H. E.? What happened to my wonderful rheumie?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted Yesterday 8:43 PM (GMT -7)   

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.


Love, Marji
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


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted Yesterday 9:08 PM (GMT -7)   
Hi Marji,
 
I can sense the urgency in your posting. I'm sorry.  I don't have a lot of experience with liver issues. But could the steroids be suppressing the immune system, therefore slowing down the encephalopathy?  Is your liver disease inflammatory?  Steroids do work very quickly which is one of the reasons why so many of us are on them.  They really work! 
 
I wish I had more to offer you Marji. This entire situation sounds very stressful.  I wish doctors would understand how valuable steroids are to us.  If you feel better being on them, then we shouldn't be having issues getting them!!  ARGH....
 
I'm sending you hugs and prayers Marji,
 
Love
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted Yesterday 9:23 PM (GMT -7)   
Thanks, Ginny. Its so good here and your advice and support helps me so much. I tried to find out something on the liver forum I go to and all I got was a lecture on how steroids were going to make me retain water and cause bone loss, and they just don't understand how when you need them, often the side effects are not there, because you neeed them. And so many of us probably have sluggish pituitary from AI disease or steroids anyway, so we don't have so much a problem on a normal taper that would make someone else hyper and feel weird.

Munchies is the one unavoidable stereotype for me, though I actually lose water (I go like a gallon or two after the first dose and my leg swelling goes down) and I don't gain weight because I am more active.

I know, the thought of beggng for steroids doesn't sound good to me. It makes me want to give up and just boycott all docs and meds till I get so sick they have to do something. Or just forget about them altogether. I'm so sick of them right now. I don't even think my rheumie remembers who I am, he's gotten really popular. I was one of the old patients.

Thanks again Ginny. If I can't get an answer in the next few months, and I'm telling Mayo too, and a real treatment plan then I'm going to give it all up and go off everything until I get sick enough they admit something is wrong.

I can't believe he went back on his own diagnosis. What a jerk. I thought he was one of the good ones. Maybe he was ahving a bad day, he gets one more chance.

I hope you are doing okay.
Love, Marji
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


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted Yesterday 9:36 PM (GMT -7)   
Hi Marji,
 
Yeah, you know, maybe he was having an off day, but that doesn't excuse him for the treatement he's handing out.  That's just not right.
 
The worst thing you could do is stop your meds.  I know you're mad!  But remember, you have lupus and you need these meds.  Maybe another appointment with your rheumy to explain to him how much the steroids help you is what you have to do. 
 
Try to get a good sleep tonight and face tomorrow with an attitude of, " Okay.  I have to take control of this, and I have to get well. I'm not going to let my doctors brush me off."  Go in to your appointments confident and knowing exactly what you need.  But don't go in with any attitude or "I'm pissed off". LOL.  That won't get you anywhere! 
 
Love you Marji, you'll be okay.  You will!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted Yesterday 9:48 PM (GMT -7)   
Right now my brain is literally burning. No fever, just feel the brain damage like I breathed in toxic fumes or something. It bites. I'm thinking about seeing if I can go back to the neurologist. Maybe some more different docs might help with this. To quote al gore, "its a waste not to have a brain."
Love, Marji
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


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted Today 1:06 PM (GMT -7)   
Sorry you're having such trouble with a formerly good doctor. I think sometimes when we suggest what we might need they get all hyper on us because "I'm the doctor". Hopefully he was having a bad day, and next time you'll both be in a different place and be able to have a more productive conversation.

Meanwhile, it is always helpful to have a backup plan - maybe time for a consult with a totally different rheumy, or who knows what. Once I went to a shrink who actually called the doctor up and told him that the meds I was on were proven to induce psychosis and that I didn't need to see him (the shrink) after all! (I switched drs anyway - if he doesn't know major side effects of drugs he's giving me I don't see much reason to trust him!)

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted Today 10:00 PM (GMT -7)   
Thanks Lynnwood! That cheers me up! When I see the liver doc, I will see what he suggests too, after all, they all have to defer to him on meds and if he feels pred might be beneficial tomy liver--which it always is, it reduces theinflammation so much--and less of a problem than other meds, he might help me too. I just have to keep it together. I wish I wasn't having so much trouble. I'm usually pretty laid back at the doctors unless its something I HAVE to bring up. My PC wanted me to go to Emory in Atlanta, its just so long a drive, mentally and physically I just don't think I could handle it, though I hear there are good rheumies there and in that area. Southeast ga is just kind of well, you may get lucky, might have real problems. sometimes I wonder what a really good rheumie would think, like just one visit. My good endo was horrified that they let me go without tx for so long, but she wouldn't take my insurance and I couldn't affored her. She understood though. Thank agains for the support andhope you are doing well.
Love, Marji
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

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 05, 2016 1:56 PM (GMT -7)
There are a total of 2,733,109 posts in 301,083 threads.
View Active Threads


Who's Online
This forum has 151235 registered members. Please welcome our newest member, johndoss.
391 Guest(s), 10 Registered Member(s) are currently online.  Details
martha, Gemlin, Bucko, waterbee, smlafleur, Mexlyme, Awake_, Tall Allen, Graytech, LanieG


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer