The Long Road Back With RA for 25 years

[eagleddm]

October 24, 2011
Began protocol September 19, 2011
50 mg Mincoyline MWF near bedtime

I wonder if I should be writing some place else on this site? What do you think, whoever reads this?

I want to keep a journal type writing is this the place to do it?

I am still at 50mg minocyline MWF. I thought about upping the dose to 100mg (2 caps) tonight. I take it near bedtime and it has helped greatly with the dizzyness. But I just dropped 5 mg of prednisone so this may affect me lots for a couple weeks. My goal is to get down to at least 10mg prednsione for the forseeable future until the AP begins to work.

The fatigue is still the major symptom I am dealing with, the joints hurt mostly in the hands.

My blood work is out of whack and I read in the book (I finished it and am starting over) “The Arthritis Breakthrough” it would be so I must be on track. My RBC was very low while in the hospital. It must have been due to the blood thinners they had me on. The next test showed levels were better, but on low side of normal. The iron is to low so I began some iron supps a few times a week to ward off constipation.

My CRP levels are up again. Last year they were near 90 which is way to high. Then it came down to 49 and is back up a bit right now. The normal is in the single digits. I hope one day I see this again.

The docs are hoping this is all due to the high doses of salumedro while in the hospital for 1 week in Sept.

Patience is the key!

Hope all is having a great day!

[eagleddm]

November 3, 2011, Thursday

I took 2 50mg minocycline last night. Feel a bit tired with headache. More pains in my joints than usual. A bit foggy in the head, with neck pain and right shoulder pain that has been here for a couple weeks ongoing. My eyes do not want to focus normally. I’m just out of it today.

Is this that? The Herx stuff?

Overall well-being, best it has been in a very long time!

Thanks for being here!

Deb

[eagleddm]

November 4, 2011, Friday night

Today I have been real tired and in overall body pain. On Wednesday night I took 2 50mg of minocycline. Yep, trying to push things along!

I will go back to the 50mg for now. I enjoyed not having much pain for the first time in a long time.

Thank you all so much for being here! I do not feel so alone anymore. I knew no one with RA, much less with all the other dis-eases that has touched me.

Will write more laater and have a wonderful weekend!

hugs,

Deb

[eagleddm]

11-11-11 Friday Update

With winter approaching I’m feeling better overall. My sleep is still not what I want it to be, but it is what it is.

Last week I did take 2 50mg minocycline on one of the nights. I felt horrid for days later. I came to the conclusion I do not need to feel this way to get long term results . I am in a marathon not a sprint! I will stick to the 50mg MWF for now. I just feel so good, the pain has lessened and is so tolerable compared to pre-AP. Even my lungs are doing better. I had to do 1 neb treatment this week, the last time was maybe 2 weeks ago. This is all with decreasing the prednisone by 5mg, down to 15mg now! Should I be doing anything different, that may be more helpful? My RA doc gave me the script for the mino and I thought because she knew about the AP. She gave it to me cause she “heard” it may be good for me. She did not hear about the AP so I will give her info.

Thank you moderators for all your help and thank you fellow AP’er for being here and sharing your progress!!

Deb

P.S. Still down to 15mg prednisone! /
Will decrease 5mg 11-18-11

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