Newly diagonsed from Montana

[sandyazh]

I was diagnosed with WG in March of this year..lost about 35% of my hearing about 4 years ago then my eye begin swelling with blurred vision about a year ago. Initially I was told I had RA, the eye dr. that I was seeing said he thought the RA had gone to my eyes and referred me to a rheumatoligist..luckily 15 min with the rhuem. dr. he said I think you have WG and like all of you I had never heard of it. He prints out a 29 page handout and said here learn about it cause you fit it like a glove. After confirmation from the ANCA test he put me on 40mg of prednisone and 100 mgs of cytoxon. After 6 wks he decreased the pred. which I know now was too fast cause I was miserable with FATIGUE all over again. Could barely get out of bed. All I wanted to do was sleep. I have never experienced such tiredness..and being short winded. After reading alot of the other entries here on this site i know that I am not alone! This blog has been such a help!! I have learned so much and am sure have much more to learn. But the most important thing to me is that I can identify with so many, it is very encouraging to know you are ALL out there somewhere :o

[Sangye]

Hi Sandyazh, welcome to the group. Well, you've experienced first-hand that a regular rheumy cannot handle Wegs. You need a rheumy that specializes in Wegs. More info here: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/986-what-newly-diagnosed-need-know.html

I'm wondering why your doc only put you on 100mg ctx. It goes by body weight-- are you very small? The typical dose is 150mg. What dose of pred are you on now?

[elephant]

Welcome Sandyalc, are you still on cytoxan and how much pred are you taking. I myself eventually decided that I needed a Wegeners specialist and drive all the way up to Cleveland Clinic and I will tell you it is worth it. We are here to support you!

[sandyazh]

thanks for the quick response! To answer the questions I do not have a dr. who specializes in WG...he is just a regular RA dr. I live way in the boondocks so I dont even think there is a WG dr. anywhere near where I am...probably not even in the BIG state of Montana is there one. No I am by no means SMALL ! Never have been! Why he chose the 100mg is a good question...I just started 5mgs of pred. on Fri. Initially he started me on 40 mgs of pred. then as of Aug. he has been tapering me down on the pred and cytoxin. Right now am on 50 mgs of the ctx and the 5 of pred..go back on the 19th of this month and he said if the blood work looks as good as it did in Aug. he will take me off of the ctx and probably keep me on a maintenance dose pred. and might put me on methadex something that sounded like that..anyway don't know if he has even treated anyone before me that had WG.

[Jack]

You probably don't know how scary that will sound to many of us on here! :ohmy:
If your current treatment seems to be working and you are becoming free from symptoms then your current doc will no doubt be able to handle your condition. The worry is that Wegener's can be very unpredictable and it can all go horribly wrong very quickly. It is then that you need the expertise of a vasculitis specialist and fast. It would be well worth making contact with such a person that your doc could then refer to if needs be.

What is your current condition? The level of medication you describe suggests that you must be pretty well in remission.

[sandyazh]

Well thank you ALL for your input and quick responses..my current condition is better than I was a few months ago..seems June and July were my worst months..I can say my main complaint has been the FATIGUE and the sore joints mainly in my hands and being short winded most of the time..feel like a whinner compared to some of the other symtoms I've read here that alot of you have. Hope my rhuem. dr. is going to work out for me cause I always try to look on the bright side of things and I figure he brought me this far...

[pberggren1]

Hi sandyazh:

I hope your Rheumy can get a regular consult lined up with one of the VF Specialists so that if things get a little tricky that you guys can't figure out then you can consult with that doc.

It does sound that you are going into remission. It is important too that you are able to contact your Rhuemy very qucikly if something does not seem right to you. I am fortunate and have my Wegs doc right in my town and am able to phone his office and he calls me back within 24 hours or less and I can track him down at the local hospital as well in the mornings if need be. So I would suggest at least getting his e-mail and possibly his home and cell numbers and telling him how important it is if you do call that he has to call back right away.

5mg of pred seems a little low to me right now but if you have been on it since March then it may not be for your case. My Wegs doc says that in most cases he does not keep Wegs patients on ctx any more than 3 months and then switches to a maintenance drug like Imuran or Cellcept or something like that.

If your doc wants to he can consult with my doc. His number is 306-773-5855. He is a Wegs Specialist.

[elephant]

Sandyazh, It sounds like you have active Wegeners going on...the fatigue, joint pain and short winded. When was your last CT scan? Did you have a lung doctor to check your lungs, they may have to do a lung function test. I strongly suggest you get to a Wegs specialist, you can go to Mayo. Having a specialist will shorten further complications. I wish you the best.

[Sangye]

Sandy, I agree with the above. Like Jack said, we are scared reading your post! Your current symptoms sound like active Wegs. Maybe better than when you were dx'ed, but certainly not Wegs that is under control. A Wegs specialist knows not to rely on blood work, not with this disease. Believe me, you do not want to be your doctor's test case. Please read the thread I linked to and see how to get a Wegs doc involved.

[Doug]

Front Page | Vasculitis Foundation (http://vasculitisfoundation.org/)

Sandy- This link is posted all over this site, but here it is again. Please look through the consulting doctors listed. It looks like the Mayo Clinic in Rochester, MN, is the closest to Montana, and there are several doctors listed in the support/consulting doctors section.

http://www.vasculitisfoundation.org/node/44 There. This takes you directly to the consultant link.

[sandyazh]

Well hello to all and to say I am back...literally from deaths door..the 11th of this month my husband and I took off to go to the western part of the state..to see a daughter who lives there and the other daughter who was flying in from Phoenix. Didnt feel to good..the usual tiredness and etc. but thought its just the same old same old..just be a couple of days anyway. Actually thought it might be the flu coming on..woke up the next morning (12th) not to good and layed around ALL day..next morning (13th) at 6am woke up (had the chills off and on during the night) next coudnt seem to breathe and very winded...daughter,who is in her 3rd year of nursing school, and my husband call 911. Took me to the local ER, then immediately helicoptered me to Missoula. I was in cardiac failure, renal failure and respiratory failure. The flight was 15 minutes..thank God I was where I was because if I had been home I wouldn't of gotten the immediate aggressive treatment that I needed! Next put on respirator and was quickly diagnosed with septic shock..Dr.s said I was just hours from death..My dr there was an Internal/Pulmalnalogist (?) lungs anyway. My Lord and the quick action of all doctors involved saved my life..I was out of ICU in 36 hrs. and released from the hospital on the 18th.
I will write more later..still recovering and in kind of shock over all that happened so quickly...never know what a day will bring! Thanks for all the inquiries and concern I feel very blessed to be able to correspond with such caring people...thanks a bunch...... Sandyazh

[Jack]

So glad to hear that you made it through that one! It sounds like a very close call and you were lucky to get such good care from everyone involved. Was the problem associated with Wegener's or was it something else entirely?

[pberggren1]

Sandyazh, it is obviously Divine Providence that you were away from home like that to get immediate care.

I am so glad to hear that you survived all that and are now at home resting. We look forward to hearing more from you and your episode.

God Bless,
Phil Berggren

[elephant]

Sandy, so glad your family was "Johnny on the spot" when this all went down. So happy to hear you made it. When your ready can't wait to hear from you. take care.

[Sangye]

Wow, how bizarre. Are you on immunosuppressants? Is that why you went into septic shock so quickly?

[jola57]

I'm with Sangye, that is bizzare. If you are on meds this should not happen. The Lord does work in misterious ways. Glad you had immediated help.

[Doug]

I can only add my amazement over the details of this episode you just went through! Word! Need I add, I am very glad you are able to be back with us, Sandy. There are no coincidences. This played out as it was intended.

[sandyazh]

Another chapter to this episode..the next day after I wrote.. I had been getting, I thought pink eye, went to my local eye dr. shared with him what I had just gone thru, he immediately goes see my fnp who does most of my care, together they see I have an obvious infection going on..make fast arrangments get me shipped off to Billings Mt. (300mi away), where there is more qualified DR.s by that night back in the hospital w/round the clock IV antibotics..Eye dr. comes makes diagnosis: eye abrasion across center of my cornea that is very infected. 3 days of being hospitalized and back home feeling better than when I left! Our daughter comes home to see me and we relate the story...she is reminded when I was in Missoula ICU that the first few hours they kept coming in and checking my eyes with a light and she asked them why and they said "make sure we still have brain activity"..thats when I must of received the scratch on the cornea by one of the staff who was opening my eye..accidently to close and someone scratched the eye..infection sets in week later...all said and done I "think the worst is over!" Still not 100% but getting there. Love n prayers to all my weggies family..Sandyazh

[pberggren1]

You have certainly been through the mill lately. I am glad to hear that you are on the mend though and getting the right treatment.