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Hi everyone,

Like everyone else, i stumbled accross this site and have found it fascinating and very interesting and helpful. However I also have never introduced myself. I also need you help with something that is still bugging me and want some feedback if anyone has a similar experience.


My history (long and boring) is that i started as a child with an intolerance for starch that lasted until I was 4.
In those days they just kept shovelling it in until your body just got on with it. The result was that I have had heartburn throughout my childhood. I also was diagnosed with Hypoglycaemia at 17 and have an essential tremor. My father also had the heartburn, eventually type 2 diabetes and the tremor. In my 20's I experienced a curious incident where my eosophagal sphinctor closed for serveral days for apparently no reason. When it reopened, I suffered from that day forward with very bad reflux.

In my 30's (I have suffered with fatigue my entire life) I started to gain weight, the fatigue got worse, the reflux got worse, I developed weird rashes that people kept telling me was eczema, my fingers and thumbs were stiff and ached all the time, very dry skin, dry eyes, dry mouth, dry vagina. I went to my gp, who ran fasting insulin tests and made me run around with a glucometer for some weeks and diagnosed me as now prediabetic. She put me on metformin and sent me to a dietition who ended up removing vitually all starch type foods from my diet. End of gastric relfux. I felt a little better. Then we tried to introduce the low GI starches. My body wasn't having it. Gastic reflux straight back. I would bloat up, sore stomach, followed by days of sore and bloated colon, ending in diarrhea. I could virtually track the progress of the food through the system. Interesting thing is sometimes that would take 10 hours, sometimes it would take days, but always with the bloating which eventually went on for weeks at a time. I had blood tests for food intolerances, all negative. I was told by some lunatic i had candida, but after 4 courses of antifungals, he told me i was cheating on my diet (I mean, how could he be wrong?).

I was very dispirited with people telling me to try anything from aloe vera to liquid bat dung (someone's Granny did this) and generally looking at me like i was neurotic. Only my husband kept telling me to keep asking. He had a friend who was misdiagnosed for years and died at 42 of an obscure autoimmune skin disease. I eventually went very reluctantly to my husbands gp, who turned out to be fantastic. He was so sympathetic and ran a huge group of blood tests, which threw up a positive ANA 1:160 titer, speckled, and a positive rheumatoid factor. he sent me to a gastroenterologist where i think I blundered.

I knew what my fasting insulin levels were and I asked him what he thought might be wrong. he told me it might be lupus but I was too old (37 at the time) and that my ANA titer wasn't high enough. He thought it was IBS, although I have never been constipated and that my gastric reflux was stress. He then performed a gastroscopy and a colonoscopy, which showed a gastritis of unknown origin with a hiatus hernia and microscopic colitis.

He prescribed a proton pump inhibitor for 2 weeks, told me i would never have gastric reflux again and that i must just take imodium for the diarhea. I was not happy and went back to my GP. He agreed and said he believed that I had an autoimmune disease, but was worried I might be misdiagnosed again, so started me on methotrexate and continued the proton pump inhibitor, as well as legalon (liver supplement) folic acid and calcium.

Within months, the rashes were gone, the sore fingers were gone, the responses to the food were reduced and the dry eyes and mouth were gone too. BUT after 11 months of treatment, I now have photosensitivity and for the last 3/4 months, my stomach is sore and hard all the time. I went back to my GP and he said that my stomach and colon is rigid and he felt it was time for a rheumatologist because you can't argue with the success of the methotrexate treatment, so i was unlikely to slip through the net, but it was now beyond his capabilities. I saw a rheumatologist who was again really nice. She spent several hours with me and diagnosed Mixed Connective tissue disease, Lupus, with Sjogrens and a suspicion of scleroderma. She put me on Plasmaquine (Plaquenil in South Africa) and started me on 2 weeks of prednisone 20mg a day, reducing to 10mg after 1 month, keeping up the methotrexate and other stuff.

When i went back after 1 month, I was still struggling with mood swings and had seen my gp, who diagnosed Cymbalta and Rivotril to help with the moods and the stomach pain. The Cymbalta has fixed the moods beautifully and either it, the rivotril, or the prednisone or all 3 are keeping my stomach simmering. I asked my rheumy about my stomach and she said it might just be stress and I must just wait for all the treatments to kick in. Which is what i am doing, but I am worried.
I don't see her until april and have had a really nasty unexplained flare of the stomach (it appeared to close again (I vomited food I had eaten the day before and there was no stomach acid in it) and blew up to such a size, i struggled to breath). I hadn't been outside and hadn't eaten anything aggressive, so where is this coming from? I gave it a day and it came down of its own accord, but i don't know what to do. i don't want to be seen as neurotic, but I also just don't see this as stress related. I have been going with my husband for counseling to help deal with this disease and have completely restuctured my life to reduce stress. Any suggestions as to a) what might be causing this? b) What should i do, if anything?

I am sorry to offload this longwinded story, but wanted to present all the facts. Please help if you can.

Thanks Rose
 

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Me again. Forgot to add this.

Sorry, I forgot to add this info (brain fog)

The results of the blood tests my rheumatologist did on the first visit were:
HLAB27 - Neg
Anti Cardio Lipin IGG - 6.5
Anti Cardio Lipin IGM - 1.7
Anti Cardio Lipin IGA - 0.3
Serum Creatine Kinase - 50
Serum Creatine - 68
EGFR -
 

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Hi Rose,
Welcome to the board. I am very sorry you are battling so many issues all at once. For lab values, you can get them at the LFA web site. www.lupus.org

You have several things that run similar to my experience. I have celiac disease which I have battled all my adult life. I also have some food allergies which add a bit more challenge. As long as I maintain the diet limits, I am fine. Are you aware that on occasion grain by products are used as a stabilizer in some medications, both over the counter and prescription? Since you are reacting again with the gi issues, my first thought was have you talked to the manufacturers of all the medications you take? I had this happen to me several years ago and it took threatening the manufacturer with a lawsuit before they would finally tell me what their stabilizer was. It turned out it was a form of wheat sugar.....gee, why did I get sick with ulcers in my intestines? Since you were doing ok, that would be my first stop for investigation.

I have been on methotrexate for nearly 17 years. I have been on high dose mtx, 70 mgs IV weekly, for over 11 years. If you are having reactions to that, you might ask the doctor to prescribe a rescue drug: leucovorin calcium. I take 3 tablets staggered in 18 hours. Basically it is a "pumped up" form of folic acid. Since mtx and folic acid are very similar in their chemical structure, the leucovorin will stop the action (neutralize) of the mtx on healthy tissues and protect them.

Chemotherapy drugs work on rapidly dividing cells, which cancer cells are. They also work on autoimmune diseases as the inflammatory cells are also rapidly dividing cells. With cancer, the rescue is not desired because the "bad" cells are wanted to be destroyed. With autoimmune disease, there is a need to protect healthy cells while killing off the inflammatory cells. So, a "rescue" drug for us is needed. For this reason also, a standard prescription taken daily of folic acid is needed as well.

Bear in mind that on methotrexate you may not show an ana. If it is doing the job, it may kill those off. If you have this tossed back at you....neg ana, bear in mind that there are some of us who have never had a positive ana. I have been dx for 20 years and have never, in my whole life, had a positive ana. I was positive anti ds dna, which is more specific for lupus than ana, positive acl, pos apls. So, just because you have a neg ana is NOT proof you don't have lupus. In retrospect, I showed the first symptom of lupus when I was 5. I am now 55. We lost my younger cousin several years back, and her lupus was almost identical to mine, but mine hit my lungs and hers hit her heart. She never did have a positive ana, and was tested over many years for it. At age 36 she died of her 10th heart attack.

Trust your instincts. With the recurrence of your gi issues, I would at least call your doc for advice on how to proceed. April is a long time from now and you need answers sooner not later.

Something which I have had good success doing with my doctors is to put my initial symptoms in chronological order. I gave a copy to each doctor for my chart files. Then, I keep a log of what has gone on since I last saw that doctor, and take a list of comments and questions with me. That way I made sure that we made the best use of the appointment time. My doctors keep those as part of my chart.
[Just as an aside.....I have a foster pup and had to take him to the vet. In order to not miss any of my questions, I wrote all the stuff down. She went thru the list, checked off each one as we finished it. Then, put it in his chart for keeping. I apologized for it being 2 pages hand written. She was very clear that it was much easier for her to go thru things that way, than have to do the followup calls later as they forgot something. So, it works for more than people doctors. :hehe:]

I hope this gives you a bit of comfort in that you are not imagining any issues....and there are others out there who have lived thru some of them as well. I would check with the doctor as to these new/recurrent issues.
Sally
 

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Hi Rose,

WOW, Sally has really given some great advice here and there is not much I can add. I am curious as to why you mention possible Scleroderma? Did you or have you tested positive for SCL70 antibodies?

I have certainly had my share of GI issues and recurrent peptic ulcers that attack the small intestine, specifically my duodenum. No one can figure it out and the doctors are just now saying it may be auto immune in nature.

I had my stomach completely removed in July 2007 along with over 10 inches of my intestines due to GI issues. At the time they thought these problems were caused by my Gastric Bypass surgery, done in August 2004 that had gone bad but we now know that is not the case.

6 months after my total Gastrectomy (removal of stomach) I was back in the hospital with a 9 cm. ulcer that was very deep and quite frankly GIANT!!!

So, I was then put on TRIPLE DOSES of Nexium, Ranatidine and Carafate Suspension and told that they do not know how I could possibly have ulcers without a stomach to produce acid but moving forward I would be ok.

WRONG!!! Just 6 weeks ago the ulcers appeared again and with a vengence so now they say it must be auto immune related. I do not have H Pylori, Chron's disease, colitis or anything else that typically would cause ulcers. This has all been ruled out with the biopsies they have done and there have been plenty done.

It is a mystery and in the mean time you get sicker and sicker and just want answers. I am with a new GI doctor who is Chief of GI at a major university hospital. He is doing a Endoscopy January 29th to go down and take a look for himself. He feels this must be a vasculitis of sorts or Scleroderma as I have tested high for SCL70 antibodies and yet do not have many physical symptoms of Sclero.

My heart goes out to you and I understand how frustrating it can be when you cant eat, loose weight, no answers and get worse with each passing day. I do hope your doctors get to the bottom of your GI issues and you can get on with feeling better.
:wink2::wink2::wink2:
 

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Discussion Starter #5
GI isues

Thanks Sally and Karol. The GI issues got worse at a time when there were no new meds, so don't think it's that, but you are right about sugar hiding in strange places. It's a good comment, thanks. I am only on 15mg methotrexate per week and am taking folic acid weekdays. Do you think that's enough? As for the scleroderma, my rheumy said she suspected it because of the GERD and also i have strange callous like lesions on my hands. I had a look at the blood results link, so got some info. None of them rule out scleroderma. I think you are right though. I need to see her before April. have been on Plaquenil and pred for 2 months now. Would it be making a difference by now?

Sorry for all the questions, but thanks for helping.
 

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Hi Rose,
You are seeing that while we may have similar "labels" and other hangers-on conditions, we are all unique to our own.

In my case, I found a result from plaquenil within a day of starting it. It helped with the joint stuff, but it caused my migraines to go thru the roof. I had a migraine, yes one, that lasted 4 1/2 months. So, I no longer use that drug.
But, I would think that at 2 months of taking it, you should be seeing some result, even small, from it. The half life on it is 105 hours, so in 2 months that is way out on the half life.

I've known a couple people who had both sle and scleroderma. It was a rough road for them in dealing with the crossover of both.

Good luck with your doctor. Hopefully you can get in soon for a revisit.
Sally
 

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Most people will not notice an improvement from Plaquenil before a few weeks to a few months. Full improvement is not seen until 4-6 months so I would give that medication some more time to see if it will help you more in the future. In my case... I did not notice improvement for 9 months and after about 5-6 months I had to go on prednisone too due to a severe flare.

Prednisone usually helps immediately - or very nearly. Within 2 days you should have noticed an improvement from that drug. Well, this would be true if you are on a high enough dose to be of help. Some patients are put on low doses (5mg a day) and for them this is really not a high enough dose to be of help in treating the inflammation from lupus.

Regarding your blood tests... it's hard to "interpret" those for you as labs have different cutoff ranges for normal. The only things that jump out at me are that your CRP seems a bit too high (indicates inflammation usually) and your eGFR seems a bit low if it is less than 60. I almost wonder if it should have been typed as >60 because when it is less than 60 usually they give a number instead of just saying it's less than 60.

It sounds like you have a pretty thorough rheumatologist... and many of your stomach problems could be from the Sjorgen's too. The Plaquenil can help the Sjorgen's but it often takes even longer to help with that disorder - frequently 2 years!

I hope this helps some - good luck with everything.
 

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Thanks Maia and everyone else who answered

Thanks for this. makes me feel much better. I will check the values on the blood tests you mentioned. I was originally put on 20mg of pred a day but have been reduced to 10mg and i was also on 30mg of methotrexate a week but my rheumy has reduced it to 15mg. She is hoping to get away with a lower dose. I have decided to wait another few weeks and see if there is any further deterioration or improvement (have noticed stiffening of fingers is coming back and also small rashes breaking out on hands) and then I will contact her. I have felt very confortable with her and I know she is big into her research with Nottingham university and also one on the States, so am hoping that her mind set will be problem solving. She did say that she would have to do some "tweaking" of my meds while she found what worked, so I guess I am being silly getting into a flat spin about this.

Thanks everyone for understanding and helping. You have all made me feel better.

Rose
 
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