Long time Survivor, and now it's coming back

[Bill Towers]

Hi All!

My name is Bill and I am new to this site, however, I have been living with Wegeners for ove 7 years now. So I will give just s short run down here.

I was first diagnosed with Wegeners in August 2008 after a long stint in hospital while the doctors performed just about every test known to man. I live in Maryborough QLD and we are 300 kms from the nearest specialist that has any knowledge of Wegeners, so I was transported by the flying doctor within hours of the diagnosed, to Brisbane and the Wesley Hospital.

After being there for just a short time a specialist came into the ward and told me all the details, including the fact that if it hadn't been discovered I would have been dead in 6 months. Treatment was started immediately with intravenous chemo and other drugs that I can't remember now. The disease had got into my kidneys and liver fairly well before it was discovered and with treatment I have now got a stable liver but my kidney function is only 23%. The Wegeners went into remission with consistent very low figures for the last 3 years, however, it is now starting to slowly increase and I have been booked into hospital next weekend for tests and treatment, presumably going back onto the stronger pills rather that just those I have been taking for maintenance of the disease for the last few years.

As the result of the disease I have gone from a very healthy male to an overweight person with diabetes type 2 and chronic renal problems that will eventually require dialysis. Not a very bright outlook at this stage.

I will post more as treatment proceeds in the following weeks.

Bill

[Dirty Don]

Welcome Bill...glad you've found us & most assuredly will get responses on your newest stage. I just went off drugs this summer after 4 years, am feeling fine but tentative. Statistically, once one gets off the drugs, we fall into the 40% category of a relapse within 2-4 years or so...some even say 10 years. According to my docs, if that does happen I won't go back on the maintenance drugs of methotrexate & pred...they will simply skip me up to Rituxin, the heavy hitter. I spose that too has something to do with statistics, but nevertheless it's next IF I don't get thru this next window. So, I hope your docs are aware of those stats and probabilities & they treat as such. Best to you.

[Green Grass & High Tides]

Sorry the wegs is gaining. Keep the faith. When i have a rough day i try to remember that any day above ground is a good day. Maybe Rituxan will be the answer?

Sent from my SM-G925V using Tapatalk

[annekat]

Welcome to the forum, Bill, and I'm glad you are here, as you will find an uncountable number of different personal struggles with Wegs, and we can learn from them all. I'm sorry your Wegs is coming back, and hope as well that you can easily be approved for RTX, since it may be the only thing left that makes sense. There's a wealth of knowledge and experience here and a ton of support for each other. I hope to hear more soon about how things go for you. Also, there are quite a few Aussies in the group, including our fearless leader, Andrew, and no doubt you can hook up with some of them. All the best to you.

[woz]

Hi Bill, good to hear from you, not good news about the flare, hopefully you can get back on track soon, all the best.

Regards Woz...

[Birdie]

Not a very bright outlook at this stage.

Hey Bill, welcome to the forum.

Living with it for seven years you gotta know not to assume the worst. Just look at how many here have been in dire shape on multiple occasions, including me. The last six months have been difficult, yet for no obvious reason I'm seeing major improvement in the last few weeks.

Everybody gets something slightly different from this group. For me it's the collective knowledge. Seems you can't ask a question here without getting a number of quality replies from those who have experienced the issue. Somebody here knows everything about renal issues, and will chime in with suggestions based on their experience.

Gary

[annekat]

The last six months have been difficult, yet for no obvious reason I'm seeing major improvement in the last few weeks.


Gary

Maybe your recent improvement can be attributed, at least partly, to having joined the forum! The psychological and emotional boost of sharing this with others, not going it alone, should have some positive effect on recovery, it seems to me. In any case, I'm happy to hear you calling it major improvement.

[Pugdog]

Hi bill
regarding your failing kidneys-start now looking for possible candidates for kidney donation for you. I have had 2 transplants, the second one I had before having to go on dialysis. Find a hospital that has a transplant program and get registered and start their protocols. The more you get done earlier the better off you will be. I had my second one at Johns Hopkins in Baltimore. My wife wanted to be tested and started the process immediately. My creatinine was over 7 , today it is 1.3. My point is, you can beat the renal failure, but you have to push yourself and be proactive, don't sit back and wait. By the way , I highly recommend Johns Hopkins, they even have an international program, great surgeons and the follow up care has been amazing. They also a have program for transplants where the donor and receipant aren't compatible and they still do surgery at a high success rate. Hang in there!!

[Hal]

This is easier said than done, but keep exercising to offset the weight loss, which I assume is from the Prednisone? I gained 40lbs but am currently -50lbs from what was my maximum weight due to Prednisone, pain and fatigue.

Good luck and never give up! Attitude is quite important.

[mishb]

Hi Bill and welcome to the forum, from another fellow Aussie.

Bill if you have facebook, we have an Australian and New Zealand Group with over 200 members.
We have about 40 members from QLD, so someone may be able to point you in the right direction for closer WG care.

I'm sorry that it came back and that you are not feeling the best, but the outlook can still be awesome, once things get under control again.