Anemia and RA

[carries]

Hi Bonnielou! Are you in remission now? Just curious how long this is going to take. I am coming upto a year. I have seen improvements….just keeping the faith!

[bonnielou]

Hi Carrie. I guess it depends on how you define remission. My labs are not perfect — but they are better. And I haven't had some testing in almost a year. My next appointment is November so it will be good to see what the blood work looks like — although my rheumatologist doesn't do blood work often — she believes more in the clinical exam than the lab results. I would love to see the RH factor get into normal range … but who knows.

Clinically I am doing great. I do have some minor residual problems with hands and feet, and now and then discomfort in other areas (shoulders, knees, jaw) — but nothing that actually interferes with my life anymore. No one would ever guess there is anything wrong with me. I can ride my bike for hours, teach and practice yoga again, I work a demanding full time job, shop and cook — and appreciate every day that my body functions.

I would be thrilled to live like this the rest of my life. So if it's not remission, I'll still take it. And if it is remission, I am too afraid to change anything anyhow — except minor tweaking. We never know what is waiting around the corner. But I am celebrating today. I hope you get the same results.

Bonnie

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

[zakdog]

Thanks everyone for your advice,  I really appreciate it.  Phil, you absolutely may be right, it may be time to take my minocycline every other day instead of daily and that too may help out with the monthly vaginal yeast infections I am getting also.  Lots to think about but I really feel like the plaquenil may be a good addition too and may help with getting me away from prednisone and/or antiinflammatories as I am so much better but still want more improvement.  Crazy how when you start you just want to be able to sleep, and walk and take care of daily needs and as time progresses and things start to improve you decide you want it all including the marathon.  But we deserve it! 

[zakdog]

Phil,  I started on 5mg and slowly over 8 months decreased it to 0.  I did not have hair loss until I decreased to 2.5mg and then it started.  I am thrilled not to be so dependent on prednisone but wish the hair loss did not follow.

[zakdog]

Just a quick update…..my hematacrit went from 34 to 40 in the last couple months and my hair loss stopped. Now I tried numerous things recently but they were all short lived, plaque nil for a week and vision went all blurry, methotrexate 4 times and my body swelled up so they stopped it, thevonly things that were permanent and could have made a difference was not using prednisone regularly, instead just occasionally and starting zithromax 3 times a week. I didn’t think it was helping and was gonna quit but since I had the meeds decided to take it till I ran out….could it be the zithromax. I thought the lab screwed up. First positive lab in a year.

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