. Have you tried any analgesics to lessen the pain? Did they work at all? If not, then really look at a flare. If it is not a flare, but some kind of damage to the knee area, then ice, stretching, some exercise but mostly stretching till the pain recedes should help. I had a big beginning of summer trip, and have been feeling the 'effects' most of the rest of the summer in stomach upset. Comes and goes, not WG related directly at this point, but I still deal with it and it, I think, makes me all too aware each day that it happens and I tend to dwell on it. That doesn't help at all either!

[gilders]

Hmm, it is a tough call.
I have been having sooo much trouble with my left foot and it is coinciding with many other flare symptoms. Scans are also showing Rheumatoid arthritis in my foot (much like your knee). My specialist advised that I have pins in my foot once the arthritis deteriorates my foot even more. Typically it's got much worse now.

I do remember that when my WG was at it's most aggressive it was more than just one set of joints effected. I'd have it checked out and if another joint starts playing up, then I would be much more concerned.

[Pete]

Just got back from my rheumy after having similar symptoms. She suspects a flare as I also have a slightly elevated creatinine level and 1-2 red blood cells/unit of measure in my urine. Best guidance I can give you is call your wegs doc back and see if you can get in sooner. Good luck.

[gmyi]

Prednisone can cause damage to the bones and that could be the reason of pain I have that pain since 2007 the pains are in both legs I made DXA check and the result was that I have bone damage
hoping you will get relief from pain

[pberggren1]

I'm getting a densitometry in 10 days. I hope I am not in too bad of shape.

[gmyi]

Hi Phil
I wish all best

[pberggren1]

Thanks. Have you been in contact with Alysia?

[gmyi]

Yes several times we had been in touch by mail and change some info

[Geoff]

Hi Meredith,

Sorry to read about your pain and I have to say it struck a chord with me. These past 2 months I have experienced sharp stabbing pains in my feet and painfull legs, even when lying in bed. I had chronic joint pain before I was DX (5 years ago) but nothing since then.

I have a feeling its probably 5 years of constant steroid useage. Have you been on pred very long?

[drz]

Hi Meredith,

Sorry to read about your pain and I have to say it struck a chord with me. These past 2 months I have experienced sharp stabbing pains in my feet and painfull legs, even when lying in bed. I had chronic joint pain before I was DX (5 years ago) but nothing since then.

I have a feeling its probably 5 years of constant steroid useage. Have you been on pred very long?

That sounds like my neuropathy pains which sometimes can happen with Wegs too.

[Meredith]

I have been on Pred on and off for 9 years - on .5 now for 1-1/2 years. finally feeling better, no pains in the legs anymore. the doctor moved my appt. so I don't see him till November. I will be curious what the blood work shows.