I am so so upset and have been having a lot of trouble in the past few months with extreme agitation, forgetfulness bad!, driving out in front of trains, disorientation, getting lost, confusion, focusing. I feel so jumpy I've been yeling at everyone over little things because they just don't understand that I can't think for them anymore, I just can't handle it. My chest hurtst and it feels they are driving me into a heart attack. My left leg is swolle a little again, usually a sign things aren't going great. My ALTs are normal, from elevated slightly, now they are going down, my thyroid is normal test wise but I always have high TPOS (thyroid antibodies), which my old endo says can cause nerve problems. They should have been careful on the interferon with the TPOs.
I feel like I did on interferon on isoniazid, which trashed me permanently in some ways. My TPOs feel high but theywon't test or treat me for it. My rheumie and Mayo talked about all kinds of things, auto immune this, endocrine that. I do meet the criteria for polyglandular dysfunction. And my gallium scan says sjogrens or lymphoma but since thereare too many places to bx, I went with sjogrens.
Anyway, 'm nuts and recently mydoc gave me a dosepack for my hip. I was afraid to take it because usually steroids keep me awake all night, etc. I got so so bad my lupus friends said take it, it my be just the thing. ANd it worked! For some reason I lost a gallon or two of water, my leg went down, and my heart got normal and my brain cleared and I was relaxed and calm and sane.
Well, it was short lived and so when it came up, everything came back worse including new spidering in my face and all the water back. So then I held out to my rheumie appt. and told hmi what was happening and told him it went away with the steroids and he was tellingme there was no reason to give me steroids (even though he'd given me plenty before) and that I needed a shrink. I told him he'd been seeing me for two years and Ive been normal, why now just because this stupid isoniazid is making me crazy. WEll he said, your liver is fine, you tests are all normal. Well they were high now normal whichis what they did when I got fibrosis, my ALT was 0 at one point so I wasn't gonna argue.
Then he pointed out all my allergies to psych meds andI told him those were allthe drugs they tried to give me on interferon that I developed allergies too, bad allergies, and dementia and very bad side effects.
I figure why should I go to a shrink and take a bunch of liver bad medicines when I can simply stop the isoniazid and be normal! One of the side effects is psychosis.
I told him all I wanted was a prednisone taper to gt my mind back and he kept going back to the blood work done a while ago before this started happening. After calling my dad in the treatment room, I got my prednisone, thank God.
Does the liver do this? Why do we go nuts on interferon? Why does the prednisone help the encephalopathy? Am I right that the "normal" lfts can be signs my liver isn't working? They KNOW isoniazid causes temporary fibrosis in most people, and I have very severe steatohepatitis. Does prednisone fix encephalopathy from the liver or mayb its my pituitary or TPOs bothering me? I just wonder if anyone had an idea why the prednisone immediately helps. I need to get the tests for autoimmune liver disease, not the blood because I have P-ANCE which is the one for AH1 but I think I have a vascular liver disease like PSC because steroids are the only thing that helps.
Any help or support would be great. Now, this one great doc is starting to write me off. ANd there are no good endos here. I have such significant endo problems, and I just can't find anyone good, even Mayo doesn't want to do much.
When I threatened to go off isoniazid, they freaked and gave me steroids. They said that I wouldn't get well if I quit. I thought the whole thing was optional and for "latent" disease.
I just can't handle any of this. I'm so sorry to whine. I'm just so confused and want to know why the prednisone works? Nothing else, probiotic yogurt, diet, milk, nothing else helps.
Any help or anecdotes would be appreciated, I'm ready to have them lock me up to see that it works when I take them.
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids