Having trouble

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

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/18/2008 9:16 PM (GMT -7)   
Hi==
I"m on isoniazid for anti TB therapy so I can take lots more steriods. I'm not doing so well because I have diabetes, hashimotos, and liver disease. I'm having problems with neuropathy, vision, dizziness, anxiety and hallucinations, and mental confusion. I'm not able to post much. I just keep praying I can get through this because if I don't and I take immunosuppresants and steroids and my immune system gets worse and I get weaker, the TB can become active and my liver is so bad they might have trouble treating it, especially since I'm having trouble with this current lower dose therapy for latent TB. 
 
I was doing really good and do have lots more energy in the day, but after I take it around dinner time, the evening is rough.
 
To top it off, in March before the isoniazid, my thyroid was creeping up too high again and my doctor didn't even tell me or up my synthroid, so now it's probably alot higher and that's not helping things. The new neuropathy is a little frightening and unpleasant. I'm told it's the isoniazid hurting the nerves, and also blocking my diabetes and thyroid meds to increase the damage that way. I don't know what the threshold is for it, like how much is okay and how much is not good.  It's still very important I take it because like most prednisone and other steroid and immunosuppressant literature says, those meds can cause TB to become active, and it can be very very very bad.
 
So I'm just still toughing it out.  I like the increased energy in the day time.  I'm cutting out all red meat from  my diet to lower ammonia and limiting meat to one meal a day. I using protein smoothies with whey diet protein and its pretty good stuff--only one gram of carbs and half of all my vitamins.  I also have to avoid a whole new list of foods on top of low sodium, low carb, high protein, and Interstitial cystitis dietary restrictions. Oh well, I don't feel like eating anyway. But of course, I'm not losing any weight, even though I'm not eating.  I never do. Sometimes I think my body is a big tumor or something, because if it were fat, it would surely be gone by now.
 
Enough rambling.  I hope you are all okay and that this post finds you happy and well as can be expected. And don't forget to get a TB test at some point in your life, especially before steroids.  I have unique problems that make isoniazid harder, but most people, like my sister, love being on it for the increase in energy and weight loss and don't experience the side effects. My liver is just pretty bad with meds is all. 
 
Take care and just saying hi!
 
 
Love, Marji
--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


spirit1
New Member


Date Joined Sep 2008
Total Posts : 1
   Posted 9/18/2008 11:20 PM (GMT -7)   
i have lupus fibromialga

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/18/2008 11:53 PM (GMT -7)   
I'm sorry to hear that. I hope that you are not in too much pain and that you are getting good care from your doctors.
Love, Marji
--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


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/19/2008 7:23 AM (GMT -7)   
(((((Marji))))) I'm sorry things are rough for you right now. IT's so hard when a med works for one health problem but cause problems for another health problem you have. Hang in there.

Spirit, I wanted to welcome you to the forum.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/19/2008 8:33 AM (GMT -7)   
Oh Marji,
 
You're going through a lot right now.  I'm glad you updated us on your situation.  I think your new diet regime is wonderful.  I'm pretty much addicted to red meat, so I find your determination very honourable!!! LOL.  I couldn't do it!
 
You're in my thoughts and prayers Marji, and I really hope the doctors can get a grip on everything. Hopefully once your thyroid meds are adjusted you will feel some more improvements.
 
Blessings,
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),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Leta
Veteran Member


Date Joined Aug 2005
Total Posts : 590
   Posted 9/19/2008 2:22 PM (GMT -7)   
Hi Marji, Man do you sound like me but with the other medical stuff!! I am sorry you are having such a tough time. Hang in there my friend. Be on top of them and make them check your labs. After all, you are their client. Be adamate (sp) about it. They work for you. They are the specialists but you know how you feel physically, they do not.

Many hugs to you as we are still going through Mayo together. Which one are you at? I am in Arizona. I am going to post my email for a short time on my profile so you can get ahold of me if needed other than the boards. I hope to hear from you.

Hang in there, Leta
sle 01 w/autonomic 11/05, photosensitive 04/04, sjogren's 01, ra 01, fibro 8/05, sinus tachycardia 6/04, asthma 96, multiple allergies 6/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06-gone, TIA 5/06, Porphyria 5/06, Vitamin D def 4/07, Iron def ferritin 8/07, Chronic migraines 01.Meds- baclofen 40 mg, prenatal tabs, potassium, calcitriol 50 mcg, qvar, xopenex, singulair, plaquenil 400 mg, tramadol 400 mg, darvocet 100 mg, percocet 5mg, amitriptyline 10mg, chromagen, topamax 150mg,


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/19/2008 10:10 PM (GMT -7)   
Thanks Leta, I was just thinking about you the other day, wondering if you'd post. I hope you are doing okay. I'm at Mayo FL and I got told I don't have porphyria. They'd rather say I have some kind of mysterious autoimmune condition,like lupus, but with no definitive dx. I asked if the damage to my liver was causing some porphyria and of course they said no, but i think it does some. They don't test me for it.

Getting rid of the TB is helping and it will be interesting to see what I'm left with. I'm so sick of hearing I have autoimmune everything. Why? What is screwing up my immune system, why did this just suddenly happen when no one else in my family has it? It's just nuts.

I'm having more energy and sun tolerance while taking the isoniazid. Since coming down to meat only once a day, and eating more eggs (hard boiled) and the smoothies and vegetables and the occasional carb treat like a bagel or oatmeal or a sandwich. I'm doing better on some days. Then like the next day I'll be nuts after taking it. The morning after, once I wake up, is great, I feel great. I gotta get my labs monday, if they are done. Its funny when they are high, they act odd about giving them to me and I always have to say that "I know they will be way out of whack and some high, so don't worry, I just need them for another doc" and then they relax, like I'm gonna freak out. I'm already freaking out! So glad to hear from you!
Love, Marji
--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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 9/20/2008 12:58 AM (GMT -7)   
Hi Marji, I kind of got lost in your post (brain fog) but I havn't said hi to you in awhile and I just wanted you to know I was thinking of you. As for the meat once a week. I used to be a vegan. I never felt so good in my life. Than my doctor said my new born was going to need meat in his diet. So being a paniced my I listened to him. I wish I never had. I only weighed 139 lbs. the day he was born and I had the energy of 10 people.
Anyway I hope you can stick with what ever works for you. Hang in there
love ya
carol
 
Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 Did you ever know that your my hero?
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/20/2008 2:16 AM (GMT -7)   
Thanks, Carol. I'm really pretty much incoherent anyway, so your brain fog might actually make my post make sense! I'm doing these weight loss whey protein enriched smoothies and it is really helping. They give me 50pct of my calcium and all my vits and has antioxidants, probiotics, and fiber added and of course like a ton of protein. It has one gram of carbs which is one gram of sugar, probably a milk sugar since it is unsweetened. Then I mix it with frozen fruit and some yogurt and water or juice --my son adds jam-- and they really fill you up and I know I'm getting my nutrition. I got the stuff at Swanson online and it was really cheap compared to the stores. I got one can of pure whey protein for 7.99 but it doesn't have the fiber, I have to add benefiber. The other was like 29 bucks for this massive can. They were 70 pct off the regular price. Much cheaper than ensure or glucerna or whatever.

Anyway, it's helping I think. I hope you are doing okay. I haven't been out a whole lot. Been sort of spacey. And of course, no matter what I do, I"m still not losing weight. I still look pregnant. I let the guys carry my groceries for me even though I'm not though. ;)
Love, Marji
--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

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, December 08, 2016 2:54 AM (GMT -7)
There are a total of 2,734,552 posts in 301,223 threads.
View Active Threads


Who's Online
This forum has 151341 registered members. Please welcome our newest member, Emmyl00z.
153 Guest(s), 5 Registered Member(s) are currently online.  Details
Georgia Hunter, dbwilco, PA_grandma, AnnabelleLee, maldugs


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