Newbie Hopes Progress

[caroline123]

Well I’m feeling like I’m lost except for this forum! With gratitude I’m feeling better but realize that my rheumatologist is probably just “humoring” me. I’ve absorbed Henry Scammell’s book and am in awe of Dr Brown’s tenacity and gift he left us.

At my appointment last week I was told all my labs are improving and my liver is now holding normal. I also told the doctor I’m starting to taper Prednisone and agreed to do it slowly (am at 4mg now going to 3mg next week). She advised me she’s “gone along” with what I wanted by giving me the minocycline but that I should be considering starting the biologics ASAP!!! Also what I thought might have been the herx reaction she said was a very severe Raynauds attack.

When I asked why I should take biologics for RA if the attack was Raynauds, I guess I hit a raw nerve. So I was sent home with information for biologics and told to think seriously about it – next appointment is July. (Also got an RX renewal for minocycline!)

So now my dilemma – I’m insisting on staying with the AP but she doesn’t know how to follow protocol nor do I!!! I just printed out the page on asking for doctor’s list. I will email that shortly.

Any thoughts?

Thank you all for being there.

[lynnie_sydney]

At my appointment last week I was told all my labs are improving and my liver is now holding normal. I also told the doctor I’m starting to taper Prednisone and agreed to do it slowly (am at 4mg now going to 3mg next week). She advised me she’s “gone along” with what I wanted by giving me the minocycline but that I should be considering starting the biologics ASAP!!! Also what I thought might have been the herx reaction she said was a very severe Raynauds attack.

Oh gosh. That almost leaves me speechless – and docs wonder why we fire them! Caroline, the good thing is that you have another rx for mino (the GREAT thing is your results! 😀 ). If your herxing (which your rheumie would not subscribe to because she doesnt believe in infectious theory) has not been too much for you, then why not continue on the regime you’ve been on so far? It may take a while to get an AP doc you feel comfotable to work with, but with those results so far and another rx, sounds like you are in the driver’s seat. And many congrats on dropping your pred to 4mg. The last 5mg are usually the most difficult (this is where the adrenals need to wake up and kick in to start producing their own steroids once again). You might like to type ‘weaning pred’ into the search box at the top of the General Discussion front page and lots of past discussion on this will come up – especially things that others have found helpful for that last 5mg. 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)

[caroline123]

Thank you Lynnie. Just spent time reading “weaning pred” posts. Gives a greater understanding knowing that we all go through same/similar problems. Since last month when I had (what I thought) “herx” or flare (I prefer herx) landed me in ER where they gave me morphine and 60 mg Pred, I am being careful with the weaning. That was the second major reaction in a two week time frame, but the first one since 3/2010 when I got a formal diagnosis (as I lay in hospital recovering from heart problem caused by pain!) and could barely move from a fetal position.

Found this forum only a couple of months ago and since I started taking minocylcine I know that I am progressing on “road back” and even my husband has noticed the positive change. He said today that even my voice is sounding more normal. I know the road ahead has to be traveled slowly but it’s a journey I am hopefully going to be able to share fully someday. I just don’t want to make any drastic decisions that could put up a road block!!!!

One more quick question, do most people drop the hydroxychoroquine before or after prednisone?

Hopefully I will be able to find a doctor who is knowledgeable in AP, but until then my heartfelt thanks to you and all who share. I will change signature to read “weaning pred”. By the way originally I was on 20 mg, then 10 mg for several months, then 7.5 mg, then 5 mg.

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