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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/8/2007 8:31 PM (GMT -7)   
If you can, you are doing better than me!  I don't know what is wrong.  Everytime about a month after pred, after I go through the painful cycle of becoming a werewolf again after being the beautiful princess, I get a UTI or some inflamation and irritation.  Now I'm back on penicillin and prosed again and hydrocodone and its not going away again.  I get an ACTH stim tomorrow, whatever that is, and its looking like I'm probably adrenal insufficient (Addisons) which is the next stage in polyendocrine deficiency.  In 24 hours I only went less than 16 oz though I drank more.  I don't want to have Addisons disease on top of everything.  I told my doc how wonderful prednisone made me feel and how I wanted to be on it all the time and maybe it wouldn't hurt me if I was deficient, and she said that even if I'm deficient and need it I can't take it, at least not all the time, they give me another steroid with less side effects (yeah, right, I probably will just turn into a man or something) anyway, if U can't P I sympathize, if you can then thank the Lord because at least that's working!  One good thing is that my new endocrinologist's husband is supposed to be a really really good nephrologist, so that's a good thing.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
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
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 11/8/2007 10:39 PM (GMT -7)   
((((((((((Marji)))))))))

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 11/9/2007 8:38 AM (GMT -7)   
Marji, I'm sorry you are going through so much. At least now you know you have a referral to a good nephrologist if needed. Not being able to pee is not a good thing. Good luck with your tests today and I'll be thinking about you. Let us know how things went when you are feeling up to it. ((((Hugs))))
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/10/2007 12:15 AM (GMT -7)   
Thanks Rosie and hippimom,
I got my ACTH stim test today, where they give you a shot of my favorite drug, cortisone, and then they measure your ACTH to see if it went up as it is supposed to once you have adequate cortisol, and so they know if your adrenals are working and its your pituitary that is messed up. I think my adrenals did work because I felt better than I have in a long time and I was instantly, like 15 min after the shot able to pee properly and felt so so much better, so it looks like its related. The bad news is that pituitary or adrenals I will likely have to take pred or something like it every day for the rest of my life and all of the wonderful side effects are bad for me because I'm not on and off, but on it all the time. My family doc said, "you don't want to be on that all the time, honey, the facial hair, weight gain, the bone loss, the cushinoid symptoms..." and she went on and on, but what if I do have to be on it every day? That kind of sucked, but I decided I'm going to be on as least as possible, if I have to, and make sure that there is no other way to solve the problem. This polyendocrine deficiency is real crap and common when you have liver and associated AI problems. For some reason, when the liver is bad and causes a hyperimmune system, it always seems to create antibodies against the endocrine. Weird, huh? Well, I stopped by the urologist because they are next door and they saw me with no appt. and they were real nice and gave me some detrol and tested my urine and I have no UTI, just AI bladder problem or possibly now its because of the adrenals, and he's pretty sure since I told him about the test. So that part is good that my bladder suffering may get better with endocrine tx. I feel good today, steroids! But I can't pee anymore again, although the detrol is working to keep me from trying all the time. I'm to the point I want to be catheterized and if they can't solve this I'm going to ask to be shown how to do it at home or make arrangements that when it gets bad, I can have them put one in for me. That pain is nothing compared to the other.

Sorry to run on and ramble. Thanks so much for the hugs and many many hugs back and I really appreciate the support, you guys are great and I hope that you both are doing well. I'm all geeked up so will peruse the posts!
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
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
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 11/10/2007 8:33 AM (GMT -7)   
Marji, it's amazing what those steroids can do and how much better they can make things in just a short time. I just wish the side effects weren't so awful. It sounds like you are starting to get somewhere with figuring some of these things out. I have to admit I don't know a lot about lots of the things that are going on with your endochrine system - it sounds pretty complicated.

Hang in there and I hope the trouble with peeing can be resolved - that has to be really uncomfortable.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; 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/

 

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sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 11/13/2007 1:59 PM (GMT -7)   
Hi, Marji. I'm sorry you're having the "pee" problem and not getting too many answers on the other. I don't know too much about the other problems you're dealing with, but I have felt like I've had a UTI several different times while tapering my prednisone. Most times the test results showed I did not have one. I have read that increased urination can be a side effect of tapering but I don't know what to say for the opposite, especially with you not being on the prednisone either. It's a puzzle! It sounds like you've got the docs working toward an answer anyway. Let us know what you get worked out. Good luck,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 9mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg, DocQLace 200mg, Flax Seed (milled) 2Tbsp

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