Update on my husband

[Stephanie78]

So, it has been a VERY long two months. In an earlier post I put on here I explained that my husband had been diagnosed with WEGS by his ENT via voicemail at 5:05pm!
Since getting THAT diagnosis we have been educated quite a bit. For starters you CAN NOT be diagnosed with WEGS just by a blood test (which he was). After being sent to a Pulmonary Doctor we found that out. While sitting in his office, he looked at us and stated that he was unsure why we were there. He stated that Johns chest x-rays came back perfect. (Thank Goodness) He then said that Yes he could do a biopsy however that would consist of cutting my husband open in the hospital. He told us that the ENT could have done one on his sinuses (since that is where his issues is) in the office! Since there was nothing wrong with the lungs there was no need to be treated by the pulmonary Doctor HOWEVER he would help us anyway possible (Getting referrals etc) He also sent the charts back to the ENT informing him that it was very unprofessional of him to make a diagnosis purely off of "bloodwork". SO...The ENT called him the next day to set up a biopsy that afternoon. Unfortunatley the results were positive for WEGS. But hey, atleast now we have a SOLID diagnosis. However he would only keep putting him on Antibiotics NOTHING more. So....After being miserable and losing a total of 21lbs now (in 6 weeks) and not being able to breathe out of his nose, horrible night sweats, fevers and chills, a full body rash, headaches, and pure exhaustion he FINALLY saw a rheumotologist TODAY! He did a huge panel of bloodwork and an UA. He looked over all results (from prior test and biopsy) and stated that John had a very mild form or WEGS that is ONLY in his sinuses. He said he is lucky to have found it before it did more damage. He put him on Prednisone and will see him back in 3 weeks. I could complain more about the ENT (he is NOT the best) However I feel blessed that he knew about WEGS and knew to test him for it right away. The rash has been blamed on the antibiotics that the ENT had him on and the exhaustion has been blamed on the fact that he can't sleep at night.
We are hoping that the prednisone gives him some sort of relief. We want our full of energy husband/daddy back!

[delorisdoe]

hmmm...blood work, loosing 21 pounds, night sweats, fevers and chills, full body rash, headaches and pure exhaustion may have been enough though. oh, and wg in the sinuses does not mean mild wegners. at least you have a diagnosis but im not sure prednisone is all he needs.

[Jack]

I think you need to find a specialist as soon as possible!

Your husband is displaying all the signs of very active disease and how it can be described a mild I really don't know. I went from very similar symptoms to irreversible renal failure in the course of a couple of weeks. Very few Wegener's cases can be treated with steroids alone and I would need some convincing that your husband is one of these cases.

How much Pred is he taking? A follow up in 3 weeks after initial treatment is ridiculous!

[Sangye]

Stephanie, it's great to hear back from you. So, some of the info the docs have told you is correct and some needs to be mopped up. (Unfortunately non- Wegs specialists typically don't know enough about Wegs to diagnose or treat it properly.)

Wegs is diagnosed using blood work, signs/symptoms and a biopsy. However, many people have (-) blood work and (-) biopsies and can still be diagnosed based on signs/symptoms alone. I'm glad your husband's sinus biopsy was positive (biopsies in that area are famously inconclusive or false negative). That makes things much easier.

There is no such thing as a mild "form" of the disease. Wegs is Wegs. It differs only in which areas are affected, but there is nothing stopping it from affecting other areas at any time. Having said that, there is also no guarantee that it will become more systemic--that's good news.

As far as the severity of his disease at this time, I agree with Leigh and Jack. Those symptoms are not at all consistent with "mild" Wegs that might be managed only with pred. (One would have to have extremely mild disease activity in order to use only pred.) If he truly does not have other organ involvement at this time, I suspect it might be brewing. If so, pred is not likely to be sufficient treatment to get it under control and keep it there. Pred can take down the inflammation but without using an immunosuppressant it will come right back. He should not be kept on pred indefinitely--very damaging drug.

Only a Wegs specialist can give proper advice. I encourage your husband to see one as soon as possible.

[Chris G]

So glad you finally have a confirmed diagnosis, but I share Jack and Leigh's concerns. Pred alone is not a treatment for WG. It's more of a bandaid. You mentioned rashes, night sweats, headaches, fever, chills, fatigue - those are systemic symptoms of active systemic disease. I myself have what your doc might call "limited" wg, and it's never limited to just one site - those systemic symptoms are the proof. Even with my "limited" form of wg, I'm now stepping up to Ritxuan treatments this week, after 6 months of failed treatment on methotrexate. While pred will quickly make your husband feel better, it will not control the disease itself. Please consider a second opinion from a doc who's well versed in wg.

[drz]

i will echo what Jack and others have said. I had similar symtoms for many months but my ENT doctors and several others were unable to figure it out. Then the WEGS went on a rampage and within two weeks I was in ICU with an extremely severe case of WGS. There are no guarantees with WEGS so get some expert treatment before it breaks lose. Since you have a definite diagnosis it should be much easier now to get proper treatment. Good luck and welcome to the forum.

[vdub]

My doc at SLC said they are trying to abandon the word "limited" in lieu of "localized". The disease isn't limited.

My PCP dx'ed me based on the physical results from the mayo clinic and what he called clinical evidence. He was right on target. Nevertheless, I went to the specialists at SLC and had them do a confirmation. They really ran me through the grinder and confirmed GH due to WG and they doubled my mtx. Sure hoping I can get off the mtx in a few weeks....

Anyway, as anyone on this forum will tell you, "see one of the specialists". My original rheumy didn't do anything (as far as I know) to confirm my PCP's dx and the original rheumy seemed very unenthused to do anything short of putting me on a light dose of mtx and check my blood every 2 months. It was the people on this forum who pushed me in the right direction. I'm not sure where I would be now had I not gone to see a specialist.

[marta]

I also will chime in with the same song sung above... What your docs are telling your husband about his symptoms feels off to me. If you click on the link at the top of this page (in the yellow section) for the results of the survey, you will find what 316 Weggies have to say (that's a lot of WG patients - representing a population base of well over 9 Million people) and the most common symptom is fatigue with just over 70% of people experiencing it, 36% experienced weight loss, 44% night sweats, 67% sinus problems, 31% skin problems and 34% headaches. So I think the docs that are treating your husband might be looking at symptoms with their blinders on and forgetting to look at the overall picture.

I also had a rheumy (assigned to me at diagnosis) who seemed very apathetic about things and especially when I went downhill with a flare. I listened to people on this forum and searched out a new doctor and feel almost teary every time I think about it. My new doc is keen and super interested in this disease, she's a wonderful person, and treats me with respect and dignity and I trust her with my life. Had it not been for the people on here, I wouldn't have had the guts to go out and search for a new doctor. She has gone to bat for me to get me RTX and is part of a new Vasculitis group in Canada, so things are looking up for me. Also the fact that your husband has been kept on antibiotics alone all this time after diagnosis seems insane - it's not an infection. Also the new doc only putting him on pred and waiting for three weeks to see him sounds quite alarming too. Seek out a doctor. Once you get a good one - even if they're far away - you don't have to see them very often unless things go funky - your primary can consult with them and ensure you're getting what you need.

I hope that things start to look up for you and your family. The first little bit is crazy, freaky, fast paced, full of uncertainty, but it will mellow out, and you'll get to know the beast and how to deal with it. I'm just on year one, but the memories are as clear as if it were yesterday, but I'll tell you... today is a complete 180 from one year ago today. Stay strong, love each other and take it one step at a time. I've learned all about baby steps this last year.

[JanW]

Chiming in with the rest. My case of WG was initially so 'mild' that I wasn't even treated for it -- docs thought I had asthma. Fast forward five years and I had almost a complete closure of my windpipe as well as the bridge of my nose collapse due to lack of blood flow (tissue on my face became necrolic and just reabsorbed). I had a little of the night sweats and some (not nearly as much) of the unexplained weight loss that your husband experienced. I also ended up with osteo from being treated with pred for asthma (which I did not have). I cannot stress to you enough how dangerous a drug pred is, and how closely it needs to be monitored by people who really know what they are doing. I have never been on pred for this disease except for one time (to see if they needed to increase my main immunosuppressant). Please get an expert to consult on your husband's case -- I do not think it is mild, and it's highly unlikely to be controlled by pred alone, and he should not be on pred long term.

[maria garcia]

[QUOTE=Stephanie78;40108]So, it has been a VERY long two months. In an earlier post I put on here I explained that my husband had been diagnosed with WEGS by his ENT via voicemail at 5:05pm!
Since getting THAT diagnosis we have been educated quite a bit. For starters you CAN NOT be diagnosed with WEGS just by a blood test (which he was). After being sent to a Pulmonary Doctor we found that out. While sitting in his office, he looked at us and stated that he was unsure why we were there. He stated that Johns chest x-rays came back perfect. (Thank Goodness) He then said that Yes he could do a biopsy however that would consist of cutting my husband open in the hospital. He told us that the ENT could have done one on his sinuses (since that is where his issues is) in the office! Since there was nothing wrong with the lungs there was no need to be treated by the pulmonary Doctor HOWEVER he would help us anyway




possible (Getting referrals etc) He also sent the charts back to the ENT informing him that it was very unprofessional of him to make a diagnosis purely off of "bloodwork". SO...The ENT called him the next day to set up a biopsy that afternoon. Unfortunatley the results were positive for WEGS. But hey, atleast now we have a SOLID diagnosis. However he would only keep putting him on Antibiotics NOTHING more. So....After being miserable and losing a total of 21lbs now (in 6 weeks) and not being able to breathe out of his nose, horrible night sweats, fevers and chills, a full body rash, headaches, and pure exhaustion he FINALLY saw a rheumotologist TODAY! He did a huge panel of bloodwork and an UA. He looked over all results (from prior test and biopsy) and stated that John had a very mild form or WEGS that is ONLY in his sinuses. He said he is lucky to have found it before it did more damage. He put him on Prednisone and will see him back in 3 weeks. I could complain more about the ENT (he is NOT the best) However I feel blessed that he knew about WEGS and knew to test him for it right away. The rash has been blamed on the antibiotics that the ENT had him on and the exhaustion has been blamed on the fact that he can't sleep at night.
We are hoping that the prednisone gives him some sort of relief. We want our full of energy husband/daddy back![/QUOT

You are indeed lucky to have been able to find a diagnose. My daughter Rhema. keeps telling us there is no Diagnose yet only poistive p Anca And MPO. But my daughter has bad sinus lost weight, a bleeding nose red eyes/ Her sinus xray didn't show enough to confirm. So we need to wait three months per her rhema. while my daughter doesn't seem to get any better. Im taking her to an ENT. and Im hoping for a biopsy. I just have a bad feeling and I need to know. I have a lousy insurance, my daughter is in denial so she does not want to go to any doctors, hubby doesn't want to read about it and just listen to the Rheum. I feel exhausted just trying to get an appointment that my daughter can go to without her having something else to do. I don't want to scare her but she is 17 and making thing more difficult. My email is INZINES@aol. com Im new at this and scarred just like you!