New to the group from Alabama

[Crystallyn510]

Hi! I'm 29 and currently an active duty member in the Air Force and I was diagnosed with Wegner's last October after having my son in August. . Nearing the end of my pregnancy my nose started bleeding and running all the time. My obgyn & PCM both said it was due to extra blood in my body from being pregnant. Two days after I had my healthy baby I felt like I had a bad sinus infection. I couldn't breathe out of my nose and went through numerous boxes of tissues. My baby had jaundice so we were going to the dr daily for him and I was begging the nurse to look at my nose. She said it was still the extra blood. My son was 5 days old when I went to my dr and told him that I needed to be seen today and would wait as long as I had too. He said I had polyps (?sp). He gave me a referral for ent and some afrin and told me to use the neilmed rinse. Well this obviously didn't work. I was able to get in with an ent 2 days later and he said I needed to have surgery. This was on a Friday and Monday morning I was having surgery. Things were so much better after the surgery. I still couldn't smell my 10 day old baby or taste anything, but I could breathe.
At one of my follow-ups my ent told me that something wasn't right about what he saw so he sent some tissue off to pathology and it came back as a high possibility of Wegner's. Of course I had know idea what that was but he was on the phone with my PCM in minutes telling him I needed to see a rheumatologist ASAP. I was able to get in with one mid October and he examined me and my symptoms (extremely tired, no energy, my teeth hurt, my face hurt to touch and my hair/scalp was very tender) and started me on 60mg prednisone daily & bactrim. This was the start of my hate relationship with that. I felt so much better but he forgot to mention the weight gain, that I would eat everything I saw & of course the moon face. By mid November I had 2 rituxin treatments and has gained 25lbs. I was feeling great (minus the weight) and my pr3 levels were down from <150 to 79. By June of this yr he had taken me off my steroids because my levels were decreasing significantly and now down to 46. I had two small nodules on my lungs during my first ct and now they are gone.
Everything has been good (except for having 4 sinus infections) and I lost almost all the weight until a few weeks ago. I started wanting to just have 10 more minutes of sleep to completely tired all the time. I get up in the am feeling tired and once out of the shower I feel good until about 20 minutes later I can barely keep my eyes open. My nose has also started running. Not like before but enough to keep the inside of my nose wet all the time and I feel it crusting at the bottom and wipe it out but then it starts again. My teeth are starting to hurt again and I can't stand to brush my hair. I just received my lab results back (from September) and my pr3 level is back up to 75. My WBC & RBC are also a little elevated but not by much. My glucose level was also 166 which is really high.
My PCM tried sending me to a local rheumatologist (the one I see is 1 1/2 hrs away) because I don't receive labs and a decent time. The guy I saw was mean. He acted like I self diagnosed myself and was mad that I was seeing him instead of my other one. I see him again on Friday and I'm scared to see him so I also got my other appt with my other rheumatologist moved up from dec 6th to next Friday.
Im not sure if this is a flare I'm having or maybe bad allergies or prediabetes. I don't think allergies would last this long or make me as tired but I'm not sure and I don't want to over react.
Im glad I found this forum because it really felt good to write it all out. Does anyone have any advice? It's hard with being in the military and having this because I still have to work everyday and seeing a dr is like pulling teeth.

[Dirty Don]

Welcome Crystallyn, glad you found us...you will get lots of info and support here from many kind and knowledgeable people! I am wondering which drugs you are on and how much, first of all. While this 'flare' may seem as it may be something else at first, always go to the fact that you have WG first as this sucky little disease likes to imitate other problems sometimes. Glad you are on...ask as many questions, say as much as you like. There's always someone on here who will respond with either med info, experience, or at least some compassion! Best to you and hang tough.

[annekat]

Welcome to the forum, and you have come to the right place to vent, ask questions, tell your story, get information, make friends who are going through similar things, and feel a lot less alone. Every case is a little different, but there are many similarities, too. A lot of us had trouble being diagnosed and have had doctors with bad attitudes or who were just ignorant. There are Wegener's specialists available at a few places around the country. Check with the Vasculitis Foundation website under Support>Medical Consultants. Your docs can arrange to consult with them for free, or you can get appointments at their clinics. Wegener's can be a frustrating and confusing journey, not to mention being potentially life threatening, and can really mess up our lives. But while there is no cure, many get the disease under control with meds and can live fairly normal lives. Some go into remission, though not always permanently. We end up needing to do a lot of the footwork of understanding our disease and its treatment ourselves, as it can be very hard to get enough information from the medical community. Joining the forum is a big step in that direction, and I'm glad you found us. Keep us posted.

[pberggren1]

Welcome to our family Crystallyn. We are here for you.

I know another Weggie in Dolan, Alabama. She is 39 and has had Wegs now for 23 years. If you like I can put you in touch with her. She is very nice and very kind.

[Alysia]

Hi Crystal.
welcome to the forum.
I don't know if it is a flare but always when things are getting worse, you must find the best doc you can afford, and insist on getting the best treatment asap. it seems to me that it is now the time to do it.
good luck and update us, and kisses to your baby. how old is he now ? how did you manage to take care of yourself and of him ?

[Rose]

Hi Crystallyn

Welcome but sorry you had to be here. Having to go through this with a new born at home must be very difficult for you.

As far as a possible flare is concerned I think you should consider that it is indeed a flare until tests prove otherwise though with this disease you can still flare and have normal labs. I actually flared in the middle of my IV protocol of 6x monthly cyclophosphamide. My doctor at first thought it was an allergy (it was Spring) as my nose was running like a tap and that I could not possibly be flaring as I was in the middle of treatment which test were showing I was responding to. But when I pointed out that I never had Spring allergies before, she decided to do another ANCA and other tests and sure enough I was flaring. My sinuses and teeth were also hurting. Get some answers asap and dont let them tell you that you cannot be flaring because you are on treatment.

Rose

[mishb]

Hi Crystallyn and welcome.

That must have been such a difficult time for you to find out about WG the way you did - and with a brand new baby.

I too would be interested to know what other medication you were put on, and what levels you are still on.

The face, teeth and head hurting are one of the main things I remember about pre diagnosis. That and the roving muscle and joint pains, were the worst.

Take care

[Pete]

I agree with Rose. This disease can be so sneaky. I think we're all inclined to ascribe to occasional odd symptom to something else. In our cases, a little paranoia about this disease is probably wise.

[annekat]

Michelle, same with me with the face, teeth and head hurting pre-dx, and the joint pain. It was frustrating that no one, even when in the hospital overnight, would address these issues... I would try to describe this tightness around my eyes, for example, but they didn't even respond. Not to mention that none of them noticed my saddle nose, nor had I. Whatever. But I guess they were focusing on blood draws and CT scans of my lungs, and getting me breathing better, and in the end, my overseeing doc there suspected Wegs. So I was able to go home and find the forum and start reading up on WG, and I noticed my saddle nose and was able to get in fast for the biopsy at the ENT which confirmed it. But back to the original point, it always bothers me when doctors ignore or have no response to some of my symptoms.

[Crystallyn510]

Thank you everyone for the warm welcome! Last October the dr started me on 60mg prednisone daily as well as bactrim. After I had my rituxin treatments I dropped to 40 every day and by January I was at 20 every other day. March I was down to 10 every other day and by June I was taken off except for the bactrim.

[pberggren1]

Are you on facebook Crystallyn?

[Dirty Don]

Thank you everyone for the warm welcome! Last October the dr started me on 60mg prednisone daily as well as bactrim. After I had my rituxin treatments I dropped to 40 every day and by January I was at 20 every other day. March I was down to 10 every other day and by June I was taken off except for the bactrim.

I'd suggest then that you're flaring. As I just found out recently, the odds are against us...80% of us flare again within first 2 years...sighs. May have to go back on pred...it's not a horrible thing...just not what we want ultimately I guess.

[annekat]

Thank you everyone for the warm welcome! Last October the dr started me on 60mg prednisone daily as well as bactrim. After I had my rituxin treatments I dropped to 40 every day and by January I was at 20 every other day. March I was down to 10 every other day and by June I was taken off except for the bactrim. That sounds like a pretty successful treatment plan and a pretty fast taper of the pred, especially compared to some of us. It says a lot for the alternating day on, day off method, which sounds a little scary to some of us. I'm glad it worked for you and hope you aren't starting to flare again, but sounds like you are on top of the possibility and will get enough info here to help you figure it out.

[Crystallyn510]

I am on Facebook. It's under Crystal Johnson or Crystal Chatham

[annekat]

I am on Facebook. It's under Crystal Johnson or Crystal Chatham We do have fun on Facebook. I will look you up and make a friend request. I'm under Anne Wellings.

[Alysia]

We do have fun on Facebook. I will look you up and make a friend request. I'm under Anne Wellings.

facebook is the place to meet without the forum rules :flapper:

[annekat]

facebook is the place to meet without the forum rules :flapper: True, and we can wander off topic not get Mr. Putin reminding us to get back on!

[Alysia]

True, and we can wander off topic not get Mr. Putin reminding us to get back on!
if you mention it, then here he comes....
I dont know why the americans dont like him. the immigrants from russia in Israel adore him. Savva, are you around ? what whould you say ? but maybe not here.... sorry... oops... :o
:back on topic:

[pberggren1]

I'm gonna say it. I'd rather have Putin than Obama.

[annekat]

Ha, ha, ha, Alysia! I thought you might do that! I haven't thought about liking him or not, one way or the other, must admit I don't know that much about him. It's just his stern demeanor in this pic that makes him effective here. It may be interesting to hear what Savva has to say about him. I think he can say he likes him or not without breaking the rules. As long as it doesn't start a political discussion or argument.

[annekat]

I'm gonna say it. I'd rather have Putin than Obama. Phil, you have neither....

[pberggren1]

I may not live in Russia or the US of A but those leaders affect the whole world, especially Obama and I have many great friends that are hurt by him on a daily basis.

[annekat]

:back on topic:
:smile1:

[pberggren1]

lol Anne.......:tongue1: