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Post by jeffn on Jan 1, 2015 11:33:27 GMT -5
Nicely done Christel. VERY happy to see you are getting your life back. People that don't have issues really have no idea how good it feels to regain mobility etc.
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Randy
Junior Member
Racing Gloves on!
Posts: 81
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Post by Randy on Feb 17, 2015 12:26:53 GMT -5
Hi Everyone,
I thought I'd provide an update. The vacation to Punta Cana was very nice and after that we went to Disney World and Epcot Center. I did my best to try to ignore my resurgence of SD symptoms. To make a long story short, I continued to fight severe skin involvement with twice daily mino and oral clindamycin. I was able to walk around the theme parks, but needed 100mg of Lyrica at bedtime in order to sleep (due to the burning, itching, and pinging). I remember describing the SD neuropathy as a very bad sunburn with sharp pings. This is something many of us can relate to.
My fight with my "relapse" has continued. By the way, I don't like calling it a "relapse", because I don't think the SD goes away for any of us while we are in "remission", which should really be called "under control".
I was able to stop the oral clindy and resume the clindy IV's in January. I've completed 2 cycles so far. The Lyrica continues to help me hang in there. For the most part, I take 100mg during the day, and 100mg at bedtime. The itching and burning doesn't disappear, but it is more tolerable and dissipates when you stay still to enable you to go to sleep at night or pay some attention to something else if you are trying to get some work done.
I saw Dr. F. last week and we know we have to keep on the course and that I will get better. Yes, as he says, when you stop AP, the SD comes back with vengeance.
Randy
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Post by nhnancy on Feb 17, 2015 23:52:48 GMT -5
Hi Randy, glad your vaca was nice, you certainly would not want to be here, we have 6-7 feet of snow and more coming, its nutz up here in NH.
I am dreaming of warmer places, we are snowbound! I am sorry you are having a tough time with neuropathy! I am glad Lyrica is helping you. I swear by my B-complex vitamin, though I do get bothered occasionally, mostly when I am very fatigued. You will respond soon to being back on everything, Proof! I dont believe its a cure, as I still have other stuff, but it surely improved the quality of my life and helped me. I have SD, or I am controlling, it somewhat.
You will get there too! Keep thinking positive, I think it really helps!
Epcot is an awesome place, everything is so much like a place or perfection, My hubbys brother works in Disneyworld, in Universal, I think, harry potter He tried for that job for years and just loves working for them! Heres hoping that your IVs really show improvement soon! great hearing from you! Nancy in NH :-)
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Post by christel on Feb 23, 2015 19:47:42 GMT -5
As I was going to my 72nd hyperbaric treatment this a,m., the thermometer said -15. It went up to -11 by the time I arrived, and it warmed to a balmy -3 by the time I was driving home 1 1/2 hours later... Crazy. We are looking to hit a new cold record this Friday of -6. Man, this is getting old.
I'm heading to Florida on March 8th for 2 1/2 weeks. This will be the first extended stay during the winter months for us, so we'll see how it goes. I need something other than drugs, surgery, and misc. treatments for a change to feel better. Hoping the relative warmth of a new area does the trick.
Randy, glad you liked Disney. For me, it is just overwhelming and exhausting to even begin thinking of it. I am content to just sit and read or do puzzles. I am pretty boring in that respect!
C.
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Post by jeffn on Feb 23, 2015 19:50:35 GMT -5
Hey Randy sorry I missed your post somehow or another. (Thanks nhnancy) Your vacation was painful but at least you were warm and had some fun with the family. Great to get away and have that quality time.
I agree with your take on remission and "under control" I found out much the same with my mino reduction, fortunately for me my slide was not as drastic as yours. We are all so different but still so similar. You are lucky to have such a good doc in your corner Do you perceive any improvement at this point? I never took any Lyrica but I wish one of the docs had mentioned it to me. So many have seen at least some pain relief with it I would like to have tried it. Ditto on the IVs but that is water under the bridge.
Keep up the good fight and keep those racing gloves on!
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