side effects

[Sangye]

Hi Kelley, I'm glad you found our group. It's good to hear your husband is making progress since being diagnosed.

I have a major problem with lower extremity swelling. I can only stand for about 5 minutes, or walk for 10, before my legs fill up like sandbags. Very painful. I only have one pair of sneakers I can wear and can't wear socks above the ankle. Even in winter. The more active my Wegs, the more swelling I get. Also, the more exhausted I am, the more my legs swell.

Here are the most common reasons for lower extremity swelling in a Weggie :
1) Active disease (Wegs).
Ankle swelling is somewhat common, and may be one of the early signs of Wegs. It was for me.

2) Blood clots in the legs.
Weggies are 23% more likely to develop them. His docs have to be aware of this. I had this, too.

3) Heart problems.
A number of heart problems cause leg swelling. Wegs can cause silent heart damage. He should have an annual echocardiogram.

4) Kidney problems
Wegs can affect the kidneys and likes to be secretive about it. We have a number of members who were in full-blown kidney failure but had no idea. Regular blood work and urine will check.

5) Pred
Pred causes global water retention and swelling. The lower extremities take the hit because of gravity.

6) Kidney Chi weakness
Not something a medical doctor can measure! The kidneys/adrenal glands take a beating with pred and the other drugs. It depletes the chi and this shows up as leg edema, weakness, heaviness, etc....

[JanW]

Was your ankle swelling bilateral at first, Sangye? As you know I've got swelling and pain in one (and it's been killing me the last couple of days because of the dampness and snow), but the other is fine, and there's no swelling in any other joints. I'm convinced this ankle isn't going to fully heal until the WG improves, and you can really see that it's all bone marrow edema (which showed on the CT and MRI), not the pitting kind. Rheumo and pod seem to think that if it were directly related to the disease (as opposed to not fully healing because of disease) it would have started out as, or become quickly, bilateral. Of course my initial foot problems started out as foot pain, and that was bilateral, so I suppose the ankle swelling and pain could have been collateral damage from that (the fact that it's a diagnosed stress reaction could mean that this is the case).

[Sangye]

I think my ankle swelling began on the right side and became bilateral. It's always been worse on the right until last year, when it switched.

Most of my joint pain is not accompanied by swelling, heat or redness.

The notion that only bilateral symptoms indicate Wegs activity is entirely inaccurate. My first symptom was unilateral Achilles tendon pain. Months later I awoke with a single thumb joint inflamed and excruciatingly painful. For several weeks the only joints affected were on my right hand. It was months before anything on my left was affected.

Your docs are basing that assumption on the general rule that systemic disease (of any sort) presents bilaterally, while local disease presents unilaterally. Not so with Wegs. It does anything it wants, wherever it wants.

[JanW]

Yes, this is definitely not tendinitis pain -- no heat, swelling or redness here either. In fact we know it's bone edema, because that's what the CT and MRI say that it is. I can stick it out (Lord knows it's better than it was) but it will be interesting to me to see whether or not it gets completely under control when the WG is in a more quiescent state.

[Jack]

I have to agree with Sangye on the nature of the Wegs symptoms not necessarily being bilateral. The numerous problems I have had over the years have always had a bias to one side or the other.

[elephant]

My Wegeners, seems to like my Left side...the wegeners attacked my Left lung, ear, maxillary sinus, eye, arm and leg. When the WG got really bad it attacked all the joints to the point...of being disabled.

[Sangye]

I typically have more right-sided involvement. Of my bilateral symptoms, most are worse on the right. Even my right lung hemorrhages worse than the left. Elephant, we're bookends!

[Lightwarrior]

I have had extreme fatique for the last two days(short of breath with exertion) I'm down to 45 pred and remain on 250 cytoxan. 2 bouts of diarhea (sorry, not attractive visual). My CBC on Friday of course all low but not panic levels, but for the second cbc in a row I have aniscoytosis, first moderate and now marked with dual cell population. I'm thinking they need to ask for a B12 and folic acid level??? Since the labs were drawn on Friday no-one will see until Monday unless I make a call, not sure there would be a reaction. I'm thinking side effects of cytoxan?? I also had a very busy week at work and have found that since i went back to work full time i spend my saturday sleeping and sunday taking it easy then I'm ready for Monday. I'm hoping tommorrow is different.

Enough of my problems, I usually have left sided dependent edema followed by right, most usually cured by getting off my feet. Due to the general fluid retention caused by pred I have prn (as needed) lasix (should always take potassium prescription when you take lasix). I was diagnosed in December 2009 and have only had to use the Lasix twice so far. Like Sangye I can only stand for about 5 minutes, but mine is back fatigue, sitting down for two or three minutes relieves it.

[elephant]

I am so sorry you are feeling bad Lightwarrior. You might need a CT of your lungs, to check it out. I can't remember did you have lung involvement? The Rheumy is always concerned if I am short of breath all of a sudden ( something new). How long have you been on Cytoxan? Your amazing, that you are working. Your a strong person. Hope you feel better soon.

[moyan]

Hi, I wonder if I am right on this: If you click to see original message, then click the reply arrow below, your answer comes to the right addressee. Hope you are feeling better, spring is in the air, I can smell it.