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kmcgee21
02-27-2010, 03:59 AM
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
02-27-2010, 04:21 AM
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
02-27-2010, 05:14 AM
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
02-27-2010, 06:31 AM
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
02-27-2010, 07:27 AM
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
02-27-2010, 07:53 AM
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
02-27-2010, 07:57 AM
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
02-27-2010, 08:00 AM
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
02-27-2010, 08:19 AM
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
02-27-2010, 09:09 AM
Thanks, Jan

Sangye
02-27-2010, 09:09 AM
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
02-27-2010, 09:18 AM
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
02-27-2010, 10:19 AM
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
02-27-2010, 11:50 AM
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
02-27-2010, 07:08 PM
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
02-28-2010, 01:35 AM
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
02-28-2010, 12:26 PM
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
02-28-2010, 04:14 PM
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
02-28-2010, 11:09 PM
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
03-01-2010, 01:07 AM
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.

Sangye
03-01-2010, 01:20 AM
Lightwarrior, if you only had extreme fatigue, I'd chalk it up to ctx. But shortness of breath can be lung involvement or pulmonary emboli. I would think a CT of the lungs with pulmonary angiogram protocol is in order.

Please tell me you meant 150 or 200mg ctx. 250 mg is awfully high! They need to make sure your blood count isn't decreasing too quickly. It might still be in normal range, but a steep decline could reflect bone marrow suppression. That's what ctx does to me.

I hope you feel better soon. :)

Lightwarrior
03-01-2010, 02:02 PM
No its 250. I do weigh 289, probably more like 300 now and I'm 5'10. Wish I'd got around to losiing weight before this hit. I'm worried about bone marrow supression, but thought maybe I was weirding out. I will call my Rheumy tommorrow. Yes i did(do) have lung involvement. The nehprologist and pulmonologist (i've worked side by side with them for 10 years) I think are too close to me to be completely objective, the rheumy has been right on target so far. Thanks for the feedback. I do feel better today, not as nauseauted and I seem to have lost the runs by doing the old clear liquid toast diet.

Sangye
03-01-2010, 02:20 PM
Okay-- make sure the rheumy knows Weggies are 23% more likely to develop DVTs (famous "WeCLOT" study). Glad you're feeling a bit better today!

jola57
03-01-2010, 04:46 PM
lightwarrior, glad you seem to feel better. For me the runs are just a way of life. i always joke that I scope out where the bathrooms are the same way thieves look for exits. You know the rule of not getting up in tha last 1hr of flight, well I think that i would be an exception to the rule or everyone would be very sorry indeed.

elephant
03-01-2010, 10:08 PM
I am glad you are feeling better Lightwarrior. I just wanted to add, that I had the runs last summer and my potassium went down below normal....just keep an eye on that. One of the symptoms of low potassium....is feeling tired.....I am sure you know this very well ....I know you are on top of your game! :)

Sangye
03-02-2010, 01:43 AM
i always joke that I scope out where the bathrooms are the same way thieves look for exits.
LOL-- This is how I was when I was on Cellcept. I haven't had it for awhile, but I'm still a bit hypervigiliant about knowing where the bathrooms are.

I'm definitely this way about chairs, because I can't stand or walk for long. I can tell you where the nearest chair is everywhere I go. I scope them out silently. If I have a friend with me, sometimes I tell them about this "inner life" I lead-- always noting where are the chairs, what have my hands touched, where's the nearest hand sanitizer, how far a walk is it, how long do I have to stand, who in the room is coughing/sneezing/looks sick, etc.... Like I have a mental notetaker.

kmcgee21
03-02-2010, 03:23 AM
Our dr. closely monitors his creatinine level (which we have been told is a good indicator of kidney function) and at last count it was at 1.7 (1.3 being normal). He does still have some blood and protein in his urine, but all docs are pleased with the creatine. So please in fact that his dose of cytoxan was reduced to 150 mg from 200 mg.

Lightwarrior
03-02-2010, 04:00 AM
Runs as a new way of life
LOL, I do notice i have changed the way I scope out a room. Today I added two scrub bottoms and clean underwear to my personal drawer in my office. I haven't needed those since I completed menopause. I have new certain routes I travel based on available seating to take quick sit/breathers. At least we prove we are all quite adaptable, sounds like none of us give up we just find new ways to do what we want to do. That makes us pretty unique :-)

elephant
03-02-2010, 05:36 AM
In the last 30 years I pee so much I should really have a rolling portable potty! I am picky about my potty, it has to be a clean place. Or I might as well buy a toddler portable potty that plays music when you sit on it.

Sangye
03-02-2010, 06:42 AM
I might as well buy a toddler portable potty that plays music when you sit on it.
This had me doubled over laughing. :D

elephant
03-02-2010, 07:46 AM
Good Sangye, glad you laughed! Need one once in a while!

Lightwarrior
03-02-2010, 08:15 AM
Or I might as well buy a toddler portable potty that plays music when you sit on it.

ROTFL Okay, Elephant I'll bite.....what song would you have your portable potty play????

elephant
03-02-2010, 01:02 PM
Lightwarrior, I don't know what kind of music. Any suggestions anyone???? :)

Sangye
03-02-2010, 01:31 PM
You'll have to insert your own name, but here it is:
Potty Song - The one and only customized potty training song! (http://www.pottysong.com/)

(Scroll down on the right and click on "Play Song")

elephant
03-02-2010, 10:56 PM
Sangye, that was so cute and funny. Loved it, and now it will be in my head all day. :)

Lightwarrior
03-03-2010, 12:11 AM
Sangye, Elephant,

ROTFL , Okay I'm a potty girl, I love it. I think we have our selection.