wegners & dialysis

[cheryl106]

Hi, I am new to this site. I am a concerned wife of a Wegners patient who also has to go through dialysis because of it. It has been 2 years since diagnosed and he has come a long way since then. As many of you are aware of how sick you are before it is actually diagnosed. It caused paracarditis (heart) and then loss of kidney function before diagnosed. He has been on the prednison, chemo med (not sure what it was called), rutixin. Of course with little kidney function he is on lots other medications also. Two months ago his gums swelled and his face. At first we thought of his teeth because he had tooth problems before his sickness was diagnosed. They did blood tests and confirmed he had an infection and went on antibiotics for 5 days then it was gone. He has improved but still feels punky, no energy, tightness in chest. We then thought of a flare up and there has been blood panels done, urine samples, chest xrays and nothing has come back positive. Is it just the way it is and this is just a spell he is going through? Just taking a long time to get over. He has had a poor stomach too. Feeling ill a lot. Just wondering if someone else has gone through similar issues too and trying to stay positive.

Thanking anyone
Cher

[drz]

Hi, I am new to this site. I am a concerned wife of a Wegners patient who also has to go through dialysis because of it. It has been 2 years since diagnosed and he has come a long way since then. As many of you are aware of how sick you are before it is actually diagnosed. It caused paracarditis (heart) and then loss of kidney function before diagnosed. He has been on the prednison, chemo med (not sure what it was called), rutixin. Of course with little kidney function he is on lots other medications also. Two months ago his gums swelled and his face. At first we thought of his teeth because he had tooth problems before his sickness was diagnosed. They did blood tests and confirmed he had an infection and went on antibiotics for 5 days then it was gone. He has improved but still feels punky, no energy, tightness in chest. We then thought of a flare up and there has been blood panels done, urine samples, chest xrays and nothing has come back positive. Is it just the way it is and this is just a spell he is going through? Just taking a long time to get over. He has had a poor stomach too. Feeling ill a lot. Just wondering if someone else has gone through similar issues too and trying to stay positive.

Thanking anyone
Cher

Infections are common with Wegs. Feeling crappy after being sick is not unusual and recovery can be very slow with Wegs. Loss of kidney function and taking many meds can also cause many problems for us through side effects and even drug allergies. Wegs can do many things and is often, maybe the usual culprit, for many of our problems and symptoms. But having Wegs does not mean that you cannot have another problem that needs to be identified and treated so he may need more evaluation by doctors familiar and experienced in treating Wegs.

[JeanMarie]

Hi Cheryl & welcome. I'm sorry you are here but this is a good
site with lots of info. DRZ has given good advice. You should also
check out the Vasculitis Foundation site:
Vasculitis Foundation (http://www.vasculitisfoundation.org/)

They have a lot of information for people new to this disease. I
hope your husband continues to make progress. Best wishes to both of
you.

[andrew]

Hi there and welcome! Agree with DRZ and JeanMarie.

You may also find that his chemo meds may be exacerbating the after-effects of the infection too. Any illness when you're taking chemo meds is magnified and takes longer to get over. How long has he been on the Rituxan? That could be causing him to feel ratty as well.

If the infection is gone then that's a great thing. It reads like it was a reasonably severe infection too so his body will be taking time to recover from that as well as the constant barrage from the chemo. He'll probably feel like poo for some time after that.

The tightness in the chest is concerning for me though but if bloods and X-rays are clear then that's good. Would perhaps be good to take another trip to the doc of he's not on the improve in two or three days though. Also regularly check if he's running a fever. if he is then straight to the doc again particularly given the WG and the recent infection.

Hope that helps. Best to you and you hubby.

[annekat]

Welcome, Cher. I'm glad you found the forum. It has been a blessing for me since my diagnosis. I would say what everyone else has, that any infections take longer to clear up when we are on the immunosuppressant meds used to treat Wegs. I, too, would be concerned about the sudden gum and mouth issues, since those are a possible symptom of WG. But it sounds like things have turned out OK with the antibiotics and the good test results. You were right to worry about that. I'm sorry he still feels rotten and I guess the best you can do is take it one day at a time, be vigilant, and be prepared to get medical help if things take any turn for the worse. I'm lucky enough to have no kidney involvement so far, so don't know how it feels to be going through dialysis and all that. I only know that Wegs in any of its variations can really zap the energy out of us and make us feel sick at the drop of a hat. So I hope he is in a position to take it easy and get lots of rest, as well as doing whatever physical activity he is able to enjoy. He's lucky to have you looking after him. Keep us posted.