We had started with DMARDs, adding new ones and upping the dose. A stressful job probably didn't help, and before I knew it RA was everywhere in my joints- large and small and in places you don't think of as "joints", like where the clavicle joins the sternum, rib ends, even parotid glands and so on. The big joints really affected my mobility, especially the hips, and a wheelchair was necessary.
Finding an effect RA treatment
After no luck with anti-inflammatories, DMARDS (Plaquenil, Azulfidine, methotrexate), and steroids (seven years) I ended up having to go on short-term disability, then regretfully on full disability in 1998.
In about two years I finally tried Enbrel. Finally, something worked! Good thing, because my bone marrow and liver were suffering from chronic high dose MTX therapy.
Enbrel provided ten years of relief from so many symptoms. We moved back to my rural hometown. I became weaker and progressively more short of breath. RA lung disease, Asthma?
After countless CXRs and Pulmonary function tests that didn't add up, I saw a pulmonologist. He walked me down the hall and I glanced at a CXR on a wall monitor and casually remarked "hmm, there is a chest full of tumor there!". I didn't realize it was MY chest x-ray and the masses had been missed for months and months. I felt a big sense of doom and fear.
RA & cancer
I had advanced Follicular Non-Hodgkins Lymphoma filling the mediastinum (space between the lungs), indenting my airways, making it so hard to breathe. High dose steroids melted away the worst of the obstructions and multiple rounds of aggressive "R-CHOP" chemotherapy finished it off.
I was continued on cancer treatment doses of Rituxan infusions for two years of maintenance chemo. I am still cancer-free 13 years later.
Rheumatoid arthritis management questions
What biologics would be safe to use for future RA control? I stayed on the RA dosage of Rituxan until it didn't seem to work.
My hometown rheumatologist didn't seem to feel comfortable with further recommendations, so I researched it myself on NIH/PubMed and found a Dr whose name appeared on several research papers and wrote him. He was kind enough to give me a shortlist of recommendations.
I am relatively satisfied with my RA control now, dealing with the long term joint problems and surgeries, but I will always wonder:
- Did Enbrel cause the NHL? NO ONE wanted to talk about that!
- What is: the incidence of Lymphoma in RA patients post-biologic treatment; the time frame to cancer; the specific biologic?
- Is any research being done on guiding the selection of post-cancer biologic drug selection?
- Cancer treatment rendered the RA inactive for a time, something I sure didn't expect! But it eventually came back.
- I discovered a very competent artist within my new, post-physician life. I promised myself to NOT make it a JOB, to enjoy life and this newfound ability. I continue to be amazed.
Where RA has left me now
The toughest job now is staying adaptable to the new challenges this tough disease called RA throws at me.
I adjust to physical losses. It's not easy. I struggle with brain fog, sleep loss, pain, and dry eyes. Staying positive and laughing at life has been my biggest attribute to dealing with RA and still being a person my friends like to be around. ....Susan
Do you feel guilty when you need to rest?