New to the very special Club we all call Wegener's

[iks5003]

Hello everybody,

I have been reading this forum and all the different posts for about a month now, since I have been in the hospital and the doctors were throwing around the possibility of me having this disease. I was finally diagnosed by one of the best doctors out there on April 3. After going through months of what felt like torture, getting the diagnosis was a relief but almost surreal. I am an occupational therapist by profession (which I just got my degree in Aug. and have only been working for 2 months before having to take medical leave) and I couldn't believe I was no longer the caregiver, I was now the patient. Being a 25 y.o. female who was looking forward to running the Broad Street run for the second time ( I live in Philadelphia and love my city!), I quickly realized that won't be happening for a very long time again, if ever.

This disease is so hard to explain to others around you, and even myself. There are so many different symptoms and they can just pop up out of nowhere. Being on here has helped me see that I am not alone, and what I am experiencing is very similar to what you call have experienced.

I am currently on 60 mg of prednisone, as well as bactrum, and using my nebulizer a lot. I will be getting my third infusion of rituxan tomorrow. I do feel much better than about 2 months ago, but I still have so much trouble breathing and just getting up and down the steps in my house. I am thankful that my sinuses don't bother me the way they use to, but I just can't help but be sad that I'm not living my 25 y.o. independent life in the city anymore. I know everyone says this is going to take time, but it's been hard.

I look forward to posting more on the site, and giving and getting advice as time goes on. Thanks again to all who contribute!

[annekat]

Welcome, iks5003! I'm glad you finally got your dx, so now you know for sure, and that you decided to start posting on the forum. We are all ages on here and you being in your twenties have special concerns as to how this will affect your life. As you know, we have Carrie, Rebekah, and others who are in the same age ballpark. Good to know your symptoms seem to be improving. I do think it quite possible that you could do the Broad Street Run again in the future. We have a woman on the forum who has climbed Mt. Everest and done the Iditarod sled dog race since her dx. And others who play golf, ski, and engage in other sports. This forum is indispensable to me and I'm sure to many others, and I don't know what we'd do without it. I look forward to hearing more from you soon!

[Psyborg]

Welcome to our club. Glad to have you here, but sorry you had to join.

[Dirty Don]

Welcome iks5003, tis THE place to be if you're gonna have to endure this disease. Sounds as if your docs have a handle, now you just have to have the fortitude, patience, and attitude to make it happen for yourself. We all look forward to your posts and updates and want to help as much as we can along the way...this is a lonely disease for some and this forum has taken some of that loneliness away...best to you!

[Jaha]

Glad you joined us,sorry you have to be part of us because of the wegs. It takes a long time to except all the changes we have to make, as my dr. said to me after she gave me my tx plans,"baby steps" and I don't think it really sunk in at that time. There are alot of active wegs people on here after their remissions came. I wish you all the best for a speedy remission.

[pberggren1]

You certainly picked a good city to get sick in. Philly has a nice new Vasculitis Clinic headed by one of the top Wegs docs on the planet.

[Alysia]

Hi
welcome. the beginning is the hardest time. then, with treatment and time, things are getting better. I believe that you will be able to do sport, go back to work do whatever you want to.

[HopeinTN]

Welcome! Yes, it will take time and just when you think you can't stand it, you'll be back on your feet. I too felt this way and I still feel lonely and scared every once in a while. I have a better chance of dying from many other things than I do from Weg's. Or at least that's how I look at it.

On the days you can't stand it, get on here and complain, cry, cuss...and then you will feel better. That's why we are here. I was diagnosed Oct 2011 and started with CTX, Pred and Bactrim (still on it until at least June). I was 39 at dx and pretty bummed I may never get to have children of my own because of this, but, I'm alive and kicking. I can't dwell on what I wanted for myself, but I can do something about what my life will be defined by and it won't be this dang disease.

Good luck!

[mishb]

Hi iks5003 and welcome to this little group that we like to call Weggies.

Wow, Phil agrees that you have the best WG doctors.........that is wonderful news.

I'm sure with the help of these doctors and with the correct treatment you will be back running in no time........well, jogging maybe.

I wish you all the best with the infusions and, as you say, look forward to hearing more from you.

[drz]

Welcome to our club. Glad to have you here, but sorry you had to join.

Welcome to our forum. Also sorry you need to join us but glad we are here to help each other.

[HopeinTN]

Oh, and just to clarify, just because you have Weg's doesn't mean you can't have children. You are young and while you can't have a child while on treatment, you can afterwards! I am not in the birthing realm at 41 (still on CTX) and it came upon right at the time I was seriously thinking it was time to be a mom.

Also, you found out earlier and that is the key with thsi disease. There's something to hang your hat on!

Anyway, good luck and don't hang those running shoes up just yet!

[vdub]

Welcome to club... I'm sorry the membership requirements are so high. :-)

[drz]

Welcome to club... I'm sorry the membership requirements are so high. :-)

They are high but it could be higher if we were a forum for double amputees and the cost was an arm and a leg.:biggrin1:

[Pete]

Cute, drz, really cute!

[Barbara N]

You are right and you are welcome to this very elite group of people on this forum. There are some fantastic people here and all of them very caring. If you are worried about a procedure or symptoms there will most likely be someone who has been through it and is still her to tell about it. You get so much more than you can from a doctor because these people have all been where you are at one point in time. Sorry that the requirements are so high to get in but you won't find a better group around. Keep running, it doesn't matter how fast or how far just run. You have to do things that make you happy and keep that positive energy flowing. Welcome to the gang, Barbara

[Rini]

it will be ruff, better, AWFUL and then good.....but as you seem to have survived the ruff physical test you will probably get a nice break before the mental one. All in all everyone is hear to support you and we are very happy to have you join the family <3

[Football lover]

How did you do on the rituxan? They have prescribed it for me since almost everything else hasnt worked. I am so allergic to everything and then I get this disease on top of having RA. Did you do ok with the infusion therapy? Side effects? Thanks for your input. Is it working? Does your insurance pay for it?

Football lover in Alaska

[Dirty Don]

Welcome Football lover...haven't seen you on till now. Good that you're asking questions already...someone with true experience will have answers for you soon enough! Perhaps you could start your own new thread so people will notice it quickly...sometimes it takes time if one sticks a question in the middle of another thread. Rtx is the last resort in WG...it's powerful and has the rep for doing the job with minimal side effects. It can take around 6-8 weeks to be effective. Best hope your insurance pays for it as it runs somewhere in the 10 to 15K range I've been told depending on where you are. Government funded medicine cuts the cost, but also limits the intakes. The side effects are typical of most drugs: some nausea, lethargy, etc. most of which can be avoided or limited with additional drugs, prescribed or OTC. Those who are on rtx seem to be doing well...have an acquaintance who was dx as pretty serious case of WG, docs went straight to rtx, he's doing OK now, well, better...he's a dink and doesn't follow doc's orders very well! Anyway, best to you...keep asking away and share what you learn!

[Football lover]

Thanks for the reply. I was dx in December and having a rough time with the eye pain. It is unbearable at times. They have had me on 80mg of prednisone, shots in my eyes, temple biopsy, several other drugs, I cant seem to get the pain manageable. Some days are good, but others are horriffic. I am on Methotrexate, 10 mg prednisone, humera for r/a, and ibp. 800mg. I am in Alaska and the treatment here is very limited. I flew to Portland to see a specialist, he confirmed everything and sent me home.

My Rhumetologist wants to start me on the Rutaxin for four weeks one treatment a week. I cant find anyone local who has this disease and I feel so isolated. Thank you for your help.

Anita

[pberggren1]

Hi Anita,

Where in Alaska are you? I would think that Anchorage would have a few Weggies around, probably 60 or so. Ask your doc there about it.

[Football lover]

I have asked, and was told something about the hippa laws, and then I offered him to give out my info, and I have heard nothing.

[pberggren1]

My doc told me he diagnosed 3 others in my area and told them they are free to contact me. I have not heard from them yet either.