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My very old aloe plant flowered

My very old aloe plant flowered

My treatment for rheumatoid arthritis, RA, is moving in the opposite direction of normal. Because I was diagnosed with two cancers and rheumatoid arthritis in the same year, the wonder drug biologics were off limits for me. They presented a higher cancer risk.

Eventually as my RA worsened, quality of life became a factor.

  1. Methotrexate(MTX) injections help, but not enough.
  2. I had tried the triple treatment of MTX, Plaquenil and sulfasalazine without success.
  3. Leflunomide was next, but it didn’t work either.

The small molecule DMARDs were exhausted as treatments.  The biologics were next.

  1. Rituxan was considered the safest both by my rheumatologist and by my oncologist. I was infused with Rituxan. It didn’t work.
  2. Next safest was Orencia. I was infused with Orencia. It helped. It helped about 50% which was the norm for it. I received monthly infusions. But my flares became much worse at 10-11 months. Orencia was stopped.

Next is Remicade. Remicade, infliximab, was approved for RA in 1999. It is a TNF inhibitor. My rheumatologist had a serious discussion with me about cancer risk versus quality of life. I feel that the inflammation the RA causes in my body raises my cancer risk as well.  I start the Remicade infusions on Tuesday.

The infusions are two hours. With labs, prep work and observation, I will be in the infusion center for 3+ hours.  Remicade has a loading dose of three infusions. The second infusion is two weeks after the first and the third infusion is a month after the second. After the loading doses, the infusions will be eight weeks apart for me. Remicade offers flexibility in the dosage and the frequency of the infusions. It is a successful drug.

It is a chimeric. It includes a mouse protein. It makes me shudder to think a mouse part will be in my body. There is the risk of allergic reaction. It does happen. That is the reason for the precautions.

There is the risk of serious infections. 21% on Remicade develop a serious infection.  Most biologics have this risk. I had a severe flu while on the Orencia. I will report back on the side effects that happen to me.

Remicade is more successful when given with methotrexate (I am on it).

My experience with the biologics is limited. For me Orencia worked 50%. And that was what the research said it might do. 50% of the patients will have a 50% improvement. I was confused initially and expected it to do more. However, when I think just how bad I was before Orencia, 50% looks pretty good.

I am optimistic about the Remicade. I expect that it will help me. My only foreseeable glitch will be my mammogram in September. If I have more breast cancer, I will be taken off the Remicade and my body will not be happy.

RA, stuffed green peppers and pacing

nature's beauty

nature’s beauty

My podiatrist thinks people with RA have an amazing positive attitude. He says it is unique to his patients with RA. I can understand that. We have no choice but to manage our disease. So we do. We plod along solving our issues for pain and all the issues large scale damage to our bodies’ joints give us.   If we fail to pick up the responsibility, even more severe pain and disability are but steps away. We figure out how to manage grueling pain, random flares that send us to Medrol packs and heavy pain medications. Limping around on feet that feel like numb bricks. Energy that seeps away until we are but rag dolls wishing for rest. Learning to manage a painful existence isn’t easy. Those of us with RA just do it.

We are experts on hot packs, splints, braces, pacing, and on it goes.  Pacing works well for me. I manage a lot following the concept.  Generally, it is working for short stints interspersed with resting activities.

My pain medication is on a schedule. Works better that way. I wake up in pain and I go to bed in pain and have pain pretty much all day.  The intensity varies. I think every joint in my body has been affected by RA. I have medicine for RA associated nerve damage. I have medicine for pervasive pain. I have medication for the inflammation that is the big enemy.

Today I am making stuffed peppers. Green peppers are at a once a year sale 3 for $1. Excellent ground beef is also on sale. So my once a year effort to make stuffed peppers is timely. It helps that I have someone with a healthy, appreciative appetite to cook for. The crock pot is full of stuffed peppers simmering. Next I will have a coffee and cookie break while reading my Baldacci novel. Then I will clean up my kitchen and wander outside to my garden.

Time for a visit to Ruth: Orencia is done

Ruth at her special desk



Have you ever felt so depleted, that there is almost nothing left?  Are you surrounded by people who are caring but don’t seem to care? Are you so ready to call it quits? But can’t because the house needs to be cleaned first. Damn. Days can be tough.

I have rheumatoid arthritis. My Orencia no longer works. And after I had a very bad flu sandwiched by two very bad flares, it was cancelled.  It is advertised as being a wonder drug, but in reality the very best it can do is help 50% of patients, 50% of the time. From a business standpoint a drug that costs $3500 a month should do more than 50% for 50%.

That is what it did for me. 50% and I was a lucky one. Before that, I suffered with severe symptoms most of the time. 50% is a big help when that is the case. So now I am back to the beginning with 0 %. Square one, I am back.

So today I am bleary-eyed and discouraged. I wish for a hug and some kind words. They seem to be too much to ask. I realize that it  is time for a visit to Ruth.  It is time to sit in the big chairs in her book store, sip great coffee and eat lemon frosted cookies.

She welcomes me. She smiles and give  me the hug I need. We sit. The coffee is even better than I remembered. The cookies are always the best. My spirits rise just sitting with her. I know I have not had an artist’s vacation in a while. I know I am due. Simply what I need is to put my focus and heart into my art.  Thank you, Ruth.