All posts tagged: RA progression

More about RA drug Actemra

Response to expect  with Actemra                                                                                     At 24 weeks of weekly injections, 69% of those with RA had a 20% improvement in  symptoms. Additionally, 47% had a 50% improvement and 24% had a 70% improvement. That leaves 31% with no improvement. None of the biologics work for everyone.

How my hair came to fall out, more experiences with cancer treatment

I remember when I learned about my latest cancer (#3).I knew that once again my life would be consumed by all things cancer. After major comprehensive surgery (they took almost everything out), it was time to settle into chemotherapy. My oncologist, Sara Jordan, had explained the reasoning behind the treatment she proposed. Chemotherapy would be part two after surgery and before vaginal radiation. I figured she might be able to cure me which sounded appealing and worth the effort I would be expending. This picture shows my hair, but it was taken after surgery and before chemo. The chemo was to be a commonly used combination of Taxol and Carboplatin. Six sessions in 21-day cycles. Hair loss is definite and is estimated to be 2-3 weeks after initial infusion. This allows a little planning time. My hair stylist, Audrey, cut my hair into a short pixie. Much better than a butch or a clean shave. The second part of the plan was to shave it when it started falling out. About day 19 after the …

Living with RA

On becoming the bionic woman

I wonder how many of us are walking around with replacement parts. Joint replacement has become common and it is successful surgery. I have several friends who have both knees replaced or both hips replaced and they are fine with it. And now, I am about ready to embark on my first joint replacement. My left hip will be first on the chopping block. This is a bad visualization. I am trying hard not to think about what the surgeon will be doing. It is scary and gruesome. A Frankenstein thing. Instead, I am focusing on the bionic woman thought. I will be in much better condition once I complete the rehab process. I will have a fabulous new joint. Won’t I be lucky? I will. I have spent the summer in extreme pain. My doc had a tough time identifying my hip issue. After all, my hip had good range of motion without pain. An MRI revealed my hip deteriorating badly plus a bad labral tear with pieces loose in the joint. My pain …

RA feet and orthotics

My RA started in my feet. About 20% of patients are introduced to RA via painful feet and about 95% of RA patients eventually do have feet involvement.  RA struck my poor feet first.  Diagnosis was slow as my primary doc, an internist, later said I was too old to have RA and that the pulses in my feet were strong so my feet were fine. Once I was diagnosed. Methotrexate (MTX) was my first RA drug. The dose was gradually increased until I reached the max of 25 mg/week.  I tolerated the nausea and diarrhea which eventually passed.  MTX helped me but by this time my feet were in a lot of pain and I walked with great difficulty. I was sent to a podiatrist who declared right off the bat that he didn’t do foot surgery for RA. Fine, I thought. I had read about the horrors of RA foot surgery and I wanted none of it. I did need to know what would help. He did three things for me. He ordered …

RA treatment in the 1920s

In the early days of the twentieth century very little was known about rheumatoid arthritis.  It might have been called chronic infectious arthritis, proliferative arthritis or atrophic arthritis. Rheumatology was not a specialty. There were no rheumatologists. It was not a good time to have RA. Arthritis treatment at the Mayo Clinic  included bed rest. Patients were admitted to the hospital and put on bed rest for several weeks. They were given a balanced diet. Physical therapy was an important therapy. It improved range of motion, strengthened muscles and prevented deformities. Heat and massage were used  to improve circulation and to remove toxins. Bracing and casting were used to support joints and reduce contractions. Canes were prescribed. Shoe corrections were prescribed. Vaccine therapy, fever therapy and sympathectomy were popular treatments at the Mayo Clinic based on the theories of the time. As medical knowledge grew these therapies fell out of favor. Salicylates were drugs of choice. Remember this was before sulfa, penicillin and cortisone. It a was long time before ibuprofen would be formulated. Any …

Coping with the Symptoms of RA

Beginning with the first symptoms of my rheumatoid arthritis (RA), I have lived in daily pain. It has been over four years. It has been a long time. Rheumatoid arthritis is an autoimmune disease. My body is on a suicide mission to destroy the linings of  the movable joints in my body. It is a scary disease in that it is unpredictable and it is progressive. I spent the first two years with severe fatigue/malaise. And it was as bad as the pain. This malaise is caused by cytokines, products of inflammation. Cytokines circulate in my bloodstream spreading RA damage. Add that to a high level of pain and it can be overwhelming. I wake to stiff, painful joints. In the morning as I walk painfully down to the kitchen to make coffee, there are times when I have become angry and tired of it all. I start the day in pain and I end the day in pain. It is too much. My feet are becoming deformed and I find it difficult to walk …

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 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 …