Update On My Mino Dosage Reduction

[jeffn]

I have been working on reducing my mino dosage. IIRC on Labor Day I went down to a 100 mg of mino every other day. That worked well, on Jan. 1 2014 I reduced to three doses a week. 100 mg of mino Mon. Wed, and Friday. So I'm just at three months with this dosage. My original dosage was 100mg twice a day every day. Lately I have noticed my knees have been hurting and my hands felt a bit more stiff, also perhaps a little more fatigue at the end of the day. Our winter here has been very cold and damp, not mention long like everyone else that lives in the northern parts of the country. I have spoken to a few friends who work in health care and they have said that many people have been complaining the past few weeks about aches and pains. In particular joints - knees, elbows, and finger and also fatigue. I don't know if my pain is caused by the SD and mino reduction or the weather. Just to play it safe I have increased my dosage to 100mg a day for a while and see what happens. When things return to normal (hopefully they will) I'll try reducing again and see. I began the new dose Monday of this week and my hands do feel better but the weather has been more dry and somewhat warmer. Going to wait it and see what happens.

[jeffn]

Been on the increased dosage for three weeks and am feeling less achy. That could be the anti-inflammatory properties of the mino maybe but at any rate I am feeling better. The weather has been warmer and more dry too, that can't hurt. I think we hit 60 the other day, windy and rainy off and on today. My fingers are less stiff also and I have less shooting pains in my wrists and fingers. I'll take it all as progress.

[christel]

You are so good at observing and describing your symptoms, Jeff! Have you considered a second career in health care?!

Christel

[jeffn]

I have enough problems with my first career Christel but thanks . I look back at my SD journey now and again and one thing that sticks out is that I should have kept a log or journal of what was happening. I think that would have been a plus. I do believe that we are our own best advocates and the journal would have helped with that. Water over the bridge now though.

Today I am observing a splitting sinus headache, although it does not look it outside there must be something in bloom. I took a Sudafed so in an hour or so I should be feeling better. Spring does have a price but I am willing to pay it to be comfortable again.

[christel]

Yes, it seems like everything is a trade off. Although the miserable cold is a memory, I am having major and debilitating gi Issues all week-it's always something, isn't it?!

Hope the Sudafed helps, Jeff. Lots of fluids, too!

Christel

[jeffn]

The decongestants did the trick for now Christel. I have to remember to take one before I go to bed tonight.

[grammie]

Hi Jeff, Hope you are able to reduce the mino again as the weather warms up. My fingers sure do get cold fast these days and I think part of it is that with the warmer weather, I'm not wearing mittens/gloves. Though it is warmer, it is also the spring dampness.

I do finger exercises to keep the fingers and palms moving. Several years ago I got some hand/finger exercises and that really has helped keep the fingers limber so to speak.

Anyway, just wanted to make a comment or two.

[grammie]

Hi Jeff, Hope you are able to reduce the mino again as the weather warms up. My fingers sure do get cold fast these days and I think part of it is that with the warmer weather, I'm not wearing mittens/gloves. Though it is warmer, it is also the spring dampness.

I do finger exercises to keep the fingers and palms moving. Several years ago I got some hand/finger exercises and that really has helped keep the fingers limber so to speak.

Anyway, just wanted to make a comment or two.

[jeffn]

Grammie I am not sure what I will do. It is not so much the cold fingers but increased swelling and overall joint pain not just in my hands but also knees and hips. The Raynaud's has been progressively better every winter and I am enjoying that. Perhaps it was just the winter weather, it was damp and cold here. I will have to think hard about my next reduction though - I sure do not want to go back! I have been feeling well of late a definite improvement from five weeks ago when I increased dosage.

[grammie]

I hear you on that one! I do wish I could do something about the fingers. The drugs used cause low blood pressure which I have on its own. Concern is it will drop even lower so I live with it! Nothing like wearing mittens or hand warmers in the pockets on a 60 plus degree day!!

[jeffn]

My aches and pains are greatly diminished of late. Reading through this thread I was reminded of the shooting pains in my forearms, wrists, and lower legs. These pains have gone away with my increased dosage. While that is a good thing it is a bit unsettling in that my aches and pains etc. were perhaps not caused by the ugly weather. Instead it may have been the SD coming on a bit after my dosage reduction. On the other hand it is reassuring that a simple increase of dosage reversed the increased symptoms. I am going to think about it a while but I may reduce to 100mg every other day and see what happens.

[Randy]

Hi Jeff,

I have always maintained a daily log for my SD. This was one of the main ways I was able to get encouraged as I highlighted all the very little improvements along the way. Today I log in that I am now dripping my 365th Clindy IV (believe it or not!). More on all that in another thread.

With regard to reducing your mino dose, Dr. F. had reduced me to 5 days/wk and then down to MWF around Dec/Jan (I can look all this up in my log....). Anyway, in Jan I began feeling some returning SD symptoms, particularly the stiffening of my hands and feet as I woke in the mornings. I also felt my face and mouth tightening up, and my feet peripheral neuropathy worsening, along with some in my hands and forearms. I may have also felt some joint stuff happening as well. To make a long story short, I increased my dose back to 5 days/wk and Dr. F. concurred with the symptoms and my returning to the 5 days/wk dose. It has taken about 4 months for my symptoms to improve again, though I am also now on doxy (due to face blackness). So..., the short of it is that I don't see myself going back down to 3 days/wk (probably ever). I remember Richie posting about being very content to keep on daily mino. Enough for now...about another 20 mins of drip to go!!!

Best,

Randy

[jeffn]

Good to hear from you Randy. Hope you are doing well, I wish when I began there was an IV friendly doc close to me. No such luck. Your uptick in symptoms appears to be very similar to mine. At this point I feel that I am back to where I was, a good thing. Still on the 100 mg of mino every day. In regard to your 5 day a week dosage how do you split that up? Monday thru Friday or how? Thinking I may try and cut back to five days or every other day in a month or two or perhaps it is best to just stay where I am. Not sure yet, lots to think about.

[Randy]

Hi Jeff,

The 5 day schedule is no mino on Wed & Sat.

Best,

Randy

[jeffn]

That makes sense. Thanks for the feedback. If and when I reduce again I'll keep that in mind. What is your daily doxy dose?