New to WG

[loisann11]

Hello everyone, Lois from Minnesota here,
I was just formally diagnosed with WGA around Easter thisyear. I spent the winter in AZ and got sick around Thanksgiving. I hadbeen having sinus issues for a month or 2 but figured it was just the “allergies”I usually end up with in AZ. I had beendieting and exercising for about the last 2 years and dropped 50 lbs. My form of exercising had been walking atleast 10,000 steps a day or over 2 miles. In AZ I just got too tired to go very far so had to stop. Then at Thanksgiving I just went to bed... totired for much of anything and got very, very cold. Had to go to CA to visit daughter but stilljust not right. Went to clinic there andthey gave me z-pak because he said everyone had bronchitis there. I also had an ear infection I didn’t knowabout. By the time I got back to AZ Iwas having more trouble breathing and decided to go to ER. They told me I had pneumonia, kept meovernight and gave me antibiotics. 2days later I went back not coughing up blood. Now double pneumonia. Keep me for9 days. All this while running tests tosee why I got sick. They were prettysure it was Wegeners but needed biopsy to verify. Lungs were a mess so couldn’t do it. Put me on 40mg prednisone and I gotbetter. Oxygen for a month and I headedback to MN 1^st of March. I wasn’t feeling well again and had alittle trouble breathing so went to ER on Easter Sunday. I told them what I thought I had and theysent for my records. I was lucky to havea kidney specialist look in on me who knows what he is doing. He put methrough 5 rounds of plasma exchange and then 4 doses of Rituximab viaIV, 60 mg of prednisone, bactrim, pepcid, fosamax etc... Was really rough for awhile. I do admit that I have gotten almost all ofthe side effects from listed from the prednisone and that has been the worstpart for me. I decided to taper just alittle faster than the Doc wanted but I did keep him informed as I didit. I am now down to just 5mg and feeling much better. Nice to knowthat long term looks good. Still worry about every little issue and check themout as needed. I have a long way to goand need to learn so much more...

[Jayne 14]

Then this is the perfect place to learn more & meet friends
You got diagnosed really really quick : that is amazing
Welcome & the future cam look good
Xx


Sent from my iPad using Tapatalk

[Jayne 14]

Then this is the perfect place to learn more & meet friends
You got diagnosed really really quick : that is amazing
Welcome & the future cam look good
Xx


Sent from my iPad using Tapatalk

[annekat]

Welcome to the forum. Your experience sounds familiar, but each case is a little different. It is a very good thing you got diagnosed so early, to minimize any permanent damage to the affected areas. Also great that you are already down to 5mg. pred! Many of us were not diagnosed for years, have suffered permanent damage, most commonly to the sinus and nasal area, but other areas, too, and have had to take a lot more of the nasty meds for a longer time than you have. We don't know what may lie ahead, though, so I hope you will keep us posted, join in discussions, ask any questions, and learn from what the rest of us have been going through. Many of us are doing quite well, though we'll never be totally free of WG and the possibility of relapse. This is a great group, and you have come to the right place.

[loisann11]

Thank you, I have been looking for a place to chat and learn more. I do continue to have problems with my sinus and a cough. My chest still feels heavy but my oxygen level is good so not sure what that is. Doc. says I sound good and am doing great considering "how bad I was". I didn't feel that bad. I didn't notice any problems with my kidneys but he says I will have a little scarring. Since kidneys were involved this time I was lucky and did have a kidney biopsy to verify the WGA. In Phoenix they said I needed and open lung biopsy and my lungs were too messed up. I seem to go day to day wondering what each pain or issue is. Is it a symptom or just a side effect of the prednisone or Rituxin. When I went down to 30 I also ended up with problems with my eyes. They water and itch so much. My head felt like it had a rubber band around it and the top was going to burst. Ended up seeing eye Doc and getting different drops from different Docs but none have helped. Chocked it up to side effects. They have gotten better but not completely. Kidney guy is concerned that creatine level has gone up just slightly each 2 weeks when I do my labs. Thinks maybe the Rituxin wasn't strong enough. Wants to give me another round in Oct. Was going to do that anyway. Just trying to get stronger so I can go back to walking, need to lose the 25 lbs I gained while eating during the prednisone food frenzy. Hope you are all doing well.

[annekat]

Just a note about the cough.... for many of us, including me, it is the result of sinus drainage getting down into the bronchial tubes and collecting there, where it can cause coughing to try to get it out. That still happens to me after 3 years, even though the lung involvement that I had cleared up a long time ago.

[Dirty Don]

Loisann, well, you couldn't be in 2 better areas for treatment of WG: WI and AZ. I live in AZ, Banner Hosp. did my lung biopsy (a very good surgeon went into some very messed up lungs), and Mayo did my pathology. I now attend Mayo for treatment, and they have it right on track. I'm now off pred and they're talking about reducing/weaning me from mtx this fall...we'll see at appts. next week. Keep on track, you are doing well. Takes fortitude and patience to get thru this, and you will. Best to you.

[loisann11]

When in AZ and I had my pneumonia I went to Banner/ Boswell in Sun City. They are the ones that first said they thought I had WG. I was there 10 days and the whole staff was great. I used to live in Sun City before moving back to MN. For major drugs I only got the Rituxin and the prednisone so not sure what all the other drugs on here are. Will ask my doctor on next visit how many times he thinks I have to do the Rituxin, so far I know twice, but sounds like others have taken it longer.

[mrtmeo]

Hi Lois,
Please contact the Vasculitis Foundation for more info.
Vasculitis Foundation

It never ceases to amaze me how Dr's will always diagnose WG's and MPA with double pneumonia even when there is no sputum test or cough.
Even with a CT scan they can't always determine vasculitis, but WG's usually shows the granulomas.
It seems the specialists most familiar with vascuitis are the Nephrologists because renal failure usually follows and people could save their kidneys if drs would only check further before prescribing antibiotics.
The earlier u get treatment, the better the outcome for the kidneys.
Keeping kidney function checked regularly can save them too.

[loisann11]

I had 3 docs in AZ. Lung Doc took the lead. I was coughing up so much blood and he was testing for normal causes of pneumonia but couldn't find it. I did have a trace of blood in the urine I guess and he must have seem WGA before to think that was what I had. He just high does me with the prednisone, 40mg, not that high compared to others, and I followed up with him till I headed back to MN. Had cut back to 0 by time I came home 1st of March. But started feeling "odd" until I finally went to ER. They gave me antibiotics and sent me home to call a lung doc. They told me I couldn't get in for 3 months as new patient. Had to argue, they told me to go back to ER if I wanted to see one sooner. So I did. Lung guy there laughed at me for thinking I had WG and wondered why I thought that. Duh last doc said so.. Weird till he got the notes from AZ. I did NOT like him. What an attitude. But they called in kidney doc based on some labs and was good from there on. He really seems to know what he is doing.