First post - Hi from California!

[Melly]

Hey Debra! I've been med free since December. No maintenance meds at this point and it feels great. I know flares are common for us, so it has been kind of a source of anxiety for me. I never had a flare when I was on meds. I'm hoping I'll follow a similar course now that I'm off of them. At the very least, I know that it'll never get as bad as it was. I've been living with this for 7 years now, I know what to look for. I know to call my doc immediately if anything even remotely resembling WG starts to pop up.

Hi Anne, thanks for the welcome. I hope that some of my experiences are able to maybe help someone out there. I'm looking forward to learning new things from all of you here! It does feel good to connect with other people. The only other WG "survivor" that I've kept in contact with is my Italian friend Andy. We're around the same age and were diagnosed at around the same time. We kind of virtually went through our treatment together, and I wouldn't have kept my sanity without him. Well "sanity" maybe isn't the right word. Who can keep sane on steroids, right? But I'll try to badger him into popping over here when we Skype next, he's absolutely amazing. I know he wouldn't mind me plugging him, but he actually composed a song for the VF to help raise awareness. All the proceeds go to the Vasculitis Foundation for research! Andrea Pittini ? Life, Vasculitis Awareness Song

And aww, thank you for the welcome Cindy! Don't get me wrong, when I was first diagnosed I sat around and felt sorry for myself for a good bit of time. I think it's a natural reaction to finding out that you've been sentenced with this disease for life. I honestly couldn't tell you how it happened, but eventually my thinking shifted and I decided to treat this as a positive thing. Something that will make me strong, compassionate, and driven to live my life whatever way makes me the happiest. I hope that every patient with WG is able to find that someday.

[Alysia]

welcome Melly
you bring with you fresh breeze, nice to have you around.
I was also working in hospital in my first years (mental hospital, as psychologist) and I was getting sick every couple of days so after about 2 years of being sick all the time with nasty viruses plus trying to handle the WG plus trying to work, I quit and I am now working in my private office.
you are lucky not to catch anything. prob the hygiene in your hospital is much better then it is here...
Arava is a med that my doc also wanted to give me, but I was already too tired from wg-deterioration without imporvement by mtx, so I said NO, and asked for rtx. which is a miraculous med. did it helped you ?
I also felt like guinea pig with my doc, who even apologize latley, because I developed saddle nose, as a result of not getting the right treatment too many years.
speaking about sanity, is exactly what I feel: being in this forum and having my awesome weggies friends help me to remain sane. and alive
take care and continue to write

[renidrag]

Hello and congratulations on remission and most important, drug free. A hand shake to you my friend from another drug free survivor. Quite a bit older than you and WG left me with a few problems however every day is a gift with different challenges. So happy you can get on with your life.
Dale

[mishb]

Hi Mel and welcome.

So glad to see you here, what kept you

A veteran Weggie at such a young age - I also, am so glad that you are now able to get on with your life.

Your story will help give strength and encouragement to those who are newly diagnosed.

[BookNut]

Melly, You certainly have come to the right place. These folks are wonderful and will soon become your friends.

My signature says "honorary Weggie" because a second and then a third doctor ruled out Wegeners. However, i have chronic sinus and respiratory problems that have landed me in the hospital on massive does of prednisone. I find lots of support, friendship and practical advice here.

Your sinus issues sound very similar to mine. I am currently the best I have been in three years. I was on a prednisone taper 4 times from September through early Feb, and twice have nearly been hospitalized with breathing issues brought on by the sinus problems.

Mike G gave me a suggestion that has turned my life around. He suggested that I administer my inhaled steroid (commonly administered to the lungs via nebulizer) via my NeilMed nasal rinse instead. I have experimented a little...but this works for me: I use the 16 oz NeilMed sinus rinse bottle to clear out my nasal passages first. Then I mix the vial of budesonide with saline solution in the 8oz bottle. I spray it in one nostril, then immediately hold the opposite nostril closed and try to hold the solution in my nose for a few seconds. It has made a HUGE difference. I have been off prednisone since mid February and feel a little better every day. I went out for a short walk today and did very well. I hope to work back up to the 4-5 mile brisk walks I used to do 5 days a week before I got sick three years ago.

Anyway, perhaps Mike's method might be worth a try. My sense of smell is back! Yay!! That was always a sure fire sign that I was on the downward path, so I am glad to have it back again!

People here have super suggestions and are always ready to help. Welcome! No matter your age...you will love it here!

[Melly]

Thank you for the welcome, Michelle! I'm so happy to have found you all. *group hug* Haha

Jacquie, thank you so much for the recommendation! Is a NeilMed rinse bottle kind of like a Neti Pot? I need to dust off my Neti Pot in the weeks to come. Spring has sprung and I just KNOW my allergies are going to kick in with full force once everything starts to bloom!

One thing that my doctor mentioned is that my allergies may have caused me to develop "pseudo-polyps" in my nasal cavity, which could be the reason why I can't smell anything. Anyway, he gave me a referral to an ENT and recommended that I go get a CT scan of my sinuses before my appointment. Reading through some of these posts, it seems like having an ENT as part of your team is pretty standard, so I'm wondering why no one ever gave me the referral before now, since the ONLY issue I've been having with my WG/GPA for the past few years are sinus issues. Anyway, anxious to see what the ENT says and thanks again to you and Mike for your tip. I'm glad you're doing well, and hope you can get back to your daily walks soon.

[BookNut]

Jacquie, thank you so much for the recommendation! Is a NeilMed rinse bottle kind of like a Neti Pot? I need to dust off my Neti Pot in the weeks to come. Spring has sprung and I just KNOW my allergies are going to kick in with full force once everything starts to bloom!

A NeilMed Bottle is similar to a netipot...but much better in my opinion. I have only seen the 8ounce bottle in drugstorea. The one that helped me turn the corner is the 16 ounce bottle which can be purchased at amazon. Amazon.com: Extra Large Sinus Rinse Bottle - 16 oz,(NeilMed): Health & Personal Care

It allows for more volume of the solution and more force to clean out the nasal passages. It is well worth the money. I wouldn't waste money on the baking soda/salt packets that they sell. Just get a plastic storage box and mix together 2 cups of pickling salt and 1 cup of baking soda. That will save tons of money.

Sounds like You should definitely have an ENT. Good luck!

[Melly]

Thanks Jacquie, thanks again. I went ahead and ordered the one you linked. Hopefully it works for me!

Any idea what the purpose is of the baking soda in the saline water? That stuff is irritating to me if I even get it on my skin...I'm kinda scared to squirt it up my nose! D:

[BookNut]

I am not sure why the salt/baking soda mix is needed. But I can tell you that if you use plain boiled water you will be sorry. I tried that once. Ouch. It was unbelievable how much it stung!! With the bigger bottle you will need two of the premixed packets - or about 5 or 6 teaspoons of the homemade mix. Maybe you could try just the salt without the baking soda. I will do a little research and see if I can find out the purpose of the baking soda.. T

he instructions call for using distilled water. I am not sure if boiling the water is the same thing - but I don’t want to have to buy water. Because I use it twice a day, I found it easier (and safer) to buy an electric tea kettle that turns itself off. Everyone in my house is trained that if they use it, they have to fill it again and boil it, so that I know that it is always ok to use it. I do keep a gallon jug filled with cooled water so I always have it on hand. I have heard that it is not necessary to boil the water if you are using a public water system. I play it safe. No brain amoebas for me, thank you very much!!

[annekat]

I think it is OK to just use salt, preferably non-iodized, and the finer the grain the better, like pickling or canning salt... But the baking soda is supposed to "buffer" the harshness of the salt, make it milder, as I've read on the Neilmed packaging and on here. I, too, tried it with plain water once in the beginning and regretted it. No doubt, Jacquie, you will come up with a little better explanation of what the baking soda does. But I have used salt without baking soda and don't remember it being a problem. My preference is to use the salt with baking soda as recommended.