Kickas.org Forums Rheumatoid Arthritis General Discussion #1 RA Web Support Group Minocycline for RA

Hi Phil,

I can't eat nightshades either or I'm in trouble.

How long after you changed your diet did you feel relief ? Do you take zyflamend everyday or as needed, I never heard of it?Where do you get it?

Thanks,
Sheri

There was one or two references in the book to USpA and antibiotic, but yes it is more geared towards RA ... I do not know if there is any link between RA and USpA, but if the theory of the link between AS and the gut is correct, then theoretically antibiotics can be used to treat AS.

I am not sure if it will do anything for me or not, but I am not willing to not try any method of treatment.

I stopped eating potatoes sometime before Thanksgiving of last year, maybe October. I really noticed the morning stiffness diminishing by late November. I know everyone is different, but I would say a month at least to see any results.

At the time I didn't know what all the "nightshade" family consisted of, but now I try not eat them. I do enjoy salsa though, and so far it hasn't seemed to give me any trouble. Bottom line though, I try not to eat any potatoes, from time to time I will get some fries though, maybe once or twice a month ... so far it has not caused a flare up.

As for Zyflamend, I take it twice a day, with lunch and dinner. I have never heard of it either until the doctor who perscribed me Minocin recommended it. I initially bought it at the local natural pharmacy, but now I get it online. I was paying $76 for 120, just got 144 for $36.

here is a link to the website for it:
http://www.newchapter.com/zyflamend/zyflamend

Phil,

How are your labs, as far as inlfammation goes? Do you have a high sed rate? Has it improved with the changes you mentioned above?
Thanks,
Sheri

My veins have been hard lately when I get poked for an IV. The other day I was poked 5 times in one arm by 2 different RNs, they were both expereinced too. Is vein hardening common with prednisone &or RA?
Kinda creepy. It happened the next week too, another couple of nurses poked me 3 times and said my veins were hard and could not get the iv to work. ??? If you have heard of this let me know, thanks.
Sheri

Hmmm... my veins seem to be developing some slight scarring from the endless rounds of blood tests but I wouldn't have described it as hardening.

I'm curious if you learn any more.

I haven't been on it long enough to get checked yet ... I go back in march

Well it's been 6 months. It didn't go exactly the way I had planned.Around month 4 my anemia got really bad because of the constant inflammation and it scared me, my hemoglobin was in the 8's and I was told I may need a blood transfusion. This coupled with a lot of pain made me choose something in addition to minocycline, I chose Orencia.It is my first biologic and I was terribly scared to start it. But for me, the unrelenting pain day in and day out basically drove me to do something to relieve myself. My inflammtion was just too much for me.

So anyway,
The 5th month I started with infusions of Orencia, so far I have had 3, 2 weeks apart. I have no swelling or stiffness in my knees or wrists anymore. My doctor told me I look the best he has ever seen me. I don't know what to attribute it to because I couldn't hold out the entire 6 months on minocycline alone, so I screwed up the results.
My lower back & sacrum still hurt and I want to get further testing to see if I have A.S.
I know there are a good number of people that have had a lot of success with minocycline for rheumatic diseases. I definately think it is worth a try. Before I started Orencia I noticed the minocycline helped my wrists and knees, but the pain in my sacrum/lower back never let up ,hopefully it will soon.

Lastly, roadback.org has a lot of testimonials and info about antibiotics for rheumatic diseases.

Hi Sheri,

I'm glad to hear the Orencia is working although I can see why you are disappointed not to be able to finish the six month test of minocycline.

My anemia was getting worse as well before I gave in and went on methotrexate. I think you can get to a point where you have no choice but to accept the more serious drugs because your life is at risk if you don't. That's certainly how I felt.

I'm about to switch to injecting methotrexate because I've developed debilitating nausea for 24 - 48 hours after each dose of the oral methotrexate. I'm so hoping that will put me back to where I was a few months ago. I seem to have been going downhill for weeks now.

I wonder about the lower back and sacrum because I've been experiencing that intermittently as well. I've thought it might be because I have to sleep on my back because of my painful shoulders. Sometimes it's bad enough that I'm limping but I also have days when it's mild so I'm not sure what to make of it.

Thanks for the update on the minocycline. I've been curious about how you were getting along.

Just got my labs back, they are the best in a year and a half, best since my diagnosis. Sed rate is normal... finally and crp 1.70,so it has come down considerably. I hope I continue to improve.