Any Advice Welcomed! Just Diagnosed!

[Stephanie78]

My husband (35 years old) has just been diagnosed with WG. He is being sent to a Lung specialist and has a CT scheduled for the 26th. The doctor (ENT) did not offer much information on this disease other then to say it is an immune disease and that he would have to be under a Lung Specialists care.
Since the doctor left the results via voicemail at 5:05pm we knew NOTHING about WG. Against my good judgement I decided to "google" it and made the mistake of reading numerous websites. I didn't have the heart to tell my husband most of what I read.
My husbands ONLY symptom is that he has a stuffed up nose. We moved to NC from KS last October was a year ago. As we approached the Spring (Last Spring) he though he had allergies. He didn't see a doctor due to the fact that Allergies run in his family. Since it doesn't get too cold where we live it is not abnormal for some people to have allergies all year round. Over the past month or so it has become worse. He use to run however due to the severness of the stuffiness he couldn't run due to not being able to breathe. He finally went to an ENT thinking he had pollups (sp?) and he put him on an antibiotic as well as a nose spray for 5 days. He had his follow-up this past Monday and it was discovered that nothing had changed. He then sent him for bloodwork and scheduled a CT. Yesterday he received the results that it was WG. I have read a lot on line since getting the results and realize that most patients find out only after they have kidney/renal failure.
Any and all advice would be great concerning this. Please Educate us, not on what you have read but what you have experienced. We have two kids (14 and 7) and the NOT knowing is terrifying.
Thanks!
Stephanie

[drz]

My husband (35 years old) has just been diagnosed with WG. He is being sent to a Lung specialist and has a CT scheduled for the 26th. The doctor (ENT) did not offer much information on this disease other then to say it is an immune disease and that he would have to be under a Lung Specialists care.
Since the doctor left the results via voicemail at 5:05pm we knew NOTHING about WG. Against my good judgement I decided to "google" it and made the mistake of reading numerous websites. I didn't have the heart to tell my husband most of what I read.
My husbands ONLY symptom is that he has a stuffed up nose. We moved to NC from KS last October was a year ago. As we approached the Spring (Last Spring) he though he had allergies. He didn't see a doctor due to the fact that Allergies run in his family. Since it doesn't get too cold where we live it is not abnormal for some people to have allergies all year round. Over the past month or so it has become worse. He use to run however due to the severness of the stuffiness he couldn't run due to not being able to breathe. He finally went to an ENT thinking he had pollups (sp?) and he put him on an antibiotic as well as a nose spray for 5 days. He had his follow-up this past Monday and it was discovered that nothing had changed. He then sent him for bloodwork and scheduled a CT. Yesterday he received the results that it was WG. I have read a lot on line since getting the results and realize that most patients find out only after they have kidney/renal failure.
Any and all advice would be great concerning this. Please Educate us, not on what you have read but what you have experienced. We have two kids (14 and 7) and the NOT knowing is terrifying.
Thanks!
Stephanie
Welcome! Sorry you had to find us but this is best resource you will find on line. I was diagnosed a year ago and you are lucky to get treatment before it got to kidneys and lungs cause many of us weren't that fortunate. With good treatment the prognosis for improvement with an early diagnosis is very good. Check the Vasculitis foundation website for info on finding a good doctor in NC. There are some well respected experts in your area and it is important to have some one with good experience in treating Wegener's to get good results.

Read as much as you can here, search for info on topics of interest, and feel free to ask any specific questions you have.

[pberggren1]

The best advice I can give you is to see a Wegs Specialist directly or get your local doc to consult with one ASAP to confirm diagnosis.

You will have to follow blood work like: CRP, ESR, WCC, ANCA, Creatinine, etc.

Did they do a biopsy of his nose to get the diagnosis of Wegs? I just want to know how they decided it is Wegs. I do believe there is at least one Wegs specialist in Kansas City but am totally sure. I think Dr. Abdou is there but he is retiring I think. He is older and is one of the respected Wegs specialists. But I am sure you will find another one in KC that has worked or trained with Dr. Abdou. His number is: 816-531-0930.

I hope you get answers soon. Why so long to get a CT of chest? Have they done one in the recent past or an x-ray? Is he coughing up blood or mucus?

[Stephanie78]

Thanks for the advice.
The only symptom that he is having is not being able to breathe out of his nose. They have not tested his kidneys, however I have read that most people do not find out until they are in kidney/renal failure?
We are now in NC not in KS. We moved from KS to NC 18 months ago. I'm not sure the specialist they will be sending him to here. The doctor suggested that it COULD be an immune disease on Monday (This past Monday April 11th) when he had his follow-up. He then sent him straight to have bloodwork done. He set up the CT at that time as well (Not sure why he scheduled the CT at the time) They did 2 types of blood test. One was to check levels and the other was to see how the blood settled. They came back abnormal insinuating that he had WG (Again remember I am only going off of what the ENT has said) we just received this information last night. My husband has a call into the dr to get the appointment with the Lung Specialist who may OR may not make the CT a sooner date.
He is not coughing/wheezing or anything of that sort. The only problem he has had is with his sinuses. It began where he felt like his nose was stopped up. He figured that he was falling in his moms history of having pollups (She had to have sinus surgery). When he went to the ENT a couple of weeks ago he said that his nasal passage was completly swollen closed (Hence him not being able to breathe). He gave him a medicine and the only change was that he started having puss like mucus drain out of his nose. He has lost weight over the past few weeks but we are not sure we should associate that with whats going on.
We have no clue if is has become aggressive however I can say that the nose part is the only symptom he has had. Hopefully the specialist can enlight us more. Please advise me of anything he should ask when he goes to the appointment.
Thanks

[drz]

Just ask for some routine tests to make sure it is not active in lungs or kidneys since symptoms may not show up up till much damage is already done.

[pberggren1]

I would get a chest x-ray ASAP just to be safe. Weight loss is a sign of active Wegs.

Nancy Allen is listed with the Vasculitis Foundation as a Wegs Specialist. She is a Rheumatologist in Durham. Her number is: 919-684-2965.

I would get to see her or consult with her ASAP or another Wegs doc in the area. There are only a few Wegs docs around, mostly at Mayo, Cleveland, Boston, JHU.

[Jack]

Please Educate us, not on what you have read but what you have experienced.

A very good thing you will discover about this site is that almost every post is based on personal experience and you can believe it 100%. However, you have to know that the disease is very diverse and no two people are affected in the same way and neither do they react to medication in the same way. This is why it is so important to be treated by a doctor with a lot of experience in treating Wegener's. There is no standard case profile or treatment regimen!

You must get the tests made for kidney function! The initial tests are just very simple urine dip tests and there is no excuse for any doctor to not do them. Renal failure has few symptoms and can occur very quickly. Mine failed while I was being treated in hospital by the ENT department and was terminal before eventually being detected. I now have a renal transplant.

Sorry to sound a little alarmist, but quick treatment is vital to long term prospects.

[NicShaf]

Stephanie,
Welcome to the site, you will find great advice here.

I would suggest a chest x-ray at the very least if they can't get your husband in for a CT for a week or so. I had mostly sinus involvement in the beginning, and they saw my lung involvement on a chest x-ray when they thought I had pneumonia...really, it was Wegs. There were not really any signs of lung involvement, just felt like I had a cold.
And the tests for your husband’s kidneys are very important, like everyone said above. If they suspect Wegs, you should request that these be done ASAP. They were testing mine weekly until recently, now monthly. I was diagnosed in December, started treatment as of January 1st.

There are a lot of scary things on the internet, take what you read with a grain of salt. My husband and I made the same mistake when I was first diagnosed, we read some really scary stuff, and then after talking to my Rheumatologist...after a week of worrying...realized that it wasn't as bad as we thought. It is still a very serious disease, don't get me wrong, but it is treatable, and the earlier you catch it, the better. You will find more useful information here, in my opinion.

Best of Luck!

[Sangye]

Hi Stephanie, welcome to the group. Ditto to what the others have already said. I'm rather shocked that your husband's doctor would just leave a voicemail with such a diagnosis. He should have scheduled you for an immediate appt to discuss the disease and next steps.

Wegs can be a very bad disease and yes, people can lose their kidneys, lungs and even die. But not everyone has all those areas involved. Many people have only sinus involvement. If left untreated, it can progress into more systemic involvement, but you should not assume that he will necessarily have it worse than he does right now. Also, if his involvement is truly only sinus then he likely won't have to do the harshest drugs.

It is imperative to do as Jack and Phil said-- rule out lung and kidney involvement immediately. Neither is complicated and the blood work his ENT did most likely checked kidney function (it's routine blood work). Lung involvement can easily be ruled out with chest x-ray or CT. Even though he doesn't have lung symptoms, Wegs can do silent damage.

A rheumatologist is the doctor of choice to oversee his care, not a pulmonologist. Most important is to get in with a doctor as soon as possible.

Here is info that will help you:
http://www.wegeners-granulomatosis.com/forum/general-wg-chat/986-what-newly-diagnosed-need-know.html

[freakyschizogirl]

Hi Stephanie.
I am one of the ones Sangye mentioned who just has Sinus involvement. I didnt know til way after diagnosis that you could get "limited" Wegeners. I havent had any lung or kidney involvement so please dont worry too much about this until you know, but do make sure they test for it.

Welcome to the forum, the experts on here have given me such good advice which has oftened turned out to be invaluable.

Please keep us updated with your progress.

[Stephanie78]

I appreciate all you have said. I did read so much stuff on the internet. . The information I read scared the crap out of me. Everything was stating that if left untreated for the first year he had a 20% survival rate. No ones life is any more important then the next, but the thought of losing my husband is terrifying! As it has been stated this is VERY new to us. One question I have is.....Is a Lung Specialist suffecient? Or should we go ahead and look for a WEGS specialist? I know he needs to see the Lung Specialist and have the CT taken care of BUT should I research the closest WEG specialist and contact them on my own?

I'm not sure if they did an urinalys or not.

The weight loss has been about 7lbs in 3 weeks. . He is a pretty healthy person (Weight wise)

I can honestly say that reading the post and threads on here have made me feel more at ease with a lot of things. I totally understand that it is a life threatening disease, but I have read some incredible recovery stories as well.

[Stephanie78]

One more question...survey I guess you can say. All of the post online I have read (Not on this site) has insinuated that it normally happens in people between the ages of 40-70. How many fall below that age range? Just wondering if it is as rare and some sites make it sound.

[ArlaMo]

I would definitely get in touch with a Wegs specialist - they told me over and over here to do so and I waited - I wish I had done it earlier! I had mainly sinus involvement in the beginning but by the time I was diagnosed, I also had kidney and limited lung involvement. I now have my Wegs specialist (Dr. Langford at the Cleveland Clinic), my internist, an ENT, a pulmonologist and a nephrologist on my "team."

I'm 41, 40 when all this started, so right within the age range.

[delorisdoe]

One more question...survey I guess you can say. All of the post online I have read (Not on this site) has insinuated that it normally happens in people between the ages of 40-70. How many fall below that age range? Just wondering if it is as rare and some sites make it sound.

I was 28...

[LilyPony]

When I was diagnosed I was NOT to search info out because it didn't apply to me. I supposed it was true to some extend because I maintained for many years on just antibiotics. I do wish I'd educated myself properly in the beginning more to monitored by experts rather than trying to play catch up when it's gotten worse from years improper treatment.

I am also in NC, in the Raleigh area. I have had horrible experiences with the vasculitis people at UNC and the Duke rheumatology clinic. Dr Nancy Allen (Duke) was recommended by the vasculitis foundation, as well as MaryAnn Dooley (UNC). Neither appear to be accepting patients. He will likely be sent to a colleague, who will supposedly consult with one of them constantly, but in my experience they won't. It took 8 months for my initial appointment, then it took 4-6 months for my 30-day follow up at which point I was given prednisone and told to make an appointment in 2 weeks. No appointments available and they will call me when an appointment opens up. I never told them I've been seen elsewhere because I'm just curious to see how long it takes for my two week period to pass. I think it's been about 2 1/2 months so far. I called at one point with complaints of a severe/sudden worsening of symptoms and was told to find an ENT to help me. They also told me they were seeking an appointment at JHU for me, but turned out Duke never contacted JHU at all.

I started off at UNC with similar waits for appointments. I got my 30-day follow up in the correct amount of time, but then the next appointment 6 months later I was rescheduled repeatedly before finally being told that the dr had retired - though he still appears on their website (Dr. Berger) - and that was in the early 2000's.

I just feel like both hospitals have very bad patient relations in terms of customer service, and are so severely overwhelmed by the number of patients and lack of appointments that they're incapable of providing quality care.

I am trying to get in with the vascultiis clinic at JHU in MD. I am hoping they accept me. They've had my records for a few weeks so hope to hear back soon.

Welcome to the group - they're full of great advice.

I was also told I'm too young to have this. I was mid-20's at diagnosis and didn't start really having new issues until the last few years. I'm 36.

[Sangye]

One question I have is.....Is a Lung Specialist suffecient? Or should we go ahead and look for a WEGS specialist? I know he needs to see the Lung Specialist and have the CT taken care of BUT should I research the closest WEG specialist and contact them on my own?
Yes, I recommend traveling to Johns Hopkins in Baltimore. He won't have to go often and can have them oversee his care while he is seen by local docs. It's important to get the very best care right from the start-- you won't regret it. Also, it's best that he gets set up with them now while he's in good enough shape to travel, etc... With Wegs you never know what can happen.

Any doctor--even a PCP-- can order a chest x-ray or CT. He doesn't need to wait for a pulmonologist to do that.




I'm not sure if they did an urinalys or not.
A urinalysis will only screen for kidney problems. Basic blood work will identify kidney function irregularities.


The weight loss has been about 7lbs in 3 weeks. Unintentional of course. He is a pretty healthy person (Weight wise)
That is concerning and makes me wonder if he has more systemic involvement.

Here is the info for JHU:
http://www.hopkinsvasculitis.org/about/appointments/
It can take several weeks to get an appt so it's best to start today.

[JanW]

Hello, and welcome to our site.

I agree with Sangye that the weight loss is concerning...I lost 10 lbs (off 140 lbs total still eating just as much) before I was diagnosed. However, I was diagnosed years (probably 5) after I had my first symptoms (which weren't severe and still aren't) so it is definitely not true that the majority of people die within the first year if untreated. However, if left untreated, the WG will eventually get you. My doc treats a woman with sinus involvement only, who has never been treated, only monitored frequently (her own symptom is occasional nosebleeds -- docs happened to do a sinus biopsy and that's how it was caught).

I'm wondering what showed in your husband's blood work that has them diagnosing WG as well. Obviously, I agree with the others, that he should see a specialist, and that specialist who is a rheumy who treats vasculitis. The problem (as I see it) with being under the care of a pulmy is that they don't treat the whole patient. The rheumy is more like a gp for patients with autoimmune diseases, and they can refer you out to specialists as needed.

[Stephanie78]

That really concerns me. I did call Nancy Allens office today and they informed me that my husband can get an appointment with her, however his ENT had to refer him. They could have meant one of the other drs in her office...

[Stephanie78]

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?

[NicShaf]

One more question...survey I guess you can say. All of the post online I have read (Not on this site) has insinuated that it normally happens in people between the ages of 40-70. How many fall below that age range? Just wondering if it is as rare and some sites make it sound.

I was 26 at diagnosis.

[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. :laugh::blink:

[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...

[Stephanie78]

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

If it weren't for the fact that this was the FIRST doctor who did testing for WEGS and actually knew to test for it and could possibly be our only chance of referral to the specialist he would be FIRED. However until we can get what we need out of him.....
And yes, it could have been worse. It could have been on a Friday and we could have gone all weekend. But as it is, it has been 2 days with NOTHING anyway...Dissapointed to say the least.

[Daggar]

Hello Stephanie, sorry to hear about your husband! It is very scary at the start but with time and knowledge it gets easier.

Our daughter Holly was diagnosed in Nov 2010 at the age of 14. She does have kidney involvement but as Jack has said... the disease and its progress (not to mention the meds) effects everyone differently. The blood/urine tests your husband had should indicate if the kidneys are involved -- it doesn't sound like it. Even then, some folks with kidney involvement have "accute" damage that responds very well if treatment is prompt. A low-sodium diet has helped Holly a lot.

A piece of advice for what it's worth from a parent that lost a little hair, a little sanity and a lot of sleep -- try not to look too far ahead and deal with the current symptoms/treatments as they come. The possibility that he has a "limited form" of WG is still on the table and he may be one of the lucky ones who deals with it very well.

[Hammy8241]

I think we all panicked a bit when we were diagnosed and found out the potential seriousness of the disease. But in all reality the vast majority of us will live to see a ripe old age, properly a lot longer than the individual would like!! Current medications give sufferer's an excellent chance of a good if not near normal life style after a year or two of treatment. Diagnosis is being made earlier in many cases(but not all) and whilst it can be fatal, it should not be though to be the death sentence it once was. Treat it with respect but no need to be scared of it.

I found that within weeks of commencing my meds, life was alot better and slowly my sinuses, hearing, etc are fairly normal. Your husband with the right treatment should see fairly quick initial improvements BUT WG is long term and getting into remission is bitch but it can be done....so I'm told! Getting the right treatment quickly is the key.

No special diets required but there will be serious weight gain depending of the dose of the steroid when prescribed along with mood swing to match the best wom.......Oh I'm not allowed to say that!! So watching what you eat is sensible. I have a snickers bar ( other brands are available!) locked in a 'IN CASE OF FIRE BREAK HERE' just in case though.

If his sinuses are really bad it may be worth looking at the Nelimed Sinus Rinse system to irrigate his nose. It really work great and is painless, just a bit gross to though! (Bet the kids would love watch!)
It clears and allows some relief can be done as often as needed. There are threads on here about it.

Good luck

[Stephanie78]

I
If his sinuses are really bad it may be worth looking at the Nelimed Sinus Rinse system to irrigate his nose. It really work great and is painless, just a bit gross to though! (Bet the kids would love watch!)
It clears and allows some relief can be done as often as needed. There are threads on here about it.

Good luck

What is that? Is it something you can get in stores? My husband has tried the half peroxide/water in the netti pot method. Didn't work...So he tried full strength peroxide...Only made it burn and tears well up in his eyes.
He read online to try seasalt and water?

[Hammy8241]

What is that? Is it something you can get in stores? My husband has tried the half peroxide/water in the netti pot method. Didn't work...So he tried full strength peroxide...Only made it burn and tears well up in his eyes.
He read online to try seasalt and water?

NeilMed Pharmaceuticals, Makers of Sinus Rinse, NasaFlo Netipot, Nasal Irrigation (http://www.neilmed.com/usa/sinusrinse.php)

Quick reply, Wife home and am cooking Tea... I'm a good boy!!

[Cindy]

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...

Hi Stephanie,

After I had sinus surgery, my sinuses have been great!

I can't believe your husband's doctor left a voice message :mad: I'm with vdub - fired!

It's normal to feel mad, but also be glad that he was diagnosed - really: knowledge is power.

[Brooke]

Welcome to the group, I have sinus involvement and I also use the neilmed sinus rinses everyday, and you can get them over the counter. I had sinus surgery before I was diagnosed, I believe it has helped me breathe better. I developed saddle nose deformity right after surgery, I had that repaired though.

[Daggar]

Excuse the lousy scan quality ... boxes don't work so well... (click on it for larger view).
925

[Cindy]

Daggar - I can't see it.

[Sangye]

Stephanie, you can get a Neil Med sinus rinse kit at any drugstore-- it's very famous. Pretty sure Walmart and Target carry them too. It doesn't have to be that brand-- anything along those lines. He can use it as often as he wants-- it's just saline, which is normal body fluid.

JHU also requires a doctor referral. As far as I know, all the major centers do. Everything you need is listed on the JHU link I posted for you. Even a PCP can make the referral.

Here's what I suggest you do:
1) Get in to his PCP early next week. Ask him/her for a referral letter to JHU, and ask that it be expedited (as in 24 hrs). Ask the PCP to order blood work to check his kidney function (they know what to order) and ask for a same-day chest-xray. Blood work will come back in 24 hrs--faster if they order it "Stat."
2) If the chest x-ray has anything that looks suspicious, ask for a CT to be done the same day. The doc can write the order "Stat."
3) While you're waiting for appts and results, start gathering his records to be sent to JHU. When the x-ray and/or CT are done, you'll need to return to the facility to get a CD with the images as well as the radiology report.

Make sure you follow through on each step. Doctor's offices may not stay on top of it if you don't check.

[NicShaf]

Stephanie,
We totally understand your anger, we've all been there, feel free to vent anytime. It is tough in the beginning. You and your husband will have to make some difficult decisions regarding his treatment and doctors, but it gets better from there.
When I was first diagnosed, I was really angry too. And after reading all the scary things on the internet, I thought I was going to die before my time. But talking to everyone on this site and reading their experiences helped me realize that with the proper treatment, I could be myself again, and everything would go back to normal...or pretty darn close to normal:)
I had pretty bad sinus involvement before and when I was diagnosed. Within a couple weeks of treatment, the inflammation in my nose went away and I've been able to breathe through my nose ever since.
Keep doing what you're doing, your husband is lucky to have an advocate like you on his side. My husband was very involved in getting me the proper care I needed after diagnosis, like you are doing, and I couldn't have done it without him. I wanted to curl up into a ball and cry when I got the news, but he made me be strong and deal with everything...it helped tremendously.
Best of luck.

[Sangye]

Excuse the lousy scan quality ... boxes don't work so well... (click on it for larger view).
925
It was very clear!

I had to laugh at the places where it's sold. I don't think a store named Pharmaprix would stay in business in the US. ROTFL :lol:

[Stephanie78]

How long did it take to get in with a specialist? I have called Duke and Chapel Hill (the ENT said they would do the referral) And the earliest he can get in is September?!?

[Sangye]

Once they review your husband's records at JHU they will set up the first appt. You may have to wait about 6 weeks for it. However, since he is not getting any treatment they may expedite it.

[Daggar]

........I had to laugh at the places where it's sold. I don't think a store named Pharmaprix would stay in business in the US. ROTFL :lol:

Come on Sangaye.... don't get me started!! I've got to keep it on topic....:wink1:

[Sangye]

I can just imagine holistic doctors and practitioners across the US bursting into laughter upon hearing the name of that chain. It's what they're all thinking! Oh man, I can't stop laughing. http://www.smileyhut.com/laughing/rofl.gif (http://www.smileyhut.com)

[Daggar]

Well let's be thankful that they don't have to wear an accompanying "uniform"!!:flapper:

[Sangye]

ROTFL!!

Alright, before someone else comes around and throws down a Putin on us, I'll self-monitor.
:back on topic:

[Daggar]

:blushing:

[Sangye]

No need for you to blush, Daggar! I was the one who brought it up and it's good to have some laughs. I just didn't want to keep going because Stephanie needs our help. It was fun giggling with you! :biggrin1:

[drz]

Daggar - I can't see it.

I can. Its small but you can make out what it is.

[Sangye]

Did you click on it? Big. :biggrin1:

[Stephanie78]

Just an update...
I spoke with Johns ENT yesterday. They said that the CT is of the sinuses that is scheduled on the 26th. I asked about test of the kidneys and lungs, they said things will happen in due time. I then asked why a lung specialist. They said that, that was the closet specialist who could deal with WEGS in the Wilmington area. SOOOO I suggested that they do the referral! They told me that they would be more then happy to do the referral HOWEVER I had to find the specialist, get any information of what they need and phone numbers. Then I could call them back and they would fax paperwork to them. Maybe I'm an idiot here, but I kinda figured that it was the Drs. responsibilty to find you a doctor if they could not help you with your issues. We have never had this issues with anything before.
SOOO...I found another post on here with someone referring a specialist in Chapel Hill. I called them, informed them of what the ENT told me (They were shocked that I was having to call) They gave me the phone/fax numbers and stated that all they need is a diagnosis from the ENT and then to call them on Monday to set up an appointment (Late May or Early June). They suggested John keep the CT of the sinuses on the 26th and IF the ENT ever gets him in with the Lung Specialist for him to see him (If it's before his Chapel Hill Appt).
I asked the ENT if they had an appointment set up with the Lung Dr yet and they said that all they have done is faxed paperwork. I asked them what they said when they called them and I was informed that they hadn't called them all they have done is faxed the paperwork with diagnosis. THIS ENT is SO FIRED as soon as we get in with Chapel Hill! (Remember, he left the WEGS diagnosis on my husbands Voicemail at 5:05pm!) Which I have discoverd is against HIPPA regulations.
We did pick up the Sinus Rinse today for him to try. He spent most of the morning with a throbbing frontal headache. (He woke up with it). And he is starting to have bloody mucus from his nose (Not a major amount, but it is a change)

[vdub]

Excellent! You might have to get the referral for insurance purposes, so ask that question when making the appt.

As Sangye said.... "you have to be your own best advocate". Learn as much as you can. Also, be concerned, but don't worry..... WG can not be cured, but it is treatable and can be contained.

[Sangye]

Stephanie, hang in there. You will have to become quite good at dealing with doctors' offices. The ENT's comment that things will happen "in due time" is ridiculous.

[marta]

Hi Stephanie,

Welcome to the group. It has saved my sanity and my life on a few occasions. I can so totally relate to your frustrations with the runaround you're getting. I experienced a similar feeling of being a ping pong ball in some twisted doctor game at the start. The last month before diagnosis is when things really started to go downhill with the crazy headaches - which landed me in Emerg a total of three times (the third time is when I got my diagnosis and immediate treatment - so there's some food for thought).

I take my hat off to you and all of the other caregivers including my wonderful husband. I stick to my observation that this disease is harder for you/them as you are sitting on the side trying to figure out what to do help... we just have to deal with what's going on at the time inside our bodies... I think we have the easier job.

Also as to your earlier question about age - the link above to the survey I made up while I was at the hospital with my last flare (which I didn't think I'd get more than a dozen responces) now has 290 Wegies' answers (that represents a population of 8.7 million people if you consider that WG hits one in 30,000). You can see quite a range in ages in there as well as symptoms before diagnosis. By the way, thanks everyone for filling that in. My doctor is going to a Vasculitis conference in Toronto in a few months and is bringing the results to show them. Cool, hey?

Stephanie take care of yourself and your hubby and kids. We also have a four year old and I wasn't going to let this disease rob her of her mommy. Stay strong and keep pushing the medical system. That's one thing I learned from here and after some perserverence I now have a great rheumatologist and a great GP - it took some time and some growing pains and at least one "you're fired".

[Rose Cozzette]

My husband (35 years old) has just been diagnosed with WG. He is being sent to a Lung specialist and has a CT scheduled for the 26th. The doctor (ENT) did not offer much information on this disease other then to say it is an immune disease and that he would have to be under a Lung Specialists care.
Since the doctor left the results via voicemail at 5:05pm we knew NOTHING about WG. Against my good judgement I decided to "google" it and made the mistake of reading numerous websites. I didn't have the heart to tell my husband most of what I read.
My husbands ONLY symptom is that he has a stuffed up nose. We moved to NC from KS last October was a year ago. As we approached the Spring (Last Spring) he though he had allergies. He didn't see a doctor due to the fact that Allergies run in his family. Since it doesn't get too cold where we live it is not abnormal for some people to have allergies all year round. Over the past month or so it has become worse. He use to run however due to the severness of the stuffiness he couldn't run due to not being able to breathe. He finally went to an ENT thinking he had pollups (sp?) and he put him on an antibiotic as well as a nose spray for 5 days. He had his follow-up this past Monday and it was discovered that nothing had changed. He then sent him for bloodwork and scheduled a CT. Yesterday he received the results that it was WG. I have read a lot on line since getting the results and realize that most patients find out only after they have kidney/renal failure.
Any and all advice would be great concerning this. Please Educate us, not on what you have read but what you have experienced. We have two kids (14 and 7) and the NOT knowing is terrifying.
Thanks!
Stephaniesorry you are going thru this. It is scary, at first I was just bewildered and then when diagnosed was scared. I feel it is best to be as educated as you can in WG as the patient is the best one to push the docs to be thorough. and the family support is essential, couldn't have done it without my daughter and hubby to push for all the follow-up needed. after 2 yrs I am in remission, it took a lot of tenacity and educating myself on this disease. try and focus on the process of improving and not what the WG is. I decided I was NOT wegeners, it may have come into my life but I would not be ruled by it. always moving forward into recovery. hope this helps. :hug2:

[maria garcia]

My husband (35 years old) has just been diagnosed with WG. He is being sent to a Lung specialist and has a CT scheduled for the 26th. The doctor (ENT) did not offer much information on this disease other then to say it is an immune disease and that he would have to be under a Lung Specialists care.
Since the doctor left the results via voicemail at 5:05pm we knew NOTHING about WG. Against my good judgement I decided to "google" it and made the mistake of reading numerous websites. I didn't have the heart to tell my husband most of what I read.
My husbands ONLY symptom is that he has a stuffed up nose. We moved to NC from KS last October was a year ago. As we approached the



































Spring (Last Spring) he though he had allergies. He didn't see a doctor due to the fact that Allergies run in his family. Since it doesn't get too cold where we live it is not abnormal for some people to have allergies all year round. Over the past month or so it has become worse. He use to run however due to the severness of the stuffiness he couldn't run due to not being able to breathe. He finally went to an ENT thinking he had pollups (sp?) and he put him on an antibiotic as well as a nose spray for 5 days. He had his follow-up this past Monday and it was discovered that nothing had changed. He then sent him for bloodwork and scheduled a CT. Yesterday he received the results that it was WG. I have read a lot on line since getting the results and realize that most patients find out only after they have kidney/renal failure.
Any and all advice would be great concerning this. Please Educate us, not on what you have read but what you have experienced. We have two kids (14 and 7) and the NOT knowing is terrifying.
Thanks!
Stephanie
Stephanie im new here and your story makes me sad bcse my daughter 17 has had an eye that has been a bit red and sinus problems an lots of colds thats all ! She has not been diagnosed with Wegners but yes with P ANCA and MPO POSITIVE there is a 20 % wegners with P anca usually is the C Anca poitivesthat have Wegners. I was very lost I had never heard of the word ANCA. They did chest xray and sinus xrays and everything looked fine including all the other blood work checking for organ involvment. So far no Diagnosis just positive Autoimmune. But she is still having sinuses and colds. Im so afraid that is Wegeners. Im thinking of taking her to a Nose doctor(forgot name). Im so frustrated with this diagnosis just like you and confused. (I also have a Dr. who doesn't explain much so I went and read in the internet and had a breakdown!

[elephant]

That is what happen in the very beginning of my WG flare, ( eyes, ears, stuffy nose, cold like symptoms). It is very hard for any doctor to diagnosis this unless you have more symptoms like joint pain, fevers, nose bleeds, shortness of breath. But eventually I start to have joint pain along with the sinus stuff and it took one doc to say, "Hey I think you have WG."

[Deanne Hull]

Hi Stephanie, welcome to our group, you will get some wonderful advice and support. I was diagnosed with sinus involvment and sore jaw and hearing loss. All of that has improved with the medication. I was very lucky to get diagnosed very fast. Do not muck around with this disease. Keep informed, knowledge is power. Best Wishes Deanne

[sue7211]

Hi Stephanie,

I don't know if you're found the Vasculitis Foundation website yet. They are having a 1-day conference for WG patients and family in Chapel Hill on May 14. When my son was newly diagnosed last year we went to their conference and it was the best thing we ever did. We met other people with WG. We heard the experts talk and we heard the newest and best medical information for people with WG. It was a bit scary wondering what others would look like but the support provided by the staff and other patients got us over our fears very quickly. Take care, Sue

[maria garcia]

That is what happen in the very beginning of my WG flare, ( eyes, ears, stuffy nose, cold like symptoms). It is very hard for any doctor to diagnosis this unless you have more symptoms like joint pain, fevers, nose bleeds, shortness of breath. But eventually I start to have joint pain along with the sinus stuff and it took one doc to say, "Hey I think you have WG."

Are you positive C ANCA or P ANCA?

[elephant]

I did have a positive ANCA, I think both but not sure. Can't remember. It was over 100 and it is down to 34.

[Rose Cozzette]

Just an update...
I spoke with Johns ENT yesterday. They said that the CT is of the sinuses that is scheduled on the 26th. I asked about test of the kidneys and lungs, they said things will happen in due time. I then asked why a lung specialist. They said that, that was the closet specialist who could deal with WEGS in the Wilmington area. SOOOO I suggested that they do the referral! They told me that they would be more then happy to do the referral HOWEVER I had to find the specialist, get any information of what they need and phone numbers. Then I could call them back and they would fax paperwork to them. Maybe I'm an idiot here, but I kinda figured that it was the Drs. responsibilty to find you a doctor if they could not help you with your issues. We have never had this issues with anything before.
SOOO...I found another post on here with someone referring a specialist in Chapel Hill. I called them, informed them of what the ENT told me (They were shocked that I was having to call) They gave me the phone/fax numbers and stated that all they need is a diagnosis from the ENT and then to call them on Monday to set up an appointment (Late May or Early June). They suggested John keep the CT of the sinuses on the 26th and IF the ENT ever gets him in with the Lung Specialist for him to see him (If it's before his Chapel Hill Appt).
I asked the ENT if they had an appointment set up with the Lung Dr yet and they said that all they have done is faxed paperwork. I asked them what they said when they called them and I was informed that they hadn't called them all they have done is faxed the paperwork with diagnosis. THIS ENT is SO FIRED as soon as we get in with Chapel Hill! (Remember, he left the WEGS diagnosis on my husbands Voicemail at 5:05pm!) Which I have discoverd is against HIPPA regulations.
We did pick up the Sinus Rinse today for him to try. He spent most of the morning with a throbbing frontal headache. (He woke up with it). And he is starting to have bloody mucus from his nose (Not a major amount, but it is a change)Hi, Stephanie, how are things going? I was out of town for a few days so am catching up on the weggie news. be tenacious and in the docs faces, or have someone help you with this as it is the only way to keep things moving. I know it should'nt be this way but it is so we deal with it. if you and others can advocate for your hubby then he can focus on healing. now I can deal with more but I still need help at times and I am not afraid to ask for it. you are not alone in this and that is the beauty of this blog, it is major support and keeps us going. hugs.... Rose

[Stephanie78]

I actually did a post on the update but I'm not sure where it went... So here is the update on John.

It has been a very rocky 6 or so weeks. His symptoms have stayed the same. We went to an ENT, and although we did not like his way of practicing (calling and leaving his results on VM and calling at 5:05pm). However we decided to keep with him (He did afterall know enough to consider WEGS). He kept putting John on antibiotics and set him up with a Pulmonary Doctor, Kidney Doctor and Rheumotologist. John had several appts with the ENT between other visits.
He went to the Lung Specialist (Pulmonary) where they did Chest X-Ray and breathing test and they stated everything was normal in that area. The Specialist was kinda confused at why we were there. Although he is very familar with WEGS he was floored at the fact that John had been diagnosed with WEGS without a biopsy! The ENT actually noted on the charts for the Lung Specialist to do a biopsy. The Lung Dr said that for him to do a biopsy he would have to cut John open in the hospital however the ENT could have done a biopsy on the sinuses (Since that is where he is having issues) in his office! SO, the Lung specialist sent the chart back to the ENT stating what he found and how he felt. He was GREAT offering any referrals we needed or wanted.
He was called the next day by the ENT to come in and have the biopsy. We then had to call back a week later to see if they had the results. The nurse stated that he had received it 2 days earlier but had not had the time to review it! SO John said he wanted a call back within the day. The ENT called him back and stated that the biopsy was positive. John knew he had an appointment with the rheumotologist the next day (This past Wednesday). The ENT started to set up another appointment and John told him to just forward the info to the rheumy and thanked him for being aware of WEGS and testing him, but that he would be seeking another ENT for any future services. (He had 4 appts and paid $65 each time to only be given a prescription by his nurse and NOT see the ENT).
He went to the Rheumotologist on Wednesday and after running a larger panel of bloodwork and looking over his past bloodwork/biopsy and taking his symptoms into consideration he said that his case is mild and that we found it in the "beginning" stages (So we are thankful that the ENT knew to test for it).
Johns major symptoms were

1- Stuffed up nose (Severly)
2- Weight Loss (22lbs to date)
3- Night Sweats
4- Rash
5- Exhaustion

They said that stuffed up sinuses were due to the WEGS. John informed the Doctor that due to not being able to taste/smell/breathe that he had no desire to really eat. He said that he would eat when his stomache growled however eatting was not something he did for enjoyment (which can explain the weight loss). Night sweats were said to be a symptom of WEGS. The rash was said to be a side effect of the meds that the ENT had him on and teh exhaustion was said to be a mixture of the WEGS and just not being able to sleep at night due to not being able to breathe.

The rheumotologist that we are using specializes in WEGS. He has worked at Chapel Hill as well as John Hopkins and started his own practice here after making the decision to move to the ocean and after his wife took a position at the hosptial here.
He started John on Prednisone Therapy?? Day 1-5 he takes 2 in AM 2 in PM. Day 6-10 he takes 2 in AM 1 in PM. Day 11-15 he takes 1 in AM 1 in Pm. day 16-20 1 a day. He goes back to the Rheumy on June 1st where he will be given another prescription and will do the Prednisone Threapy all over again. (Is this the way all of you did it?)
His results are not in with the Kidney Doc yet (He also saw them on Wed) We are waiting back on those results.

Thanks!

[delorisdoe]

That is not how prednisone is prescribed. I think the only problem would be a lack of sleep due to the pm prednisone. Most often it is taken only in the morning. The last time I was on prednisone the pharmasist told me to take it with my biggest meal dinner. I thought that was strange but I did it to see how it would go. I have as a result seen alot of late night reruns of two and a half men.

I am pretty sure people will tell you that your husband should also be on a harder hitting drug as well. They are probably right. Having said that, over the last 8 years I have been in a chemical free remission. aprox once every 1-2 years I suffer what seems to be a very slow or mild relapse and I am only treated with prednisone. It has always worked for me. Until now. this last bout of prednisone only subsided some of the symptoms while I was on my highest dose. Once the taper started the symptoms seemed worse than before. I would think that if your doctor really is a wegs expert and truly does know what he is doing then maybe prednisone is enough. the biggest difference I see though is that I have been through all of this and I know my body and I know when I am flaring and also how severe the flare seems to be. Despite this, I still get confused and have a hard time figuring out if have alergies, asthma, pneumonia, etc or if it is wegs. Your husband would in my opinion-and trust me my opinion is not to be trusted too much-he would really have no way of knowing if he is getting very ill from wegs or if he is suffering due to a pred taper. I really do hope that the doctor deos know his stuff .

[renidrag]

I think most people here will tell you that the word mild and Wegener's don't really belong in the same sentence. Have been on here and reading posts for ove a year, the standard seems to be to hit as hard as you can. The recipe is not easy, prednisone, cytoxin and Bactrim and, and, and,
but the results are good. How many mgs of pred is he on? Is he taking anything else?
Dale

[Stephanie78]

Actually (due to research and due to what the doctor explained) Due to the high dosage that he put my husband on they do split it up between Morning and Evening meals. I don't know the dosage amount off hand (I'm at work) But he said that having a high dosage, that they seperate it with meals (1 with breakfast and 1 with dinner). He said with the prednisone therapy you do the fullest dose at first and lower ever 5 days. That is what I didn't understand.
I have a cousin who is on Prednisone for different reasons and she too does the split dosages (AM and PM). He was extremly helpful. Since (according to previous UA) there is no sign of Kidney damage and there is no sign of Liver damage (Normally the extreme cases are where those two organs are affected) and since his symptoms are few and minor and from the biopsy, that is why he classified it as a mild case. He just started the prednisone on Wednesday so the prednisone has in no way been a reason for his lack of sleep. He has had it for about 6 months and according to my husband it is because he wakes up with a dry mouth from not being able to breathe, so saying the exhaustion came strictly from the WEGS can't be said. I mean his sinus issue is from the WEGS however lack of sleep is surely one cause of exhaustion.
I appreaciate the response, And I hope you start to feel better!

[Stephanie78]

As of right now the only thing he is on is Prednisone. I'm not sure about the dosage amount (MG etc) I just know that he was given a high enough amount where the doctor wanted to split the dosages between Breakfast and Dinner. I have read other posts on here, and I can say that it seems that he has a mild case to us (no dissrespect or anything, just that others on here seem to be in a more uncomfortable state then he is) His is just said to be described as a sinus infection that won't clear up (that's how my husband describes how he feels). I have no clue what the future has in store so I can't say it is mild or not, that is just what the Rheumy told us.
I do know (according to the Pulmonary Doc) That IF he would have issues with his lungs/kidneys that he would be on a slew of medications, however so far those have turned out fine. Not sure if the doctor will put him on more meds on June 1st. Like I said he went off the blood work and biopsy and UA however he did a HUGE panel of bloodwork that will be back within 10 days and once he gets them I'm not sure what else he will do??

[delorisdoe]

Mild weg is okay to say as long as everyone is aware that mild can turn to life threatning on a dime. It is ever changing. When I was first diagnosed I was on 100mg a day and it was split in am and pm i would assume for the same reason you just stated.

For me nothing scares me more with wegners than sinus involvment. I considered myself lucky to only have lung involvement. This is no longer the case and now for the first time since the begining I am again scared of wegners.

[vdub]

He said with the prednisone therapy you do the fullest dose at first and lower ever 5 days. That is what I didn't understand.

I'm not a doctor, I didn't play one on tv, and I haven't stayed at a Holiday Inn Express. However..... The taper issue with prednisone is the same with all hydorcordisones. Hydrocortisone is a replacement for a naturally occurring hormone in your body called cortisol. Cortisol is made by the adrenal glands (one located on the top of each of your kidneys). When your body detects that you have enough cortisol (cortisone), then the pituitary tells the adrenal to stop producing it.

Sooooo, when you are given high doses of any hydrocortisone (with the exception of oiments you put on your skin) then you have to slowly taper off the cortisone in order to give your body a wake up call and tell the adrenal glands to start producing cortisol again. Actually, it is a little more complex than that, but basically that's the jest of things.

You don't want to just "stop" taking cortisone, since you would then go into a situation of not having enough -- google Addison's diesease. The corollary of Addison's is Cushing's disease, that is, having too much cortisone. Either one is bad. Too much cortisone can lead to steroid psychosis. Many of us have been there. It is the absolutely worst feeling I have ever had. I ended up in the pshych ward for 24 hrs until the excess cortisone could leave. (The hallucinations were really cool tho)

Some people have reported forgetting to take their pred at times. Bad news.... You don't want to forget. Hydorcortisone has a half-life of 8 to 12 hrs. You need to keep a steady stream per your doctor's instructions. Everyone on pred should have a pill box that they carry with them just like they do their car keys or wallet. It's that important.

If you are on a schedule for taking pills, then an alarm watch is really handy. If you can't hear an alarm watch, then get one that vibrates. The Casio Hunter/Fishing watch has a vibrating alarm -- $30.

[Stephanie78]

vdub - That totally makes sense, thanks!

As for the schedule of taking it, he prepares the night before. He has a pill container for the mornings (He also takes his regular vitamins) He sits that with his coffee cup the night before (That way he takes it with his breakfast) Then the bottle is kept in the glasses cabinet (So when setting the table I remember to set it on the table) He also carries a pill box with him just in case he has to work late and eat dinner out. The doctor did tell him how extremly important it is to take them at the same time every day.

I too am no doctor. (Unfortunatley I took on financing instead of medicine) however I have tried to educate myself as much as possible rather it is on the internet, books or just simply from the doctors. My husband knows the importance of what he has to do and he understands the severity of the disease, however he is definitley a go-getter in life and although something may be going on with him, he pushes himself with work and family, thus the reason I have educated myself a little more on the WEGS issue and try to go to the appts with him. That way I can encourage him to slow down when he needs to.

Not saying that it won't get worse, because I know the stactics and all, but I do feel blessed because according to others on the forum, they went a long time being misdiagnosed and once it was found to be WEGS they were almost on their last leg of the race. I feel blessed that we have such a great group of doctors who found it right away. It was the first thought of issue when he went in with what he thought were pollops of the sinuses.

[marta]

Hi Stephanie,

I too hope that your husband gets better quickly and without any complications. I think though that like Leigh said, you have to be weary of the 'mild' description. In an earlier post you mentioned that your hubby has issues with sweats, chills, fever, weight loss, sinus, rash, and headaches. That to me seems like it's not localized to just the sinuses but it is indeed systemic and needs to be treated as such. The first docs that I went to were treating things separately, it was when I got the 'House' team looking at me that they finally looked at all the symptoms as a whole and made the diagnosis. Mine started with ear problems but because the ear problems were so severe, the other symptoms took a back seat and I didn't realize I was suffering from them until I was forced to stop and think about what was going on and why I can't walk or talk or do anything, instead of just dealing with the main pain. I too feel lucky and like I have it a lot easier than a lot of people on this forum, however I know that I have Wegener's and it will be with me for life. I think I was in a bit of denial the first six months, thinking I'll kick this thing to the curb and show the doctors how it's done - then I had a flare and things gelled in my head. This is for real, it's life threatening, and it's with me for ever (be it at varying degrees).

I know how scary it is at first. I also know that when you're new to this disease you have to trust what the docs are telling you. One thing to remember though is that doctors are people like you and me and everyone else. They have good days and bad days, they will leave a project on their desk for tomorrow if they have some important family business to attend to, they like some of their work more than other parts of it, they surely skipped some classes in university. So despite the fact that we want to place them on pedestals and trust every thing they say, I think it's important to treat them like people, take the time to educate ourselves on what's going down and question them if something feels off. If we treat them with respect and like human beings they will do the same back to us (except for the ones with big egos, and them you just wanna dump and move to a new doc).

There, that's my two cents.

[vdub]

except for the ones with big egos, and them you just wanna dump and move to a new doc
Absolutely, most every doc will welcome a 2nd opinion. Only the big-ego, fighter-jock types will be offended and you don't want them treating you anyway.

For carrying my drugs around, I came up with my own little pill holder. I wanted something that was water-tight, narrow, and light. I ended up buying several AAA mag-lite clones at Wal-Mart for $3 each, cut off the head with my dremel, and then plugged the end with a little bit of JB Weld. My "pill holders" go everywhere I go. Works for me.

941

[Sangye]

Actually (due to research and due to what the doctor explained) Due to the high dosage that he put my husband on they do split it up between Morning and Evening meals. I don't know the dosage amount off hand (I'm at work) But he said that having a high dosage, that they seperate it with meals (1 with breakfast and 1 with dinner). He said with the prednisone therapy you do the fullest dose at first and lower ever 5 days. That is what I didn't understand.
I have a cousin who is on Prednisone for different reasons and she too does the split dosages (AM and PM). He was extremly helpful. Since (according to previous UA) there is no sign of Kidney damage and there is no sign of Liver damage (Normally the extreme cases are where those two organs are affected) and since his symptoms are few and minor and from the biopsy, that is why he classified it as a mild case. He just started the prednisone on Wednesday so the prednisone has in no way been a reason for his lack of sleep. He has had it for about 6 months and according to my husband it is because he wakes up with a dry mouth from not being able to breathe, so saying the exhaustion came strictly from the WEGS can't be said. I mean his sinus issue is from the WEGS however lack of sleep is surely one cause of exhaustion.
I appreaciate the response, And I hope you start to feel better!
Stephanie, it doesn't matter if you split the pred dose unless it's a very low dose. The high dose stays in the body long enough to work just fine. The split dosage can make it very hard to sleep and may interfere with other things. Whether you take high dose pred all at once or split it makes no difference in treating Wegs.

As far as "mild" disease... Wegs is a serious disease but the current level of activity is not always serious. You can have mild, moderate or severe disease activity at any given time. The Wegs specialists determine the degree of disease activity at each visit using signs/symptoms, lab work and other diagnostic tools. With mild disease activity it is not necessary to use the heavy-duty drugs unless the milder drugs do not work for some reason. Some people have such mild activity that the best approach is "watch and wait." Traditionally everyone with Wegs was treated the same--with the heavy duty chemo and high dose pred. But Wegs specialists have learned that this causes unnecessary damage in people with milder disease activity.

[Sangye]

vdub, the adrenals don't shut down unless you've been on at least 20mg for 3 weeks. It's possible to go on very high doses of pred and speed-taper off as long as you get below 20mg by day 21. The adrenals will not be turned off by then, and you could even stop the pred abruptly without a problem. However, if you stay on doses over 5 mg for much longer, you might not be able to go off abruptly without some trouble.

You probably already know this. Just wanted to clear this up for newer members.

[Sangye]

I think I was in a bit of denial the first six months, thinking I'll kick this thing to the curb and show the doctors how it's done -
LOL I did the exact same thing.

[Rose Cozzette]

saw your latest udate. I went into full wegners so my case was different, was in hospital for most of one month, was on 60mgs of preds and a slew of other meds. I did have blood clots and kidney damage, it did take over 6 mos to diagnose from when I started getting sicker. before that it was just sinus problems for abt 2 years before I got worse. so timeing is essential to stop organ damage. I had one flare up. I have had cytoxin and ended up on cellcept along with preds, which am now going to be on 5mgs a day for awhile. since your hubbys case is different, I guess new ways of using preds are being used. he will have to be very aware of symptoms changing so that he can know when he is relapsing. being educated in wegs is so important and I have found this blog to be wonderful for keeping me on my toes. I have
"fired" 3 docs due to their not being sensitive to my needs and am doing ok now but am planning on moving soon so will have new ones, hope it goes well. sleeping was a real problem on preds and is now much better on a low dose. still get tired easily and have to watch this. the sinus problem is ongoing but better than before. hugs to you both...

[elephant]

Rose, even though I am in medical remission ( cellcept , cyclosporine , prednisone and bactrim), I still have sinus problems too. I guess those symptoms we have to live with. ;(

[drz]

[QUOTE=marta;I know that I have Wegener's and it will be with me for life. I think I was in a bit of denial the first six months, thinking I'll kick this thing to the curb and show the doctors how it's done - then I had a flare and things gelled in my head. This is for real, it's life threatening, and it's with me for ever (be it at varying degrees).
.[/QUOTE]

I think this is pretty common. I did it so well during my first hospital admission for WEGs that I convince myself and my doctors that i had had a miraculous recovery and was ready to do home. They talked me into going to a rehab hospital though and while we were waiting for that to be processed reality struck and I ended up back in ICU and spent several more weeks as an inpatient before getting to the rehab hospital. But I did it again and left the rehab hospital to go home but was back in regular hospital in three days. It is hard to accept that WEGs/GPA does not submit easily to our wishes and that we can't really control it and it doesn't care much about our agenda's or time tables. . We just have to try to learn to live with it and manage it as best we can with the help of our medical care team. I think once we finally understand that and accept it, it does get easier.

[Rose Cozzette]

Rose, even though I am in medical remission ( cellcept , cyclosporine , prednisone and bactrim), I still have sinus problems too. I guess those symptoms we have to live with. ;( yeah, its the pits if one dwells on that but best to think forward and work on good health and well being. :}

[Rose Cozzette]

could I get how others have done decreasing preds and if diabetic? down to 5mgs now and feeling punk. sugar scores are dropping in pm and raising in am. waiting for doc to call me back on it.

[Hammy8241]

could I get how others have done decreasing preds and if diabetic? down to 5mgs now and feeling punk. sugar scores are dropping in pm and raising in am. waiting for doc to call me back on it.

Failing Rose! I can't get below 11mg without returning symptoms gradually returning. Awaiting review with Consultant. No problem with sugars. Hope you get it sorted quickly.

[Rose Cozzette]

Failing Rose! I can't get below 11mg without returning symptoms gradually returning. Awaiting review with Consultant. No problem with sugars. Hope you get it sorted quickly. I had some problems when dropped to 9 but then ok till now and since my diabetes was preds induced, I figured it would get betterand maybe go away.

[drz]

could I get how others have done decreasing preds and if diabetic? down to 5mgs now and feeling punk. sugar scores are dropping in pm and raising in am. waiting for doc to call me back on it.

I had to decrease insulin as pred was deceased. Tough to balance the two.

[jmmilliorn]

I was 64 when diagnosed--about seven months after I started getting ill.

[Rose Cozzette]

I had to decrease insulin as pred was deceased. Tough to balance the two. yeah, its all a balancing game. decreased the diabetic meds and hope to cont the preds decrease in abt 2 wks. asked the doc abt the cortisol involvement and he said the preds stops the adrenal glands from producing and if the preds doesnt come down slowly then cushings disease or others adrenal probs can happen. interesting. so will research more on it. feel slightly better but still lethargic and glucose scores going up and down but real high.

[Sangye]

Rose, a history of steroid-induced diabetes makes you more likely to get Type 2 diabetes even once you're off the pred. You might be in that grey zone right now where your body is toying with the idea. I suggest you increase your protein and eliminate white flour, white sugar and high fructose corn syrup from your diet. That'll go a long way to getting your body out of that grey zone.

[Rose Cozzette]

Rose, a history of steroid-induced diabetes makes you more likely to get Type 2 diabetes even once you're off the pred. You might be in that grey zone right now where your body is toying with the idea. I suggest you increase your protein and eliminate white flour, white sugar and high fructose corn syrup from your diet. That'll go a long way to getting your body out of that grey zone. ok, I had to reduce my protein due to the kidney damage but the other things I am doing. or trying to. had a sick day yesterday with diarrhea and stomach ache. all kinds of stuff since decreasing the preds to 5mgs. think its related to this also? oy if its not one thing its another. see the kidney doc tomorrow so will ask more questions.:glare:

[maria garcia]

My husband (35 years old) has just been diagnosed with WG. He is being sent to a Lung specialist and has a CT scheduled for the 26th. The doctor (ENT) did not offer much information on this disease other then to say it is an immune disease and that he would have to be under a Lung Specialists care.
Since the doctor left the results via voicemail at 5:05pm we knew NOTHING about WG. Against my good judgement I decided to "google" it and made the mistake of reading numerous websites. I didn't have the heart to tell my husband most of what I read.
My husbands ONLY symptom is that he has a stuffed up nose. We moved to NC from KS last October was a year ago. As we approached the Spring (Last Spring) he though he had allergies. He didn't see a doctor due to the fact that Allergies run in his family. Since it doesn't get too cold where we live it is not abnormal for some people to have allergies all year round. Over the past month or so it has become worse. He use to run however due to the severness of the stuffiness he couldn't run due to not being able to breathe. He finally went to an ENT thinking he had pollups (sp?) and he put him on an antibiotic as well as a nose spray for 5 days. He had his follow-up this past Monday and it was discovered that nothing had changed. He then sent him for bloodwork and scheduled a CT. Yesterday he received the results that it was WG. I have read a lot on line since getting the results and realize that most patients find out only after they have kidney/renal failure.
Any and all advice would be great concerning this. Please Educate us, not on what you have read but what you have experienced. We have two kids (14 and 7) and the NOT knowingterrifThanStephanie



Stephnie I sent you an EMail and a priva message. Ihave a question. Was your husband nose ever biopsied? I read about blood work and Ct scan. I believe a biopsy is the only real way to diagnose. Im still working on having my daughter have on on her nose. I have to wait 1 month per the ENT wants her to use to allergy drops first. He was very lucky to be able to get diagnose so fast.

[Rose Cozzette]

saw the kidney doc and got labs back, cholesterol and triglycerides are best they hav ebeen in 30 yrs. yay! kidney function the same nad he wants me to see urologist as urine in blood,traces, does not go away. anyone out there have this problem? his plan is for me to be off the cellcept by end of year if things cont as they are and be off preds in abt 2 mos.

[pberggren1]

I have had blood in my urine lately as well Rose. It was really bad about a month ago. I was like pissing a dark red wine.

[Sangye]

I've had trace urine pretty consistently but definitely don't have kidney involvement or bladder issues. Dr Seo says it's nothing to be concerned about, so I'm not.

[Jack]

Some of the stuff we get and dismiss as not being that important would have your average person running to the ER!
Blood leaking out here and there? Not a problem! :w00t:

[Sangye]

LOL! Exactly! http://www.smileyhut.com/laughing/rofl.gif (http://www.smileyhut.com)

[pberggren1]

That is so true Jack. The other day at the pool hall I had a bad coughing spell and horked up a big bloody chunck and got some screams from that one. People said I should go to the ER right away. I said no prob here, this is normal. But people were just like what, normal, this is insane. I said yes it is insane, but it is normal for me and told them that with this lung infection it may never go away.

[drz]

That is so true Jack. The other day at the pool hall I had a bad coughing spell and horked up a big bloody chunck and got some screams from that one. People said I should go to the ER right away. I said no prob here, this is normal. But people were just like what, normal, this is insane. I said yes it is insane, but it is normal for me and told them that with this lung infection it may never go away.

Yea, Phil, that is one way to clear out a dining room. I found when in the hospital and trying to have breakfast in dining and I started coughing up blood and filled a couple glasses, they were very willing to quickly move me back to ICU unit. I told them I was just trying to make a "Bloody Mary" and wanted to know if they had any vodka.

[pberggren1]

Yea, Phil, that is one way to clear out a dining room. I found when in the hospital and trying to have breakfast in dining and I started coughing up blood and filled a couple glasses, they were very willing to quickly move me back to ICU unit. I told them I was just trying to make a "Bloody Mary" and wanted to know if they had any vodka.


ROTFL! That is a good one drz!

[Sangye]

It's true. We're the only ones who would laugh at things like that.

[elephant]

If I cough up blood or see blood I go to the ER if is pretty bad. I am a big baby! Rose, How did you bring down your choleterol? Mine has been high for twenty year and I will not go on and meds to reduce it. BUt my HDLs are good.

[Sangye]

Elephant, if your triglycerides and HDL are good there's no reason to do anything about a high total cholesterol.

[elephant]

Thanks Sangye, that makes me feel better. My triglycerides are always low and HDL is always above 70.

[Sangye]

That's excellent!

[Rose Cozzette]

If I cough up blood or see blood I go to the ER if is pretty bad. I am a big baby! Rose, How did you bring down your choleterol? Mine has been high for twenty year and I will not go on and meds to reduce it. BUt my HDLs are good. oh you all are too funny,make my day! elephant, I dont know what I did except try to eat to help the diabetes, have cut back on the sweets and white foods and eat smaller servings so I was shocked to see such a big drop in all my scores. 186 triglycerides and 213 cholesterol, best scores in 30 years. I used to blame it all on menopause, but now that I have info on the preds and the adrenal glands, wonder if that has anything to do with it. ??:confused1:

[Sangye]

Rose, you've made the exact dietary changes that impact triglycerides. Most MDs still spout nonsense about lowering your dietary intake of cholesterol and saturated fats (from animal products)--neither of which has been proven in decades of research. The body makes 80% of its cholesterol-- only 20% comes from food. Get rid of the sweets, white foods, and hydrogenated fats and increase veggies, fiber and good oils. Ba-da-bing--healthy heart. :wink1:

[elephant]

I need to work on the sweets, but I do eat 80 percent good. Need to work on the other 20%.

[Sangye]

I think you're probably doing just fine, Elephant. Your numbers are great.

[Rose Cozzette]

Rose, you've made the exact dietary changes that impact triglycerides. Most MDs still spout nonsense about lowering your dietary intake of cholesterol and saturated fats (from animal products)--neither of which has been proven in decades of research. The body makes 80% of its cholesterol-- only 20% comes from food. Get rid of the sweets, white foods, and hydrogenated fats and increase veggies, fiber and good oils. Ba-da-bing--healthy heart. :wink1: well I had been told for years to cut back on sugar but didnt until the diabetes, but also when you have no taste from the meds, thats helps. lol but I have been doing this for almost 2 years and it just now dropped. ?? what a complicated body we have...

[Rose Cozzette]

I need to work on the sweets, but I do eat 80 percent good. Need to work on the other 20%. dont we all! cont to decrease the preds, just more achy. having a big problem with the smoke from all the fires around the area, having to wear a maskin the house. yuck read up on the adrenal glands and they do a lot! no wonder we are a mess when they are shut down. no energy, irritable, etc. wonder if they ever come back fully.

[Sangye]

Yeah, the adrenal glands are considered your "battery pack" in holistic terms. Do they ever come back fully? It depends. Many people's might from a medical perspective, but from a holistic perspective only a very small number would recover fully. The problem is that we aren't able to do a lot of the specific treatments to restore them without waking up the Wegs dog.

[Rose Cozzette]

Yeah, the adrenal glands are considered your "battery pack" in holistic terms. Do they ever come back fully? It depends. Many people's might from a medical perspective, but from a holistic perspective only a very small number would recover fully. The problem is that we aren't able to do a lot of the specific treatments to restore them without waking up the Wegs dog. well botheration,cant win for losing. :mad1:

[Sangye]

Adrenal weakness is the bane of my existence. Even so, I do not give up. I'm taking it day by day, still hopeful that I can figure out a way to restore them, or least to get off of pred. Or at the VERY least, to get down to 1mg pred and restore my adrenals. I've lowered the bar a LOT. :glare:

[Rose Cozzette]

Adrenal weakness is the bane of my existence. Even so, I do not give up. I'm taking it day by day, still hopeful that I can figure out a way to restore them, or least to get off of pred. Or at the VERY least, to get down to 1mg pred and restore my adrenals. I've lowered the bar a LOT. :glare: I hear you, try to keep moving forward. it is hard tho when I get so tired doing just little things. the rheumy thinks I will get off preds but not able to say what actual recovery will take place. rather like being on a treadmill that wont stop. get down sometimes but refuse to stay down,dammit! sigh...

[Rose Cozzette]

Adrenal weakness is the bane of my existence. Even so, I do not give up. I'm taking it day by day, still hopeful that I can figure out a way to restore them, or least to get off of pred. Or at the VERY least, to get down to 1mg pred and restore my adrenals. I've lowered the bar a LOT. :glare: havng more stomach problems as decrease the preds. anyone else having this problem? go to 3/5 mgs alternated now. Sangye, how much preds are you on now?

[gurinbasra]

I'm home sick today too and I think it's because of the decrease to 6mg. I've had stomach problems and just a general feeling of sickness, head not feeling good - everything but the Weg's stuff. I had this one day last week just when I started the decrease. I wasn't feeling this bad from 10 all the way to 7, but the 6mg is doing me in. Hopefully, I'll be back on my feet tomorrow!

[Rose Cozzette]

I'm home sick today too and I think it's because of the decrease to 6mg. I've had stomach problems and just a general feeling of sickness, head not feeling good - everything but the Weg's stuff. I had this one day last week just when I started the decrease. I wasn't feeling this bad from 10 all the way to 7, but the 6mg is doing me in. Hopefully, I'll be back on my feet tomorrow! hope you feel better quickly. I am feeling just like you described. I get so paranoid sometimes when I dont feel good so this helps. thanks.

[Sangye]

It's a totally different ballgame when you get below 7mg and below 5 mg is different still. Gurinder, you might have to slow down your taper at this point. Ask your doc if that's okay. Rose, I could never tolerate a 3mg/5mg kind of taper. Some people do fine with that sort of thing but many do not. I have no idea what would cause stomach problems with a pred taper, though. You might want to try a taper where you maintain a lower dose until you are stable, then you lower it again.

I've been on 2.5 mg for about 1.5 yrs. I'm waiting until the rtx kicks in to see if I can taper it a bit more. I don't think I can get totally off it, but I'm hoping to get down to something like 1mg.

[vdub]

Adrenal weakness is the bane of my existence.
What caused your adrenals to tank? Months/years of pred? Any positive indications that they are coming back on-line? Have they tested your ACTH production?

Those stupid little adrenal glands are sooooo important to make life a little easier. I sure hope you don't lose them.

[Sangye]

My adrenals were in great shape before the first symptoms of Wegs appeared. However, due to my own stubbornness in trying to treat it naturally for a year (I thought it was Lyme's) I was nearly dead by the time I was dx'ed. For that entire year my adrenals were being greatly depleted by having untreated severe disease, including having my lungs silently and massively hemorrhaging. Once I got dx'ed I immediately got tons of blood clots in my legs and lungs which took 3 weeks to diagnose and treat. It weakened me even more. Add to that the fact that the ctx was destroying my bone marrow for 7-8 months while my doctor ignored it. And add to that a too-fast taper off pred while I still had active disease, no less. Then another 2.5 years with no pred even though my adrenals had not come back on..... There's more, but you get the picture!

During the period when I was off pred, my AM Cortisol level was undetectable. (Cortisol is at its highest in the morning) We've never been able to test it since then because I'd have to go off pred for 3 days. I wouldn't be able to function and we've been concerned the Wegs would go wild, too. I see an endocrinologist in July. She specializes in adrenal conditions so I'm hopeful she can figure it out.

[Rose Cozzette]

It's a totally different ballgame when you get below 7mg and below 5 mg is different still. Gurinder, you might have to slow down your taper at this point. Ask your doc if that's okay. Rose, I could never tolerate a 3mg/5mg kind of taper. Some people do fine with that sort of thing but many do not. I have no idea what would cause stomach problems with a pred taper, though. You might want to try a taper where you maintain a lower dose until you are stable, then you lower it again.

I've been on 2.5 mg for about 1.5 yrs. I'm waiting until the rtx kicks in to see if I can taper it a bit more. I don't think I can get totally off it, but I'm hoping to get down to something like 1mg.I was told by 2 docs I should be able to get off preds but not guaranteed. but I want off so work mentally toward that. feel I need to work it thru and havent had WG symptoms more. but no one seems to be able to say much abt the adrenals coming back. what happens sangye when you get off the preds? I dont like the taper the way it is but its the slowest way since I have many probs with many meds. we go 2 wks between tapers.

[Sangye]

No one can say whether or not you can get off pred completely. You can only find out by trying.

There are 3 ways to taper pred:
1) Same dose each day and taper it. (eg 5mg every day, then taper it to 4mg a day every day....)
2) Alternating zero pred days (eg Monday 5mg, Tuesday 0mg, Wed 5 mg....)
3) Alternating dosage days (eg Monday 5mg, Tues 4mg, Wed 5mg.....)

I don't think your current taper is the slowest way at all. You could try alternating 5mg/4mg if 5/3/5 is giving you trouble. If you've been on pred for longer than the initial 3-6 months, you might have to drop 1mg a month to get below 5mg. To get from 5mg to 2.5mg I had to taper by 1/4 mg every week or so. Sometimes I had to hang out at a new dose for a couple weeks. So I was generally tapering by 1mg a month but I couldn't tolerate dropping it the entire 1mg at a time.

[Rose Cozzette]

No one can say whether or not you can get off pred completely. You can only find out by trying.

There are 3 ways to taper pred:
1) Same dose each day and taper it. (eg 5mg every day, then taper it to 4mg a day every day....)
2) Alternating zero pred days (eg Monday 5mg, Tuesday 0mg, Wed 5 mg....)
3) Alternating dosage days (eg Monday 5mg, Tues 4mg, Wed 5mg.....)

I don't think your current taper is the slowest way at all. You could try alternating 5mg/4mg if 5/3/5 is giving you trouble. If you've been on pred for longer than the initial 3-6 months, you might have to drop 1mg a month to get below 5mg. To get from 5mg to 2.5mg I had to taper by 1/4 mg every week or so. Sometimes I had to hang out at a new dose for a couple weeks. So I was generally tapering by 1mg a month but I couldn't tolerate dropping it the entire 1mg at a time. you may be right. I have been on preds for 2 yrs, thats when I got so sick and was dxed. what a trial and error business this is!

[Sangye]

Oh yeah, 2 years is a long time and you'll have to be very patient tapering. Dr Seo has really gotten that into my head. :wink1:

[Rose Cozzette]

Oh yeah, 2 years is a long time and you'll have to be very patient tapering. Dr Seo has really gotten that into my head. :wink1: well shoot, patience is not my strongest point. plus I am concerned abt the long term damage preds can do.

[Sangye]

You'll do far more damage to yourself if you hurry a taper. In fact, if you mess it up like I did last year you'll have go back up to the dose where you began, sit there for 6 months and then start all over.

And if you taper off pred before your adrenals turn back on, you'll be in very bad shape. Trust me on that one.

[Rose Cozzette]

You'll do far more damage to yourself if you hurry a taper. In fact, if you mess it up like I did last year you'll have go back up to the dose where you began, sit there for 6 months and then start all over.

And if you taper off pred before your adrenals turn back on, you'll be in very bad shape. Trust me on that one.how do we know when the adrenals turn back on?

[Sangye]

Mostly you'll know when they don't. Afternoon sleepiness, tearfulness, feeling like you don't have enough steam, etc... are signs that you've tapered too fast and your adrenals aren't kicking in. If you have these symptoms after you drop the dosage, don't let it continue more than 2-3 days or you'll get into trouble and have to increase the dosage a lot to fix it.

If you taper the dose and you feel fine your adrenals are probably kicking in.

[Rose Cozzette]

Mostly you'll know when they don't. Afternoon sleepiness, tearfulness, feeling like you don't have enough steam, etc... are signs that you've tapered too fast and your adrenals aren't kicking in. If you have these symptoms after you drop the dosage, don't let it continue more than 2-3 days or you'll get into trouble and have to increase the dosage a lot to fix it.

If you taper the dose and you feel fine your adrenals are probably kicking in.well I had a crying spell yesterday and never have good energy so that one is not new. I pretty much take a nap every day for 30 min. so doesnt dound like my adrenals have kicked in.

[Sangye]

Maybe, maybe not. If the crying spells, low energy and afternoon sleepiness are more than usual then it's likely the pred is too low. I find it very useful to keep a daily log of pred dosage and symptoms. When I look back over days and weeks of log entries I can see trends that I'd miss otherwise.

[Rose Cozzette]

Maybe, maybe not. If the crying spells, low energy and afternoon sleepiness are more than usual then it's likely the pred is too low. I find it very useful to keep a daily log of pred dosage and symptoms. When I look back over days and weeks of log entries I can see trends that I'd miss otherwise. the only new thing was the crying but better today. I used to cry more on higher doses.

[vdub]

how do we know when the adrenals turn back on?
Look up Addison's Disease. That's how you will feel when they haven't turned on. So if you don't have any Addison symptoms, then they might be turning on....

[Rose Cozzette]

Look up Addison's Disease. That's how you will feel when they haven't turned on. So if you don't have any Addison symptoms, then they might be turning on.... ok thanks.

[Sangye]

You won't necessarily feel that bad though. When I was off pred for 2.5 years and my adrenals weren't on I didn't have most of those symptoms. My adrenals were probably barely functioning--just enough to keep me alive--unlike Addison's where there is no function at all.

[Rose Cozzette]

You won't necessarily feel that bad though. When I was off pred for 2.5 years and my adrenals weren't on I didn't have most of those symptoms. My adrenals were probably barely functioning--just enough to keep me alive--unlike Addison's where there is no function at all.
I llooked up addisons disease and it seems that the abrupt stop of preds can cause secondary adrenal disease, thus why to do it so slowly. I guess we know if the adrenals are working by our energy level increasing. confusing for us w/kidney problems as shuldnt increase salt which is part of treatment. guess we are just a puzzle but I have all these questions. ???

[Rose Cozzette]

You won't necessarily feel that bad though. When I was off pred for 2.5 years and my adrenals weren't on I didn't have most of those symptoms. My adrenals were probably barely functioning--just enough to keep me alive--unlike Addison's where there is no function at all.
forgot to ask you if you got treatment for adrenal insufficiency when yu were off preds.

[vdub]

Sangye is right... It's just an indicator... Things to look for as if you don't already have enough issues to wonder where this or that pain came from.... :-)

[Sangye]

The whole time I was off pred I knew something wasn't right. None of my docs believed me, though, including Dr Seo. They all said if my adrenals were off I'd be dead. That is true if the adrenals are completely non-functional. But a trickle of function doesn't mean they're fine. They all said the undetectable AM Cortisol must have been an error.

It wasn't until I tapered too fast last year and felt exactly the way I had felt for 2.5 yrs that I realized my adrenals had been off that whole time.

[vdub]

The whole endocrine system is nothing to mess with. Surprising the system works at all, especially with it's tri-axis type behavior.... Pretty remarkable that even a healthy person is able to live from one day to the next.....

[Rose Cozzette]

The whole endocrine system is nothing to mess with. Surprising the system works at all, especially with it's tri-axis type behavior.... Pretty remarkable that even a healthy person is able to live from one day to the next..... boy, you got that right, our systems are so complex. and our bodies are assailed and assaulted daily by hundreds of toxins etc. cant really take the body for granted, its full of surprises! :ohmy:

[Rose Cozzette]

had a migraine yesterday and had not had one in a looong time, since before I got sick. does this mean my system is getting back to normal? lol

[delorisdoe]

lol...probably.

[Rose Cozzette]

lol...probably.I guess be careful what you wish for... seems I have forgotten some of the "normal" I was before and also that I think of time as before WG and now. sheesh

[Rose Cozzette]

lol...probably.new developments, as usual. was feeling really bad, pain on inhaling a breath, back pain, tired, so went to my reg doc and had chest exray done, turned out ok, shows osteo changes in my spine but no pneumonia. did 10 mgs preds yesterday and now on 6/4 alternating and will do it 1mg decrease again but watch more for symptoms. oyoy do feel better already from the 10 mgs preds. what a merrygoround!