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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.

RA Journal 10-13-16

It is 5 am. Coffee perking. Cozy flames from the fireplace. Antoine, my 10 year old Maine Coon cat, fed. No sleep at all, not even a little dosing.  So I  finally decided to get up and start my day. I have RA. It is a bummer. Presently, I am on prednisone for a flare. I like the medrol packs which plus my regular prednisone help me feel better. But it is day four and the sleeplessness side effect has kicked in. It might last another day. I will eventually sleep.

Most with the diagnosis of RA have a progressive form of the disease. I can say I have been in a constant flare for almost 4 years. That means my body has been continually inflamed for almost 4 years. Definitely not good for my body.  Sometimes are worse than other times. None of it is good.

Mine started in my feet.  My toes, my feet, my ankles are reaching the point where I am worried about mobility. My knuckles can be bad as several of my fingers can. My right shoulder is worse than my left but the left is catching up. Both elbows are involved as are my hips. Not my knees so far. I also have it in my jaw, my neck and several other little joints.

I have learned to manage my disease as most of us do in order to survive. I see a palliative care nurse and she has helped my learn to manage my pain with medication. I do have to laugh at those who say you can manage pain with meditation. RA pain is severe and pervasive and give me the medication first and then I will gladly meditate.

I have taken up knitting. I knitted years ago and wasn’t sure I would remember how to do it. I bought a book on knitting for children. It is great. I knit during my rest periods. It is meditative by the way. My knuckles look straight out of Rocky but they don’t hurt as much as the rest of me which surprises my Rummy. There are times I cannot knit but I am good most of the time.  I have knitted everyone a hat for xmas. I am working on little purse like pouches with a button and flap, journal covers, kittens and owls and little baskets. I am working on a wool hat for my great nephew in Syracuse, NY, Scrunchies. Another journal cover for my sister in law in Watertown, NY.  I love the different yarns, textures and colors. I am amazed and impressed with all the knitting experts online. My skill set is building.

Many who read this are not able to knit. All those little joints in their hands are swollen, painful or damaged. Before treatment my left hand was swollen to double its size. Hands can be a causality in RA.  I had the good fortune to go to physical therapy for my hands. It was like being in heaven. They had the hot wax treatment and would cover my hands and then wrap them in towels. It felt delicious. After the treatment I was taught hand exercises. They are on my blog. The exercises are easy and can be done while driving. We need to keep everything moving as long as we can.

Energy is a big problem for me. I once was a high energy, busy woman. I have turned into a slow mover who has to plan her trips to the mailbox. For my first year with RA, I felt immobilized. I had to do things like everyone else but it was a great effort. Then I read an article on WebMD about pacing. Slowly, I began to incorporate it into my day. It is a process that you can adapt to your needs.

When day after day my joints are stiff and I am in pain, I can still get some things done. I rotate physical activity with reading, writing or knitting. Some days I knit and read a lot and some days I work in my garden more. Shopping totally saps my energy. I have also been getting random severe pain in my feet or ankles when I’m out. I have learned to use the cancer patient’s(yes, I’ve has two cancers) use of the shopping cart as  a support.

I realize that I have a lot of company. They say life is what we make it. It is and it isn’t. Life gives us challenges. Some are tough ones. Most of us muddle through doing the best we can.

Remicade started


                     RA Just sayin                                                                       

Remicade is the new RA drug I am starting. There is a loading dose, another dose two weeks later, another a month later. The regular schedule for me will be 8 weeks apart.  I have had the first two doses. It is given by infusion over two hours. The whole thing lasts about three hours. I haven’t had any reactions. Nausea is a common side effect. I have it with methotrexate so I am armed with a strong anti-nausea medicine and I am good.

Last month was tough for me. Flare plus flu.I have been in a perpetual RA flare for three years. The only difference is that sometimes it is much worse than other times. It has been on the worse end of the scale for several months. I can use a Medrol pack for it. Helps. One a month for three months. It would be more but I think that would be too much.

I think the Remicade is starting to help a little. No, it’s not wishful thinking. It can start to work in as little as two weeks.

If I didn’t have the drugs that I have been on, I would be a cripple and I would be unable to do
all the things that I do. I wished the drugs helped more than 50% worth but given the situation 50% help is better than none. I am grateful.