Friday, November 8, 2013

And the roller coaster ride that is RA continues.....

I was so happy that I had finally returned to remission, then WHAM-O! Once again, a mishap with a drug interaction occurred.

On June 13th, a Thursday evening, I was sitting in my recliner enjoying the tv after a hard day's work. I noticed that the back of my arm was irritated as it brushed against the leather (I was wearing a t shirt with short sleeves). I thought maybe somehow the recliner had something on it, so I got up and cleaned it off, and rinsed it well. Sat back down, same stinging sensation. So I pulled my arm away. About half an hour later, I was suddenly in some of the strangest pain I had ever felt. The back of my arm, and the left front of my chest below my breast suddenly felt as though someone had taken a power sander to them. The pain was incredible. Anything touching my skin caused immediate and intense pain. I literally had to remove my t shirt and bra.  I looked in the mirror, saw no rash or indication of what could be causing that.

The next morning, it was continuing, so I called the doctor and got an appointment for a week later. Meanwhile, went online and kept searching for my symptoms. After three days, still no rash, just a very faint pinkness since I knew where to look, and after reading hundreds of entries on forums about "skin pain with no rash", I came to the conclusion that I must have Shingles Without A Rash. The pain did not go away. The following Thursday, my regular doctor was not available, I had to see one of the spare hacks in the office, and he very snottily told me that I could not possibly have shingles because that could not occur on both the back of an arm and on the chest. He is an idiot. He is wrong. He prescribed a cortisone type cream (I had tried the OTC Hydrocortisone, it had not helped) called TRIAMCINOLONE.  If you have RA, beware of this one! Anyhow, it is to be used sparingly, and comes in a very tiny tube. I dabbed on enough to be able to spread it over the two areas. 45 minutes later, as I was again sitting in my recliner, suddenly my entire body was as if it were on fire. Every pore in my body was pouring forth sweat! This lasted for about 3 to 4 minutes, and I was totally drenched from head to toe. My hair was plastered against my head, my clothes were soaking wet. Then it stopped suddenly, and I was freezing cold (from the moisture, no doubt) and also felt nausea and just plain rotten for about 10 minutes, then I was fine (and able to go get in the shower and put on dry clothes). 

Sure enough, two days later I noticed that the knuckles on my middle and 4th fingers of my right hand were all swollen. I figured it was RA flaring after the drug reaction. Over the next two weeks, I would notice that the swelling would increase then subside. One evening, I had a nice hot bowl of Trader Joe's whole grain cereal....rye, barley, wheat and oats. It was delicious. And two hours later my knuckles were swelling like crazy. OK, did a little research, found that the cereal would be more properly named DEATH BY GLUTEN.  So suddenly I am now gluten-sensitive. Not a big deal, as I rarely eat pasta or bread, but I got rid of all my crackers and wheat based foods. Over the next few weeks, the knuckles did not get huge again, but were not exactly going back to normal. So far I was still sticking with the 3 capsules per week, but I had run out of Minocin and was taking only Vibramycin. Minocin is better able to treat flares, vibramycin is OK for maintenance. I got a new prescription for Minocin, and started taking that. Then one evening (about three weeks ago) I had some fresh brussel sprouts for dinner. Yum!  And two hours later my knuckles went berserk again.  More research, already have been told that I should stay away from drugs with Sulfates, now realize that I have a new sensitivity to foods with sulfates.  More research, found that THIOL is the ingredient to avoid, so for the past two weeks have been working to stay on a relatively gluten-free, low thiol diet. And I upped my dose to two caps every Mon Wed Fri starting last week. Things are SLOWLY improving with the knuckles, but it will probably take another 3 to 4 months!  Meanwhile, need to also take LOTS of probiotics to rebuild the gut colony which apparently was destroyed when I had that full body reaction to the cream used for shingles.

Which did not work anyway. I had taken the shingles vaccine last December, and it seems that with the advent of that vaccine, there are more and more people getting shingles without a rash. Which is a good thing, compared to regular shingles. It took almost 6 weeks to finally be pain free. And the only thing that seemed to help was GOLD BOND BODY POWDER. No rash ever showed up, thankfully.

One thing about this disease (RA,not shingles), you can never eradicate it. It lingers in the recesses of your joints (and who knows where in the rest of the body) and is opportunistic.

A friend just sent me an article about a new discovery regarding RA and LEAKY GUT....specifically, a certain gut bacteria that is found in 75 % of all new RA patients, not in non-RA patients so much. See the article at  

So maybe they will finally figure it out. I have no doubt that mine was brought on after a year long bout with GIARDIA which the idiot doctors kept saying was "stress", during which time the Giardia created multiple lesions in my colon. Creating a "leaky gut".

So whenever I have some sort of bad reaction to a drug, the RA flares up, and my eating habits have to go into hyper-careful mode. When things are in remission, I can eat almost anything in moderation with no ill effects.

Hang in there - it takes constant vigilance, but it is possible to live a fairly normal life for fairly long stretches of time using Minocin as a treatment. Forever, if you never have to take another drug for something! At least, that is what I have found. Now going into my 8th year with this.