Hello from Kentucky!

[Hannah]

Hi,
My name is Hannah, and I'm 26 (until Saturday!). I live in western Kentucky. I've been lurking awhile. This forum has helped me count my blessings. I was diagnosed with Wegener's back in March, which was found due to inflammation in my right eye. I also have gross crusties. I had inflammation in my left eye back around 2005 and saw a rheumy, got put on Mx, and actually had steroids injected into my eye. It wasn't diagnosed as WG then. I had a vasculitis flare in 2011-2012, with red spots all over my legs. I saw another rheumy, and was put back on Mx. The name Wegener's was dropped by a dermatologist removing a bit of skin for analysis, but it wasn't my official diagnosis until this year.

Since November, when my eye flared, I have seen my primary care doctor, an ophthalmologist, a rheumatologist, a nephrologist, an ENT, and a GI doctor. I had a kidney biopsy back in July, which showed scar tissue, but no active kidney issues. I was put on steroids and Mx (pills, then injections) in March, and have since tapered off the Prednisone and cut off the Mx due to high liver enzymes. I'm scheduled to have a liver biopsy and ultrasound to determine the cause of my liver issues, because my GI doctor is not convinced the liver count is due to Mx. I'm not currently receiving treatment for the WG, and I guess I'm just waiting for my next flare. We're currently trying to sort out the liver issues. I'm hoping that I don't flare soon, and that the Mx is not what's taking a toll on my liver, because the alternatives to Mx don't look great!

I appreciate this forum as a place to learn. I consider myself lucky to have a mild form of the disease right now. I'm a teacher, I'm working on my master's, I have a girlfriend and a cat, and my day to day is managed by medication. I get a ridiculous amount of lab work done, but that doesn't bother me. I'm not thrilled about my upcoming biopsy, but it sounds like it'll be much quicker than the kidney biopsy.

Thanks for reading and for the support.

[MaxD]

Hannah, welcome to the forum. You will find a lot of information and well-meant advice here. The one universal piece of advice you will get is to see a doctor who specializes in vasculitis, and specifically GPA (aka Wegeners). You might wish to look at vasculitisfoundation.org website to find one near you. It sounds like you've had a number of issues that may or may not be related, so do consider consulting a doc who is current in his or her knowledge of the disease and treatments. I was lucky to be diagnosed by a young new doctor who was fearless in narrowing down the diagnosis to GPA or a similar disease just on hearing my various symptoms. Sometimes older docs are more cautious/hesistant to diagnose such a rare disease.

Good luck to you!

[annekat]

Welcome, Hannah, and I'm glad you found us. My grandmother spent her first years Casey County, Kentucky before the family picked up and moved to Oregon. Anyway, I hope you find this forum to be as valuable as I have in the 3.5 years since my diagnosis. It is a world class group of people, IMO. I hope to hear more from you.

[morningsunshine]

Welcome, Hannah!

It's nice to see someone my age with a recent diagnosis on the board--I'm 27 now and was 26 when I was diagnosed in May. I didn't have eye involvement initially, but I do now, so I can relate to the ophthalmologist visits.

In terms of the alternatives to MTX, I'm guessing you mean Rituximab and cyclophosphamide? I don't have any experience with cyclophosphamide, but I had four rituximab infusions in May and they seem to have really helped me. I didn't have any side effects from RTX either, just drowsiness from the benadryl they gave me. If you end up flaring and needing RTX, I hope you don't worry about it too much--I've had many more side effects from MTX and prednisone (especially the prednisone). Congrats on being off the pred & MTX right now!

And happy early birthday! Hope you have a great day on Saturday!

[MaxD]

I had the same experience with Rituximab as morningsunshine reports. All the leading experts say that Rituximab has changed the practice of rheumatology. Unlike chemotherapy (cyclophosphamide aka cytoxan), there is no danger of infertility with Rituximab, and docs agree that that itself is a huge benefit. Moreover, Rituximab has been shown to be at least as good a therapy as cytoxan. I had 4 infusions in April/May and will have one infusion soon for maintenance (every 6 months for another year after that).

Hope this helps. Ask your doc about Rituximab - your insurance may cover it as it is the only FDA approved drug for GPA (Wegeners). Good luck!

Oh, and all the best wishes for Your day tomorrow!

[mishb]

Hi Hannah and welcome to the forum.

Good luck with the liver biopsy. I haven't heard of anyone having the liver biopsied but I guess it wouldn't be much different from having the kidneys done.

I had liver issues for a couple of months a year or so back. I am also on MTX.
What we found (by powers of deduction) were that the multi vitamins that I had started taking, were affecting my liver.
I stopped the multi vitamins for a month, had another blood test, and the results were much better.
I have not taken multi vitamins again.

I'm not saying that it will be because of multi vitamins (or something, maybe one thing within the vitamins) that is affecting your liver, but just that it is not always because of MTX.
Just a thought.

All the best for a happy and pain free 27th birthday on Saturday

[Hannah]

Thanks for the responses. Morningsunshine, my ophthalmologist and I have really just shrugged at each other, mostly. He's seen my eye when the steroids were taking care of the inflammation and more recently, when the inflammation has stayed gone.

I guess my biggest concern about Rituximab is having to take time off work to have the infusions. I guess I am taking time off work to have appointments and this biopsy and all, but I guess the idea of getting an infusion when my symptoms have been so mild is a bit much. It feels that way with the biopsy, too. I get that the disease can be serious, but mine hasn't been (yet). That's good to know that there aren't many side effects. I didn't have much with the Mx. The only thing I know about Rituximab is that I think it's the $60,000 infusion my rheumy keeps mentioning as an alternative.

Thanks, Michelle, for sharing your experience. The only OTC stuff I take is an allergy pill, folic acid, and iron. I do have thyroid issues too (the GI doctor said I had an "interesting" history), which can be a reason for elevated liver enzymes, according to my Google search. I'm hoping it's something quick and easy, but at this point, it just feels like they're still guessing.

[annekat]

I've been on MTX for I guess about 2.5 years. No liver problems show up in my blood work, but it needs to be looked at, because everyone is different and you never know. My neighbor with RA was on MTX for 12 years, drank no alcohol that whole time, and had no liver issues until the 12th year, when it started to show up in his blood work. So now he's off it and on something else, but I don't know what. He was supposed to use pred too, at least at first or for some amount of time, but couldn't tolerate it and just didn't use it. I don't know if you go into remission with RA. Maybe someone here who has it can answer that.

[morningsunshine]

Thanks for the responses. Morningsunshine, my ophthalmologist and I have really just shrugged at each other, mostly. He's seen my eye when the steroids were taking care of the inflammation and more recently, when the inflammation has stayed gone.
.

Ha, this is such a good description of so many of my appointments. I've been getting excellent treatment (and it seems to be working!), but this disease has so many mysteries to it.

[Jaha]

Hannah,
Welcome to the forum, there are some very brilliant members here, with lots of knowledge. Best wishes to you on your procedure. Hope that every is well with you in the near future.

[bdawg212]

lol Love the shrugging description. My appointments consist of my doctor looking at my chart, heavily sighing, looking at me, heavily sighing, dropping his head into his hands as he reads my test results, more heavy sighs...sometimes this stuff can be hard on our docs, too!!

[Ladyleeza77]

Iam new and my son who is now 11 was diagnoised with WG December 2013, we think from ringworm medication. He had a mass removed from his lung, which was accidently found. He was on predisone for 6 months now on methtraxate shot once a week. Hes been have UTI symptoms before he was diagnoised, and coming up negative for a UTI. He has been to a nephrologist and had urine tests done and all they can come up with is his urine is consentrated. I dong believe that, does anyone had similiar situations or think this is inflammation flare ups?? Im still reading and new with this and Im worried...Any suggestions or what i can try or think of to get hkm checked for...anyone else have experience with this medication..or kids with WG??? Please anyone with info thanks!!

[annekat]

Iam new and my son who is now 11 was diagnoised with WG December 2013, we think from ringworm medication. He had a mass removed from his lung, which was accidently found. He was on predisone for 6 months now on methtraxate shot once a week. Hes been have UTI symptoms before he was diagnoised, and coming up negative for a UTI. He has been to a nephrologist and had urine tests done and all they can come up with is his urine is consentrated. I dong believe that, does anyone had similiar situations or think this is inflammation flare ups?? Im still reading and new with this and Im worried...Any suggestions or what i can try or think of to get hkm checked for...anyone else have experience with this medication..or kids with WG??? Please anyone with info thanks!! Hi, LadyLeeza, and welcome to the forum. I'm sorry your young son has WG, but you have come to the right place. Yes, there have been parents of kids with WG on here, and many of us have used methotrexate. I think you might want to start your own thread under New Member Introductions, because more people might notice it that way. Not everyone reads every post, but most of us read the posts from new members. There is also a lot of info you can search in the archives, but I think current replies are the best, so you get some direct support from the great people here. So, go to New Member Introductions at the top of this page (since that's the topic this thread is on), or from the main Forum page, and once there, click Post New Thread. We are a caring and sharing group, and you will get some responses! I personally don't know much about urine and kidney stuff, but others do. Good luck, and wishing the best recovery for your son.

[Ladyleeza77]

Thank you so much!

[Jaypfei]

Hey Hannah

Welcome to the forum. Can certainly relate to the liver issues. I'm one of the unfortunate few that can not tolerate methotrexate or Imuran. Both cause my liver enzymes to go through the roof. I currently take 2000 mg of Cellcept a day. Tolerating it well and thankfully no liver issues. Rituxan is being reserved as a (big gun) drug for me.
I probably should amend this. I've had Rituxan before. A total of three different times. The last treatment being the one that probably induced remission and Cellcept being my maintanence drug. Because I'm limited in the drugs that I can take, Rituxan is the last resort in case of major flare/relapse.

[Ladyleeza77]

I heard Rituxan was really bad side effects...hope all goes well with you...good luck!!

[Pete]

I heard Rituxan was really bad side effects...hope all goes well with you...good luck!!

Side effects listed can be severe and often overstated to satisfy the lawyers. Many of us have taken rituxin with minimal or no problems.

[Ladyleeza77]

Thats good to hear..

[whatthewhat]

Posters with weggie kids can always pm me too. Sometimes it's days before I scan the forum. :thumbup:

[whatthewhat]

Hey Hannah, welcome and happy birthday. I would second what folks have said about making sure you have an experienced doc - the name of the game is staying ahead of the game! This is a wicked disease that can move awfully quickly & destructively, and unpredictably. Also, about Rituxan (Rituximab) - there is payment help available from the company itself, which may help you. The side effects sound scary, but Rtx has helped my daughter (now 16) a lot. Best wishes! Wtw