Eight years later

[Jaha]

It has been 8 years today, since I had a lung resection. It was an attempt to try to find an answer for all the cavitated masses in both lungs. I had been very sick for about six months or more, with high fevers, couching, hearing loss, rashes and headaches. The local hospital dx'd me with pneumonia before the surgery and didn't know what it was afterwards either. I had to be admitted to the hospital several times after that for the same symptoms. A friend of mines Aunt had been dx'd with Wegeners, and she suggested that I go to CC, to be assessed. I ended up self referring to Cleveland Clinic, after 2-3 months of not getting any better. I got an appt in July and they sent for my biopsies and reviewed new Ct scans. They called me in late August to tell me that I was to start treatment for Wegeners. I was so sick by then, that it did even register what was going on.
It has been a long journey, with other health issues popping up. I have been dx'd with Wegs in my lungs, sinuses, and brain. I also have Small Fiber Neuropathy from Wegs. Last year, I had to have malignant Neuroendocrine tumors removed from my colon. I still have a lot of stomach problems and am addressing them by eating better.
I have been on all the treatments for Wegs and now just take Rituxan every six months, Bactrium MWF and preds everyday. I am down to 6 pills a day from 24 when I started. I have to hold on tight at times and just do things afraid.
I feel truly blessed to have made it through those rough times. I am so grateful to have all the friends, support and information from the people in this forum. Thank you all, things do get better!!

[vdub]

How are you doing now? And, how to you get along with just one lung?

[Jaha]

Just a update on my Rtx infusion on 4/29. I met a fellow Weggie before the infusion, which is always great.
I'm still trying to get my strength back and feel a little battered still. I didn't have any reactions this time,woohoo! I did the 1000mg, with saline, 135mgs Iv solmedral, If benadryl and a few tylenol. I will have another in six to seven months, Oh course still on preds and Batrium. My SFN seems to be acting up right now also. It will get better!
Vdub, I had a resection, not a lobe ctomy, so I still have most of my left lung, thanks for askng. I hope all is well with all that had there infusions recently!��

[John S]

It was n nice meeting you at the infusion center. Is this a case of "Misery loves company"? Na. I have had pleasant experiences will all of my RTX treatments. After the treatment I went to the new Avengers movie. at the Valley View theatre. (Nice seats).
I didn't sleep well that night but I've gradually been feeling better. I think part of it is the knowledge that I will feel better lifting my spirits.

[Jaha]

I haven't posted anything for a while, so here we go with an update.
I am due to have an another RTX infusion 10/24 and boy could I use it. I'm having too many multiple problems and really would like to feel better before long.
I have been having a lot of stomach and intestinal problems, we are trying to find the real reason for it. I had to go to the ER twice over a 2 mo period for pain and possible bowel blockage. Both Docs at 2 different hospitals thought it was related to Wegs and 1 gave me 125mgs of Solmedral and a gastric cocktail. I also went to a new Gastroenterologist, since I couldn't get in with mine until in Nov., he thought I needed to see my rheumy. He thoughts were that my Wegs is not well controlled right now. I saw my Rheumy last month and she didn't think it was at all related to Wegs. She was pretty mad at the ER doc for giving me preds. So here we go round and round.
I am headed to my Neurologist tomorrow to have an other EMG. I have been having a lot of nerve pain, from Small Fiber Neuropathy and it could be the problem with digestive system.
I also, still have over 20 polyps in my stomach and had neuroendocrine tumors removed from colon that were malignant, last fall. I am being tested for Carcinoid syndrome, which could also be the problem. I had to up my preds by 5 mgs, this last week because of having trouble walking, pain in joints, ears plugging up, headaches and nerve pain.
I sometimes feel like none of them (doctors) want to be the ones to give me some answers or relief. My rheumy probably has me on her list of remission and isn't listening very well, about the possible smoldering of the Wegs.
Sorry for the long update, life goes on, Thank God!
This disease just keeps on giving!

[Pete]

I feel for you, Jana. Hope the rtx does the trick!

[Masha]

Oh Jana,
You sure have had more than your share of problems. It all becomes overwhelming after a while.
I am going to be thinking positive thoughts for your upcoming infusion.
Never be sorry about a long update. We are here to listen and share. I believe this is one site where we understand the confusion of this disease.
Masha

[John S]

I'm saddened to hear about your latest bout of symptoms. I'll be there on the 23rd for an infusion myself but have been comparatively symptom free.

[Jaha]

Thank you all for your kind words. John I will miss you by 1 day. I am wishing you all the best with your infusion!

[Rose]

Hi Jana

I am really sorry to hear about your problems. Why does your Rheumy think you are in remission? I Know that intestinal flares caused by Wegs often do not show with the usual monitoring. In 2015 I suffered for months with terrible intestinal problems I visited my Rheumy countless times only to be told I was in remission and it wasn't Wegs. I was admitted to hospital for 5 days under a Gastroenterologist for tests and nothing was found even though I was having diarrhoea 30+ times a day. I was discharged from hospital on powerful (and very expensive) probiotics. I was desperate and I was convinced I was having a flare in my bowel. I eventually persuaded my Rheumatologist to treat me for a flare even although blood work showed no signs of flaring. He prescribed Solumedrol 500mgs IV for 3 days. Within hours of the first infusion all my intestinal symptoms vanished. An ANCA test was done a day or so before the IV Solumedrol The result (which I only received a few weeks following the IV Solumedrol ) was pANCA 1:320 and PR3 positive

Did the 125mgs Pred help at the time? I hope the RTX infusion in October eliminates some, if not all, of your recent symptoms

Rose

[Jaha]

Thank you Rose, for sharing your experience with me. It is sometimes so hard to convince a Rheumy that maybe it is a flare. I hope you don't still have the intestinal problems and are doing well now.
I'm having an Endoscopy on the 8th to check on the polyps in my stomach. He will also be stretching my esophagus and cking for any other crap.
I went to the neurologist last week and had an EMG again, to ck for other nerve damage and the weakness on my lt. side. He now is sending me for a cervical and spine MRI.He thinks that I have a pinched nerve. It never seizes to amaze me, this unpredictable, opportune disease.
All though I am getting old too!😂😂😂

[Alysia]

Sorry you are strugling with multiple issues, Jana. Sounds like WG activity... as for your bowels, I suggest you to ask for calprotectin test. If it comes back positive, its a relatively good indication for some kind of IBD. Can be wg inflamation in the colon, or Crohn's or Colitis. In the past I was told by GI dr. That I have WG in the colon but at the end of 2016 the diarrhea became so bad that I was diagnosed at April 2017 with collagenous colitis. The fact the we have WG doesn't rule out having other diseases as well...

Sending you prayers. Please update us.
(Btw getting my rtx on Oct 18 and Nov 1)

[vdub]

The fact the we have WG doesn't rule out having other diseases as well...
That is so absolutely true! On top of wegs, I have Granulomatous Hypophysitis, Unilateral Diaphragmatic Paralysis, Bradycardia, and Fibromyalgia. Those are the ones that are proven as much as they can be "proven". It is also suspected that I have Psoriatic Arthritis. All are a pain in the butt. It takes 18 drugs and 3 injections to keep things in-check, as much as they can be "in-check". Fatigue either from the disease or the drugs is a constant issue. "Great days", even "good days" are far to rare. You can read about all my failures by clicking on "my story" below in my signature block.

Oh yeah! My parathyroid failed about 7 months ago. So, I'll update "my story".

Cheers, all!!

[Alysia]

That is so absolutely true! On top of wegs, I have Granulomatous Hypophysitis, Unilateral Diaphragmatic Paralysis, Bradycardia, and Fibromyalgia. Those are the ones that are proven as much as they can be "proven". It is also suspected that I have Psoriatic Arthritis. All are a pain in the butt. It takes 18 drugs and 3 injections to keep things in-check, as much as they can be "in-check". Fatigue either from the disease or the drugs is a constant issue. "Great days", even "good days" are far to rare. You can read about all my failures by clicking on "my story" below in my signature block.

Oh yeah! My parathyroid failed about 7 months ago. So, I'll update "my story".

Cheers, all!!

:scared:

Cheers, vdub ❤ what a list ! You "collect" the most rare stuff... Thank you for inspiring us with your good spirits ❤

[Jaha]

Time for an update, oh boy here we go! Well I hope most of you are doing better these days. I notice that there is not a lot of activity on here from some of us oldies. I hope this is a good sign for good health or as good as it gets.
I made it through yet another Rtx infusion without any reactions. Those nurses at CC know me quite well by now and have it down to a science now.
I now have yet another gift from Wegs, my back and neck are crumbling from use of steriods. I still am on 15mgs steroids per day The Neurologist called me and told me he was referring me to a Neurosurgeon. The ligaments that hold the nerve roots are hardening I have spurs and bulging discs and of course degeneration, arthritis and all the old people stuff. I have had to use a cane at times to be able to walk. I guess my nerve root is being pinched in several places. In other words I have various areas of stenosis in the neck and spine.
I then received a call from the Neurosurgeon on a Sunday afternoon, telling me that he probably would not do surgery on me because of all my complications. He is sending me for physical therapy. I have been trying to walk everyday on the treadmill and have lost around 40lbs., I'm sure that helps, but it is still concerning when you can't walk at times, because your legs want to give out. I will try to loss more weight and strengthen my stomach musles. We will see how this goes.
I have also had some good news in between all this. I had an Endoscopy and the polyps in my stomach have reduced greatly, due to stopping the stomach meds. in April. I have also been declared cancer free from my onocologist.
I have good news mixed in with the bad and will deal with it as it comes. I have a lot of nerve damage and pain, but I'm still here!

[John S]

Time for an update, oh boy here we go! Well I hope most of you are doing better these days. I notice that there is not a lot of activity on here from some of us oldies. I hope this is a good sign for good health or as good as it gets.
I made it through yet another Rtx infusion without any reactions. Those nurses at CC know me quite well by now and have it down to a science now.
I now have yet another gift from Wegs, my back and neck are crumbling from use of steriods. I still am on 15mgs steroids per day The Neurologist called me and told me he was referring me to a Neurosurgeon. The ligaments that hold the nerve roots are hardening I have spurs and bulging discs and of course degeneration, arthritis and all the old people stuff. I have had to use a cane at times to be able to walk. I guess my nerve root is being pinched in several places. In other words I have various areas of stenosis in the neck and spine.
I then received a call from the Neurosurgeon on a Sunday afternoon, telling me that he probably would not do surgery on me because of all my complications. He is sending me for physical therapy. I have been trying to walk everyday on the treadmill and have lost around 40lbs., I'm sure that helps, but it is still concerning when you can't walk at times, because your legs want to give out. I will try to loss more weight and strengthen my stomach musles. We will see how this goes.
I have also had some good news in between all this. I had an Endoscopy and the polyps in my stomach have reduced greatly, due to stopping the stomach meds. in April. I have also been declared cancer free from my onocologist.
I have good news mixed in with the bad and will deal with it as it comes. I have a lot of nerve damage and pain, but I'm still here!

Try a stationary bike. Less wear and tear than a treadmill.

[vdub]

I hope this is a good sign for good health or as good as it gets.
I fall into the "good as it gets" category. I'm still quite fatigued, ache a lot, and have mild stenosis in my back. Like you, the neurosurgeon sent me to physical therapy that I pretty much knew wouldn't do much good and it didn't.

Overall, I'm doing ok. I'm able to walk around for short spurts and we have been able to get away from the snow for part of the winter. No complaints!