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Just wondering if anyone knows how they are doing. They started ap around the same time i did (i think). I went off Methotrexate in March (yeah!!!):D Big mistake, guess it wasn't the mino alone working for me:crying:. Just haven't seen posts from these two gals in awhile, hope that is because they are busy living their lives.
Sue
Sue- Thanks for asking! I'm doing great! (knock on wood!! ;)) I'm so worried about jinxing myself! In a nutshell– here's what I did: Symptoms started the first week of December 2006. Diagnosed with RA in January of 2007. Did nothing until March of 2007—by that time I could hardly walk or lift my arms. Inflammation was in every joint, including jaw and tailbone. Visibly swollen, red and inflammed hands too. Started minocycline 200 mg 2x per day mid March. Continued to decline.
By summer I was hardly able to function. Ran daily fevers in the afternoons along with chills too. Frequently broke out in hives. Saw Dr. S in August and had a round of IV clindy. Went back on the mino, but Dr. S started decreasing my dosage as I was beginning to become sensitive to it. I did real well after the clindy and was beginning to function normally. I continued to have problems on the mino and Dr. S just kept decreasing my dosage until I was on 25 mg 1 per week and could hardly tolerate that. I would become very ill following that dose. Fever, chills, hardly able to move.
Dr. S then switched me to zithromax where I improved greatly (either cuz the zithro was helping or I was no longer taking the mino and just felt better, who knows??)
After about 2 months on zithro, I began having high liver enzymes. Had to go off the zithro. I've since re-tested and they are still high, but beginning to decrease. I have talked with Dr. S and he says to stay off it and he gave me two options: Try doxycycline or do nothing and if I flare, come back to him for more clindy IVs. I haven't made a decision yet. He wants me to wait until I return from a trip I'm taking in early June as he is concerned about trying anything new before that trip.
Currently, I have no real symptoms but for an occasional feeling in my hands and wrists. I currently take fish oil, probiotics, milk thistle and a vitamin. Sometimes I take turmeric too. I have recently started swallowing a garlic clove and just bought some grapefruit seed extract. I thought I'd try the natural antibiotic route for awhile until I return from my trip.
My bloodwork has returned to normal but for my ANA which remains high and my wbc count remains low and my liver enzymes are high. My sed rate, crp, anti-ccp and RF factor are all normal now.
That's my update. Thanks for asking Sue! How are you doing?
Oh Fran, that is so great to hear!!! In a nutshell, i had been weaning off prednisone, down to 5mg and stopped methotrexate in march. Unfortunately by mid-april i was bedridden and have since agreed with rhuemy to go on enbrel. i so hoped this ap would work for me but i simple cannot live like this anymore and so the potential help from traditional meds now outweigh the risks to me.
continued feeling well wishes to you.
sue
Sue- Hopefully you can get the flare under control soon. I remember those days of being non-functional. With four kids, I had to get things under control so I could continue to be their Mom. There are tough choices to be made by each of us and we each have to weigh our own individual situations and decide what's best. Do you plan on continuing the Ap while using Enbrel to get your flare under control?
This is a nasty disease and I feel very guarded about my improvements and take nothing for granted as I know how quickly things can change. I'm hopeful you will be able to get back to your life soon! Good luck–
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