side effects

[kmcgee21]

My husband was diagnosed with WG in October 2009 and we have come a long way. He is not in remission as yet, but our doctor thinks he is steadily moving in that direction. My main concern right now is that he is having a considerable amount of edema in his legs and feet (from the knee down). It is worse in the right leg. Our primary care dr and our rheumatologist both say it is a side-effect of the prednisone (he was on 60mg and has recently been reduced to 40mg). I have done a good bit of research into prednisone side-effects and they all talk about edema of the face but not the lower extremities. Has anyone else had this side effect? He has difficulty walking because the swelling is so bad. He also had to have two toes amputated due to necrosis. I have read many of your stories and I have not seen anyone with this kind of reaction to WG. Has anyone else had to deal with this? I apologize for being so wordy...this is my first post on here. I will tell his story in detail later on a different thread.

[JanW]

Don't ever apologize for being wordy here, Kelley. I've not been on high-dose pred, but I'm sure others will be along to share their experiences. I have a lot of problems with my feet right now, so I definitely feel your pain, and I think there is at least one other member on here that may have struggled with their toes and the disease.

[jola57]

Hi Kelley and welcome. I do not have edema as bad as your husband but enough that wearing normal shoes is out of question. I also have peripheral neuropathy, where I can't feel my feet as they feel numb or feel like thousands of ants live on them when the feet are touched. We have at least couple of weggies that have lost toes and may be in the same shoes as your husband (some humour there if you are not ofended). I am now on 8mg prednisone and have noticed no change to the time when I was on 60mg. I think that my neurons in my nerves are broken (in plain speaking)and will never regenerate so I am stuck like this. When I had a dropped left foot I was told that it was due to prednisone.

[moyan]

Hi all and welcome to this family, Kelley. It seems you all are talking about my right leg: Amputated toe due to misdiagnosis, 2 years to heal (he had to go so deep and the prednisone wanted me to enjoy bandages by nurses), feet are like soccerballs when at worst, but cutting down on pred seems to help a bit. There was a time when I wore high heels.................worn down §10 shoes is now my fancy. One doc recommended support stockings but I know I would have megaproblems getting them on, can't reach my right foot due to hip problems. So I got even lazier and now sit a lot watching TV with feet higher than my heart, it helps. About edema, I call my new predsize tummy edema
Moyan

[Jack]

I had edema associated with renal failure, but taking diuretics cured it (the swelling, not the renal failure! ). I hope his renal function is being monitored closely.

[moyan]

I really do not know, Jack. I do not communicate well with the main doc (in the process of finding some other that know something about WG)
He, kidney spec and family doc are all happy with what they see in the blood. No urine samples yet. As of a year, reading has been stabilized and they say not to worry. Thanks for responding

[JanW]

I'm actually not sure why you need to have both urine and kidney blood work done, but my rheumo does require it. Every other week for the first year after diagnosis is all I know so far, except when menstruating. I basically live at the rheumy, which doesn't include all of the ENT visits.

[moyan]

Thanks Jan, I'll see a rheumy wed and will ask him. I know protein is one reason, but that I can see after going to the bathroom. Foam if reason to worry.

[JanW]

I just pulled out my first bloodwork and it looks like they tested for about 15 different things including: pH, glucose, protein, ketone, hemoglobin, urobilinogen, leukocyte, nitrite, white blood cells, red blood cells, squamous epithelial, mucous and non-squamous epithelial. I'm sure it's some kind of standard panel - maybe dipsticks tests for all of these things -- I don't know. The only blood test with urine that I specifically recognized on my sheet was creatinine.

I'm sure all of this info is useful to the docs so that they can pick up the slightest thing before it becomes any kind of issue at all, rather than relying on the patient's word for things, or, God forbid, symptoms of something new and troubling.

[moyan]

Thanks, Jan