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does anyone have GI problems caused by lupus?

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Posted 11/20/2009 5:15 AM (GMT 0)
hi all hoping everyone is doing alright. I have been having some very bad gi problems severe nausea cramps going on about three weeks now I had a cytoxan treatment today so I can only think that this week will be miserrable!!! I have been to a GI doc before he said it was a stomach contents emptying problem evidently my stomach hold on to food for to long well he gave me reglan noway! can i take this med I have anxiety anyway and it makes me very jittery but I have been doing ok with my stomach for months and all of the sudden 3 wks ago bam woke up really nauseated and it has not went away since does anyone else have this? should I try another doc?could it be a flare that is affecting the GI system I dont know what to do I have been thru sooo many doctors they all have a different opinion my rhumey gave me zofran to try today phenergan does not work anymore I hope this does but it just feels like there is a real problem in my stomach you know how you can just tell when something wierd is going on? any advice would help a great deal thanx soo much...............nona
Posted 11/20/2009 5:42 AM (GMT 0)
Nona,

I had a lot of nausea when I was in a severe flare a few years ago. I do have gi problems but they're a result of the meds I take, not lupus. Check with your pharmacist and find out what might be causing some of your problems. High doses of prednisone can cause ulcers, plaquenil can cause gi distress, and I'm not familiar with some of the other meds you take.

I hope you start to feel better soon.

Pat
Posted 11/20/2009 3:08 PM (GMT 0)
Hi Nona..Were you diagnosed with the gastroparesis as well? I don't have Lupus, but I went through the test for the GP and no cause was found for mine (I have RA) but was told mine was idiopathic.  The Reglan also made me jittery and on edge and gave me horrid migraines, and I no longer take it.  If I eat things I'm not supposed to such as too much bread, or large quantities of food, or what others would consider normal!  My belly just can't keep up with the amount of food that I sometimes want to eat and that is when I get into trouble! I experience the stomach pain, upset, and nausea and often take something for my queasy stomach.  When this happens to me, I end up on a diet of smoothies, broth and such until everything can pass through, otherwise more food will just get backed up. I also stay away from veggies, fruits(with skins) and such because if you have GP they can't be easily digested. I really miss salad shakehead I'm sorry you have this awful tummy issue, but one other thing I find helpful is to eat early, my family and I have "linners", my little girl came up with this idea since I can't eat later in the evening, but I can have some type of a normal meal around lunch time, so if we go out to eat, we go around 1 or 2pm, and it is my dinner, so she calls it my "linner". Kind of silly, but it seems the food has more time to digest, rather than eating at 6 or 7 and then trying to head to bed at 9, I found it made my stomach hurt less.

I hope you feel better soon.

Posted 11/21/2009 1:49 PM (GMT 0)

Hi! Nona and Everyone,

I get flares when I have to endure 3-6 weeks of mucusy, bloody, floating, rolleyes   diarrhea. And just when I decide to take a sample to the dr, it goes away. I am very med tolerant, and I seem to cycle through 6 wk periods of joint pain, then ataxia, dizziness and acute muscle weakness and falling, then I get a lower respiratory infection, never just a cold, enjoy maybe a week of feeling better, and then it all starts all over. And the never ending exhaustion is ever present. The bummer is not making it to the bathroom. Which has happened 3 times. I put spare sloppy pants, and adult incontinent briefs in my trunk but live in fear the time will come when I can't keep it a private horror. smhair When I was in the hospital the last time for 10 days of antibiotics, they offered me compazine, reglan and zophran in any combination I thought helped the best. I like asking our pharmacist what he would recommend if I were his wife or daughter.

Hope you feel better soon,

hugs, suetoo

Posted 11/21/2009 3:23 PM (GMT 0)
Nona,

I have gi problems from top to bottom.  One of the more interesting things is that I do not absorb meds and nutrients properly.  I think it has improved over the last 4 years but there is no question I have problems.  On a regular basis I get colonoscopy and endoscopy exams to monitor my problems. 

Here is what one source says about lupus and gi problems:

Gastrointestinal Complications

about 45% of SLE patients suffer gastrointestinal problems, including nausea, weight loss, mild abdominal pain, and diarrhea. Severe inflammation of the intestinal tract occurs in less than 5% of patients and causes acute cramping, vomiting, diarrhea, and, rarely, intestinal perforation, which can be life-threatening. Fluid retention and swelling can cause intestinal obstruction, which is much less serious but causes the same type of severe pain. Inflammation of the pancreas can be caused by the disease and by corticosteroid therapy.

Meds can also cause problems so with some of us you can take your pick for blame.

Bill

Posted 11/21/2009 5:40 PM (GMT 0)
Hey Nona, I had some replica symptoms to what you were describing from about Feb-September. I will say that it took about a month but the cytoxan seemed to help my syptoms...actually I havent' had any stomach issues for quite awhile. I am supprised with Cytoxan they put you on phenergan. I thought they usually used the stronger drugs. I am on Zofran and I love it. I usually get a good dose of it an a IV about 30 min before the Cytoxan starts and then I have the Zofran the dissolves under your tongue and it works amazing. How are you doing after the Cytoxan? Is the zofran working for you? How many Cytoxan treatments do you have left? I just found out I have 4 more left for a total of eight...So I am half done!!! Thinking about you and hope things are tolerable for you!!!
Posted 11/21/2009 10:04 PM (GMT 0)
Hi Nona..on another note, not related to the GP, the times I have been prescribed the Medrol dose packs, my GI issues, have diminished greatly (bloating, pain etc) I'm not sure if this helps at all, but I thought I would mention it.
Posted 11/24/2009 11:29 PM (GMT 0)
Hi all and thanks so much for all of the advice I just started on the zophran today we will see if it helps although nobody told me to let it dissolve in my mouth,so I took it with water oh well... hope it still works I was appalled to find out how expensive this med is 3.00$ a pill! it's worth it if it works! Amy I have been doing cytoxan for about a year and a half no end in sight, I have had so many organs invoved heart , brain , liver , kidneys I can only speculate that thats the reason for the long treatment I take it every 4 weeks andI feel so sick for about 4 or 5 days afterward I hope this new med works I know they give it to cancer pts who do chemo so maybe it will please pray for me I am so sick and tierd of throwing up!!!!thanx so much all of you your always in my prayers........................nona
Posted 11/25/2009 9:01 AM (GMT 0)
I am going to suggest asking for something like nexium to protect your stomach from some of your meds. some of the meds in your list are hard on the stomach. I also suggest a GI doctor or a new one if you already have one.
Posted 12/12/2009 12:53 PM (GMT 0)
My husband recently woke up with severe stomach/lower abdominal pain and we had to take him to hopsital by ambulance as he was in such severe pain. He had a perferated diverticultis. The surgeon told us that high doses and long term usage eats away at your colon. He had to have a portion of his colon removed and has a colostomy. They are telling us it is reversible after it heals, but he has been down since August 14, and they have changed his meds up so much, he has lost 70 lbs, and is now in rehab. He is still very weak and cannot get out of bed without two people lifting him and getting into a wheelchair to therapy.

This has really been a real mystery, and they do not have a diagnosis as to what is causing his weakness. He cannot swallow food and also has a feeding tube now. Too many complications to identify, I guess. They initially thought he had Guillian-Barre Syndrome, because his muscle enzymes (cks) are so high and there was some neuropathy. Did all this happen as a result of the surgery? We just don't know.  He used to be the "life of the Party" always laughing and seeing the bright side of things. He has really sunk into a state of depression and is starting to lose hope.

I do not know if this is a common thing with lupus and RA,but is the most mysterious disease and complications I have ever heard of.

We feel so lost. Tons of dr's and neurologist have been involved and they are telling us he is really an Enigma........

lupus/ RA- prednisone, plaquinel, prevacid, lortab, IVIG (intravenous), imuran, B-12, lexapro.

Posted 12/12/2009 2:47 PM (GMT 0)
Hey Nona, I was just curious if the Zofran worked for you. Yowsers, I had no idea it was $3.00 a pill. Phew, that redicioulous especially since I use it like candy after my treatments, I am sorry to hear that you are on Cytoxan long term. I have no idea how you do that. I know for me, the side effects get worse each treatment! Have you ever heard of anyone using Lupron to protect their overies? My rhumey has put me on the shot once a month to put me in Medical Menopause...Its working but the more I talk to people who are using Cytoxan most of them have never heard of it? I hope these days find you doing better!!! Been praying for you
Posted 12/15/2009 1:24 AM (GMT 0)
Hi Nona, I have all kinds of troubles with my stomach. I hate it, the nausea is bad, the pain and tightness and cramps and just feeling rough happens all the time. I use Nexium and that helped with the Acid Reflux but not the rest of my stomach problems. I use a magic bag heated in the hottub and that helps.  Hope you get feeling better.
Posted 12/22/2009 7:20 PM (GMT 0)
HI Nona, sorry to here your having so much trouble. I had GI problems for a very long time before I started any meds, so for me GI problems are what helped me to get diagnosed strangly enough... I hope you feel better soon!
Posted 12/22/2009 8:34 PM (GMT 0)
Hey aimsgirl,

I hope this isn't too personal to ask but are they putting you in medical menopause for something lupus-related?  If so, what's going on and what are the MD's thoughts behind it?

I'm a UCTD girl and also an RN so I'm a sponge as far as information on my disease and lupus is concerned.  Like I said, hopefully not too personal to ask.

Thanks!

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