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Post by jeffn on Jan 15, 2014 19:55:50 GMT -5
Been really busy at work and have not posted much. Just had a few things I have been mulling over. My Raynaud's is better this winter. I have had fewer attacks by far. My hands still get very cold at work but they don't turn "dead guy white" nearly as often. As I have noticed previously I have more Raynaud's attacks when it is damp out. The lessoning of attacks is welcome. Sad news though one of my Gerbings electric gloves died last week. They had been doing a great job warming my hands up when they got really cold. I thought about not replacing them but that only lasted two days. New pair on the way. They are quite nice just wish I could wear them at work, unfortunately they don't offer enough dexterity for electrical work. I use them to warm up and then put on my fingerless work gloves. I was speaking with a woman the other day who recently purchased an electric powered (battery) jacket and says she absolutely loves it. Her son is a big hockey player and she spends a lot of time at the rink. She suffers from Raynaud's and she is really enjoying the jacket. I saw a work jacket at the lumber yard the other day made by Bosch tools and it uses one of their tool batteries for power. Pretty good idea.
On the medication front as of the first of the year I reduced my mino dose to 100mg three days a week from four days a week. So far so good granted it has only been a couple of weeks. Watching things carefully.
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Post by Nancy - South Jersey on Jan 15, 2014 20:36:08 GMT -5
Hi Jeff! Glad you're having a good Raynaud's year so far I find that my Raynaud attacks happen when my torso gets chilled and not always when my hands are cold. If I wear layers and stay warm, I have less attacks of my hands. Those battery gloves sound nice. I wonder if I could bowl in them! Ha! The bowling alley I belong to is always freezing. Have a nice day!!
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Post by jeffn on Jan 16, 2014 7:24:46 GMT -5
You would not be able to bowl in them but you could relax in them between frames and be toasty warm when your turn comes.
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Post by isobelle44 on Jan 18, 2014 21:31:12 GMT -5
Glad the lower dose mino is working for you so far. Hey don't work so hard. We miss seeing you here.
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Post by grammie on Jan 19, 2014 16:52:20 GMT -5
Hi Jeff....and everyone else!
How nice to have the raynauds be better. Mine sure isn't...or I don't feel it is but it might be. I find if they get cold they go quickly to purple. Warm water is a common way for me to get the figures back before I go to the hot pads. I will check out the torso being cold and see if that is it. I know if I put on a hat it helps...even in the house!
So glad you, Jeff, have been doing well with less mino. That's great news!
GRAMMIE
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Post by nhnancy on Jan 21, 2014 22:44:01 GMT -5
yes, keeping the core body temp up helps a lot :-)
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Randy
Junior Member
Racing Gloves on!
Posts: 81
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Post by Randy on Jan 23, 2014 11:48:17 GMT -5
On the medication front as of the first of the year I reduced my mino dose to 100mg three days a week from four days a week. So far so good granted it has only been a couple of weeks. Watching things carefully. Hi Jeff, I noticed your reduction comment. I began reducing my mino quite a while ago (with Dr. F.'s direction) and had got to the MWF 100mg twice daily. I also began reducing my clindy IV's to every 6wks. Both types of reduction did not happen at the same time, so we could see if either was having an (negative) effect. Anyway, I am on the 6wk clindy cycle; however, I have returned to daily mino. (I have done this on my own). I have noticed that my feet and hands are pretty stiff and (more) swollen in the mornings when I wake up. Fortunately, the stiffness and swelling seems to go away pretty fast once I get going (and pop my knuckles - by the way, I didn't used to be able to). Anyway, because of this and a lot of stress (due to aging and sick parents and associated family issues) I have returned to daily mino. So why did I feel I needed to reduce the mino in the first place? Because my IGM went from normal to low and then very low almost immediately once I was on AP. That is probably also true for all of us on AP. Additionally, my face has become a bit too full of black blotches. I believe Steve had complained about that as well, before switching over to tetracycline. However, Richie continues to do daily mino and has been doing great. Best, Randy
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Post by jeffn on Jan 23, 2014 19:35:11 GMT -5
Hey Randy great to hear from you. I trust all is well and your life has returned to normal. Going back on daily mino I would think is a good idea when you have life issues going on. I went through the aging parent phase long ago but yeah it can REALLY wear you down. You can always try a reduction again when things return to normal stress level wise. As to my reduction in dosage I have been watching for changes very closely. As of right now all is fine and I have not noted any new pains or swelling. It has only been three weeks and I only dropped 100 mg per week. I am down to 300mg a week as opposed to the 1400mg I began with. Your resumed swelling is interesting to me as I was guessing that might be the first reversal I might see as my sausage fingers predated my SD causing me problems. Also I was figuring nerve pain/sensitivity could be an early sign. When your fingers were swollen did you note an increase in pain or just a bit swollen? I have the blotches too but at my age it is a small price to pay for feeling well and my modeling career never really materialized anyway. So blotches it is!
Take care Randy, as I said great to hear from you.
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Post by grammie on Jan 24, 2014 10:53:54 GMT -5
Yes, it was good to hear from Randy.
I can rejoice that I've been off the mino now for about 3 years. Yes, I really did/do have SD and it shows in my fingernails of all places. I do have some tightening of the skin on the legs but it is believed to be another drug side effects I'm on. I haven't seen pulmonary in three years but am going in two weeks to just be checked. My rhymie said there is no signs of SD now....saw him in Sept....except the fingernails and some of the joints. But at my age...almost 70...I would expect to see some! It sure isn't bothersome nor does it stop me any. This SD sure is a strange disease!! Everyone is so very different. No wonder the doctors are so different on the subject.
Now Raynauds, that is a different game for me.....ugh!!
Best of luck to all of you who are trying to cut down on the mino. You are the best person to know your body. I agree, Randy, if one sees signs of it returning to up the meds again. Actually that is how mine went as I pulled off....cut down, up it again, cut it down, lowered it, finally off.
At least the SD is under control! That is the most important! grammie
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