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AIH- now drug induced diabetic.....

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Posted 5/10/2007 4:38 AM (GMT 0)
Just venting.... I am so frustrated.  Got sick in Dec/Jan this year. I was under extreme stress.  Working all day, and then staying up most of the night with my dog, who all of a sudden became epileptic.  I slept on a mattress on the floor next to her in case she had a seizure in the night.

It is amazing what stress can do to your body.

Being treated by a liver specialist.  Have been on pred. since Jan, could not tolerate Imuran.

Now my blood sugar is nuts.... My primary Dr. was not much help. On Insulin, but not under control. Went to the endocrinologist last week, he took lots of blood, and sent it for testing to see if the diabetes is drug induced or perhaps autoimmune also.  Maybe my pancreas got attacked along with my liver.  The blood sugar thing is making me crazy. Its very high at night and in the am... 250-300. and late afternoon 130-150...  I am always tired. 

Everything is connected.... liver counts are up cause of the high blood sugar..... can't lower the pred till the sugar goes down.  Blood sugar isn't under control.

Sent blood sugar results to the Endo. today, he will probably up the Insulin tomorrow.....

So i guess its a toss up which is doing the most damage to my system now.. the liver, or the Blood sugar......

I am scared about both..... The sugar is dangerous, and my liver is still probably being damaged....

Its so frustrating........

Posted 5/11/2007 10:37 AM (GMT 0)
Itsme

I can hear how frustrated and scared you are. It seems that once things begin it feels like a roller coaster that is out of control. I am so sorry that you are having to deal with all of this. Will keep you in my thoughts and prayers that things will become more tolerable for you.

Lucy
Posted 5/27/2007 4:22 AM (GMT 0)
My mother was put on steroids for bronchitis and almost immediately started having problems with her blood sugar. She is now diabetic and wears an insulin pump. She also had a heart attack related to the diabetes because she was in denial for a long time and didn't control or watch her sugar. Now, whether she was already having some issues before the steroids and they just brought them to light, who knows. She swears to this day she is diabetic because of them (steroids). I believe there are even some things going around on the web that support this theory.
Posted 6/2/2007 12:35 PM (GMT 0)
Hi Itsme,

It's been a while since you posted. Just wondering how you are doing? I'm hopeful things are more under control for you. How's your dog too?

Take care,

Dany
Posted 6/6/2007 1:26 AM (GMT 0)

hi dany,

Thanks for checking in & asking how I am doing. 

Things are somewhat better now, blood sugar is going down, and I don't feel as tired.  I have a Dr. appt next week for more blood work. Hopefully I can lower the prednisone again.  You asked about the dog, unfortunately we  did put her down in January.  I did everything I could for her.  The stress put me over the edge.  As stupid as it sounds, I would probably do it over again.  She was a great dog, we understood each other, and I would do anything for her. yeah Thanks again for asking....

Rhonda

Posted 6/6/2007 4:12 AM (GMT 0)
Hi Rhonda,

I am so sorry to hear about your girl....I really do feel for you. I had a dog a few years ago that I felt the exact same way about. We have a bit in common as we were both diagnosed at about the same time...and have had other sad things occur this year. I can only hope it gets better from here on in....
Good luck with the doc visit. It's crazy how you really start looking forward to those! I was going in weekly and then switched to every other week....then when it jumped to 5 weeks...I actually missed the doc! Still having bloods every other week but it's OK. I'm accepting it...not much else to do about it. I'm looking forward to a few months from now to see what meds I'll still be on....fingers crossed it'll only be the Imuran....my positive swing on that one...it'll only be one pill a day! I don't know what pred dose you're on but I'm down to 7.5mg and my face has definitely made an improvement! It does get better!

Take care of yourself...will be thinking of you,

Dany
Posted 6/6/2007 11:17 AM (GMT 0)
Hi to both of you

Glad that you both are doing well. Congrats on lowering the pred. I have not been able to take imuran, made me extremely fatiqued and ill. So currently I am maintaining on Urso and pred. Also had some swelling and fluid retintion that required taking two diuretics. Have either of you had that problem? I have seen others talk of fluid problems but not with AIH.

Take care

Lucy
Posted 6/9/2007 2:24 AM (GMT 0)
Hi Lucy!

It seems that a lot of people have had trouble with Imuran. I guess I'll see how it goes once I'm off the CellCept. June 21st is the last day I take it then I'll fly on with Imuran and Pred. We'll see how the liver likes it and hopefully hit the wonderful dose of 5mg of pred!!! Very much looking forward to it ;-) Hopefully, I don't get ill as I seem to be dealing with it fine for now.
How much pred are you on? The only real swelling and fluid retention I had was when I was at the higher pred doses. My "cankles" (calf like ankles) only went away after I got down to 10. It was a gradual decrease in swelling with the weaning. At 40mg, by the end of the day my knees were about double size and my ankle skin hung over my sock a bit like a muffin top! The water pills didn't help at all with getting rid of it so I stopped them. Hopefully, your swelling is purely a pred thing and as you decrease, which I'm assuming is your doc's goal, then it'll go away.

I have no idea what Urso side effects are. Why doesn't your doc have you on an immunosuppressant? Have you asked about CellCept...I think it's great. Didn't have any side effects from it. Since you couldn't take the Imuran, I would have thought they'd try that as you should be able to wean off the pred better with them as they are considered "steroid-sparing" agents.

Hope all is well!

Take care,

Dany
Posted 6/9/2007 12:54 PM (GMT 0)
Dany

I am currently on 10mg of pred a day. The Urso really has no side effects. I think it is a synthetic bile because my ducts are not producing due to the damage. I am certainly hoping that as soon as they can find other things I can take that the pred will be lowered even more. I am not sure why my hepatologist hasn't tried other immune suppressants since the Imuran didnt' work out for me but I know he is wanting another biopsy done in the next couple of months along with some other tests.

I will keep my fingers crossed that the Imuran works well for you and that you continue with your progress

Take care and keep positive

Lucy
Posted 6/10/2007 12:21 AM (GMT 0)

DGinSD said...

Good luck with the doc visit. It's crazy how you really start looking forward to those! I was going in weekly and then switched to every other week....then when it jumped to 5 weeks...I actually missed the doc! Still having bloods every other week but it's OK.
Dany

Hi Dany, 

I was amused by your posting. How true!!  We actually miss the blood tests and doctors visits.  I am now having bloods once a month and visiting my heptologist every three months. I visit my GP when I need a script for meds or referral for blood work.  My GP commented last week that he hadn't seen me for a while, just my blood results, which reach hime via email each month.  He must be missing me too.  Both my docs phone me if there is any problem with the bloods but this hasn't happened for over eighteen months now.

I haven't met you before.  I have been busy at work and have not visited the site for about three weeks.  I have had AIH for just over three years, at least that's when it was diagnosed.  I have just lowered to 8mg Prednisone and take CellCept. 

Looking forward to catching up with you again when school is less busy.  We have mid year break at the end of June.  (I am in Australia)

Take care.

Marg

 

Posted 6/10/2007 5:01 AM (GMT 0)

Hi Marg!

It's very nice to meet you.  My bloods go straight to the doc via email as well.  Then I email or call to check in.  Luckily, my hepatologists and GP are in the same hospital and I simply have a standing order at the lab for bloods so I don't have to see the GP too.  I will need to contact the GP though (they actually call them PCP--primary care physicians here----USA, I'm in San Diego)...I'm used to the GP term as I am Canadian.  Everywhere else seems the same except the US!  Anyway, I have developed these hyperpigmented spots on my upper torso.  I think it may be vitiligo, it's supposed to be normal with autoimmune disorders.  Anyway, there's plenty O' cancer in my family and with the meds, I've become paranoid about it, so I'm going to request a referral to a dermatologist.

I'm relatively new to the AIH world.  Diagnosed in January of this year.  No cirrhosis, just severe cell loss.  I don't have my biopsy results but I'm going to ask for them...I like knowing specifics!  I'm a research associate.  I work for a very small biotech company doing neurogenesis research.

It's great to hear your bloods have been fine for the last year and a half.  So the flares you mentioned in another post must have been early on?  When you do flare do they shoot the pred way back up again?  I'm a little worried for when I come off the CellCept and am only on the Imuran if it doesn't work as well for me.

Good luck with the new dose and all the report writing you have to do! 

Take care,

Posted 6/12/2007 9:05 AM (GMT 0)
Hi Dany,

To answer your questions, firstly I flared after about 14 months. It was the first time I reached 10mg Prednisone with Imuran. Back on the high dose Prednisone, (I think 25mg again), still with Imuran. At 7.5 mg the next time, the bloods went haywire so back to the high dose again. This time the heptologist changed Imuran to CellCept and i haven't looked back.

CellCept is not commonly used here. My heptologist has to get special permission every six months for me to get it at the low cost. I pay $24.90 per month for a medication that should cost $550.00 per month. What is the cost in US?

Now back to my marking - then reports.
Take care.
Marg
Posted 6/13/2007 2:58 AM (GMT 0)
Hi Marg,

I'm very happy things are so much better for you now. I hope the 8mg works great and you're liver likes the slow decrease. Good to know about the flare on Imuran and pred...had your bloods normalized at that point before the flare? Mine have been normal for a couple of months....the liver took to the aggressive therapy of my hepatologists. I drop my CellCept next week so I suppose the following few bloods will be plenty important! I just scheduled a trip home to Montreal in July so my daughter and I can spend some time with my mum when her radiation treatments start...I will be sure to bring extra pred just in case I hear from the hep doc and need to bump up! I really hope not! One thing you mentioned in your update about the Lexapro was how once you decreased you seemed to have a harder time coping with negative situations. I don't feel depressed most of the time but I feel like when something does come up, I have a much harder time dealing with it and finding the positive (which I happen to be a true optimist!). I may speak to the doc next time I go in if it keeps up and try an antidepressant and see if that helps.

As per the CellCept, I have pretty good insurance but since it's a brand name I pay $35 a month. I just checked my receipt and without insurance it would be $175....so it appears to be PRETTY expensive by you but you are definitely getting a good deal!

Good luck with finishing up work! I assume you have a good break for the summer? My daughter just finished school today. She's off till mid August!

Take care!
Posted 6/15/2007 7:23 AM (GMT 0)

DGinSD said...
Hi Marg,

Good to know about the flare on Imuran and pred...had your bloods normalized at that point before the flare?


Good luck with finishing up work! I assume you have a good break for the summer?

Take care!

Yes Dany.  Things were going really smoothly, although the bloods were not as good as they are now.  Perhaps the drop in Prednisone was too early and too quick.

Winter is approaching here in Australia.  It's getting really cold as you begin your warmer weather.  It has rained for the past few days and it's expected to continue into next week.  This is good for the garden and to fill our dams.  The dam that supplies sydney's water is only about 35% full. But not good to dry the washing.

I too used to be the eternal optimist.  A few things happened - my sister passed away(from a different autoimmune disease) , I couldn't lose weight,  I'm getting old (older!! says the optimist), and more lines and wrinkles,  I worry about retirement (my husband has retired already) and just having a chronic illness (not to nebtion the effect of PRednisone!!!)-  all these things built up and I found myself crying constantly, sometimes for no reason at all, and I wanted to stay at home all the time - not meet with friends and socialise.  This continued for several months before I asked for help.  I kept thinking I am a positive person who would never become depressed - but the Lexapro has helped enormously.

Take care

Marg

Posted 6/15/2007 2:46 PM (GMT 0)
Hi Marg,

Thanks for your reply. As I hit submit I realized you were on the 'other' side of the planet facing a different season! I'm in San Diego....and we really don't have many seasons. I have difficulty remembering when it's winter in the Northern Hemisphere!! Rain is a good thing! Being in a desert-like climate, we don't get much of it.

I think I will request some help. I don't think a therapist would help as I seem to talk enough ;-) I'm sorry to hear about your sister. Which autoimmune disorder did she have? I have 2 sisters with MS. Both are doing well.

Stay dry and happy! You are a great help!!!!

Dany
Posted 6/18/2007 12:50 PM (GMT 0)

DGinSD said...
Hi Marg,

I think I will request some help. I don't think a therapist would help as I seem to talk enough ;-) I'm sorry to hear about your sister. Which autoimmune disorder did she have? I have 2 sisters with MS. Both are doing well.

Hi Dany,

It's a good idea to get help if it's depression.  I feel so much better after months of being miserable.  Ask your doc next time you visit. 

My sister had Wegener's Granulamatosis (WG).  She was diagnosed about ten years ago.  The first bout was not too severe and after about 18 months she was completely off all meds (which is common for WG - unlike AIH where I think some medication is required forever).  A flare up about three years later was worse than the first time, this time her kidneys were badly effected - again medication corrected the problem and again she was completely off all meds for sometime before a third time the disease returned.  This time with a vengence.  It attacked her kidneys (had she lived she would have needed dihalisis!!!) and her lungs.  She was on a respirator for a few months before she died, and finally a brain stem stroke resulted in such damage that her husband had to make the hard decision to turn off the life support.  She died Jan. 06 after 9 years with WG.  sad (age 55) Not many people die from it.  She was one of the unlucky ones.

Although we did not live near one another (she lived in Melbourne, Victoria) about ten hours away by road and 3 1/2 hours flying (most of this on the road getting to and from the airport) we were very close especially once I was diagnosed with AIH.  She was such a support - always there to listen, always gave the advice I wanted to hear, just a great person to know - We would compare the Prednisone doses, the side effects, the weight gain, the never-ending diets, our kids, our husbands.   I miss her a lot but the old saying "time heals" is certainly a true one. 

Thinking about her death makes me aware that taking 8mg or less Prednisone and CellCept for the rest of my life is nothing compared to not being here at all.  Although I don't think like this all the time. 

It's still raining.  And expected to continue for another week.  I'm not complaining though.  I'm so busy with school reports I haven't got time to even look outside let alone go out.  I can hear the rain on the roof as I post this reply.  It's a great sound!!  And the garden must be enjoying the drink.

Take care. 

Marg

Posted 6/24/2007 12:21 AM (GMT 0)
Hi Marg,

I really am sorry to hear about your sister. It sounds like you had a fantastic relationship with her. Time does do wonders on healing. As well, illness and death puts LOTS of perspective into life and how we handle/treat things. All my family is far but I have great support at work and through friends. Thanks to the internet and cell phones, I am in touch with my mom everyday. She's great as she can empathise with all the meds and bloods....

Well, I stopped the CellCept and have been on Imuran and 7.5mg of pred for a day and half now....time will tell how it goes. Bloods are next week (and every other till I hear otherwise). They are keeping a good close eye on everything. I have wonderful docs and am very grateful for them.

Looking forward to our vacation in Montreal to see mum. Her hair has started falling out rapidly so she cut it super short and got a wig. Apparently, it's the most beautiful wig! I had told her I'd shave my head in solidarity but since she didn't end up shaving hers, she asked that I just cut it super short too if I feel the need to show support that way. I've received mixed thoughts from people about my plan to lop off my hair for her. She's 3000 miles away and I can't be there for her regularly to go through what she's going through and I feel this, apart from flying up for my little 10 day trip) is the best I can do. I am sending a cleaning crew over to have a good once over on the whole apartment, walls and all, as she and my stepdad are smokers (she stopped due to the lung cancer and he's down to half--kudos to them). It should help them to stay off the cigs if the house doesn't smell...I hope!

Anyway, that's all that's new. I'm sure the garden looks lovely! We end up missing and forgetting what rain sounds like here but it is wonderful when it finally happens!

Take care to everyone out there!!!!!!
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