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Four years with RA

RA Just sayinIt was four years this month that I was officially diagnosed with Rheumatoid Arthritis. Learning to accept my situation and learning to manage my disease was not easy. Pain is constant. It just varies in intensity. Fatigue is overwhelming and was constant the first few years. The RA process of medication trial and error was discouraging. Medication side effects were hard to tolerate. Underneath it all, the knowledge of living with a progressive disease was disconcerting.

Add to the mix, I was diagnosed with stage three thyroid cancer and breast cancer the same year that I was diagnosed with the RA. Both included surgery and radiation treatment. Yet here I am four years later. I am still struggling but I am surviving and maybe thriving.

I wake in pain. I go to bed in pain. Pain is discouraging and even depressing. Many of my joints are affected by RA. Fingers, toes, feet and hands, elbows, wrists, shoulders and jaw. So, I am blanketed in pain. I take meloxicam and methylprednisolone for inflammation. I take gabapentin and tramadol on a sliding scale depending on pain severity. I have hydrocodone for occasional severe pain. It all helps. Presently, I am in a situation where I take tramadol and gabapentin before I get up in the morning, early afternoon and early evening. I do have a heated mattress pad and a sleep aid that helps me through the night.

I have special shoes with a wide foot and high toe box. I also have custom inserts. It is amazing how helpful these shoes are. They make the difference between walking and not being able to walk. Not pretty but I love them.

I have learned to pace myself. Gone are the days of endless energy. At home I rotate physical activity with resting activity. Reading or working on the computer alternating with activities such as housework and light gardening. Most of the time I am able to accomplish a lot. Sometimes I just need more time to spend reading or watching favorite movies or series.

When I go out, I plan my stops and there are not many. Going out is exhausting. I have soft ankle braces that help. I have a handicap parking permit. I used to park as far from the entrance to a store as possible. Now parking close to an entrance helps me get through.

I have been on Rituxan, Orencia, and Remicade. The Rituxan didn’t work. The Orencia worked at 50% for about 10 months. The Remicade made me sick. I am reluctant to try another biologic. Presently, I am on Methotrexate injections and Plaquenil. I take methylprednisolone (Medrol) dose packs for flares but do not take a pack more than once a month. As time goes by I may need to try another biologic.

Initially, when I started methotrexate, I was nauseated and had diarrhea. The diarrhea has passed but I still am sometimes nauseated. Methotrexate helps me. My liver and kidney function tests are always good. I have eye exams yearly since I am on Plaquenil. My exams are also good.

I am managing for now. I am active in a cancer organization, Cancer Support Now. I am on their board and several committees. I manage their data base. Most duties can be done from home. I enjoy the company of this tireless group.

I write. I am writing a book about the three-year nursing program. They were the best hospital nurses and have faded into history. I am midway through writing a book on RA.

I am establishing my yard as a natural habitat. I enjoy watching the birds and quail as I sit here writing this.  Fun to see the birds taking baths. Cats wander through wishfully thinking birds. Nite time draws nocturnal critters for water and seed.

I am fortunate that I am retired.  I had to close a satisfying business because of my unstable health condition. I can now adjust my day to my physical needs. However, I appreciate the difficulties of young women raising young children while coping with the challenges of RA. I also appreciate those who need to work to keep the insurance benefits that pay for RA treatment. It makes managing RA difficult and discouraging.

Regardless of our situation those of us with RA must take ownership of our bodies and our disease. We alone are responsible for managing. It is a tough thought. Doctors, physical therapists, pharmacists, nurses, family and friends are on our team. Yet we are the ones who need to figure out what works for us. It is not easy, but to take ownership of our RA is empowering. Pacing, pain management, some RA drugs and satisfying activities help me cope. I am fortunate to have a rheumatologist I respect and trust. Feeling grateful for the good things helps me manage through the bad times.

I would love to hear your story. What works. What doesn’t. My email: marymann@comcast.net.

Four years of RA

RA Just sayin

 

I was diagnosed with RA four years ago, this month. The first few years were whirlwinds as I was also diagnosed with two cancers that each involved surgery and radiation treatments.  My RA moved to the back seat then to the front and again back and forth. Now it is center stage.

 

In 2015, I was started on infusions of Orencia. Once I realized that the biologics only help your RA by about 50%, I settled in and appreciated that they helped that much. In July the next year, I developed a horrific flu. I haven’t had a flu for years. It was exhausting. Plus, the Orencia was not working any more. I started having bad flares. My rheumatologist stopped the Orencia.

After a few weeks, I was started on infusions of Remicade, a TNF inhibitor. By the third loading dose, I was having a severe flare plus I was having a bad reaction to the Remicade. I was ill. It took two months for the Remicade to clear my system and for me to start feeling better. Next, my rheumatologist wanted to try Actemra. My insurance company wanted me to try another TNF inhibitor. This was a joke considering how sick I became on the last one. I decided that I would not take another biologic. Helping 50% was not worth the dangers and the side effects.

Here is some interesting info on the biologics from  Cochrane.

In summarizing the Cochrane* reviews on the biologics used in the treatment of RA the following were considered very effective treatment. (However, they were not at all effective treatments for those who had no improvements.)

 

  • Among people who took abatacept(Orencia), 47 people out of 100 experienced improvement in the signs of their RA compared to 21 people out of 100 who took a placebo. There was a 26% absolute improvement.
  • Among people who took adalimumab(Humira), 63 people out of 100 experienced improvement in their RA compared to 21 people who took a placebo. There was a 42% absolute improvement.
  • Among people who took anakinra(Kineret), 27 people out of 100 experienced improvement in the signs of their RA compared to 21 people out of 100 who took a placebo. There was a 6% absolute improvement.
  • Among people who took etanercept(Enbrel), 61 people out of 100 experienced improvement in the signs of their RA compared to 21 people out of 100 who took a placebo. There was a 40% absolute improvement.
  • Among people who took infliximab(Remicade), 45 people out of 100 experienced improvement in the signs of their RA compared to 21 people out of 100 who took a placebo. There was a 24% absolute improvement.
  • Among people who took rituximab(Rituxan), 60 people out of 100 experienced improvement in the signs of their RA compared to 9 people out of 100 who took a placebo. There was a 51% absolute improvement.

 

It is common in the medical world to consider a RA drug successful if there is a 20% improvement in the signs of RA. Considering the cost of RA drugs, we should expect more. Considering the devastating effect RA has on our lives, we should expect more in a wonder drug than we are getting. Fortunately, there are physicians who agree.

Presently, I am giving myself injections of methotrexate. I have been on methotrexate for almost four years. Initially, I had some nausea and more than some diarrhea. The side effects passed. I was lucky. I would say methotrexate takes the edge off my RA.  I take Plaquenil to boost the effects of the methotrexate.  Methylprednisolone works better for me than prednisone. It certainly is a longer word. Meloxicam helps the inflammation. It is one of the safer NSAIDs.  I take Medrol dose packs for flares. I have Tramadol for pain. I am covered for the time being.

About 50% of those who have RA have no relief with the biologics. The other 50% of those with RA have about 50-60% relief. Sometimes any relief from RA is worth all the risk and all the expense. I have tried many of the biologics and I have found them wanting. These are not the wonder drugs the ads would like you to believe. Perhaps there needs to be other solutions for those of us in the 50% who do not have relief with the biologics.

I have the good fortune of being retired. I sleep eight to nine hours a night. I have a relaxing morning reading the Washington Post and sipping coffee while my joints get their bearings. I write. I enjoy knitting a bit. Keeps my hands exercised. I have many activities that I enjoy and can do more of or less than depending on my RA. I feel fortunate.

 

 

 

*Cochrane Reviews are systematic reviews of primary research in human health care and health policy, and are internationally recognized as the highest standard in evidence based health care resources. They investigate the effects of interventions for prevention, treatment and rehabilitation.