The Drug We Love to Hate- Prednisone

I mentioned in my last Blog about High Dose Steroids. How many of us with Rheumatoid Arthritis take steroids at high doses to stop a flare? After reading this blog, you may want to speak to your rheumatologist about somehow curbing the use of steroids until it is absolutely necessary. Don’t get me wrong, I have used steroids and saw the potential of their use, but I have developed an illness now that prevents me from using them as I did in the past.

After Xeljanz failed me, I went in to a serious flare up of my disease. So, We (my rheumatologist and I) decided to go up to 40 mg of steroid to see if we could curb the flare. I also was given two injections of solumedrol. The combinations of these high dose steroids turned me in to the “Pillsbury dough boy” with Cushing Syndrome. I was extremely swollen and my face was puffy and round. This was around Christmas time. I felt very fatigued, weak and frequently out of breath. I blamed the Cushings and took a lot of rests and naps.

On January 15, 2014, I went down to Miami for a simple follow up with my cardiologist. In taking my blood pressure and pulse ox, they noticed that my lips were blue and I had a pulse ox of 66. At their insistence I went to ER, which was on the same floor. Apparently, according to them, I was not very cooperative and I kept telling them I was fine. (I truly don’t remember). Tom was called and he came down on the Tri Rail, because I didn’t think I could drive home. Not only was I not able to drive home, I was admitted! After a Bronchoscope I was diagnosed with PCP Pneumonia. (Pneumocystis Pneumonia ). PCP is a common pneumonia in people with immune system issues and is very common in the HIV community. My pulmonologists all agree that the pneumonia was brought on by my use of steroids and Rheumatoid Arthritis treatments.  The equally disturbing thing about PCP pneumonia is that once you have it, it is always harbored in your system and if I choose to do any sort of immunosuppressant therapies I will have to be on specific antibiotics. For me, that means Mepron, because I am allergic to Bactrim.  I ended up being in the hospital for 16 days. Due to the fact I am allergic to each antibiotic that they tried on me.

Due to this medical episode, I have now added two more doctors in to my calendar. A Pulmonologist and an Infectious Disease Doctor. Not to mention, if I choose to treat my RA, I have to be on expensive antibiotics in addition to my RA medications. In all of my treatments with steroids, nobody every told me about this common side effect of high dose steroids. So, consider yourself warned, we all take steroids and if you are like me, you think the side effects won’t affect you.  Well, I am here to tell you, the side effects are to be taken seriously.  Please be sure you understand and ask questions before your next high dose of steroids. 

Do You Overlook Symptoms?

My experience, with Xeljanz is purely anecdotal; this is my experience with the drug. Please take the information given for what it is, just one person’s experience, as we all react different to medication.

I started taking Xeljanz on April 24, 2013. I had high hopes and I felt relief within a week! My fatigue was no longer an issue, my RA pain and swelling were reducing every day.  My blood-work was even correlating with my symptoms! I was not 100 percent, but I was managing. I still had to plan out my activities and be careful to not over do things. I couldn't overdo, because the damage from RA could not be repaired by Xeljanz. I was on it for 7 wonderful months. I traveled, I went places, I got the house in order, I used every second of time that I could. Around August, 2013, I noticed an increase in pain, I attributed it to “over doing” it. I increased pain meds, and kept "maintaining" however, my blood work and inflammation markers tell a different story. Early in November 2013, I woke up in incredible pain and swelling in hips, knees, ankles. I increased my prednisone and I emailed my rheumatologist, all through the next week, we emailed, increasing the prednisone with every email to try and get a handle on the pain. My Rheumatologist also asked me to stop taking the Xeljanz at this point. I really did not want to stop taking the drug, but I complied with her wishes.  My pain became so severe that I went to an urgent care up here and asked them to give me an IM shot of 60 mgs of Solumedrol. The clinic complied. It helped for about 24 hours and then the pain and swelling were back. I was now on 40 mgs of prednisone and still very swollen and in a lot of pain. I saw my Rheumatologist on Nov 25, 2013, and she administered another IM injection of Solumedrol.  I was so disappointed that I had to go off of the Xeljanz, but my doctor insisted. (Little did I know what the high dose steroids were doing to my lungs at this time, that is another story to come--)

When I started to feel better (due to the high dose steroids) I called Pfizer (The manufacturer of Xeljanz) and reported my “adverse reaction”. At first the woman on the phone did not want to take my “story” as an adverse reaction… she kept “correcting” me, trying to put words in my mouth that were positive about my experience with the drug. I was firm and kept repeating myself until FINALLY she started to document what I was actually saying. I had my dates, my doses, everything documented. I asked her to read back my “testimony” and she finally had it correct. A few days later I received paperwork with my “adverse reaction” as well as an apology AND an offer to pay me back for the last month of Xeljanz. The cost for that monthly supply was over 600 dollars, so I took them up on the offer. I did not sign any documentation in order to get the refund.  

As I mentioned at the beginning of my post, this was my experience, and we are all different. However, with my experience, please take the following two things with you. 

First, we are so hopeful for a new drug protocol to work, that we sometimes overlook symptoms. Xeljanz was failing me as early as August, but I chose not to see it.

Second, as with ANY drug, if you have an adverse reaction, please report it to the manufacturer. They (the manufacturer) learn from us, the consumer. Especially on a new drug such as Xeljanz.  

Blessings…

Kim

Good Days, Bad Days, Rheum Days

I had a rituximab chemo infusion today, and part of the pre med is a large dose of  IV steroid, so I am feeling very good (Steroids reduce the inflammation of RA). However, it also hypes you up, where you can't sleep and you are the energizer bunny! The infusion went very well and I tolerated the procedure better then in the past, now, comes the prayer that it will work! This 'steroid" feeling will last 24 to 48 hours if I am lucky. I will take advantage of the time.

 I posted the title above a few weeks ago on twitter, and somebody said, "that reminds me of Dr Seuss!" Yes-- it does rhyme like Seuss... today... I recalled a book by Seuss.. and dug it out of my huge collection of children's books. It is called My Many Colored Days, by Dr Seuss, copyright 1996. As I read the pages... I was able to 'connect" with the simple book in a whole different way--as an adult with Rheumatoid Arthritis and Crohns. Allow me to quote a few of the pages: All italics/ bold are from the book.

Some days are yellow -- a happy face... this is ME, before Rheum. I loved yellow and always wore yellow on rainy days, as my mom told me, it reminded people that the sun would return!
Some days of course, feel sort of brown, then I feel slow and low, low down. A sad bear depicts this picture... oh oh, Rheum has hit me, only, I  didn't know what it was...thus began my journey.
Then comes a yellow day and, Weeeeeeeeeeeeeeeeeeeeeee, I am a busy bee! Wait! Maybe I just had a 'bug" of some sort.. and I am all better now... blissful ignorance, I am not sick!
Gray Day...everything is gray. I watch. But nothing moves today. Oh oh... it hurts to move AGAIN!? What is wrong with me? I am sick AGAIN! I am in a major crohns flare and am hospitalized twice. This is when I become really sick and I am one of the lucky ones with blood work to prove my RA and Crohns. I am diagnosed with RA and Crohns. May, 2010. (my birth month, BTW)
On Purple days... I'm sad. I groan. I drag my tail, I walk alone. The realization of these diseases and what they are doing to me and my body hits me like a dinosaur (as depicted in the book).
Then come my black days. MAD and LOUD I howl, I growl at every cloud. Depression hits, Anger hits... in real life. This is MY LIFE... do I wallow in the black and purple days!? Similar to the bruises that methotrexate sub q injections give me every week? I try not too.... because the book ends....with this...
But it all turns out all right, you see. and I go back to being ME. Again, the depiction of a YELLOW stick figure. Rheum and Crohns take away a lot of things, but... it can't take away the ME inside... I am the same person... just modified to combat both of these diseases face forward.

To end....I am also a big fan of pink!  the words for pink are But when my days are happy PINK, JUMP, its great to just NOT think. These are the days, that I over due it, and pay for it later... "pay to play" as they say. I have to be extremely careful that I do not overdue tomorrow with this dose of steroids in me, as I will pay for it come Saturday or Sunday.

GOOD DAYS, BAD DAYS, RHEUM DAYS.....

What color are you today??

Psalm 23:1-4
The LORD is my shepherd; I shall not want.He makes me to lie down in green pastures;He leads me beside the still waters.He restores my soul;He leads me in the paths of righteousness For His name's sake.Yea, though I walk through the valley of the shadow of death,I will fear no evil;For You are with me; Your rod and Your staff, they comfort me.

Blessings ~ Kim

My Rituximab Journey Continues

I am now in my 11th week of Rituximab therapy for Rhuematoid Arthritis (RA). The differences I have noticed are subtle. Most noticeably is the swelling of my joints. The swelling has decreased and with that I have been able to reduce my prednisone intake by half. However, I still have a considerable amount of pain in the hips.  The spinal doctor attributes this directly to RA and not the lumbar issue. His solution is Ultrasound Guided Cortisone Injections in to both hips. This procedure will be done next week. My Rheumatologist feels that with the hip injections and another round of Rituximab infusions on July 19th and August 2nd, I may be able to reduce my prednisone intake even more and the pain will start to diminish. I am willing to give it a try. I had been told at the outset, that this therapy was not a quick fix and that results would not be seen immediately. I am still feeling the fatigue and general malaise of RA and hope that will diminish with the pain as well.

In the meantime, I have finally hooked up with a few fellow positive minded #Rheum patients who take Rituximab. We call ourselves the #RituxanRockstars a term coined by @Peaches42 when she described how Rituximab made her feel (Like a Rockstar!). Others in our "rockstar" group include @RAW4RA and @Juvey_Chick . We are in all different phases of our treatment and the support given to me alone, by all three of these ladies has been fantastic. Thank you to all of you! When I first started on this treatment, I could not find anyone who had taken it before. This made the process even scarier. Whether the treatment works or not, it is just nice to know that someone has traveled the same road.

I have discovered, the hard way, that Rituximab can cause insomnia. It helps to have a good doctor who is familiar with the different classes of medications to finally realize this was part of my lack of sleep issues. Those issues are resolving, now that we know the cause.


If your doctor and you decide to take the Rituximab journey, be sure to enroll in the Rituxan Experience Program to assist you with the co pay or co insurance. 

As with any treatment for Rheumatoid Arthritis, what works for me, may not work for you. My best advice is to go in to each treatment with a positive attitude that the treatment WILL work and you will feel and see results soon!

1 Corinthians 16:6
Perhaps I will stay with you awhile, or even spend the winter, so that you can help me on my journey, wherever I go.

Blessings... Kim

Are YOU worth it?

As many of you know, I am a big fan of social media. On twitter the conversations in the RA world often center around the poor doctor care many have received during the course of their illness. There are some days when, if I only based my opinions by what I read on twitter, I would think there are honestly no good doctors out there! I, of course, know this is not the case.  I am fortunate to have an excellent Rheumatologist, but I also come from a large family of doctors of numerous specialties. I see, personally, how the doctors in my family go off in to a room during a family function to make a call about a patient they are concerned about. I experience personally, the complete and thorough care I get from my rheumatologist. Am I worth it, YES!

Finding a good doctor can be frustrating, but I feel it is the best gift a person can give oneself, especially those of us dealing with a chronic illness. Most of my care is done through the University of Miami healthcare system. The trip to Miami from my house is 172 miles round trip. Factor in the traffic, and it can be a healthy 2 hour trip (one way). Fortunately, there are several other closer options, one of which is the Sylvester Comprehensive Cancer Center which is 92 miles round trip. This week, I have made the trip to Deerfield two times. During the next couple of weeks, I will be making the trip two to three times a week. Am I worth it? YES!

At the Pharmacy this past week, I met a man, who had undergone hip replacement with a lot of complications. He was wanting to see a new doctor, but just didn't want to drive more then 20 miles to do so. His complications had, so far, taken a year from his life, with 2 more surgeries in his future, all because he did not want to drive more then 20 miles! Is he worth the mileage to find a new doctor? YES! He will never recover that year of his life!

Finding a doctor that you "click" with can take work, serious work, networking, and time. Are YOU worth it? YES! But, you have to commit yourself to doing the work and finding the doctor that works with you and treats you as a team player. I truly believe the best way to find a doctor is by asking patients, asking other doctors, and doing a lot of research. That first visit to the "new" doctor is a job interview for that doctor to take on your care. If you don't "click", time for more research to find another doctor. All of the responsibility to finding that doctor, that will work with you, falls on your shoulders as the patient, it is a heavy burden. Are you worth it? YES! Are you worth the effort? YES! Is it exhausting? You betcha! The patient must take the responsibility of finding the doctor that works for them. We can not expect the "perfect" doctor to call us up and ask to be our doctor!

I see a lot of energy put in to complaining about doctors and how they do not listen, or they give "misinformation". While it is good to vent, and get the negative feelings out, why not spend some of that energy in finding another doctor? Start posting what you are looking for in a doctor, this will not only help you to narrow down and refine your search, but may also help others in determining what they are looking for in a doctor.  I actually posted a tweet a few weeks ago, something to the effect of... "I love my Rheum Dr because _____ and _____. There was not a single reply to that tweet, nor a single re-tweet. Let's help each other in learning to advocate by posting what we "want" in a doctor, instead of negative comments that are re-tweeted over and over again. Are YOU worth it? YES!

Pale Meadow Beauty photo by Kimberly S Byrne

Blessed be the God and Father of our Lord Jesus Christ, who has blessed us with every spiritual blessing in the heavenly places in Christ,  Ephesians 1:3

Blessings ~ Kim

Learning to Live...

A long overdue post-- I have been busy, learning a new lifestyle of Rheumatoid Arthritis and Crohns. Learning about limits, as well as discovering new hobbies, new friends, and things to keep my mind busy and my life productive. 

Medically- not a lot of changes. I am now just about 6 weeks into my Rituximab therapy. I have noticed some "subtle" changes. I still have hopes of the treatment working. My rheumatologist, as well as several I follow on Twitter, have expressed to me that after the third infusion, I will notice a difference. The third infusion can not happen until approx. 4 months after the first, due to the long half life of Rituximab. So-- that will not occur until around August. In the meantime, my Rheumatologist updated my xrays on my back and noticed the following...

"There is mild dextrotilt centered at L2.   There is no lateral subluxation.  There is no anterior or posterior listhesis.   The vertebral body heights are preserved.  There is severe disc space narrowing at L2-3 with endplate sclerosis.  There is facet disease from L3-4 through L5-S1.  There is no fracture visualized.   The soft tissues are unremarkable." 

So, this newest diagnosis bought me a ticket to a spinal doctor for a possible series of epidurals, as well as a stint in physical therapy. The physical therapy is actually a positive, as I picked a place with a heated pool. I start next week and am looking forward to learning some exercises that I can continue in our own pool. 

Back to the topic of my blog... "Learning to Live..." That is exactly what I am trying to do. I have returned to the comfortable fold of several of my close dog friends, and have met a few new friends along the way. While, I can't train Annie, I can tag along with Tom, and take photos of her and the other dogs tracking. I have enjoyed renewing the friendships and 'talking" dogs. I have also been volunteering with the chimps at Lion Country Safari through Chimpanzoo, a program supported by The Jane Goodall Institute . I also just volunteered to be on the news and events committee in our neighborhood, so I am hoping that will give me some extra diversion in my new lifestyle. Sadly, I have not been able to get to see my seaturtles as much as I would like. This is mostly due to the distance of the drive. However, I do have plans next week to make a special trip to meet the newest "patient", Betsy, at Loggerhead Marinelife.

While making these changes in "learning to live", I have come across the realization that, I do not want my diagnosis to "all consume" my life and become a 24/7 job of teaching people awareness, and/or becoming the walking 'billboard" of RA and Crohns. My "support" group of people, has become remarkably absent of those whom have been diagnosed with autoimmune disease, and truthfully, I think this is healthier for me. My friends are diverse, some living with chronic illness but not allowing it to define them, and some living with what life has to offer. All of the friends I surround myself are positive in nature, and a fun loving group. Our similarities tend to include a love of dogs, animals, nature, conservation, and of course photography.  This "changeover" in my support system has been a healthy learning experience for me. I see others, "all consumed", living and breathing, RA, Crohns, and Chronic illness, while the illness is there, and I am not advocating ignoring it, I am advocating to broaden your horizons, and to find meaning or purpose in activities and people that are not necessarily in the same medical situation as you. 

The thief comes only to steal and kill and destroy. I came that they may have life and have it abundantly. John 10:10

Blessings ~ Kim 




Pictured is Max, my BFL husband's tracking dog, working to find the glove!

2nd Rituximab Infusion

My second infusion was April 30th. The infusion was uneventful! My rheum doctor had increased my pre medications, so I did not experience a reaction. I did, however, experience some vein burning sensation. On Day 2 after my infusion, my breathing difficulties started to emerge. I took my inhalers prescribed by my Rheum doctor and am currently sleeping with the humidifier or hanging out in the bedroom with the humidifier if I feel shortness of breath. I am weak, and fatigued, but that is to be expected from the infusion.

Unfortunately, my RA pain levels are the same. The pain is the most severe in the morning (take your breath away), and is a constant all day. It is mostly in my hips, and low back, which makes bending, twisting, sitting to standing, a difficult chore. I am learning to adapt my surroundings and environment more and more to make things accessible to my wants and needs.

I was able to do a short stint of observing the Chimps today at Lion Country Safari .  

And this is our confidence, that if we pray according to His will, He will hear us, and give us what we ask for, because our desires are in agreement with His thoughts for us. (1 John 5:14-15)

Blessings ~ Kim