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It's been a while since I last posted and having received the latest newsletter thought I would log in and say hi.
I had such a rough time with Minocycline last year that I came off it and went back to my consultant cap in hand who put me on Humira which I started in December.
After 4 months of Humira, supplemented with 4 weekly Kenalog injections, things weren't improving as I had hoped so I've gone onto a cocktail of Humira and 20mg Leflunomide daily from March 1st. I've also given up smoking at long last
So far, so good! I still have pains in my wrists and hands but nothing like previously.
I didn't get the chance last year to thank everyone for their support, I guess because I felt that I had let you all down. However with the extreme pain I was in I felt I had no alternative than to go back to my consultant.
I know traditional drugs dont work for everyone and there are a lot of people in a far worse situation than me, however for the time being, I'm going to stick with these.
Thank you to everyone who was so supportive and kind. May you all be well, happy and live in peace
Simon x
Simon,
I'm so glad that you posted, as I was thinking about you the other day, wondering how you were doing. I'm sorry that things didn't work out for you with the AP. Please check in ever once in a while, we love to hear how others are doing. You have not let anyone down, don't ever think that. We are all like family here and once you post you are stuck with us…. RIGHT EVERYONE!!! So Simon, my brother, Take care and the best of luck to you.
Judy
Hi Simon,
Sorry to hear that AP was a struggle, but very glad to hear that you are feeling some relief from pain now and best wishes that you will keep on getting better. Keep us posted.
Cheers
Hi Simon,
Thanks for stopping by with an update. I'm glad you've found a combination that is giving you some relief. Way to go on quitting smoking, that had to be a challenge.
Take care…..kim
Hi Simon,
How kind of you to stop back here to let us know how you're doing. I have thought of you a few times and wondered how you had got on in your decision to try Humira. Glad to hear you are getting some relief, Simon.
Please never think you let anyone here down…we're just here to support people wanting to use antibiotic therapy and no one is judged in their choices. Judy is right…you're part of the RBF family now, so if you ever decide you want to re-try AP while on Humira or not, you know we're going to be here for you. 😀
Peace, Maz
Yeah Simon. Hello to you to and glad you came by to share your good news. As has already been said, we're delighted to see you here any time. Lynnie
P.S. I take my hat off to you re the stopping smoking. I know from personal experience how very hard that is to do.
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)Simon, I remember when you were having such a rough go of it. No one will think less of you for taking the biologic, as we know what the pain can do. I took Remicade for almost a year and Humira for a short time. My best advice to you is to take as good care of yourself as you can, and bravo for quitting smoking!! I did it myself about a year and a half ago, thanks to a scary incident at the E.R. Didn't have sense enough to quit before that, smoked for 23 stupid years. Now I am one of those cigarette haters. I trust your Doc is keeping a close eye on your blood work. Take Care and All the Best, Jim:)
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