How can you tell it's working…

[Jeni]

Hi All,

I was just about to post how ecstatic I was yesterday because I felt so good. However, later in the evening my wrist started swelling and I couldn't bend it last night. I knew that I could have taken some ibuprofen and fixed it, ( I respond amazingly well to ibuprofen) but I took my Enbrel instead. I haven't taken much Enbrel in the last two months because I had a sinus infection, and then I conveniently avoided it because my kids were sick and I didn't want to catch anything…. Anyway, for the last week or so I have felt so great. I did just up my dosage of the mino to 100mg on Monday. Previously I had been on 50 mg M and W, with only Friday's dose at 100mg. I decided that I felt so darn good that I would now up Monday to 100mg! Well, yesterday I got that mini flare-up and I took my Enbrel. I was trying to taper off the Enbrel slowly, but it feels so good to get away from it. Anyway, today I feel great again and I took my 50mg of mino also.

My question is- how did you all know if  and when AP was going to work for you? I have been taking mino for about 3 months now and just started to feel really good. Previously, as I said, I had a sinus infection for a month and really didn't take any Enbrel to speak of. I had been feeling so optimistic for the last week until my wrist started hurting… I don't know if increasing to the 100mg on Monday caused a little flare or what? Did you all feel better and worse, or better continuously. It feels like it's going to work, but I hate to feel too overly optimistic yet! It's such a let down… I've had RA for 20 years and I feel like this is my last chance…

Jeni

[lynnie_sydney]

Sounds more likely to be a herx Jeni – related to upping the mino. Change of dosage frequently induces a herx response. It is often (though individualised) that it takes 6 months before improvements are noticed, so it looks like you are doing well at the 3 month mark. What I would suggest is that you start journalling daily how you are feeling. Improvements on AP can be minute, even glacial and they often take the form of two steps forward and one step back. That makes it hard to notice the improvements overall. Daily journalling will help you see a pattern emerge. Lynnie   

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Jeni]

Hi Lynnie,

Thanks for the suggestion. I usually only mark dosages and dates on my calendar, but you're right, it would be helpful to journal symptoms.

thanks,

jeni

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