Right now, I coming out of an RA flare. A flare is when your RA becomes very active and produces severe symptoms. Yes, even though I take a light chemotherapy cocktail of drugs to treat my RA, I still get flares and have the additional burden of the nasty side effects of the medication. Since rheumatoid arthritis is a disease in which your own immune system attacks your own body, the treatment involves drugs that stop my body from doing this. These are the same drugs that are used in chemotherapy to get cancer cells to stop replicating.Terrible side effects. But, these drugs have given me back my life and it still a better quality of life with them. Here is my coming-out RA story.
Early RA symptoms are lighter than more advanced RA, so much so that I lived with RA for many years before my official diagnosis in 2022. In truth, I had been plagued with fatigue, low grade fever and gastrointestinal issues since my college days. But I just dealt with it. It would not be until 2022 that I learned that much of my GI issues were either exacerbated or directly caused by RA and it is probably the reason I am so susceptible to diverticulitis, colitis and IBS. But I treated all my GI issues as isolated issues and developed very familiar relationship with my gastroenterologist since college and my colo-rectal surgeon since 2011.
In my 30's and 40's, I noticed that I was fatigued a lot and had bad knee pain but I chalked that up to me just being a sleepy head and arthritic from sports injuries. I started with steroid injections in my knees. In yearly 50's, my hands started to bother me. Pain and stiffness, especially in mornings. In 2015, I finally went to an orthopedic doctor about my hands and started with cortisone shots in my worst fingers: thumbs and middle fingers. I developed two trigger fingers. Important to note that most RA patients first notice the joint pain in their hands and/or feet.
In 2021, I had my second colon resection due to perforated diverticulitis. And within a matter of months, my left knee blew out all on its own. I was not doing anything special when it just gave way and I was left in excruciating pain and unable to put any weight or walk on that leg. It had finally given up the ghost and could not be brought back to any functionality. So I ended up with a total knee replacement months after my second colon resection.
I was very sick and had become immunocompromised from the strains my body. Doctors kept wondering why I was so easily sick and had difficulty healing from things. Both surgeries resulted in incision infections and developed complications. My health never bounced back after the second colon resection and the knee replacement pushed me over an edge. I became very sick. I had extreme pain all over my body (standing and walking was difficult), ongoing daily fevers over 100 and severe exhaustion all the time. I was not able to work full time anymore; I struggled to even work part time. And I was scared. Because I knew something was wrong.
In 2021, my symptoms became debilitating and I started a two year process of bouncing around from doctor to doctor, alternative therapies and self help treatments. I went to internists, orthopedic physicians, infectious disease specialist, as well as acupuncture and chiropractic doctors. I sought second opinions and finally in 2022 I was referred to a rheumatology specialist.
Halleluja! After a long and thorough medical history and review of all my different issues and surgeries, he felt certain I had an autoimmune disease and he set about testing for what type. He treated my immediate symptoms with oral steroids, Celebrex (anti inflammatory) and reassured me that he was going too help me. I cried in his office that day.
Sure enough, detailed testing showed I had rheumatoid arthritis And my blood work showed so much inflammation and other bad things that he started me immediately on methotrexate injections and hydroxychoriquin and folic acid. I had several hurdles to clear before I started these meds because they are so potent that I need clearances from two different doctors stating I was healthy enough to be on them. But I finally started my RA treatments in April 2023.
I was SO excited to start my new meds but I soon realized the treatment was a double edged sword. Yes, my daily fever disappeared! My pain improved by 70% and my fatigue was lessened! I was able to work part time and was able to stand and walk without excruciating pain and a cane. I had hope fore a recovery. RA is not curable but with right drug therapy, my doctor thought I could get up to 90% improvement. I was so happy. Of course the other shoe had to drop. I was severely nauseated by the methotrexate. Vomiting and diarrhea. I got a medical marijuana license and started with CBD tinctures for the nausea, it helps a little.
My drugs are in a class called DMARDS (disease modifying antirheumatic drugs). They are commonly used for cancer chemotherapy. Just as they stop cancer cells from replicating, they stop my immune system from attacking my own body. But the trade off is that they compromise your immune system in the process. It makes me even more immunocompromised and I get sick easily and have hard time getting over things.
I was willing to tolerate the side effects but they started getting severe. Several embarrassing drastic GI crisis' and a four day stay in the hospital for severe abdominal pain and distress caused my gastroenterologist to recommend reevaluating whether I could continue with methotrexate. I still fought to stay on it. But I had also started getting so many different types low grade infections that did not respond too treatment. Ongoing gynecologic infections, colds, ear infections, etc. They kept coming back to back. My gynecologist wanted to put me on a six month course of medication to treat resistant yeast infections but needed a clearance from my rheumatologist because that drug harms your liver and methotrexate does also. My rheumatologist refused to give clearance. He said I could not continue with methotrexate as my immunity was too low. And it is too bad as that drug is the best for RA relief. The side effects were just too hard for my body.
I was very, very disappointed. He then put me on Leflunomide and hydroxychloroquin. That combo has less harsh side effects but it is also less effective in treating RA symptoms. I have been on that combo for a month. While, I am hopeful that it will work better over several months, I am sad that it has not eradicated my RA symptoms as much. I do not have the DAILY fevers and excruciating pain to stand or walk. And I am not so fatigued all the time. But I still have moderate too severe pain in joints and need to nap many days. And I get flares with fever and terrible pain and have to stay in bed sometimes. So much so that I now see a pain doctor who is offering injections in my cervical and lumber joints and I get cortizone shots in my hands and shoulder. I have also added PRP treatments for my shoulder.
And that brings me to today. I am on my DMARD medications. I hope to incorporate biologics if and when it becomes covered my insurance. Part of my impetus for writing this blog is to share about living with RA and to possibly hear back from others with chronic illness about their lives.
Also, just to have a space to share about my struggles and experiences with this illness. And if it educates anyone, that is good too!
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