First post - Hi from California!

[Melly]

Hey everyone, I'm Mel from San Diego. I'm 26 years old and was diagnosed at age 19 (early January of '07). I had mainly pulmonary and upper respiratory involvement, but my kidneys were also affected. Thankfully I didn't suffer any permanent damage, but I've had lingering sinus issues for the past 7 years and have almost completely lost my sense of smell at this point. Honestly, it's a gift and a curse. I work in a hospital and there are MANY smells that I'm glad I don't have to experience. Always look on the bright side, right? :P

But yeah, things were pretty rocky for a while and I feel like I'm only just now getting my life back on track. I'm sure you guys have been or (sadly) are currently going through that whole song and dance, so I'll say no more.

I'm looking forward to getting to know you all better. I was a member of a support forum when I was first diagnosed called wegenersnet, I believe, and it was one of the only things that kept me sane during that horrible period of severe disease activity.

Best health to you all!

[Debbie C]

Hi Melly and unfortunately welcome to the family. Since you are not new to this whole weggie thing u could probably tell us a thing or two. It's sad that you were diagnosed at such a young age but luckily you had some good drs. that knew what is was and caught it in time.You will find alot of support from around the world on here. And someone is usually here whenever you just want to talk. What meds are you on now? Don't you have to be careful working in the hosp. with everyone sick there or are you not around patients. Take care and again welcome !!

[pberggren1]

Welcome to the family Mel. We would love to hear your story.

[NikkiNicole]

Welcome to our unfortunate family. We'd love to hear your story. I think that helped me the most when going through my diagnostic process, reading the stories and knowing that there were others out there who had it worse than me, or that I wasn't alone.
I am sorry you have to go through this at your age (like I'm SO much older) but, you seem to have a very upbeat, positive attitude and I believe that goes a long way in our worlds.

[Melly]

Hi Debra, thanks for the welcome! Currently, I'm not on any medications. But here are all the medications I've been on at various stages in my treatment for WG: Cytoxan, Rituxan, Arava, prednisone, methylprednisolone, bactrim, intravenous immunoglobulins and Imuran. Not all those at once, though! Holy smokes, that'd suck. The very first two medications they put me on were Cytoxan and prednisone. They soon switched me to methylprednisolone instead of prednisone since apparently my body was unable to properly metabolize the prednisone and I responded much better to the methylpred. The doctor that diagnosed me was kind of a maverick, so he had me do a couple courses of Rituxan, which wasn't approved by the FDA for treatment of WG at the time (and was a total pain to try to get my insurance to cover, grr...) as well as Arava, which I don't think is a very common maintenance med for us Weggies even today, but it was kind of unheard of back when I was on it. Don't get me wrong, I'm intensely grateful to this doctor for saving my life since I know I didn't have much longer, but I felt like his guinea pig at times and it didn't sit well with me. Anyway, I switched over to Imuran once I changed Rheumatologists and was on that until December of last year.

I do have to be very very careful in the hospital, but I'm not as concerned about it now that I'm no longer on the immunosuppressants. There was a period during school that was very scary for me. I was doing 32 hours of clinical rotations at an intensely busy trauma hospital on top of going to school full time and being stressed constantly. I was pretty much a walking talking flare waiting to happen, but somehow I made it out okay! I got about two colds per semester, but I was practically in kissing distance of many of my patients during peak flu season and came out completely unscathed. Lucky! I'm an x-ray technologist, so yes, I get my hands on every single one of my patients. Good hygiene and being as vigilant as I can be plays a huge part in keeping myself healthy.

Sometimes I wonder if I'm not completely crazy for choosing this as my career, but I developed such a wonderful relationship with my x-ray tech when I was in the ICU. I mean yes, she did wake me up with her loud machine, flip all the blinding overhead lights on, shove a cold hard plate behind my back and then shine another light directly in my face every morning...but she was the happiest person in that whole hospital; a bright point in my day. I wanted to be that for someone else. I definitely think my experience allows me to relate to my patients in an entirely different way than many healthcare workers because that person in the hospital bed used to be ME. Helping other people is how I cope with the hand I've been dealt. If I can make a difference to someone in some small way, then I'm not wasting the second chance at life that I was given.

Phil, it's nice to meet you! I think I will write my story out sometime soon. It'll likely just be a massive wall of text, but it might be kind of therapeutic. The stories I've read so far have been very interesting to me. There's no story that's exactly like my own, but I can relate to every single one of them in some way all the same. That's why Weggie communities are so great. :)

Nikki! Nice to meet you, too. Honestly, I am glad that I was young when all this happened. Not only was my body able to physically recover and repair pretty quickly with no permanent damage, but the entire experience changed me as a person and I know the changes were for the better. You're around my age, I take it? What has your experience been like? I don't know many Weggies in the same age bracket, so I'm always anxious to pick their brains whenever I find one!

[NikkiNicole]

Well, I'm a wee bit older (34) and was diagnosed at the end of last July. I don't feel like I'm that old (well physically I do but mentally I'm still very much a kid). I had a not so great team of doctors in the beginning who treated me like this was all in my head or a search for pain meds. But, I switched my team up and they looked in the right places and found what they were looking for and cancer too.
Cancer is almost 1 year in remission and I am hoping it stays that way and Wegener's is sort of asleep. I still feel like I'm swimming up stream every day but ... I'm pushing forward.

[Melly]

I can't tell you how many times I was misdiagnosed. I had symptoms for 5 years and it seemed like I had to progress almost to the point where I was on death's doorstep before someone finally started to really look for answers. It's so frustrating having people tell you you're fine when you know something is wrong. One of the biggest problems that I see in medicine today are apathetic doctors that don't simply listen to their patients.

I'm glad you finally found some professionals that got you the care you needed. For a long time I felt like I was stuck in this deep dark hole with no way out, but it gets better with time. It sounds corny, but part of it is just believing that there will come a day when all of this is behind you and not accepting defeat. And one of the hardest lessons I had to learn was to go easy on myself. My mind had all this drive and all this energy...but for a while my body was just not able to physically keep up. Never mark your calendar in pen because you don't know (especially in those early stages) what any given day will bring. Be flexible and be kind to yourself when you don't quiiiiite meet your own expectations. If you're pushing forward, you're doing it right! :D

[Debbie C]

Melly,how long have u been med free. You are not taking any maintance drugs drugs at all ?

[annekat]

Welcome, Melly! You are a great addition to our forum. Your story, what you've told so far, is interesting, and we'd be glad to hear any more of it, and it's OK if it is a wall of words! You obviously have a thing or two to teach some of us, having had WG for several years. And every story is different, with threads of similarity running through them.

Everyone else has given great responses, so I'll leave it at that, but I hope to hear more from you and that you will join in many of our discussions.

[windchime]

Welcome to the forum Melly. I think there are a few your age around. I'm sure they'll chime in soon. Sounds like you had a rough few years, I'm glad things have evened out for you. Your attitude is so positive and upbeat and that's great. Keep it up. Love it!!

[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 (http://www.vasculitisfoundation.org/special-events/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 :thumbup:
take care and continue to write :hug1:

[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 :tongue1:

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 (http://www.amazon.com/gp/product/B000U897S8/ref=oh_emp_details_o09__i00?ie=UTF8&psc=1)

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!!:laugh:

[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.

[BookNut]

Evidently the baking soda is a buffer as Anne says. Here is a good article about the benefits of nasal rinses compared to standard nasal sprays. Stuffy Nose or Sinus Problems? Here's a Fix - US News (http://health.usnews.com/health-news/articles/2007/11/29/stuffy-nose-or-sinus-problems-heres-a-fix)

This article talks about the 8 oz bottle...but I feel the 16 oz bottle is much more effective for really bad sinus issues.

[Melly]

Thank you both for the info, You guys rock! :D

Ahh, I can't wait to try it! Seems a bit weird to get all excited about nasal irrigation, eh? Strange times we live in, my friends. Straaange times.... :P

[pberggren1]

Mike G and I and a few others on here are kinda resident experts when it comes to nasal irrigation. Mike and I use Waterpiks with a nasal attachment to rinse the nose out. The Neil-Med squeeze bottle is awesome. I recommend the larger 16 oz. one. It usually comes with premixed packets as well that work very good. Whatever water you use don't use tapwater. Try and use distilled or RO (reverse osmosis). Tap water has too many bacteria and fungi in it that can cause major infections for us.

I mix my own solution up with Coarse salt that is pure. It has no additives at all. That is the best salt to use. And baking soda does act as a buffer so it does not sting like Anne says. For a 1 liter mix of water I use about 2 one quarter heaping spoons of salt and about 6 to 8 heaping of the same sized spoon of baking soda.

[annekat]

I think the mix my ENT's nurse suggests is closer to yours, Phil, with a lot more baking soda than salt. That's what I've been using, although I sort of eyeball it when mixing the dry ingredients in the jar I use. Other recipes commonly call for more salt than baking soda, or for half and half. I guess I figure they must all work OK. But I'm curious to know why my ENT nurse and you go so much heavier on the baking soda. Unless it is still for the buffering reason. After all, I guess baking soda is a form of salt.

[annekat]

Thank you both for the info, You guys rock! :D

Ahh, I can't wait to try it! Seems a bit weird to get all excited about nasal irrigation, eh? Strange times we live in, my friends. Straaange times.... :P You WILL get excited, Melly, when you see the stuff that comes out of there! Although, since you are apparently in remission, I guess, or is that right?.... anyway, if you have little or no current Wegs activity, perhaps you won't get the spectacular monsters some of us have gotten. But you will find the process to be soothing and therapeutic and will probably miss it if you don't do it regularly.

[pberggren1]

The reason we go in favor or more baking soda is to make sure it does not sting and hurt the nose inside. If there is too much salt then it can really sting bad, trust me. It is better to have an isotonic solution, more baking soda, than a hypertonic solution, less baking soda. You can always adjust your own mix of it. Just make small adjustments to suit your need for getting the crusties out. The more hypertonic it is the more it will get out the crusties but it will also sting too, so be careful.

[annekat]

Thanks for that info, Phil. I didn't know it involved more mildness vs. getting the crusties out. If I think I have some really bad crusties, I'll use a little more salt.

[BookNut]

I ask you....where else could one go to discuss the crusties that come out of our noses...AND find the discussion uplifting, no less?! :thumbsup:

[Melly]

Haha Jacquie, that's hilarious. And true!

And Anne, by all accounts I am in remission, but I have never been able to completely get a handle on my sinuses. No one can quite figure out if it is allergies or my WG. I don't have crusting like I did before I was diagnosed, but I do range between stuffy and drippy most of the time. Maybe this is just my new "normal?" I'm anxious to hear what the ENT says. We shall see!

Eh, I'll try it with the baking soda, I guess. If it burns the crud out of my nose, at least I'll know it's working? :P

[pberggren1]

I would try a mild isotonic solution in the mornings and evenings to see if that helps throughout the day. I am curious too as to what your ENT will say.

[annekat]

Eh, I'll try it with the baking soda, I guess. If it burns the crud out of my nose, at least I'll know it's working? :P From what Phil said, I got the impression baking soda would be milder than salt, and more salt would be less mild, but get at the crusties better, while more baking soda would make a milder solution for when you don't have as many crusties. So maybe the skin reaction you had to the baking soda was a whole different problem....?

I've gotten the impression on here that many of us who are in remission, or close to it, will still have lots of sinus issues, perhaps indefinitely, because of permanent damage done there by WG. But there is sure a lot that I don't understand about the specifics of that damage.

[drz]

From what Phil said, I got the impression baking soda would be milder than salt, and more salt would be less mild, but get at the crusties better, while more baking soda would make a milder solution for when you don't have as many crusties. So maybe the skin reaction you had to the baking soda was a whole different problem....?

I've gotten the impression on here that many of us who are in remission, or close to it, will still have lots of sinus issues, perhaps indefinitely, because of permanent damage done there by WG. But there is sure a lot that I don't understand about the specifics of that damage.

That my understanding from my Weg expert at Mayo. The damage to our sinuses impairs our ability to naturally move out normal mucous and sinus excretions like we could do with healthy and non damaged sinuses and nasal passages. Residual symptoms in nose and sinuses, mild joint pain and fatigue are often present even when other symptoms and lab work indicate remission and no need to change treatment plan.

[drz]

Haha Jacquie, that's hilarious. And true!

And Anne, by all accounts I am in remission, but I have never been able to completely get a handle on my sinuses. No one can quite figure out if it is allergies or my WG. I don't have crusting like I did before I was diagnosed, but I do range between stuffy and drippy most of the time. Maybe this is just my new "normal?" I'm anxious to hear what the ENT says. We shall see!

Eh, I'll try it with the baking soda, I guess. If it burns the crud out of my nose, at least I'll know it's working? :P

I would start with a commercial packet as they are mild mixture and it stings if you just use plain water without the soda and salt. You can buy the packets at most drugs stores along with a squeeze bottle for rinsing. The salt and soda make it neutral so it feels OK to our mucous linings. Heavier solutions like two or even three packets might be more effective but you might do just as well or even better to use regular strength solutions and rinse two or three times instead. Alkolol added to rinse gives a nice mild cool refreshing feeling and is reported to also help dislodge mucous from passages. Most good drug stores will carry it. I buy mine at Walgreens and use it in very mild strength. I mix my own salt and soda for rinses and my solutions generally equal those of two or three commercial packets in one bottle and there is no stinging sensations long as I keep ration of salt to soda constant. I have never tried anything like using five or ten packets in one rinse bottle but see no need to do so either. The key is to rinse often like once or twice every day.

[annekat]

That my understanding from my Weg expert at Mayo. The damage to our sinuses impairs our ability to naturally move out normal mucous and sinus excretions like we could do with healthy and non damaged sinuses and nasal passages. Residual symptoms in nose and sinuses, mild joint pain and fatigue are often present even when other symptoms and lab work indicate remission and no need to change treatment plan. I'm feeling more and more lucky to have recently found out that, along with the extensive damage to my whole sinus area, the former sinus cavities have completely "self-obliterated", that is, they have filled in with thickened bone and tissue, will no longer be producing mucus to be cleared out, and contain no space for germs to collect and start infections. Weird, but true. Yet my nasal cavity seems to be recovering and producing healthy looking mucus, so it won't get too dry in there, irritants will be flushed out, etc. I will still need to be diligent with my nasal rinses, but now I know why there seemed to be less and less coming out with them. I wish some of you could get a break like that, as long as I understand it correctly and it really is a break!

[annekat]

I second the suggestion of trying Alkalol. It is available at Rite Aid as well as Walgreens, and maybe more places. I, too, use it mild, you need to experiment with that, as some will find it too strong at some point, as I did. It has a nice, cooling, soothing sensation and one person here said it keeps the nasal passages open longer after the rinse. Look it up on the web for more info about what it contains...mainly natural substances from plants, I think.

[keegan55]

Welcome to a great group of people that really understand what you are going through I am so sorry you got this at such a young age I an new to the group and do not have great knowledge of this yet I am glad you joined us welcome again