For back round my original dosage was 100 mg of Mino twice a day way back when I began this journey. More recently I had been taking 100 MG of Mino every other day for several months last winter and spring. Late this summer I reduced to 100 MG MWF. So far no major changes better or worse, still feel very well. My Raynaud's may be a little worse but we have just had our first cold spell and I have been working outside more than normal perhaps, at any rate it probably is too soon to say for sure. Aside from the Raynaud's the dark spots on my face have not faded with the reduction. It may not, I do get a little frustrated with it sometimes but for me it is a small price to pay for feeling this well. I am not willing to experiment with a change to Doxy which does not cause discoloration or less at any rate. From what I read on the boards it is not a good result for some as SD symptoms return. A few winters ago I had reduced to the dosage I am using now but in March of that winter, which was very cold and damp, I thought my hands/Raynaud's were getting worse and more painful. The hand pain may just have been a result of the harsh weather but at any rate I decided not to chance things and went back to 100 MG daily. Will see what happens this winter with this attempt. For now I intend to stay on my current dosage, I am not willing to reduce dosage further if I need to I will jump dosage back up.
Sounds like you have tried different things in a careful manner, Jeff, and you have a good handle on dosing and response. To quote an old adage, ‘if it’s not broke, don’t fix it’ or something like that! Hoping you continue to be in control of this monster called scleroderma!
Update. My Raynaud's has been worse this winter and I have been working in somewhat colder job locations. As a result my hands are hurting quite a bit. They hurt some every day but lately they have been worse. I have what may be a digital ulcer starting on the tip of my middle fingers and my middle joints on my fingers have been sore all winter. Thinking that many of the problems are caused by simply my hands being cold at work (they tingle much of the day - hard to keep warm and I can't work with out gloves) and compounded by the lack of circulation as a result of the Raynaud's. My thoughts are that this all may pass if and when it ever gets warm BUT I want to be proactive so last week I upped my mino dose to 100 every other day instead of three days a week. Thinking about it yesterday I am now of the opinion that I should go to 100 mg everyday for 10 to 14 days, give the body a little extra shot. Interestingly today they are not as sore I think because they have been warm all day so far and it has been cold stormy and wet this winter. I see my PCP in a few weeks and will let them know how it is all working out. So that is what's happening in Jeff world stay tuned.
Interesting thoughts, Jeff. Guess there are so many factors that could be responsible for the changes. Keep us posted on the progress with your adjusted dosing, I’m going to guess that your pcp won’t have any better explanations than what you’ve learned with your own experience.
This winter has been especially brutal on my hands also. Although I sleep each night with my hands absolutely slathered with petrolatum-type lotion and gloves, I still have areas of breakdown, especially under my nails. I’m also meticulous about not going outside with gloves/mittens on.
The numerous digits with calcinosis add to the pain in my hands not due to skin problems. (Just in case i don’t have enough pain going on already...)
Some new thoughts since my last post. By Sunday evening my hands were a lot less painful, thinking that because they were warm, for the most part, all weekend. Not as stiff and the joints moved with less discomfort. I don't believe the spots on the end of my middle fingers are digital ulcers either, well maybe the one on my left hand. The one on my right hand has gone away, it was just a dark spot, has reduced in size. The one on my left hand is not as painful - perhaps it was just the cold. It is still there and smaller than it was the end of last week. Maybe it is just as simple as the cold and poor circulation due to the Raynaud's. At least in regard to my hands. Still have some other aches, pains and concerns but am relieved that most of the hand stuff is the cold. So for now I will continue with the 100mg of mino every day through next weekend and the if things still look good go back to every other day at least until it warms up some. Just want to be proactive so I don't back slide. All and all things are good and I don't want to go back. Just being vigilant.
Nope I feel much better on the everyday dose. So after much thought I'm going to stay with 100mg of mino a day seven days a week. In addition to the Raynaud's I have been having more joint pain mostly in fingers and my knees have been very sore. Since I returned to seven days a week my knees feel much better along with the hands. Really way less pain day to day and the Raynaud's might be a tad less also. Saw my PCP today and they seem to be OK with it so for now I am going to stick with the new/old program. May try every other day at some point in the future but that remains to be seen.
"AP a treatment I can live with" 10 years and counting.
Still on the 100mg of mino per day, been just over two months now. Knees feel better, still stiff but better. Whatever I have on the tips of my middle fingers is going away. Not sure if is a digital ulcer or one of those nerve things I get. it is sort of a small diameter hole in the end of my middle finger perfectly located where I bang it on things I reach for. It is much smaller now and less deep the one on my right hand was just starting when I increased my dosage and has been gone for a while now. In addition I had two areas, one on each hand, on the outside of my little fingers just above the knuckle that too was very sensitive. These were lumps if you will and when I increased my dosage were beginning to ulcerate on the top some. Those two have reduced and are much less painful as they also were located where I would whack them on things at work and around the house. The right one is just about gone and the left side there is still a little swelling but lots less pain. Both the finger tip things and the little finger lumps are symmetrical which makes me think they might be nerve related. Before mino I had a few of these spots around my body and were told that they were nerve "hot spots". At least that is what I was told, the symmetry being the key to that. Those have long since healed over, the two most troubling ones were on the lower part of my ear and I still have scare tissue where those were located. The current finger tip ones look very similar, sort of a small diameter hole. Very uncomfortable. The Raynaud's is maybe somewhat better I think I won't know about that until next winter when it gets cold again. Hands a somewhat less sore too.
Well that is my current situation and I am going to continue the present dosage and really try not to over think things. Will be interesting to see what the darkening does, so for no changes with that. The darkening did not decrease with my reduction in dosage. Present doc thinks it might be the mino in combination with sun damage. Hoping it does not get worse but if it does it does, I would rather feel better.
Have a good Memorial Day weekend and remember those we have lost.
"AP a treatment I can live with" 10 years and counting.