TB anyone?

[Il_Randyb]

Just told I've got latent TB. Hmmm reading up and it seems TB can also has the same PR3antibodies show up. Can also attack kidneys, very similar symptoms to Wegener's. Now seriously doubting I have both Latent TB and Wegener's. Wondering if I was misdiagnosed and actually have TB?

2 TB blood tests confirmed it. Lungs are clear but the little I know about TB it can settle in different areas including kidneys and sinus areas. My background is I presented with huge congestion, coughing, sore throat. Acute kidney failure back in March of this year. Cytoxin but taken off after 9 weeks. RitoxinMab infusions, weaning off Imuran and prednisone now. Kidneys are slowly recovering but have had blurry vision since august, last week turned into double vision. Optic neuritis diagnosed.

anybody read much on the similarities between the two? I've read two medical articles that talk about misdiagnosis in both directions.

Thanks for any help

[Dirty Don]

That was my original dx I was told...it wasn't until someone on staff suggested a lung biopsy, just in case, and then sent biopsy to Mayo...they got it right.

[pberggren1]

You could have TB as well now. Are your lungs okay? How is your breathing? Coughing up anything?

I was diagnosed with something about 50 million times more rare than TB called Mycobacterium Abscessus Lung Disease in 2010. At first the sputum cultures came back for TB and they put me in isolation and started me on the meds then released me a few days later. Then I got a call from the lab in the next province that I didn't have TB but probably something much worse. So we waited for the final culture results to come back and then I got a PICC line in and started dosing my antibiotics from home for 13 months.

[Alysia]

In Israel every citizen is getting vaccines against TB in early childhhood so it is so rare that almost never being an option. isn't it the same in other countries ?

[windchime]

Just told I've got latent TB. Hmmm reading up and it seems TB can also has the same PR3antibodies show up. Can also attack kidneys, very similar symptoms to Wegener's. Now seriously doubting I have both Latent TB and Wegener's. Wondering if I was misdiagnosed and actually have TB?

I had TB of the lymph nodes in 2001 or there about. It was diagnosed with a biopsy of the lump under my arm. Docs thought it was cat scratch fever. The Wegs was not active at the time. I never had TB of any other organ but the lymph.

From what I understand TB is rare in other organs if it isn't present in the lungs. The TB blood test must be new as that wasn't available 20 years ago. Any chance of getting a biopsy to get definitive answer?

TB can lie dormant for years. It encapsulates itself and hides out.

Feel better and good luck with everything. Keep us posted. Have they put you on any meds?

[mr.g]

This may be more information than you wanted. In 1954 I contracted TB while in the army serving in France. After almost a year in a TB Sanitarium and 12 years of follow-up drugs I had not had a problem. I lost the use of part of my right lung. Now, the reason I mention all this is when I was dx with WG in 2010 I asked about my TB and my then lung problems. I was told that my chances of contracting TB was no greater than the general public. Earlier this year I had blood clots in my right lung so I asked again and was told the same thing. Since 2010 my WG drugs have included Methotrexate, Prednisone and Gabapentin for my neuropathy. I hope this info helps.

Ev

[Il_Randyb]

Thanks all,

My Wegs's is currently "Under Control", my kidneys were barely hanging on but now are improving and I might actually get to go off dialysis soon, YEAH!!!

TB Blood test was a result of checking on causes for my optical neuritis but the dos don't think my Latent TB could be the cause of my vision issues. I think it is medication related personally.

Anyway I started the TB antibiotics last Friday - be on those of nine months at least. Monitoring the liver for toxicity levels.......

Anyway I think things are improving for me and this TB thing is just one more issue to tackle head on. Gotta stay in the fight!!!



Randy

[windchime]

Good luck with everything. I was allergic to isoniazid and had to be on other meds for 15 months. Hope you don't have that problem. Under control is a new normal for us. :wink1:

[pberggren1]

TB meds can also cause vision problems.

[Il_Randyb]

Hey all an update...

My Neurologist took me off Imuran the other day.
Today he told me to stop the Prednisone end of this week

YAH!!!!!

Started Isoniziad last Friday
Optical Neurologist checked me over yesterday. My MRI was clean, she is suspicious of this TB test and has ordered a spinal tap to settle that one. I go in day after Xmas for that procedure.
Optical Neurologist says my optical neuritis is a swelling (not inflammation) that looks to be caused by cranial pressure. Said my pituitary gland is convex and that is seen sometimes with this, especially in young women who are overweight. I am not a young woman, nor am I over weight so go figure. She said it may also occur as a result of reduction of steroids - well that one fits!

Anyway I feel really great these days, Dr is suggesting that if my blood work is ok next month we will try to go without dialysis and see how I do.

I get the impression from him that the Imuran for me was not just a followup ro RitoxinMab but rather a third attempt to stop wegener's but i may have gotten the wrong impression. It was not until after our conversation and I thought about it that that idea settled in on me so I may have gotten the wrong impression.