Friday, December 6, 2013

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!

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.

Monday, May 13, 2013

Optimistic, still in remission.....

The last small flare was just a couple days before the Super Bowl this year. A result of eating too much of something I knew to be reactive when my system is susceptible. (Probably sunflower seeds...I buy them in the shell, so I can keep busy snacking for an hour without really taking in that many calories!) At any rate, I backed off the frequent sunflower seeds snacking and have been in complete remission since then. Not one single flare.

I know I am one very fortunate person!

I was thinking about the last drop-off from remission, which happened nearly a year ago, after a double whammy of taking Bactrim (very high in sulfates) and then taking a few megadoses of Potassium Citrate (yet I knew that I cannot eat any citrus foods at all because they cause RA reactions). Anyhow, that was last March, and the RA symptoms came back in a RUSH. It was like falling off a cliff. The top of the cliff is "perfectly normal for all intents and purposes" with regards to joints and overall health...IN REMISSION. The bottom of the cliff is "afflicted with every excruciating pain that RA can bring on".  Yep, just like falling off a cliff. One week you are hiking and walking and cooking and whatever with not a concern in the world about your hands or knees working. Then suddenly, I have to wear all sorts of protective wraps - ankles, knees, wrists - to keep from doing some horrible damage. Getting out of a chair is incredibly difficult. Lifting a coffee cup, ohmygod. Walking down the hall...scary. You know the drill, if you are reading this. This disease is hideous.

Anyhow, getting back to wellness was my goal. Prior to the fall-off, I had been taking only 3 pills PER WEEK. (alternate months, 100 mg Vibramycin, 100 mg Minocin, brand name drug capsules generics, no time-release.) So with the sudden onset of flares in all sorts of joints, jumping from one place in my body to the next every day, I had to double up on the dose, as if I were just starting, taking 2 capsules per day 7 days a week.

Long story short, it took a FULL 9 months to get back to the remission status. I definitely was improving along the way, and as I improved I kept cutting back on the dosage. By the time the full remission had returned, I was back to just 5 capsules per week. Shortly thereafter went down to the 3 per week (one on Mon., Wed., and Fri.)

I go back to the cliff analogy. RA comes on like falling off a cliff. Remission comes back like climbing back UP the cliff...with no ropes. Long, strenuous, tedious, scary climb back up, but you have to have faith that at the top, there is a place of great beauty.

Saw my Rheumatologist last week. When he came in, he just beamed when he saw me. He is starting to get excited about my ability to stave off the RA symptoms with the antibiotics. He told the nurse in the room how incredible this was. And yet, when I pushed him to PLEASE offer this treatment to his other patients, he said that he was afraid to do so, because people would think he was not a good doctor, since this treatment is not the STANDARD WAY to treat this disease. "But", I said, "isn't it better to first try to use a NON TOXIC treatment? Just for a little while? Just to SEE if it would work?" He said that most people do not respond to this treatment like I do. But what I have read says clearly otherwise. In fact, every study that has been done on this (I refer to the standard clinical trials that have been conducted in the US and all over the world over the past 40 years on this treatment) ALWAYS show that somewhere between 60 and 85% of the patients show IMPROVEMENT using this antibiotic treatment. I think it is so HORRIBLE that my doctor knows that there is a non toxic OPTION out there that could literally SAVE PEOPLE from the horrors of rheumatoid arthritis and the horrid side effects of so many of the standard treatments, yet he will not even give people that information! It is just NOT RIGHT. Isn't the code supposed to be "First, do no harm."??

As I have said before, I vow and promise that if I win the lottery, I will spend part of that money doing a Public Service Ad to let RA patients know that there IS another way to treat this disease! At least, for SOME of us (many thousands of us) this treatment WORKS!!

My heart goes out to those who suffer the pain of this disease. I have no idea what is going on inside (because RA does as much if not more damage to the heart and lungs as it does to the joints), but at least, for now, I am able to pretty much function physically normally. (My biggest hindrance is my weight, so I do need to work on that!)

peace out!

Wednesday, March 13, 2013

Another month, in remission, feeling great

One of the things that people who are healthy do not understand about arthritis is how DEPRESSING this disease can be. For a while, I thought it was just me, being a baby about having pains and limitations to what I can do. When I am battling to get this disease back under control, I definitely go into a clinically depressed state. I sit there, recognize the issue, KNOW that this too, will pass, but it is a battle, nonetheless.

But the last thing I would want is to take any sort of drug to combat depression. Lordy lordy, after that issue I had with Bactrim a year ago, I have a great fear of ever having to take any other drugs (other than my trusty Vibramycin and Minocin) ever again! So I just muddle thru, trying to stay in touch with friends who are glass-half-full sorts. I pretty much pulled away from the few glass-getting-empty sorts years ago. When a friend just pulls you down, you gotta walk away.

Anyhow, the combination of finally, finally finally getting back to 100% remission, and adding new activities to my life has made me a much happier person. For those of you who are, like me, single, and of an age where it becomes more difficult to meet new people, I have to recommend a wonderful online source - MEETUP.COM. In MOST areas of the country (sorry, but if you live in Akron Ohio this has not caught on so much...) you can find meetup groups of people to match ANY sort of hobbies or activities you may be interested in. Like reading? Meetup book taking photos, and want to improve your skills...Meetup photo groups. Like to travel? Meetup travel groups. Play bingo? Meetup bingo clubs. Play Parcheesi? Meetup board game groups (they have those in Akron). Like trying new restaurants? Meetup dining out groups. No cost to join, most activities are free. You will find wonderful people joining these clubs. I cannot recommend this highly enough.

Anyhow, I love travel and photography. Don't have a lot of time to travel, so am hampered by that. But do have time to go on group photo-shoots. So I have joined several photo clubs, the members are fantastic - ranging from people with small point-and-shoot cameras to professional photographers, willing to share their expertise and help you take better photos. Whether it is going to a local zoo or local flower garden to take photos, it is always a nice little outing and great comraderie.

So, if you are feeling depressed, please get out and get more active or involved. You will be surprised at how much of an improvement this can make in your outlook!

A few handy tools everyone can use, especially those with RA

Over the years, I have been gradually modifying my home and supplies to better accomodate any future issues with RA in my hands and wrists. Those just starting on this long battle with RA need to start making simple changes around the house. All faucets should be the lever kind, rather than the round twisty sort. Much easier to use. Start changing the doorknobs to the lever types as well. It really is not difficult to do, does not require a locksmith, just someone that can operate a screwdriver. And new doorknobs are inexpensive, relatively speaking. If you need a quick fix, there are plastic levers that screw onto your doorknobs as well, though they are not real attractive. For those with extremely limited hand strength, you can add a cloth loop to assist in "turning" the knob.
My very favorite kitchen tool is currently unavailable on Amazon or other sites. I found it made by KitchenAid as well as another brand, but neither is available right now. Keep looking for this, I had purchased a half dozen and gave them as gifts to people with no hand problems, everyone loves them.
It adjusts to fit ANY size lid that needs to be screwed off, from a water bottle top to a mayonnaise jar. Also has a section on the front that goes under and helps lift vacuum sealed lids, and what looks like a bottle opener (tho I have not used that part)
Next is the vacuum -popper. This is awesome! No more trying to wedge a screwdriver or bottle opener up under a lid to break the vacuum seal...this does the job fast, easily, and with no damage to the lid!
I have cats, and they love their canned cat food. Which comes in a can with a ring pull lid. I love soup on a cold winter day, which comes in cans with ring pull lids. Whoever invented those had complete disregard for fingernails, much less those with any sort of hand issues, such as RA. Then I found this. What a wonderful wonderful tool!
And, finally, speaking of those pull ring tabs, we all get frustrated with opening soda cans. So I bought some of these (they come two to a pack). They are helpful.
Look for these on Amazon and in some of the handy catalogs that sell all sorts of stuff to help around the house.
Hope this was helpful!

Wednesday, February 13, 2013

In "remission", or "clinical recession"

Hi all

This comeback from the effects of my horrible experience with Bactrim as well as with megadoses of Potassium Citrate has been a very slow process. But I can say that I am finally getting to where I can go weeks without a flare. As long as I watch which foods I eat.

I read RA Warrior's blog and get her daily updates. I hate that she is in such constant pain. I KNOW what that is like, been thru it. I am one of the lucky ones, I know that. For me, using antibiotics and ONLY antibiotics has kept me pretty much pain free, flare free, and walking that "remission" tightrope for seven years now. MOST DAYS I get by with virtually no reminder that I have RA. I do not wake up with stiff joints. I have full use of my hands and fingers. Occasionally, I will eat something that triggers a problem. I can usually quickly identify the culprit, because the ache/flare will start in the joint within about 2 hours of eating.  Normally the pain lasts thru the nite but is gone by the next day.

A couple weeks ago something triggered a flare in my left knee. Had not had a problem with either knee in many years, but boy, when a knee is inflamed and hurts like heck, it is NO FUN trying to get up out of a chair! (I keep a lifter at the commode at all times...left it there after last Spring's bout with many flare-ups, even tho I do not need it 99% of the time).(I have purchased ALL SORTS of great items for people with RA - handy kitchen tools, doorknob assists, etc etc. I will have to do a separate posting on those items.) Anyhow, it was just a few days before the Super Bowl, and I was planning on having guests over for the game and a BBQ. (West Coast, we watch the show mid afternoon). Luckily, it was gone in a couple days. So then I ordered a knee brace, for the next time. (My mom does not have RA, but at age 88, she has had knee problems. She swears by the help that is offered by a good knee brace). It arrived today. I will test it out tonite just to see how it feels. And set it aside for "when the time comes" - because it inevitably does!

The RA Warrior blog includes information about the definition of "remission". I know not to get all excited about being in "remission". All that means is that the visible, tangible, obvious RA flares and sore joints are not occurring. We have to be aware that RA is attacking our hearts and lungs JUST THE WAY it attacks the joints. But that attack is impossible to guage. People with RA die at a frighteningly faster pace, younger age, then their non-RA counterparts. All we can do is make every effort to keep our hearts and lungs healthy by maintaining a low cholesterol level with the correct balance of HDL and LDL and triglicerides. We need to monitor our blood sugar to make sure we are not pre-diabetic or diabetic. We have to monitor our blood pressure. If it is out of normal range, find out what you need to do to get it back into the correct range...most likely those two often repeated things: DIET AND EXERCISE!  It helps our joints if we maintain a healthy weight. We help our bones if we make sure we eat a balanced diet with calcium-rich foods. We cannot stop the RA from ravaging our hearts...but we CAN make it fight an uphill battle by making our hearts healthy!

I wish, wish, wish that everyone could enjoy the freedom from pain that I have been so fortunate to enjoy these past seven years (for the most part). And if you have been newly diagnosed with this disease, please please please try the antibiotics treatment. See information at the website - The Road Back Foundation. Read Henry Scammell's book. (it is my bible!). There are naysayers out there - but we are each different, and this works for many thousands of us! With no horrid side effects!! Just Google for the information on this. PLEASE!!! I want more of you to stop suffering with this horrid disease!