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Post by grammie on Jul 17, 2009 19:01:42 GMT -5
I'm EXCITED!!! ;D Yesterday I wrote that my dear husband put my kayak in the water. Last year I tried to kayak (had trouble bending to get in it) and had a difficult time grabbing the paddle and almost no strangth to make it move. I tried only once for it was to scarry.
Today, I paddled down the lake and across with almost no effort!!! ;D ;D That's treatment for you....cytoxin six rounds and then AP since March! I am so excited....and its you folks who I can share this with and understand my excitment!!!
I'm thankful to you all for your encouragement to get a doctor who could continue to help me....I went AP....thank you!
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Post by sherion on Jul 17, 2009 19:11:48 GMT -5
WAHOO!!!!!!!!! Grammie, that's WONDERFUL!!!!!! You go girl!
Sherion
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Post by jeffn on Jul 17, 2009 19:43:21 GMT -5
Great news Grammie! Feels so good doesn't it, being able to do something you were unable to before.
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Post by steve201 on Jul 17, 2009 20:26:34 GMT -5
Wonderful news Grammie.....hope you continue to improve and enjoy life!!
Steve
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Post by antonietta46 on Jul 25, 2009 7:36:42 GMT -5
Adriane,
Your soooooooo very welcome! I agree with you about finding a knowledgeable, likeable, trusting doctor, I also believe we make our own fate and we can beat this disease if enough of us keep fighting! Have a great summer.
Antonietta
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Post by grammie on Aug 21, 2009 8:33:06 GMT -5
Went to see DR.T this week and the AP is working enough to take me off prednisone. Next month to pulmonary to check lungs. If it continues to work I'm off prednisone! We're rather excited!
grammie
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Post by Cubby on Aug 23, 2009 12:52:56 GMT -5
Hey Guys!!! A few weeks ago, I had a pulmonary function test and then also a visit to the cardiologist for nuclear treadmill tests, etc. etc. Both came out NORMAL!!! I have so many days where I do not feel like I ever had scleroderma at all--thanks to the AP and in my case, the Photopheresis!!!!!
GRAMMIE your news is awsome!!!!!!!!!
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Post by grammie on Sept 2, 2009 19:55:30 GMT -5
Way to go Cubby!! Good news
I have good news too! i went to Pulmonary and he agreed to no prednisone! He said the 'yes, it is really working!" He seemed surprise (haven't seen him since spring) and he was delighted too. My function tests were down a little but he said not enough to be of great concern and it maybe due to off prednisone for 2 weeks that it is taking a bit longer for stuff to 'kick in'. I have a CT in mid Sept that he'll read and if all is still ok than, I'm a go!
It was such great news. And to think how very sick I was last year. This past week I WALKED the NY state fair and we were there 11 hours! Yup, I was really tired but I did it...last year was wheelchair!
Now to exercise and see if I can help those lungs! But first, due to the prednisone, I'm having caterac surgery tomorrow afternoon....but I can have it! So we are so happy tonight!
grammie
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amyc
New Member
Posts: 1
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Post by amyc on Sept 4, 2009 23:45:41 GMT -5
sounds like a lot of people are on AP for skin problems. How have those of you with lung/organ involvement improved from the AP?
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Post by jeffn on Sept 5, 2009 7:34:04 GMT -5
Welcome to the board Amy, glad you found us. Please post often. People, myself included, are on AP for all our SD symptoms not just the skin problems. I personally do not have lung issues. Perhaps I began AP early enough to prevent them, at least so far. I had little in the way of thick skin, I had tight skin on my lower legs and arms from swelling. I have CREST/Limited with all the Crest symptoms. In addition I suffered from GAVE or watermelon stomach and had a host of other SD related issues; crushing fatigue, weakness, joint pain, my teeth were moving, my jaw hurt, hands were in terrible shape, Raynauds, and on and on. I have a thread further down in this section (AP) that goes into more detail if you are interested. As to the internal problems my esophagus seems much better. I have not had a new study done but I don't catch food in my throat anymore, I am able burping again I think that is a good thing . As to my watermelon stomach I have had no recurrence in the last 2.5 years. My sed rate was a recoded high of 43 and now is 2 - I feel well and have my life back. I know there a people here that have seen good results with lung problems. I'm sure some will chime in with their take on AP and lung issues. So again welcome and keep the questions coming.
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Post by grammie on Sept 5, 2009 8:01:14 GMT -5
Hi Amy, I wrote above Jeff about my lung issue being ever so much better this year. I was DX Sept 08 with nsip in the lung, put on cytoxin infusions for 6 months and in March went on the AP. I sure don't want to switch protocol!!! Yes, I do have SD to my hands and feet, gi track....they have all improved. I'm even putting on weight again! I never thought I'd say that! Anyway, welcome aboard, Amy.
grammie
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Post by steve201 on Sept 5, 2009 21:49:58 GMT -5
sounds like a lot of people are on AP for skin problems. How have those of you with lung/organ involvement improved from the AP? amy welcome to the zoo....for me I wasn't expected to last past 6 mos...9 yrs later..here I am..and with my lung involvement..I'd lost 28% function in my lungs...I've improved to 20% lost lung function...and yes...I'm on tetracycline... Steve
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Post by Cubby on Sept 10, 2009 17:47:12 GMT -5
Hi AMY!!!!! The hard skin is the outward manifestation of the disease, as you know from what others have said above. So while our skin is hardening outside, it is actually coming from the INSIDE. So, while that skin is hardening, some have had it get into the internal organs.
Many of us (not me, thank God), had pulmonary fibrosis and some had some heart issues. Not sure about those with the heart issues, but the people I know who had the pulmonary issues are all getting better from the AP. Again, the ones I know about, either have no sign of pulmonary fibrosis now, or it is getting better from what it was before. Hope that helps!
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Post by ltulip on Jan 19, 2010 20:43:44 GMT -5
Hi to all. I am new on this site but would like to know if anyone else is at the stage in this disease where it has become inactive but has damaged internal organs such as the heart and lungs. If so, did you start AP after being dx with thse problems? If so, did AP work? Thanks ltulip
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Post by grammie on Jan 26, 2010 11:59:07 GMT -5
Isn't AP treatment WOnderful!!!!
grammie
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