I saw mayo's infectious disease doc and he put me on isoniazid 300mg oid and vit B6-50 for side effects. In three days, I can now urinate normally, have less kidney pain and back pain, can walk without a walker, and have less abdominal pain. While he tended to deny that the TB spread, he did acknowledge that it could have spread at least to my cervical lymph nodes. My docs in 1993 said they felt it might have spread to my spine, but I was so scared about possibly having hepc that I focused on that, and they did too. Anyway, I'm feeling better, though maybe starting to have some side effects.
I tried to stop my plaquenil, since my AI symptoms are not as bad most of yours--I went without it for long enough, but my left leg swelled up tremendously and I got a tickling feeling in my chest and a real feeling of being unwell after about a week or so. I started back up and it went away. I guess my body is used to it anyway. I read somewhere it has an effect on heart stabilization, maybe that's what it does for me, I don't know. Generally, I should not be taking a tumor necrosis factor inhibitor, since that increases the chances of the TB becoming active.
I'm doing so much better so suddenly, I can only think the Isoniazid is the cause. I'm starting to have a few side effect feelings, though mild. Mostly like hot flashes and mild headache, but it is such a relief to have this kidney/uti thing not bothering me. Sorry to be personal, but its not a trickle anymore. It's back to normal.
I'm not taking all the meds I should be for extrapulmonary TB and since they won't test for it and don't believe I have it, I can only hope that the drugs they give me work. I'm on a 9 mo. course and I'm allowed to have my liver function tests go 5 times the normal high before we discuss discontinuation. While death from liver disease on this drug is not uncommon, I'm being tested monthly and believe I may incur some damage, but will make it through. I hope it is not too tough. The main reason for giving it to me was the need to give me steroids for endocrine and autoimmune--I was in full red faced flare at the appt. and markers up in recent tests. I really wish I had done this long ago when I wasn't so sick.
Well, thanks for being there and hope I can get through this. I should probably keep a diary. I know having liver disease, I had a lot of questions about taking it.
I hope everyone here is doing good. I look forward to being able to think and sit at the computer and read, etc.!
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn