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Post by kathygirl on Oct 25, 2009 18:47:23 GMT -5
August 27 a day I wont soon forget. I went to see the sclero doc for routine visit. Since i was changed from cytoxan to Imuran in January I have been doing poorly. Last year at this time I was working in the garden hauling 40 lb bags of horse manure. I just felt that the Imuran wasnt working right from the beginning. The doc wanted me to stay on it for a few months to see if it would work. I had no internal issuses just alot of skin hardening on my arms. In june I had a terrible experience with severe pain in my stomach. I was taken to emerg. I had a fever about 102. I had a catscan of my stomach and was told they didnt see any problems. They diagnosed me with flu or food poisoning and sent me home next day. I stopped taking AP because it seemed to really irritate my stomach. During the next few weeks I would feel sick to my stomach and vomit bile. Once I had vomitted I would feel pretty good. Then on the 27th I went to the sclero doc for routine visit. She looked at my hemoglobin numbers and told me to go to emerg and be admitted. My hemo was about 70. I had a colonoscopy and endoscopy next morning. Everything looked fine minor inflammation. Over the course of the next 2-3 weeks my hemo slowly was going down. My lowest was 49. They decided the blood had to be going somewhere and thought having another endoscopy would be a good idea. This time my stomach was a mess from watermelon stomach. They used argon gas to cauterize it. From then on my hemoglobin has been on a steady rise. I am now at 93. I came home from the hospital on Sept. 24. I am getting energy back but the sclero is very aggressive. I started back on AP this week and am waiting for a bladder infection to improve and its back to cytoxan again. Cytoxan was my miracle drug before. I had another endoscopy and treatment with the gas again last week and in about 5 weeks am due to go in again. The watermelon stomach is a bit better but not as good as the doctors would like to see. I now haveskin hardening onmost of my body. My teeth ache alot as well. I have not given up hope by any means but sometimes wish things could be alittle easier. My fondest wish is to get healthy enough to go to myrtle beach in the spring and visit the tiger preservation station they have there. Hope everyone is feeling well. Kathy
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Post by kathygirl on Oct 25, 2009 19:20:27 GMT -5
Sorry i should have posted this in the scleroderma issues section.
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Post by jeffn on Oct 25, 2009 19:52:51 GMT -5
I'm not sure we can move a thread but maybe Cubby can work some magic. If not it can just live here - no problem.
Sounds like you have had a tough time lately. Both Cubby and I and probably others here have had/have GAVE. Do they have any idea what you are taking to irritate your stomach? I never had any laser work just had to give up NSAIDs (Yes I know I have told everyone that a thousand times) but did not have to give up the mino. I know mino can erode the esophagus but they did not mention anything about giving up the mino at the time in my case. Are you on the minocyn brand or generic. I started out on Ranbaxy generic and a couple of months later they changed to Watson brand, this was about the time they discovered my GAVE but I had been becoming anemic for a few months previous, before I began AP. I can say that for me the Watson is easier on MY stomach than the Ranbaxy. I had been on many different brands of NSAIDs for a eight months or so and my stomach was killing me. How long have you been on mino? I too had the pain in my jaw and teeth, that really was painful along with all the other things.
I have only been on AP for my treatment so I don't know much about the Imuran or Cytoxan. I hope when you get back on the Cytoxan it does the trick again. I'm glad your numbers are on the way up. It took about three months for mine to be almost normal. Then it took two years for me to get into the normal range. I hope you rebound from this quickly Kathy. Good luck with the watermelon stomach. The good news is that both Cubby and my GAVE did not come back after our bouts with it, so far anyway. I have been over two years since mine. Hope yours will be gone for good too.
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Post by steve201 on Oct 25, 2009 21:55:42 GMT -5
man kathy!!..sounds like a rough time....I was on cytoxan for about 2 yrs..it was tough and made me nauseated every time I took it...had to take zofran for nausea...plus my prilosec ...keeps my stomach in check....good luck with the other items....keep us informed...
Steve
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Post by nhnancy on Oct 25, 2009 23:47:24 GMT -5
Hi Kathy, I don't think we have met, I recently joined and have just had Argon gas/laser for GAVE, was anemic for one year! Though my numbers did not go that low, the fatigue was horrendous I am due to go back in to make sure of healing, the 13 of November I have diffuse systemic SD. It took me a year and a half to get diagnosed.... Now I see a doctor in Boston, they are giving me time to heal before treatment of my SD, unless I get worse. I hope you are on the mend. Mine is getting better... I ate cream of rice (warm cereal, a lot after my procedure (easy to digest) and more small...child sized meals,(rather than large) cuz I had it in my head I didn't want to stretch my stomach (nothing anyone told me to do , just my insanity)  I hope you get to feeling better... Nancy... |
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Post by Cubby on Oct 27, 2009 22:55:30 GMT -5
KATHYGIRL: YOU CAN POST ANYWHERE YOU CHOOSE. If you want, I will move this, otherwise, I will just leave it here.
I am so sorry you have had such a hard time. Yes, I had watermelon stomach and was also bleeding from the esophagus. The argon plasma coagulator was done on me the third time they did the cauterization and that time, it worked. The 2 prior times, they used different equipment and the bleeding continued. So, the third time was the charm.
Are you going to be taking the AP along with the Cytoxan? Just wondering.
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Post by kathygirl on Oct 28, 2009 12:46:38 GMT -5
Yes I will continue with AP because I do think it helps and it is the least harmful of all the drugs I can take. The cytoxin will stop the progression. It takes about 6 weeks then I will start to feel changes.
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Post by grammie on Oct 31, 2009 19:11:44 GMT -5
What a time you'v had Kathy. Glad you'r on the mend!
Jeff, interesting about the stomack....oh does it hurt for an hour after taking it. I will check my 'maker' of it. Also glad to know about the teeth....began to wonder what was happening.
Steve, you commented on being very brown with mino .. did you also have purple spots and loose your toe nails? i've lost two. Went to dermotology yesterday and that is what they said was the cause of both the purple (looks like buirses but don't go away) and the toenail.
Maybe I should be drinking more with the mino....does that help the stomach? I hate to take anything when I take it. Sure does knock the sox off some days. but I don't want added trouble. Guess I'll go back and read.........
grammie
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Post by steve201 on Oct 31, 2009 21:56:21 GMT -5
Grammy.
my toenails didn't fall off..they did get a black stripe in places....didn't get any purple spots or anything like that....I got really really tanned...and that's just from the florecent (sp) lights at the office.....
I changed over to tetracycline and haven't had any problems other than to get blistered when I'm in direct hot sunshine...mainly on my arms.....so..if your having problems and reactions..ask to change over to tetracycline.....works just as effective..
Steve
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Post by jeffn on Nov 1, 2009 7:13:24 GMT -5
Grammie, I believe that you do need to drink more water with the mino, I try to but probably do not drink enough. Did they tell you why the toenails turn black and fall off? Are they growing back normally? There was a discussion a while back on RBF about toenails turning black sounded like it was rare but did occur in a couple of people. I do have some dark splotches but I had most of those before starting mino.
When I began mino as noted my stomach was not in good shape and when I took it it would bother my stomach some. Usually for a half hour or so. What I did was eat a couple of crackers with my mino. The "popular" wisdom seems to be that if you take the mino with food you lose about 15% of the effect. I think that is with a meal perhaps so I'm not convinced that a couple of crackers would take away 15% but I don't know. In addition I cheated in that I usually take my mino with a diet caffeine free soda. I know I am supposed to take it with water but that is what I usually have with me out on the job. I find the soda to be easier on my stomach with the mino as oppsoed to water and mino. Not saying this is what to do - it's just what I have done and so far so good. Maybe try the crakers for a couple of days and see if it helps.
My jaw and teeth really hurt and I had spaces opening up between a few of them. Several years before my SD became active I began to get a couple of food catches. After it became active it my jaw hurt a lot and my bite began to change. Every morning for about the first hour or so after I woke up my bite was all screwed up. After a bit they would move back to mostly where they should be and it would just hurt for the fest of the day. Thats is all resolved now and teeth have moved back to their proper locations.
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Post by kathygirl on Nov 1, 2009 12:22:38 GMT -5
The last couple of days my teeth have settled down again. I am glad I didnt go to the dentist. I started back on minocin twice a day everyday. So far so good. I am waiting to hear the results of blood tests tomorrow to see if my kidneys are working ok and if my bladder infection is finely gone. My hemoglobin must be going up because my energy levels are increasing. I will be sureto pass on the news when I get it.
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Post by jeffn on Nov 1, 2009 19:38:42 GMT -5
Glad you have a little more zip. Please let us know what you hear tomorrow. I could really tell as my hemoglobin improved.
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Post by antonietta46 on Nov 12, 2009 21:32:07 GMT -5
Kathy,
When I became ill I had a similar situation, my iron levels were so low that I was getting blood transfusions and intravenous iron from April of 2006 to November 2006 due to the GAVE, then I started on AP and protonix and I am doing much better. I do take iron regularly and was told I probably will never be off of it but I'm doing great! My wish for you is to do the same. Keep us posted on your progress.
Antonietta
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