Celebrate how far we have come!

[drz]

After several trips to local clinic in the past four weeks, two antibiotics, doing nasal rinses several times a day, taking lots Guaifenesin, lots of Fluticasone nasal spray, inhaling steam to try clear sinuses, and sleeping most of the days i finally concluded my increased GPA residual symptoms and related problems are not going to get better without getting some more help for my GPA. In the past these episodes of increased residual symptoms usually subside by themselves in a few days or couple weeks. So yesterday I contacted my treating doctor who has assured me several times in the past he would see me ASAP if I had a serious flare.

This isn't a serious life threatening flare YET or I would be seeking admission to a hospital for treatment but the increased residual GPA symptoms like blood clots and fresh blood in many nasal rinses, frequent coughing from excess mucous running down my throat, more fatigue, more body aches and pains, lots of gunk in sinuses coming out in nasal rinses, mouth sores etc are exhausting me. It is also really getting in the way of the life I have been able to enjoy when I am feeling better in what my doctors call a stable drug induced remission. I haven't been able to enjoy any of my usual fun recreation activities for over a month.

So far my lungs are still clear according to the five medical staff who have seen me in past four weeks. My lab and dipstick tests indicate no blood in urine and I haven't coughed up a cup of fresh blood so my lungs and kidneys don't seem affected yet so far but i know how quickly things can change and I am tired of feeling sick and tired and coughing all the time.

Last night I had an allergic reaction of my tongue swelling up which probably related to my just finishing my Zpack of Azithromycin and developing an allergy to it. This is unfortunate for me since it was one of two that I used most often for infections. I am already allergic to the most commonly used ones.

I got a shot of 25 ml of Benadryl and 125 ml of Solumedrol which seemed to relieve the swelling in my tongue very quickly. The steroid shot also gave me an energy bump today so I was able to spend the hours on the phone needed to finally get my appointment confirmed for next week. I will probably get a lot more steroids as they are talking about a Medrol pack for me. This is disheartening cause I know the months it took to get rid of buffalo hump and most of the moon face but right now it seems worth the risk and maybe necessary to keep the Weg dog at bay before it decides to take a bigger bite of me again.

The one bright ?? spot in being ill the past month is I finally got under the weight i had when discharged from the nursing home four years ago by losing 15 pounds. I haven't been this low in weight since I got really sick with Wegs back in 2010 but i am sure the additional steroids will put it all back along with some extra just like it did last time.

Anyway I will feel good about getting a good check up by the doctor who has treated me since my diagnosis and knows my history of GPA very well. And hopefully benefitting from whatever new treatment my experts think i now need.

I have also spent a lot of time researching nasal rinses and chronic sinus infections and bronchitis and will start another thread on that topic to share my ideas and gain more info from you all too.

[Pete]

Hope you can stay ahead of the curve with this flare. Doc sounds like he can knock it down quickly.

[mrtmeo]

Please update us when you find out your treatment.
I pray things go well.
15lbs, that is a good loss considering the prednisone.

[mishb]

drz, I was hoping that things were better by now
I hadn't replied to the pm because I could hear in your writing just how hard it is to write and breathe and focus at the same time.
It is so draining

I'm sorry that things are still bad, but I am happy that you are being pro active and getting 'the dog' seen too before he gets angrier.

Hopefully, with just a little low dose of WG/GPA meds, it will put things right again

Always thinking of you - take care

[renidrag]

Your knowledge and strength continues to inspire, I hope things get better for you.
Dale

[chrisTIn@]

You seem perfectly in control, even when you 're going through this difficult period.
I hope your doc will find the right balance in medication, to keep you on the safe side of a flare.
You 're in my thoughts, thanks for writing the update. Please keep us all posted!

[drz]

As I posted in another thread things seem better again. The consensus seems to be that the infections I had early this year started a big Weg flare but then slowly subsided as infections were resolved too. I posted the following in another post: "We Weggies some times become reluctant to post good news some times cause it seems to often result in the Weg dog waking up and attacking with a vengeance to let us know it is still around. But maybe I can sneak this one by.

Early this year I had flu which I thought was bronchitis since I was coughing to point of being very exhausted. I also had sinus infections as evidenced by gunk in sinus rinses. My inflammation markers increased to abnormal and I had lots of blood clots and fresh blood in my sinus rinses. I got antibiotics twice and Tamiflu for the flu symptoms. The meds seemed to help some but I was rinsing several times a day to try keep nasal passages open enough to breathe OK and often added baby shampoo and dash of peroxide into the rinses along with using two or three times normal saline packets. I used the squeeze bottle at first but then later started using my Grossan HydroPulse more. I finally saw an ENT who prescribed some Bactroban (Mupirocin) antibiotic solution to use as a rinse too but they took so long to mail it to me that my sinuses and nasal rinse seemed cleared up by time it arrived so it was never used.

I think it was the frequent rinses and the reduction in my inflammation markers back to normal range that accounted for return to clear nasal rinses. I am back to rinsing only a couple times a day most days and have no blood or trophy buggers (a good ENT term) in my rinses lately. The nasal passages seem open and breathing is easy again. My blood glucose levels also went back to their usual range. Though lately I have had several hypoglycemic episodes (serious lows) that are worrisome and require snacking on several sweets quickly to get blood glucose levels back to normal range. Managing my blood glucose takes a lot more time and effort than Wegs since it requires attention every couple hours.

I did use some extra Fluticasone nasal spray at times but other wise no changes were made to my maintenance meds of 5 mg pred and 175 mg of azathioprine. I expected there might be some med changes or increases but the response was to monitor more closely with increased labs and wait to see if Rituxan would be needed.

When my inflammation markers were elevated it felt like a flare to me since joint pain and fatigue also increased. Arrangements were made to see my Weg expert at Mayo because of concern of maybe having a the start of a serious flare but by the time I saw him things seemed back in a drug induced remission except my ANCA scores had increased from negative to borderline range. The hope is they will return to negative range and these will be checked at my quarterly reviews with my treating doctor or sooner if Weg symptoms increase again. The hope is to remain in a drug induced remission again for a long time but the Weg symptoms have increased each winter along with infections that seem to come some time between Thanksgiving and Valentine Day."

My last scare about Wegs stuff was waking up with a sore inflamed eye a couple weeks ago. At first I got some TobraDex ointment to treat sore spot around the eye as well as the inflammation of eye lid. This helped but I still felt discomfort so had a good exam by an optometrist who dilated and scanned the inside of my eye and found no sign of vaculitis activity inside the eye. I was switched to TobraDex eye drops for use in eye since outside sore spot was resolved. In a few days the pain was so much better I forgot to take my drops a couple times but will continue with them for the week as directed.

A friend asked me how do you manage to handle all these health problems. But what choice do we have. I know I am very grateful that I am able to manage them now on an out patient basis instead of being in an intensive care unit or other helping facility. And it doesn't bother me when people tell me that you sure look good now and remind me of a few years back when I looked ready to depart for good. So lets celebrate today for the Holiday (Happy Easter) it is for many and for all of us still being here to enjoy our life.

[renidrag]

Happy for you, well said.
Dale

[MAGNOLIA]

I certainly am impressed hearing about the courage and resilience of wegeners patients. You certainly are a great source of info and support.I am now struggling, trying to
get off dialysis.The nephrologist is doing tests and I see my rheumy on Tuesday.The prednisone side effects are really overwhelming.I get very anxious and depressed.
I got this disease in 2002, and it has been purgatory.Now I have a bladder infection and the antibiotics are prescribed every other day, so as not to disturb my much improved kidney function. I will certainly celebrate if they get me off dialysis. If not, I am going to do the peritoneal, which you do at home.Cheers to all of you and I wish you all the best.
Magnolia

[mishb]

I hope you get that infection under control soon Magnolia and good luck with your rheumy appointment on Tuesday.
Fingers crossed that you can come off dialysis