TB and Wegeners

[MCC]

Hi guys,
I have to take izonazid because the doctors believe I've had TB in the past and they don't want it flaring up again with being on immunosuppressants. They've now extended the 6 months course of izonazid to 9 months for no apparent reason other than 'just in case'. I am annoyed about this as I'm sick of taking so much medication and was looking forward to stopping taking it around now.

I remember when I posted about taking this medication when I joined the forum some people said that it's quite common for people with wegeners to also be diagnosed as having TB but they don't really have it. I was wondering if anyone has any info ot good links I can show my doctor please? (I can't find the old posts as 'TB' is too short to search).

Thanks.

[pberggren1]

I have had Wegs for 7 years and was just diagnosed with TB. I started on isoniazid, rifampin, and ethambutol for 9 months. The meds seem to make me feel very tired and exhausted and feel like crap. Do you feel like this being on isoniazid?

[Barbara1966]

I was also misdiagnosed with TB, and very annoyed because no one was listens what I was saying, to the point that I stop the medication on my own then changed the doctor.
Find yourself a GOOD pulmonary doctor because there is one are on Ct scan that trained eye know the difference or doctor who specializing in infectious diseases.
Good luck

Barb

[pberggren1]

I'm just wondering how one can be misdiagnosed with TB?

I was told that a sputum sample came back positive for TB. I asked my new doc about it and he said it was probably looked at under a microscope and saw TB bacteria. Does this sound familiar to you guys?

[MCC]

I have had Wegs for 7 years and was just diagnosed with TB. I started on isoniazid, rifampin, and ethambutol for 9 months. The meds seem to make me feel very tired and exhausted and feel like crap. Do you feel like this being on isoniazid?

Sorry to hear that Phil. Do you have active TB at the moment then? How are you feeling?

I haven’t had that with the izonazid no, I think I’ve been lucky, althoughl possibly I have less side effects because it’s a lower preventative dose rather than treating me for the active disease. I’m not sure what the actual dose is, I’ll have to see what it says on the bottle.

Did your doctor tell you that you must not have alcohol whilst taking it? Ideally it’s none at all, but 1-2 glasses of wine a week is allowed.

And are you taking pyrodoxine (Vitamin B6) too? Izonazid depletes this vitamin and can cause tingling in your hands if not taken at the same time. If they haven't prescribed this to you I would ask about it.

[MCC]

Thanks Barb, I've been seen by infectious disease doctors. I tested positive for TB on a 'Quantiferon-TB Gold' test.

[pberggren1]

I just found out I don't have TB.

[elephant]

Wow Phil so what is going on if you don't have TB?

[Jack]

More info required Phil. ;)

This TB / Wegener's link seems to come up on these pages so often. I'm sure that it can happen, but it must be extremely rare. For the most part, I'm sure it is misdiagnosis, but I don't know enough about it to know how this can happen.

[pberggren1]

I got a call from the TB Clinic and a lady said that the culture was not TB but that they put me on the TB meds because the initial slide under the microscope looked like TB and they just wanted to be safe.

[Eddie]

I was diagnosied with Wegners on 12/31/09. My mom had TB when i was 9, so i test positive for TB. i was put on INH for 6 months,also extented for 3 more months. my ANCA test on 4/23/10 was at 14,336.
6/23/10 ANCA 1485 alot better,but my liver showed some abnormalities. know i've been put on Leucovorin Calcium i start that on monday after my metho, any insight.

[elephant]

Wow Eddie that is a high ANCA test. Do you see a wegeners specialist? How long have you been on methotrexate? Are you on prednisone?
Welcome!

[Eddie]

Thank you,
Been on Mex,24 weeks, 6 months on pred 10mg now.
i see dr.Merkell B.U med center also rhum spec and my prim care who is the one i owe my life too.
im so glad i found this sight. i need all the talk i can get, i'ts hard because no one seems to understand
friends,family.i feel im all alone.so please chew my ear off.
thank you,
Eddie

[Jack]

One thing for sure Eddie, everyone here DOES understand so feel free to ask all you want or just vent your feelings.

[JanW]

That's true, Eddie, and you are in the care of a WG specialist, which puts you ahead of many WG patients, so you should feel comforted by that.

[elephant]

Eddie so glad to hear you have a WG specialist! Keep venting, your safe here. :)

[Eddie]

Wow, Thanks guys!!!
That means alot.
same here, FYI, i talk alot, just kidding,

[Barbara1966]

My was positive because I was vaccinated as a child