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Post by grammie on Oct 16, 2009 12:53:08 GMT -5
I have read and reread about mino and the 'cycle' of being good and than a slip back. I have been on it since first of March 09. All was going well, so good that I was dropped in prednison and off in late August. Since then, I have been having some breathing issues....wheezing, shortness of breath when climbing stairs....and am wondering if this is a 'slide back' or something going on in the lungs. I did have a CT in Sept and am to have one in Nov for there was a teeny tiny spec but pulmonary wasn't concerned even though my breathing tests had dropped a bit but still within normal. So, do I hang in there or give a call to pulmonary? He did say that if I found myself too tired I could go back to pred. but he also said it could take about a yr for my body to bounce back completely from the pred. I feel like I'm between a rock and a hard place......I want to keep going on the mino and no pred but don't want to overlook something as well. So my question to you all long time AP folks who often talk about the moving forward and slip back a bit....does this timing sound about right to you that this maybe a slip back? I sure am not as bad as I was but don't want it to go there either. Thanks for any input on the 'slipping back' that you can give. I appreciate it as I pray and weigh this out. grammie
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Post by jeffn on Oct 16, 2009 19:04:56 GMT -5
Grammie I do not have lung problems and only took pred. a few times the first year of SD. But despite my lack of experience I'll offer an opinion anyway Have you had any blood work, are you anemic? I know you have other stuff going on are you on any meds that would make you anemic? When I was anemic (before I knew I was anemic) I was short of breath and planning my trips up and down the stairs. At that point I was afraid of PAH but it was my bleeding that was the cause. Your problems may be a step back and normal to AP which I had too but with a lung problem I think I would check in with my Doc. My first few months on mino are clouded a little because thats when I was DXd with GAVE and in the anemia period. At first my improvements were very subtle and hard to pin down as in I THINK I have more energy but then a little slide back and I thought I was imagining things. The first tangible improvement for me were my digital ulcers, they began to heal three weeks in. About eight months in I felt noticeably better and finally let myself believe that I was improving. Looking back I find that I would feel better notice some improvement then slide back a little, not all the way back, and then in a variable amount of time the good days would become the norm. Sort of a step up process. Now I feel pretty well most of the time and now and again realize I can do something I had not been able to do before or a finger is straighter my grip is stronger or something. The thing I found to be the most odd was that I got to a point where my body which had been the weak spot was now stronger and my head was holding me back. I had to push myself to do things that I was not doing and was usually pleasantly surprised in that I could do these things and not be tired or sore etc. Back to your question, I'd get checked out with any luck it is nothing major just part of the improvement process.
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Post by steve201 on Oct 16, 2009 19:34:38 GMT -5
I was on minocycline as well as prednisone...along with lung involvement.....I got off prednisone after 2 yrs and the damage to the pancreas was done...but...I did vascilate up and down..one for awhile I felt great and then I'd slide back a bit..then I'd feel great again...so ....I think part of what might be gonig on is some of this vascilation that might be happening ...but the best thing is to contact your doc and talk to him..maybe have a pft done...on top of the ct scan...
Steve
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Post by grammie on Oct 24, 2009 17:06:29 GMT -5
I am pleased to say, I am feelimg better and breathing better. Whatever it was, seems to be 'lighting up'. I'll take that!!!!
grammei
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Post by jeffn on Oct 24, 2009 19:45:00 GMT -5
Glad you are improving!
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Post by Cubby on Oct 25, 2009 13:08:51 GMT -5
Hi! I did not have the lung problems. Glad you are improving, but if it flares up again, call the doctor!
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Post by grammie on Nov 2, 2009 8:14:59 GMT -5
Yup, I will. I am much improved. I did have blood work...must have it every three weeks due to other drugs I'm on, and nothing indicated anything out of the norm. Have had 2 more since. I am deffinately better. Thaks for the comments and i will call should it begin to 'slip'.
thanks, grammie
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