Any Advice Welcomed! Just Diagnosed!

[Sr.Roc]

i was 29 at diagnosis

[NicShaf]

Ok...questions my husband now has.
1- Is there a special diet he will have to follow.
2- After remission, do people have to take medicines for the rest of their lives
3- Has anyone suffered a stroke who is on this forum? (This has been said to be associated with it) and if so what causes that?
4- With insurance how much does the medication normally cost
5- Anyone who has ONLY had the sinus issues...What has it been like? How long before being diagnosed? Treatment? Remission? Anything?

1. There isn't a doctor recommended diet that I'm aware of, but I've adopted an "anti-inflammitory" diet, as I believe many on this site have as well. My Rheumy thinks it won't necessarily help, but it also can't hurt. It's mostly a "heart healthy" way of eating.
2. The goal is drug free remission. This is the question my Mom asks me all the time. Many people on this site have achieved remission, even for long periods of time...some 10-20 years. I am still in my initial treatment, but hope to be in that remission state soon
3. I don't know if anyone has suffered a stroke, but I assume it is a risk because the disease causes inflammation in your blood vessels.
4. I am on cyclophosphamide, prednisone and bactrim. I'd say, in the past 4 months, I've spent about $100 on my medications, and I have enough to get me through at least the end of May.
5. I have sinus and lung involvement, so I can't say how only sinus involvement feels.

Hope this helps.

[Sangye]

Ok...questions my husband now has.
1- Is there a special diet he will have to follow.
2- After remission, do people have to take medicines for the rest of their lives
3- Has anyone suffered a stroke who is on this forum? (This has been said to be associated with it) and if so what causes that?
4- With insurance how much does the medication normally cost
5- Anyone who has ONLY had the sinus issues...What has it been like? How long before being diagnosed? Treatment? Remission? Anything?

1-- Agree with Nicole that an anti-inflammatory diet is beneficial. Anti-inflammatory supplements that don't boost the immune system are also good (eg fish oil). If he has kidney involvement he may have to follow a certain diet but it's usually temporary.
2- Highly variable. Some go right into drug-free remission, some have to stay on drugs to maintain remission. Many people have flares. It's all over the map and there is no way to predict who will flare and how serious it will be. OR who will have decades of solid remission. There is hope.
3- No, but I did have "uncountable" numbers of leg and lung blood clots. Weggies are 23% more likely to get blood clots--not a well-known fact.
4- All over the map. Depends on your insurance, deductibles and which meds. Some meds are super cheap (eg prednisone) and others are $10,000 per dose. Everything in-between.

[gurinbasra]

I was 38 when diagnosed and I specifically had it in my cochlea - the ears - with very little sinus involvment but was labelled "limited" WG. I just want to point out that sometimes limited doesn't mean that it should be treated mildy. I was first put on Methotrexate for 3 months and obviously it did nothing because it changed nothing - I lost so much hearing and it progressed into my just my left sinus area. I had lost about 10lbs in two months prior to even knowing I was sick and my normal weight was usually around 138lbs - so I can tell you that I was very sick from it but with only limited WG. Then I was on cyclophosphamide for a year to which I still didn't respond and finally Rituxan seems to be the only drug I responded to! To date, dispite how sick I've been and the fact that I never came close to remission for almost two years, I never had it my lungs or kidneys. In fact, even through the Methotrexate (which I'm still on today as a maintenance drug) and the cyclo, I always had normal liver and kidney numbers which is true to date.

Hopefully your husband will get to see someone soon and take in your book worth of questions and keep a journal of how your husband's health changes with the meds he's on. Life will be different for all of you, but just think that you're all still together - I just know that having someone like you by his side will give him strength cos he's gonna need it! You will get through this.

Take care of yourself too!

[vdub]

the doctor left the results via voicemail

Fired! At least it wasn't on a Friday night after hours that he left the message.

58 for me. And, I'll echo what Jack said about it being sooooo different for each person.

One other thing.... I think if you were to ask about nose surgery, the advise you'd get on the forum would be no. However, before I found this site, I had already had 3 nose surgeries. The third one was to open the channels into my sinues to allow more air circulation. It turned out to be very beneficial for me.

Other than my upper sinuses, I can't give much advice as my WG is localized to my brain (major issues). I only have moderate damage to my sinuses and minor damage to my lungs. I'm not aware of any damage yet to my kidneys, but I'm not in remission yet either.

[malin]

I don't really have much advice, all I can tell you is a bit about my own experience!

I was diagnosed when just days after having turned 16 and I will be 23 in July. So far, I've only had major involvment in my ears and minor sinus involvment. My main problems with my sinuses are stuffed, blocked nose, dry nose and sinus headaches. I started off on meds like Pred, bactrim, stomach protectors and my main drug Methotrexate.

I have never been off the methotrexate but have stopped the bactrim and stomach protectors fully. I did go a few years without Pred but have since had flares and had to go back on it. I am now almost done with pred again, fingers crossed, after being on it for about a year and a half this time around.

For me, Pred is the worst med that I take, the methotrexate is horrible in the begining because it made me feel so nauses and tired, however that passed after about a year. Pred changes your body, mood, mind, everything. It can a true nightmare but with the right support from family n friends, it's easier to handle.

As for remission, I am happy as long as I don't flare. Being on drugs is not fun and it does get to you, mentally but for me, I am very happy to not have anything major going on atm. Drugfree remission is always a goal and there's always hope, but I don't really pin my hopes n dreams on it.

Feeling OK is the most important thing, wether you are on drugs or not.

[Psyborg]

Welcome to the forum. I think the best advice is to get a good specialist (chiming in with everyone else . I was 38 when I was diagnosed. I haven't been presented any sort of diet by the doctors, but folks on the forum seem to have decent results with the anti-inflamatory diet.

I think the shortest duration for medication would be around two years before a chance of being drug-free. I was told the "normal" treatment protocol is 2 years. As others have said the Prednisone is the worst of it, and while it initially makes you feel great it does wear you down over time.

[renidrag]

Hello Stephanie: I am one of the people who unlike a lot of others have actually realized drug free remission. My story is short with lung involvement only, however still blood and urine testing every two months. Diagnosed in 8/09 and drug free in 6/10. The same drug cocktail as most others I have seen here. Aggravating, but it beats the alternative. Now it is just blood thinner (I did have a clot and embolism) vitamins and just a touch of anti-anxiety. My best to you both. The only other advice I can give you is to find a WG specialist, because if you don't the people here will nag you until you do. As you have already read.
Dale

[Sangye]

The only other advice I can give you is to find a WG specialist, because if you don't the people here will nag you until you do. As you have already read.
Dale

ROTFL But true.

[Stephanie78]

I have teared up reading so many of your stories. I'm so sorry to each and everyone of you for having to deal with WEGS.
Today I am angry. No...I am pissed! My husband called the ENT yesterday for them to set up the appointment with the Lung Specialist. I called my husband a few minutes ago to see if he had heard back from the doctor and he said that he hadn't. I requested him to call them again. As of right now the CT is still scheduled for April 26th. I did call DUKE yesterday and they require a referral from the ENT that diagnosed him. I called Chapel Hill and they too require a referral from the diagnosing doctor. I have a call into Baltimore. My husband seems to think I am just making it a bigger issue then it needs to be by calling these places but after reading your stories on here I understand how important it is to get it treated NOW.
I'm going to play the selfish card for a second...We have two kids and I love my husband more then life itself. I don't want him to leave us. I don't want to do it alone. I need him here with me and the kids. He needs to see them grow up and have families and he needs to be here with me to comfort me when they leave home. I married him for the intentions of growing old TOGETHER so I am angry that this is happening.
I realize that I will need to deal with the anger and I will need to understand that I have to adjust to his sickness, but right now I don't want to.
He did read on this forum last night and he realizes that it is a serious disease.

One other question I do have is....People who have had the sinus issue...With treatment did it get better? Could you breathe again? Or will my husband possibly live the rest of his life miserable with his sinuses? My heart is broken...