Another newbie

[Rita.M]

Hi my name is Rita & i got an early Xmas present "Wegeners".I inherited this from my father so know a bit about it. It all started when I had an ear infection that did not respond to antibiotics , then about 3weeks later i could hardly walk my knees were so bad.It happened so quickly in a matter of weeks I was deaf, could hardly walk or use my hands. My ENT sent me of to have some tests, i ended up in hospital had a kidney biopsy & found out it had just started up there. Now I am on Cyclophosphamide IV, Prednisone & a very strong Bactrim. The funny thing about this is that I feel so well.I have more energy now than I had when I wasn't sick. Think It must be the prednisone because all my joints &ears etc.are ok now.:sad:

[mishb]

Welcome Rita,

Wow your father has WG as well? That's a harsh type of inheritance you received there......thanks dad :sad:
I guess you were also very lucky, in a way, in that you and probably your doctors knew what to look for, thanks to your father, and were able to get things under some sort of control quite quickly.

Welcome again, and if there is anything you need to know (other than what you have already learnt from experiencing it), the people on here are a wonderful bunch to get to know.

Take care and as always.........

[Widthofacircle]

Hi Rita and welcome to the forum.
Sounds like you have been lucky to get things quickly under control. I hope you will always feel as well as you do now but for those times when you may not, there are some fantastic people on here who can give invaluable advice and support.
Brendan

[Psyborg]

Welcome to the forum, but sorry you need to be here. I think you might be our first member that has a direct family link. I find that very interesting. I hope we can provide some help to you as needed.

[Dirty Don]

Welcome Rita, there's lots of good peeps on here who have vast experiences and knowledge outside of a doc's care too. Invaluable resources here and some pretty bad joke tellers, including myself...it's the drugs!!!

It's the pred helping you out, keep feeling fine...and hope the tapers start soon and work well for you. My dx was in August, and I went down pretty quickly with a major flare...good to be dxed...kind of! LOL
Your 'family link' intrigues me as there are a couple of articles out there on WG research that seem to be trying to find a genetic link for WG although early on in the disease docs have said it's not likely...you are the first Weggie I've heard of also with a possible genetic link.

The best to you!

[annekat]

Add my welcome to the list, Rita! I've been diagnosed since April and just started posting about a month ago, but have been reading the forum since before my dx and have found it to be an essential part of my daily life. I look forward to hearing more about your Wegener's and the progress of your treatment. Mine started the same way as yours, with a severe antibiotic-resistant ear infection in both ears, followed by severe joint pain which subsided and then returned months later. I thought the joint pain was a reaction to Levaquin, the strong antibiotic that finally killed the infection, but now it seems it may just as well have been the Wegener's. I didn't get diagnosed until 2.5 years later, after a whole bunch of sinus infections and ear problems, so you are lucky to have been dx'd so soon after your initial symptoms.

Anne

[Dryhill]

Rita, welcome to our very exclusive club and to having such an exciting, fun disease ........ I mean who would want something everyone had heard of and could spell!

Like the others I am facinated that your father had WG too, especially as I was told that it was extremely unlikey that my daughters would get it. Hmmm seems the good doctors do not know everything, what a surprise.

Jim

[NicShaf]

Welcome Rita. I totally understand getting that wonderful & unexpected Christmas present, I got Wegs for Christmas last year:)
Glad to hear you've started treatment and are feeling better already. I definately agree with you, the energy is probably the Pred, but I bet its nice to feel better after feeling not good for so long, I remember that feeling.
Hope you keep healing and doing well in the new year!

[Al]

Happy holidays, Rita, in spite of your special gift! Most of us have similar prednisone stories. When I was on the high-dose stuff, I was rarin' to go by 5:00 in the morning, which was, for me, unprecedented; ordinarily, that is closer to the time I would go to bed. And we all know the, er, joys of coming off the steroid high. You raise an interesting issue concerning genetics. The statistics show that there WG does have a heritable component, but that it is quite small, so there is generally very low predictability for the disease based on family associations. But the probability is apparently not zero. Thanks for sharing your story!

Al

[Sangye]

Hi Rita, welcome to the group! I'm glad you got dx'ed before the Wegs went too far. Hopefully you can get it under control without too much trouble.

The high energy is definitely the pred. Just take care with what you do while on high-dose pred (ie, 20mg and up). Pred makes it much easier to tear ligaments and tendons, and while you may feel like it is giving you energy the pred is actually depleting the adrenal glands quite badly. If you overexert now, you pay later. High-dose pred makes my mind very active but it actually weakens me physically. For me, it gets worse as the dose is increased so I'm never tempted to overdo it on high-dose pred.

It's very interesting that you and your dad have Wegs. I'd want to see a detailed history of common toxic exposures and infectious agents before I agreed that it was directly inherited. (I'm not asking for that, of course-- just saying that if I were a researcher I would do that) Anyway, glad you're here. :smile1:

[Rita.M]

Hi Sange, we were told that Wegs wasn't inherited when my dad got it 27yrs.ago. Now that I have it I have been asking the doctors in Concord hospital Sydney lots of questions.
Have found out that they have another family that they are treating at the hospital, although it is said to be very rare indeed it does need to be researched a lot more & I hope for my children's sake this will happen.
As far as I know with my dad it started with high temps.He had some lung involment & was put on Methotrexate 7 some oral chemo drug +pred.
He then got lucky & went into remission for13yrs. The pred made his bone weak, he fell & broke his leg. When in hospital he got a staph. infection.
He then found out wegs was back in his kidneys so he was put on dialysis but the staph. infection had set in & he died aged 82.
BTW both dad & I have the same blood type, it's a rare one ABneg. Who knows??? Cheers Rita.:unsure:

[BrianR]

Marta's blood type is A-, also rare. I wonder how many others are either A- or AB-.

[RudiK]

My blood type is also A-.

[Al]

Dunno if blood type has anything to do with anything--I am plain old O positive myself. It would be interesting, though, to take a wide survey, with enough numbers to make a statistically viable statement.

Al

[annekat]

Dunno if blood type has anything to do with anything--I am plain old O positive myself. It would be interesting, though, to take a wide survey, with enough numbers to make a statistically viable statement.

Al
Geez, I don't even remember what my blood type is. Would it be on my birth certificate or anywhere else I might look at home in my messy piles of papers? Otherwise, I'll have to remember to ask the next time I'm at the doctor's. Don't know if I have any copies of blood tests.

Anne

[Al]

Geez, I don't even remember what my blood type is. Would it be on my birth certificate or anywhere else I might look at home in my messy piles of papers? Otherwise, I'll have to remember to ask the next time I'm at the doctor's. Don't know if I have any copies of blood tests.

Your doctor will have all the blood tests on file, Anne, and is obligated to make copies for you if you ask. These tests do not, however, generally indicate the blood type, though that will be in the records somewhere; the doctor needs to know in case of the need for a transfusion. The hospital, at least, will have this information handy.

Al

[annekat]

Your doctor will have all the blood tests on file, Anne, and is obligated to make copies for you if you ask. These tests do not, however, generally indicate the blood type, though that will be in the records somewhere; the doctor needs to know in case of the need for a transfusion. The hospital, at least, will have this information handy.

Al
Thanks, Al.

[pberggren1]

My blood is blue.

[Sangye]

I'm sorry to hear about your dad, Rita.

My blood type is A+. I was always a very good student. :biggrin1:

[mishb]

Plain old O positive here (O for outstanding) :thumbsup:

It looks like the A's have it so far, and then there's Phil with his royal blood

[Al]

....and then there's Phil with his royal blood

Blue, but true?

Al

[drz]

I'm sorry to hear about your dad, Rita.

My blood type is A+. I was always a very good student. :biggrin1:

Me too. Now i am working on fixing my GPA up.:biggrin:

[Sangye]

LOL drz, you and I both have high GPA's. Stinker disease!

[Thakator]

Another A- here; already seems like too many.

[Trudy]

I'm A neg too and my 21 year old daughter with an autoimmune disease (SLE) also is A neg. I also have SLE along with GPA...lucky, huh?

My daughter has had sinus and ear problems since August. She just saw an ENT and I watched the monitor as he could hardly get his scope in her swollen nasal passage. He put her on a high pred taper which seemed to take care of it, but the problems are all back. I do hope this is not GPA also.

[Sangye]

Trudy, beware of those short high pred treatments (in this case for your daughter). They are only temporarily relief of symptoms but they do lasting damage to the body-- endocrine system, bone density, etc.... Pred doesn't treat either SLE or Wegs-- just gets it under control while the immunosuppressant works.

[Trudy]

Trudy, beware of those short high pred treatments (in this case for your daughter). They are only temporarily relief of symptoms but they do lasting damage to the body-- endocrine system, bone density, etc.... Pred doesn't treat either SLE or Wegs-- just gets it under control while the immunosuppressant works.

Thank you, Sangye. Her SLE is inactive at the moment. She is an anti-drug person, as she was on everything under the sun at 14. She does take very low dose pred for IBS attacks when they happen. For this latest "thing" they had given her 3 different rounds of antibiotics, then resorted to the pred taper. I do not feel they know how to treat her or what they are treating.

Yeah to you.....a whole year and you have even stated on a new year now. I am happy for you!!!!

[Al]

Thank you, Sangye. Her SLE is inactive at the moment. She is an anti-drug person, as she was on everything under the sun at 14. She does take very low dose pred for IBS attacks when they happen. For this latest "thing" they had given her 3 different rounds of antibiotics, then resorted to the pred taper. I do not feel they know how to treat her or what they are treating.

Trudy, you said a mouthful. I suspect that you are right: They really do not have any idea what they are treating. Lupus, like WG, is a very complex disease that is not easy to deal with. I think both are beyond the capacity of many doctors to have any feeling for. Not that even the best of healers can guarantee a good outcome, but there is a huge amount of therapeutic value in having a competent and caring doctor. A good SLE doc, like a good WG doc, knows his field and can see the big picture.

Al

[Sangye]

Yikes, Trudy. I hope she's seeing a holistic doctor. Treating IBS with antibiotics really trashes the gut. And then adding pred to it... man. There are so many alternatives for her. I suggest finding a naturopath or chiropractor in your area who has experience with this.

[makabe]

First, welcome to the forum!! I am new here, too, and was interested to read that you may have a genetic connection for your WG. I've never heard of that before. My children are adopted, so I have, at least, not had to worry about passing anything on to them with this icky disease.

The blood type aspect of this also intrigues me, but I am O-negative. No connection to anyone else in that regard, from what I see in this thread! I'm theoretically a great donor, though.. I have had past transfusions, though, for a ruptured ectopic pregnancy, so no one will take my blood back at this point!

[Trudy]

Yikes, Trudy. I hope she's seeing a holistic doctor. Treating IBS with antibiotics really trashes the gut. And then adding pred to it... man. There are so many alternatives for her. I suggest finding a naturopath or chiropractor in your area who has experience with this.

It is sometimes hard to give a clear picture on here.....sorry. The antibiotics were for the mysterious ear, nose, and throat problem which only cleared up after the prednisone taper. This was first our PCP, then an ENT. Our SLE doctor was not involved. Actually she has only had antibiotics 4 times in her 21 years (all since she was 14).

The IBS with Lupus is a little different than with other people. It is more like catching the first migraine symptom and acting quickly. First IBS symptom and 5 mg pred for a day or two and she is fine. Other treatments did not work. She is great watching her diet. We do no preservatives, dyes, etc., and eat mostly organic food. If only we could avoid all stress too!!!

[Sangye]

That's great to hear, Trudy. So glad you've dealt with the other variables so well. :thumbsup: