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Post by Cubby on Oct 17, 2012 14:05:57 GMT -5
GRAMMIE: I AM very interested in your progress without the AP. Every time I try to go lower than I already am (100 mg Minocin, 1 x a day) I get horrible burning in my hands and feet, which is clearly the Raynauds. However, I definitely want to follow your progress. You are the first person I know who went off it and had no problems.
JEFF: I keep hearing from longterm sclero patients that they never had a spontaneous disappearance of the scleroderma EXCEPT for those with LIMITED scleroderma where the hard skin did not progress past their wrists. Does not mean that there are not folks out there where it disappeared, it's just that I never heard from them.
As you know, I reduced my Mino from 2 a day to 1 about 3 years ago. My doc was surprised but glad. Remember, he gives it to me and 2 other patients who are friends of mine, yet, he still is not a total believer. Yup,weird.
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Post by grammie on Oct 22, 2012 18:37:49 GMT -5
HI Jeff, The weight lost? Unfortunately it was the illness and not the diet. However, I did do Weight Watchers and it was very successful for me....35 lbs and kept it off for four years, it crept up so went back and lost it again and it had maintained. Unfortunately this weight loss was the illness and I need to put on 15 lbs or more. Never thought I'd ever say that! And, now it is hard to put on!!
The weather has been nice and I do feel funny wearing my mittens with hand warmers on windy days with temps in the mid 60's. So be it.....I'm warm and so are the hands!
Enjoy the fall. grammie
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Post by grammie on Oct 22, 2012 18:41:31 GMT -5
Hi Cubby, I seem to be doing well except for Raynauds which really has been uncomfortable. However I'll take the uncomfortable feelings over taking a drug.
I sure don't have any answers to any of this stuff.....confusing.
That's about what I can tell you at this point.
grammie
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Post by jeffn on Oct 22, 2012 19:09:11 GMT -5
Sorry Grammie I figured you were trying to lose the weight not that it was result of illness. Hope you are feeling better and perhaps it will be entertaining trying to gain 15 pounds. When I was suffering from GAVE I could eat like a horse and be a pound lighter the next day. Between the SD and the GAVE I felt like crap all the time but I was not overweight. Very strange.
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Post by Cubby on Oct 24, 2012 14:45:58 GMT -5
GRAMMIE: CAN YOU TAKE ANYTHING FOR THE RAYNAUDS?
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Post by grammie on Oct 30, 2012 9:03:06 GMT -5
they tell me no but I really haven't pushed the issue. Hand warmers daily with mittens does help a lot...and of course the hat on the head. I just know that those drugs that lower blood pressure are not for me.
grammie
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Post by Cubby on Oct 31, 2012 15:43:25 GMT -5
As most of you know, I am down to 1 Minocin a day (100 mg) but have tried, unsuccessfully to go down to 50 mg. The reason is that by day 7, I have a horrible flareup of the Raynauds in my hands and feet. As soon as I go back to my 100 mg, it is gone within hours. Sooo, go figure?
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Post by christel on Oct 31, 2012 19:23:45 GMT -5
Well, my guess is that taking 100mg daily to keep symptoms at bay is really not all that bad of a deal... I know it would be nice to need nothing, but sometimes that is just not meant to be!! just my two cents worth--  Christel |
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Post by antonietta46 on Nov 1, 2012 11:44:18 GMT -5
Hello Everyone, It's been a long time. I have missed everyone and hope you are all doing well. I saw the post about steve and I am just speechless  . Since Dr. Trentham retired I have been seeing a wonderful doctor here in NY. I only have to travel a little over an hour - unlike the 3 1/2 to Boston (although it was well worth the trip) besides the fact I got to meet Jeff with my family  - I have been taking 1 100mg of minocin for about 6 months then had a few symptoms reoccur, so went back on to the two did that for about a yer, I am now back on the 1x a day again and I am doing fantastic thank goodness! Our grandson will be 1 next week and we just found out my son & his wife are expecting baby# 2 and it is a little girl! I will post pics of my grandson as soon as I can. Hope this finds all well and hope to talk to you all soon! Antonietta |
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Post by jeffn on Nov 4, 2012 10:54:34 GMT -5
Hey Antonietta good to hear from you and glad you are doing well. I too have been doing well on 100 mg a day every day, hopefully our good fortune will continue. Where is the new doc located? NYC?
Great about the grand-kids, post a pic when the big day comes.
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Post by grammie on Nov 4, 2012 15:36:13 GMT -5
Cubby, I'll give your idea of Ray. and mino some thought. Maybe I better make that appointment for rheumy after all....hummmm
Antonietta, glad to see you post again and that all is going well. Such excitement to have grandchildren! Enjoy. I sure do!
grammie
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. Since Dr. Trentham retired I have been seeing a wonderful doctor here in NY. I only have to travel a little over an hour - unlike the 3 1/2 to Boston (although it was well worth the trip) besides the fact I got to meet Jeff with my family 
- I have been taking 1 100mg of minocin for about 6 months then had a few symptoms reoccur, so went back on to the two did that for about a yer, I am now back on the 1x a day again and I am doing fantastic thank goodness! Our grandson will be 1 next week and we just found out my son & his wife are expecting baby# 2 and it is a little girl! I will post pics of my grandson as soon as I can. Hope this finds all well and hope to talk to you all soon! Antonietta