Saturday, October 11, 2014

Still truckin' - more ups and downs...

Recently I discovered that the Minocin brand had been sold in April 2012 to Onset Pharmaceuticals, a company specializing in skin care medications. Previously the brand was held by Triax, and before that Pfizer.

The previous brand owners were manufacturers of general antibiotics of all sorts. As I notice that I am having more difficulty staying in remission, I wonder if the new owners of the patent have possibly changed or used a cheaper source for the inert ingredient that carries the drug throughout the body. That is what happened with the generic brands of minocycline, and is why I can no longer use any of those (and I have tried every generic brand available in this area!)

Anyhow, I am finding that I have to be more and more careful about the foods I eat. Since my RA was triggered (and still is) by a leaky gut due to an undiagnosed year long bout with Giardia, which apparently turned my colon into swiss cheese, food products that have certain types of molecules will enter my bloodstream and create an "allergic" reaction, in the form of RA flares.

I originally discovered the link between food and RA as soon as I had been diagnosed. I immediately found that the following would trigger RA flares very shortly after eating: pork products, eggs, popcorn, tomatoes and other nightshade plants, all citrus.  Over the years, with the RA in remission and constant consumption of probiotic-filled yogurts and kefir and supplements, I have been able to return to a fairly normal diet, and eat in moderation of all of the previously "off my list" foods. Except for citrus.

More recently (in the past year) I have suddenly developed a sensitivity to gluten (brought on by a horrific reaction to a multigrain hot cereal containing barley, rye and oats). So now I minimize my intake of gluten.

I was on a tour of Ireland last month, and every single meal (served to the entire group with little choice) had huge amounts of delicious mashed potatoes as the main vegetable. Whether the main course was fish, ham, or beef, there was a huge mound of mashed potatoes. Often, the "starter" course would be a "cream of potato" or "cream of potato and carrot and turnip" soup.  Anyhow, about the 7th meal, flush with cream of potato soup and potatoes and beef, I found my fingers starting to swell up, with the joints getting larger. So after that, I had to avoid all potatoes. Not a bad thing, as I really did not need the extra calories. Unfortunately, the tour meals never offered a decent salad (an Irish salad seemed to be 5 tiny pieces of baby endive lettuce with a sliver of cucumber) or much in the way of green vegetables. All root vegetables. Don't go to Ireland for the food....tho the bangers for breakfast are wonderful!

So, that was just another reminder (potatoes are part of the nightshade family) that I am susceptible to foods, more now than ever.

But other than an issue with a trigger-finger a few months back (quickly relieved by a small cortisone shot in the hand, it did not return- plus my index finger on that hand, which had been partially bent for the past 7 years, is now totally straight!) and having to watch the diet, overall the RA seems to be staying in remission.  If I cheat and eat too much of things I know I should not eat, it does jump up and bite me!

I was able to make the swollen fingers and joints in Ireland go away by removing all potato and other trigger foods, and doubling up on the meds for about 10 days. Fingers went totally back to normal, started deflating within 36 hours.

Now I am back to the 3 days a week intake, and holding it together! I need to take more probiotics, as I ran out of the really strong supplements and have been doing with just the yogurts and such.

So, now at nearly 7 full years of remission due to using Minocin. With one general cortisone shot several years ago, and a few small ones in my fingers this past year.  At some point, someone has to realize there is a value to this treatment protocol!

I hope this information helps you! Let me know....

Thursday, May 29, 2014

Caution! RA alert!

Just got back from a cruise to Alaska (yep, retired, and hitting that bucket list!). Zero problems with RA.

After I returned, however, I got a little careless.

First, I made myself some popcorn. Next morning the fingers were a bit stiff. OOPS.

Then two days later I cooked up a bunch of country style pork ribs on the BBQ. YUM! But the next morning, my fingers were again somewhat stiff and the knuckle on my left middle finger was quite rigid. UH-OH.

Yep, popcorn and pork are two foods that I had reactions to when I first got RA. But that reactivity went away once I was well into remission. For whatever reason (I believe it has to do with a horrid reaction to BACTRIM last summer and the ensuing several months of having to climb back up the cliff to get back into RA remission with no symptoms) my "gut" is hyper sensitive once again to many foods. So I have to be sure to exclude eating much in the way of gluten (which is easy because there are so many gluten free things available, and I actually had stopped eating a lot of pasta anyhow), as well as tomatoes, pork, popcorn, brussel sprouts. Also I need to really hit the probiotics again, as I have been lazy about taking them. It will take several months to rebuild the protective lining of the gut to where I can test out a few of the "forbidden foods" to see if I am again free to eat a wider range of foods without fearing a flare-up.

The fingers swell up overnight, by about 10am they are back to normal. But they are a gentle reminder that I have to keep up the fight. Which means BOTH diet AND antibiotics PLUS supplements! Sigh. It is easy to fall off the wagon when you feel 100% normal....

ever onward with this battle!

Tuesday, April 22, 2014

All going well

It is now late April 2014. After the small injections into my knuckles last October, the swelling subsided, and even my left hand index finger, which had been half bent for several years, is now able to straighten completely. I can curl all fingers fully and easily. I have had no relapses, and am back to just the Monday-Wednesday-Friday single capsule dosage of Minocin or Vibramycin (I alternate months).

I am now retired, and went on a two week vacation tour to Thailand, had a wonderful time and had absolutely no RA issues. I have to say that since the Thai food is rice based rather than wheat based, my diet was about 95% gluten free, which probably helped.

I still find that I have to be cautious about foods that would trigger flares or arouse the RA within. Someone told me that black pepper is bad for RA, so I am reducing my use of that spice. I am also quite cautious about eating any nuts, and only eat a bowl of popcorn once a week. I minimize the gluten in my diet. The one time that I ignored that, going out for Christmas dinner at an Italian restaurant and eating "family style" several varieties of pasta dishes, plus garlic bread, then going back to the house and eating cookies and cake....well, I paid for it with sore joints and stiff fingers the next day. Nothing major, but a definite warning that I had abused my gluten levels!

Just had another appointment with my Rheumatologist. Again, I asked him why he would not at least suggest this treatment to his patients. He seemed to feel that the FDA would frown on that. I reminded him that this treatment is a recognized treatment, just not the currently recommended treatment. Still, he will not budge. Sad, because he is following the Big Pharma protocols to prescribe what is essentially toxic to the system to his other patients, and which has a high probability of causing organ damage and allowing cancer to grow. Not sure why he does not feel comfortable letting someone know they could TRY this, if they want...especially one who is recently diagnosed and still has a chance to be in remission!

So for now, the sleeping bear is sleeping, and I am trying my best not to rouse it.

My best wishes to anyone who is reading this and looking for a better way to handle this dreadful disease. I am going into year 8 of being in remission and 100% physically "normal", using just a small amount of antibiotics to keep the RA at bay. Yes, there have been setbacks, but my faith in this treatment has never waned, and the treatment has not failed me!