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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.

RA Journal 10-17-16

I took the last pill in the medrol pack this morning. I am back to sleeping again. I feel better.  My feet as well as my hands remain a problem. Swelling. Stiff. Pain. But manageable.
After being a recluse for a week, I made it out to Kohl’s to use my 30% coupon yesterday.  Fall clothes and a few Xmas presents. Panera’s for squash soup and salad. Michaels for a Lion’s Brand wool that is not easy to find. It is cranberry, bulky and beautiful. Home to rest.
Today is another sunny day in ABQ. Still a warming fire is pleasant. Life is good.
The medrol pack has saved me again. I was very ill and was getting discouraged. I don’t know how long this improvement will last but I will enjoy it while I have it. It feels like a stay of execution.
I came to the conclusion a while back that my RA is progressive and that there is no cure. There is only symptom relief. For some, the biologics hold the promise of damage control. That promise at best is for 50% of RA patients at a helpful rate of 50%. With luck, Remicade should offer me that much. The question is if the benefit outweighs the side effects.
Remicade is a TNFi. It stops the production of TNF which is a component of the body’s inflammatory process, the body’s defense system. Remicade helps stop the inflammation caused by our immune system. The downside is that since the immune system is impaired, the risk of infection increases.
When I was on Orencia, I had two bad flu’s. I was laid up a week with each. They were about 6 months apart. Prior to Orencia I rarely had a flu. I started Remicade in August. So far no infections.
However, after the third loading dose, 10 days ago, I had a severe flare and was overwhelmingly wiped out. It was the medrol pack that saved me. My next infusion is scheduled for December. My rummy will probably change my infusion times from 8 weeks to 6 weeks since I am still having such problems.
However, will I have the same reaction that I did this time? If I do, I may not want to stay on Remicade.
In RA, as in many disorders, there is the trade off of risk of side effects versus benefit. At this point for me it is wait and see. In the meantime, I can enjoy my life in New Mexico.