new to site. Hello to all from NW FL

[Jaypfei]

Hello everyone, my name is Jolinda. I'm from NW FL and I was diagnosed with limited Wegeners GPA in February 2012. Ears, sinuses and lungs involved. Permenant conductive hearing loss in left ear and 40% hearing loss in right ear. Saddlenose due to flare in October 2012. Initial drug at dx oral cytoxan, prednisone, bactrim. October flare pulmonary doc referred me to rheumatologist and was started on rituxin, prednisone, methotrexate and imuran. Had to discontinue methotrexate due to liver ditress. Off all drugs till I began having severe joint pain. Just finished third infusion of sulmederol today and will start rituxan again this Wednesday. Wish there was a quick cure for this disease, but guess it will be slow going till my rheummy can get it right. I've only managed 3 to 4 months before the disease comes back. Think my doc takes me off the drugs too soon. Any thoughts?
Thanks for all the posts, I have learned so much from reading them.

[Wegetarian]

Hey Jolinda! Welcome to the forums!


was started on rituxin, prednisone, methotrexate and imuran.

Did you take those all at the same time?

[NikkiNicole]

Welcome to our family!
Unfortunately, I'm a newbie to the Weggie world so I don't know much about how long people should be on the medications. I started MTX three weeks ago and my doctor told me that I would be on it for two years at a minimum so ... I know there's that for me. I am starting a prednisone taper schedule here in a little while to see what happens as my inflammatory markers are finally a nice low number.
Good luck with everything. You'll love this website. I really do.

[woz]

Hi Jolinda I was on the exact same drugs as you to start with (for three months), then changed to azathiaprine 100mg, bactrim three days per week, and pred. I am now down to 4mg pred, In the next 3 weeks I hope to be off pred, and as soon as I am off pred, I can drop the bactrim. My doctor then wants me to take azathiaprine for another 18 months, to be on the safe side. Plenty of good reading on this site, and helpful advice. All the best.

Regards woz.......

[mishb]

Hi Jolinda

Wow, all of that certainly doesn't sound too "limited" to me. :crying:

I have been on MTX for about 2 1/2 years and all of my specialists agree, to avoid a flare, I will probably be on a low dose of MTX for the rest of my life.
Currently I am on 20mg MTX, 200mg Plaquenil and 3mg pred.

Welcome to the forum and we hope to hear more from you as your journey continues.

[Jaypfei]

I was on 50 mg prednisone, then started the rituxan the last three weeks in Dec 2012. The fourth dose was the first week in Jan 2013. Then I began methotrexate injection once a week. Was supposed to taper off prednisone and be replaced with Imuran. But yes, I was taking both at once until the liver distress in March/April, and the doctor took me off methotrexate and Imuran altogether. I continued the prednisone, tapering off completely by the end of May. Then the joint pain started.

[annekat]

Welcome, Jolinda. Glad to have you here, given that you have Wegs. Your case sounds a lot like mine, and I started on the same drugs as you did. I've transitioned to methotrexate instead of Cytoxan, and am still on prednisone and Bactrim. I'm doing quite well but did have one minor flare from being on too low a dose of MTX. I'm doing pretty well now but feel that any extra stress will bring it all back, and I can feel it happening at times. This is common, I think. For me, it is very predictable, but others may not find that to be so. I'm 61 years old and feel I will probably need to be on meds for the rest of my life, but by doing so will be able to remain active and have some good years.

Anyway, jump right in and say and ask anything you want, read others' experiences, search the archives, take full advantage of this forum. I know there are others here in Florida, and you might check the Weggie Map link at top of page and see who is on it and maybe add yourself to it. You can also send private messages to anyone you want.

[drz]

Some people can handle going off the drugs for treating Wegs so it is worth trying, especially if there was reason to believe you might have toxic reaction to the drugs like elevated liver enzymes. Often it doesn't work so people go back on the drugs and some are kept on treatment regime for long term maintenance when the risk of flare seems high and potentially very dangerous. Like shoes, one size does not fit all so it a personal decision for you and your medical team after you weigh the risks of the alternatives.

Jolinda, have they discussed the possibility of restoring some hearing with a BAHA (old term) operation. It did wonders for me and Phil loves his cochlear implant which is another option if a BAHA won't work for you. Welcome to our group. Sorry the admission price is so high.

[Alysia]

Hi Jolinda,
welcome to the forum. now that you are here, you are in good hands.
this place helps me so much, and I am so grateful to all the friends here.
I could'n survive without this forum.
I hope you will soon feel much better.

[drz]

Hi Jolinda,
welcome to the forum. now that you are here, you are in good hands.
this place helps me so much, and I am so grateful to all the friends here.
I could'n survive without this forum.
I hope you will soon feel much better.

We are glad you found way here too since you have Wegs. We wish no one needed such a site but since we do, we are glad it exists for our benefit and are thankful for the helpful support and info we get here.

[Dirty Don]

Welcome Jolinda...you have all the credentials for this club, unfortunately! Please continue to ask and share on here as there is a wealth of experience and knowledge to be had on here from some pretty nice people! Yes, your docs have screwed up on the drugs...first of all, if those drugs were your immediate prescriptions right out of dx that was probably waaay too much. The general protocol is pred and mtx first...if they are not strong enough, then on to ctx, immuran, then finally, rtx. Pred is given the entire time while on one of the WG attackers. RTX is the last resort for most Weggies as it is the strongest drug at this time. All things considered, you most likely should have been started on fairly high dose of pred and the maintenance level of mtx. Then the doc should adjust as you adjust to the improvements along the way. If you're in NW Fl, can you get to Mayo in Jacksonville? If not, you may consult with them thru your current doc or just go there. Best of luck.

[Jaypfei]

Hey drz,

Yes, I've had the BAHA surgery. I had it June 11, 2013. Sept 11 will be 12 weeks, but the earliest I could get in to the
Audiologist to have it fitted and programmed is Sept. 23. Looking forward to not have to wear this headband version.