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

Rituxan Thoughts...

I am on day 6 after my first Rituxan infusion. Last night, and today, the shortness of breath is finally subsiding. I still get short of breath after activity, but the duration is shorter. I recover quickly. Unfortunately, my pain levels are unchanged, and swelling in my hands is worse. My next infusion is April 30th. The doctor has been very communicative, and the pre medication protocol has been discussed in detail. It always feels better when you have a plan. ((-:

I don't usually document so much information about my treatments on my blog. However, this week, has been so difficult, and I discovered very few people to share experiences with, so, maybe this will help someone else in the future to not feel so alone in their reactions to Rituxan. I also discovered that I was relying too much on one or two internet sites for my Rheumatoid Arthritis information. I "branched" out on my own and did a lot of independent research and actually found a lot of good information out there. It took work, and diligence, but, I am understanding the protocol and the drug treatment clearly.

Many thanks to my family and friends that stuck by me this week. I did a lot of leaning and I appreciate the support...!

I still have my positive attitude and hope that this drug treatment WILL work.

My picture for this blog post is a favorite I took a few weeks back. I chose it, because it is a favorite and I reflected on it a lot this week, as one of those "pieces" of a great day...which carried me through the rough days.

A joyful heart is good medicine, but a crushed spirit dries up the bones.  Proverbs 17:22

Blessings ~~ Kim

Rituxan Reaction Continues

I am 3 days in to my Rituxan dosing and have yet to stop with the reactions. I have severe shortness of breath, rheumatoid pain and swelling in the hands, knees, and feet. My breath is so short, I am not able to speak on the phone in conversation. I had to draw a picture today of what I wanted at the store, because I could not "describe" it in speech without feeling like I was running in a marathon. Fortunately, Tom understood my drawing! I have been in contact with my doctor, she is aware and very supportive. I have promised her if I feel as if I need to go to ER, I will. We are trying benedryl for the next 72 hours. I am blogging and documenting this, so as to help others with Rituxan reactions and or treatment. I ask and ask those who have taken Rituxan, please share your experience. There is such a lack of information on this topic in RA world. I would really like to change that for the next person who has to take the medication. It is frustrating to feel alone in this medication treatment choice. I do know this, everything I have been able to read, has been positive. If I can just make it through these side effects, the potential of this medication truly helping has good possibilities for me. My next infusion is April 30. The doctor has already started planning to pre medicate me before I leave the house with benedryl, steroid, and Tylenol. So, once again, I ask... Please share your experiences. Thank you for your help... Kim

Rituxan Treatment and Infusion Reaction

My list of treatments for rheumatoid autoimmune reads like a list of popular, everyday commercials; Humira, Remicade, Cimzia, Orencia.  Methotrexate has been the only constant. And, go figure, it is the one that is in a severe shortage through the nation. All the other treatments, while they may have started out well, the relationship always ended with an allergic reaction or adverse effect that required me to discontinue the treatment.

Rituxan is considered the "big guns" in RAD. It took a lot of research, prayers, and talking, to get me to agree to this treatment. The side effects are pretty intense, but then the pain these last 10 days has been the worst. The pain level actually helped me make the decision. I also had a very nice Rheumatologist in Germany,  Dr.Lothar M. Kirsch, who gave me a lot of good information via twitter and his Blog - Rheumatologe. Between my own Rheum Doctor (Who is awesome ), Dr Kirsch, and a very good friend of mine, who reminded me, *Knowledge is power* (Keith-- that would be you!) I set out to research what I could about Rituxan. I was getting very little feedback from twitter and my other RA support sources. My research helped me to find several clinical studies endorsed by the American College of Rheumatology these studies were very favorable. Making my decision to treat, even easier.

I am starting to write this blog as I am sitting in the cubical awaiting the first dosing infusion of Rituxan. The nurse is confident and she was able to get my IV in with one stick (I am a hard stick). Thirty minutes prior to the infusion beginning, They have loaded me up with Tylenol, Benedryl (Orally) and 100mg of steroid (IV), to counter act any reaction I may have. I am in a hospital based setting, Sylvester at Deerfield Beach , with a nice ratio of nurses to patients, which is helping to ease my anxiety. Everyone is always so friendly here. They are constantly monitoring my vitals and keep checking on me. That alone is a comfort. The Rituxan has just started to drip in, I will be here for 5 hours. So far, I am feeling a little drowsy from the benedryl, but otherwise unremarkable. (My blog writing is is discontinued here, as I begin to have a reaction.)

(I resume writing this blog the following day)---  back to the infusion--I started to feel "tired", and I put my IPad away, maybe it was time for a snooze? I then started to feel an intense itching in my throat, the kind of itching I get when I am about to have a full blown "pollen" reaction. Then, congestion, my ears fill up, vertigo, sweating, and a constant clearing of my throat. I called the nurse over. She immediately stopped the Rituxan and called the Physician Assistant who is on the floor. They checked my vitals (I had a BP cuff on that had been automatically taking my BP) and they ordered up my benedryl in the IV stat. I was next to the pharmacy, so it got to me within seconds. The benedryl was adminstered, my doctor was called. The nurse explained very clearly everything that was going on and answered all of my questions. She explained that we had started the drip at 50ml, increasing it by 50ml every 30 minutes, until it reaches 400ml. Since I had a reaction, we had to drop the drip dose back again to 50ml and wean back up again. However, we could not start again, until my reaction went away. The nurse jokingly said, "You and I might be having dinner tonight!" The benedryl started to really kick in, the symptoms were gone, we started the dosing again. 50ml, 100ml, 150ml, .... oh oh... here comes 200ml. At 200 ml, I was admittedly a little nervous and I start to feel congestion. I decide to chalk it up to anxiety, I meditate, practice some mindfulness, and the 'feeling" goes away. In the meantime, my nurse is constantly checking on me. 250ml.... I am fine and so on it continues... in the last 15 minutes of the now 8 hour infusion... I hit the 400ml dosing!We finished the bag!

I got home, and I was almost giddy... that I had made it through the infusion! I emailed my awesome Rheum Doctor, and asked her if we could start with benedryl in the IV rather then orally for the next infusion in 2 weeks. She readily agrees. That is what I love about my Rheum team... it is truly a team. We have a game plan, all of the member's input was acknowledged and taken in to account. I have absolutely no fear of my next infusion. I know what to expect, I know I will be monitored. I will also be the self advocating patient and will alert the nurse as to my "quirks"  of the last infusion. (Unfortunately, my nurse of yesterday is moving to another location....or I would request her!)

Today- one day after the infusion, I am feeling good. I actually went to a favorite wild life refuge and took some pictures with my new lens I have received for my birthday.

 I was just sitting on a bench, "waiting" for the wild life, and this great Egret, in full breeding plumage came along and demonstrated his skills at finding a snack....of Sushi, as you can plainly see!

 

I fall back, to my favorite verse....

Philippians 4:13  I can do all things through Him who strengthens me.

Blessings....... Kim