The high cost of Minocin, more reliance on diet

Another drug company just bought the trademark rights to Minocin, though I understand that the same previous company is still manufacturing it. And the price has skyrocketed to $1670 for 30 100mg capsules, retail price. My drug coverage paid $1200 of that for my last refill, but I understand that this drug will no longer be covered by ANY insurance (even as a Tier 4 drug) after March 2016. However, on a positive note, Minocin/Minomycin is once again available thru Canadian pharmacies (or was a few weeks ago when I checked). So I am going to get a prescription for 100 capsules and order thru a Canadian pharmacy...price is around $200/100caps.

I recently had shoulder surgery for a rotator cuff injury, and then six weeks later I twisted my right knee. Within two days BOTH of my knees were suddenly swollen and stiff!! At first I though it was just the twisted knee causing that (I could barely walk, and twisting one knee put stress on the other knee). But after a few weeks, and using my inversion table to realign my knee, I found that I still had a lot of swelling both in my knee and my ankles. I went to see my Rheumatologist for a regular follow up visit, he gave me a general shot of cortisone, which over the next 10 days reduced the swelling. Four days later I saw my Orthopedic surgeon, who advised me to do some quadriceps exercises.

With the cortisone and the exercises, I am again able to walk fairly normally, but the knees are still a bit stiff, and I have a problem driving. Hoping that improves quickly.

I am really working on the diet and supplements, as well as the Minocin. I may start taking 200mg every M-W-F instead of 100.   And I am taking D3, Curcumin (Turmeric), Fish Oil, Probiotics, and getting some Glucosamine HCL (not sulfate, and sulfa is hostile to my RA). For diet, I am virtually gluten free (occasionally eat something fried, like chicken...)(Barilla makes EXCELLENT GF pasta!!) and try to eat Salmon several times a week, as well as Kale, blueberries with yogurt, apples and bananas, green salads, green veggies, carrots, sweet potatoes, chicken, fish, turkey, rice. Stay away from niteshade vegetables, and corn.

I am not taking any NSAIDS or pain killers for my knee. I find using a patella strap is the best support, as a full brace is overkill. Simple leg lifts to build the quadriceps while not involving the knee will hopefully help with the knee support. I have been able to walk roughly 3/4 of a mile with no pain, so that is progress!

And the ride continues......

Just a quick recommendation regarding the high cost of Minocin and Vibramycin

Because the generics (minocycline, doxycycline) may not work, and because of the change in ownership of the brand MINOCIN (now owned by Onset Pharmaceuticals), you may find that a 30 day supply of this drug is quite costly. It is no longer available thru Canadian pharmacies purchasing the product from other countries. In fact, I believe the price for those whose insurance does not cover this medication is right around $500 for 30 - 100mg capsules. I am on Medicare, with a supplement and additional Rx insurance. That insurance company does not cover Minocin as even a Tier 4 drug. However, I did discover that you can petition the insurance company for an exemption to cover your Minocin, if you have tried and failed to respond to the generic brands. My doctor had to send in a letter confirming that we tried the generic brands, and they failed to work, while Minocin (brand ) works. I was able to get at 66% discount on the cost of my medication! (you need to say you are using 1 per day). Since I only use an AVERAGE of 3 per week, (sometimes more, if a flare starts up), that prescription lasts me for two months. So the monthly cost is around $88. Much more manageable. So, if you find that your insurance will not cover this, and are on Medicare plus a Medicare drug prescription policy, see if you can get an exemption. They will send you the instructions.

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....

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!

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!

Update on fingers/knuckles issue

I saw my Rheumatologist for a checkup on November 13th, a month after having had MRI's taken of my hands. The MRI's had shown definite involvement of RA in the knuckles of my right hand and the forefinger of my left hand, as discussed in the previous entry.

He asked if I would like a Cortisone injection into the affected joints. I gladly agreed. I had only had one prior cortisone injection for RA, which was several years ago after a serious setback had caused a huge barrage of flares, and was in essence crippling me. (It takes a long time for the antibiotics that I take to eradicate the flares entirely...often 6 to 8 months. The one cortisone shot that he gave me that prior time quickly reversed the swollen joints, and with the antibiotics, I was able to keep things in remission for several years with no further flares). 

Anyhow, I recieved small injections into three different joints. It took several days, but the swelling went away, and I now once again have full use of all my fingers.  Hopefully, I can keep things that way with the minocin/vibramycin that I am taking.

Will keep you all posted if there are any changes!

Have a great holiday, and I hope you are all able to find something in my blog that helps you to reduce or hopefully eliminate your RA flares!

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 http://www.genengnews.com/gen-news-highlights/arthritic-bones-may-be-due-to-bugs-in-the-gut/81249078/  

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.