How long do we have to stay immune suppressed?

[Psyborg]

I'm sure this has been answered before...but how long once we hit remission? I'm on cold/infection number 3 for the cold season so far. Getting a bit frustrating, between people that don't make an attempt to stay home from work when they are sick, and my kids bringing stuff home, it seems like nothing gets by me :p

My biggest problem is I've ALWAYS had everything go to my chest. Now with the stenosis I have a heck of a time coughing up the gunk...it all catches in my trachea.

[Jack]

I would have said that as soon as you were in a state fit to be called remission, the wind down of medication could begin. The speed will then depend upon many things including the length of time you have been ill, how badly you were affected and also the attitude of your doctors to going drug free. I have never had this option open to me so any time prediction would be a pure guess, but I would think that a target of a year would be reasonable. (that may be way off target! ;) )

[andrew]

How long is a piece of string? (yes, I know, twice as long as half its length). There's no way to tell from one individual to another how long one stays on immune suppression even after being declared in remission. Note that being in remission and being drug free are two completely separate things. You can be in a drug-maintained remission OR a drug free remission, just depends on how you cope with a reduction in your meds and how your labs look as you go. Has the doc spoken to you about tapering off your immune suppression? It needs to be done very carefully. WG just needs a crack between the door and the frame to sneak through and cause chaos again.

I hear you re: the lung infections. I was in a lift last week with someone that was coughing and sneezing. No way to get out so held my breath for four floors. Pretty good effort for me LOL!

[Psyborg]

LOL yeah, holding my breath might be good idea...though 8 hours straight at work is rough :)

I'm feeling a bit of the old joint pain again right now (just finally dropped to 10MG of Pred). Just frustrated getting sick repeatedly. Probably feeling sorry for myself :p

[Jack]

Daily Bactrim helped a lot with the infections that I used to get, but won't stop colds obviously. But I expect that you are already soaked in antibiotics.

[Sangye]

Psyborg, I suggest you see a holistic doc. They can work within the limits of your drugs and improve your resistance. Meanwhile, avoid sugar and soda--both immune-suppressing. Make sure your vitamin D levels are okay. Take vitamin C (up to 2,000 mg/day) and zinc (up to 100 mg/day). More C will stimulate your immune system and wake up the Wegs. More zinc actually suppresses immunity.

I think you already use a neti pot (or some sinus rinse). Do you add anything to help prevent infections, like honey?

There isn't too much you can do about your kids bringing stuff home, but you can do a lot to boost their immunity to keep them from filling the house with bugs. Also, teach them to wash their hands (up to elbows) and face as soon as they get home and keep hand sanitizer around the house. That makes a huge difference. They'll get fewer bugs and so will you.

[Psyborg]

I hadn't done a neti pot...I have basically very little sinus involvment so it hadn't seemed necessary. Am I off base there?

I woke up yesterday and my tongue hurts. I think I may have thrush... <sigh> Gonna have my dad check that out tomorrow when he comes over and if so I'll be going to the doctor Monday.

[Sangye]

I don't have sinus involvement but Dr Seo told me to do a neti pot twice a day. It helps keep infections from taking up residence and it cleans out allergens. I did it for years as part of a yoga routine, but had let it slip once I got Wegs and couldn't do yoga anymore.

I also stopped doing it since I got the vertigo in July. I'm constantly on the verge of it. I think not doing my daily rinses was one reason why this recent bug took up residence so well. I knew when I was exposed and should have rinsed my nose immediately.

[Psyborg]

I'll ask about the neti pot then. :) I'm glad to work at prevention when I can.

[drz]

I'll ask about the neti pot then. :) I'm glad to work at prevention when I can.

The squeeze bottle or Water Pik sinus rinse are also options that I prefer over the neti pot. They are available at most drug stores. You can buy premix packets of soda and salt or make your own for the rinse. I find it helpful and use it most days. My ENT doctor strongly recommends these and gives away free squeeze bottles and starter packets to encourage usage since regular usage prevents a lot
of problems.

[Psyborg]

Now I'm wondering if the chest/throat issues I've been having are the same fungus as my tongue. Though it usually goes from mouth to other areas rather than vice versa. It feels like an infection but no fever at all...makes me suspicious.

[Sangye]

You could certainly have a systemic yeast infection. Very easy to get with past or current antibiotics. It can cause a cough too, but usually not a productive one.

[vdub]

You guys are so depressing, but I guess that's just part of this disease.

I use a neti pot all the time and love it. I bought the $14 job at Walgreens, but refused to order the "refills". I discovered that a 50/50 mix of salt and baking soda was the same thing. The amount you use in each "pot" is up to you. I make mine fairly stout. Truly hope things get better......

[Jack]

You guys are so depressing, but I guess that's just part of this disease.
I think just the opposite. The way most on here cope with relentless problems is inspirational.

[Psyborg]

Well the cough is quasi-productive. I've had pretty hard issues with getting stuff up since the TS started, what used to produce a lot of stuff doesn't so much anymore :)

[Sangye]

I think just the opposite. The way most on here cope with relentless problems is inspirational.
Me too. Wegs affects every bit of one's body, mind and life. So many on here suffer terribly, every day. The fact that people here are able to laugh and offer help to others just amazes me.

[Sangye]

I use a neti pot all the time and love it. I bought the $14 job at Walgreens, but refused to order the "refills". I discovered that a 50/50 mix of salt and baking soda was the same thing. The amount you use in each "pot" is up to you. I make mine fairly stout. Truly hope things get better......
You can make it yourself, but if you use a hypertonic or hypotonic saline solution, you will cause problems with the sinus tissues. Part of how the rinse works is by osmosis. Saline solution works by drawing a certain amount of fluid out of the sinuses, reducing inflammation.

It can be a hidden vicious cycle to use too much or too little salt because inflammation can take hours to build up. So you think it's just time for the next rinse, when the rinse itself is creating the problem. This was a common scenario in my practice: I'd tell a patient to use ice on a back injury, as it reduces inflammation. No one likes to put ice on, so they'd use heat instead, which increases inflammation in an acute injury. They'd call and say "I switched to heat because it feels so much better than ice. But even with heat, my back is seized up. What a bad back injury I have!" :rolleyes1:

[vdub]

if you use a hypertonic or hypotonic saline solution, you will cause problems with the sinus tissues
Excellent information to know! Since I had my operation 6 weeks ago to open up the sinus channels, I have been better. Initially, I didn't think there was any change, but as time has gone by, its gotten better.

One other interesting thing about the sinus operation was that a biopsy on the tissue that was removed, didn't show up with any granulomas. That, of course, is welcome news, but, at the same time, puzzling. I'm just kind of wondering where and when the WG will show up again. I'm not sure it's in remission now. Another good reason to go to SLC.

[Sangye]

Sinus biopsies are famously inaccurate--high percentage of false negatives. Biopsies aren't used as a indication of remission. The combination of signs/ symptoms with lab results are the way they measure disease activity.

[vdub]

Mostly through ANCA? I keep copies of all my lab reports and I'll be darned if I can find anything where they ever checked ANCA. Maybe it's called something else on the lab report....


Well, I have to edit this. My wife just reminded me that they pulled blood at my endo's hospital and my rhumy's hospital way back in April. I wouldn't have copies of those. But, I have apts at both those hospitals tomorrow and I'll have to see if I can snag some copies......

[Sangye]

No, ANCA is really only useful for initial diagnosis. For some people (very few) it's a reliable indicator of disease activity. The lab results that help demonstrate Wegs activity are ESR and CRP. Those are inflammatory markers. If someone has bleeding (eg, lungs) then watching the hematocrit and hemoglobin are useful. Creatinine is an indicator of kidney function. Urine tests are also done to keep an eye on kidney function.

The BVAS (Birmingham Vasculitis Activity Score) is used to measure disease activity. Most Wegs research uses the BVAS to track response to the drugs being tested.
Johns Hopkins Vasculitis Center Research Birmingham Vasculitis Activity Score (http://vasculitis.med.jhu.edu/research/bvas.html)

[vdub]

Well, I guess I'll be using the rest of the morning to research this! Thanks for the info!

[Jack]

The BVAS (Birmingham Vasculitis Activity Score) is used to measure disease activity. Most Wegs research uses the BVAS to track response to the drugs being tested.
Johns Hopkins Vasculitis Center Research Birmingham Vasculitis Activity Score (http://vasculitis.med.jhu.edu/research/bvas.html)
Devised by the team who treat me! :thumbsup:

[Sangye]

LOL You Brits sure love your teams. I think you should bring a vuvuzela to your next appointment. :w00t:

[Jack]

It is getting a bit that way in the waiting room these days. When I first started going there it was like a small private club and I recognised everyone and knew all the staff, but now it is a very busy place and I often have to give my name when I check in instead of being recognised.

[Sangye]

LOL But you're famous! You should carry a trophy that says, "Longest Team Player."

[vdub]

I have it really good in small town personal department. Everyone knows me partly because of the disease, but mostly because of the frequency of visits.

When I first visited my edno in "the city" there was a sign that said something to the effect that "lab reports would not be available for 2 to 3 weeks". I asked her if I could just handle my own labs because I could get the results in 1 hour flat. She didn't believe me until the reports started rolling in. My endo requires blood tests every 3 months and the rhumy wants them every 2 months, so the folks at the lab know me real well.

[drz]

I have it really good in small town personal department. Everyone knows me partly because of the disease, but mostly because of the frequency of visits.

When I first visited my edno in "the city" there was a sign that said something to the effect that "lab reports would not be available for 2 to 3 weeks". I asked her if I could just handle my own labs because I could get the results in 1 hour flat. She didn't believe me until the reports started rolling in. My endo requires blood tests every 3 months and the rhumy wants them every 2 months, so the folks at the lab know me real well.

How long did it take you to get to this point where they only need to check you every two months? That must be nice to be stable enough to have that much time between blood draws and I will make that my goal for this year.

[JanW]

I went to every two months with my appointment in November (seeing my doc on Tuesday). I have been treated since January.

[vdub]

I had no idea that was unusual to have it checked just every 2 months.

I'm not sure I am all that stable, tho. I have lots of questions for tomorrow's apt with the rhumy. I have no idea how much time docs have to devote to really analyzing a lab report, but I suspect its not much. If that is true, then I suspect they look at what the computer has flagged as "out of range". But if they don't go any further than that, then I think they are missing stuff. For instance, I just looked at my last lab (which was 2 weeks ago) and the creatinine level was exactly on the high end where, if any higher, it would have been flagged. At the same time, my globulin level was exactly on the low end where, if any lower, it would have been flagged. Both of those could be indicators of a kidney problem.

I have several other tests that are in the same position, i.e., right on the edge of the normal range.....

However, I'm no doctor and I havn't stayed at the Holiday Inn Express....

{sarcasm} I'm sure doctors really, really appreciate the internet.... {/sarcasm}

[Sangye]

For certain tests, being "high-normal" or "low-normal" is perfectly fine. Docs do look at trends in your lab work, so if your results are still in the normal range but are moving lower or higher over time they might be concerned. It depends on the particular tests.

Holistic docs look at labwork with a narrower range for most results. So someone who is low-normal might be in our alarm range. That's because we look for disease developing, not just once it has already developed. "Sub-clinical" is the term we use for that.

[JanW]

I think that you are absolutely right vdub. Usually when you get your lab report, the unusual things are flagged with bolded type, sometimes with asterisks, so that anyone can clearly see what is abnormal. I think docs spend more time looking at that then the do the regular stuff. And, hopefully talking to you about your symptoms, which is equally important for us Weggies.

[Psyborg]

So it turns out I have Bronchitis and Thrush both. Must be mild bronchitis, as the majority of the pain is in the trachea, though that is causing major issues coughing up mucus.

The thrush is apparently a result of the penicilin I took for the root canal...I swear I feel like the dutch boy trying to patch holes in the dam with my fingers some days :)

[Sangye]

Bob, which doctor diagnosed bronchitis? An ENT who checked on your stenosis?

[drz]

So it turns out I have Bronchitis and Thrush both. Must be mild bronchitis, as the majority of the pain is in the trachea, though that is causing major issues coughing up mucus.

The thrush is apparently a result of the penicilin I took for the root canal...I swear I feel like the dutch boy trying to patch holes in the dam with my fingers some days :)

How does penicillin cause thrush? Is that a type of allergic reaction or normal side effect? Hope you have enough fingers to keep ahead of the problems. Best wishes for better health this year.

[Psyborg]

Was my regular doctor, my ENT is in Cleveland, but I'd go if I start to feel worse for sure.

Penicillin doesn't cause thrush, but it kills the good bacteria in the mouth that keep the yeast fungus in your mouth in check.