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At home with RA March 2020

We live in Albuquerque. Sunny day. Tomato plants outgrowing their nursery. Pantry is stocked as usual and our internet is dependable. Doctor appointments are via phone. Trips to the grocery store are carefully planned. There is no bread flour or other baking supplies on the grocery shelves. Eggs can be hard to get. There is no food in Amazon’s Pantry.  We are on lockdown. Yet we still count ourselves as lucky people.

We do not have the virus. No one in our family has the virus. Francis, our little cockapoo , is healthy. Our pantry shelves are stocked. Our income, at this moment, is as it should be. Our home is safe. We are lucky.

I have rheumatoid arthritis. Recently I had to stop taking my RA meds, methotrexate and hydroxychloroquine as  two of my cancer docs said to stop. I had developed necrotic, infected tissue from breast cancer radiation treatment. This infection  started in October. I had a partial mastectomy in December followed by a severe cellulitis. Now after months of treatment at the wound clinic, there is great progress. I am now injecting honey by syringe and blunt nosed needle into what is left of the wound and it is gradually healing. My nurse said healing is quicker than she thought it would be.

A few weeks ago, I developed a severe RA flare. Many of my joints are affected by RA. In a flare it feels as though my whole body is inflamed. I was quickly becoming incapacitated. I could hardly walk down to the kitchen. My RA doc is always saying treatment is a balance with quality of life.

I restarted my methotrexate but only at 12.5 mg subq. This was half my normal dose. I also restarted the hydroxychloroquine. I started a Medrol dose pack. Now a few weeks out I am stable. I have always had a running level of inflammation in my body. So, it is still there but tolerable. I am no longer on the edge of not functioning. Lucky again.

My biggest worry right now is figuring out how to keep my growing tomato plants happy in the house until the nights are warm enough to keep them outdoors. It won’t be long. I miss going to Lowe’s nursery. Since I can’t go to the nursery, I decided to start growing marigolds from seeds too.

Hope my writing finds you well.

No more methotrexate

RA Dilemma Number Five

There is another dilemma to face when you have rheumatoid arthritis. I was surprised by this one. After all, I have had RA for seven years and feel I have covered a lot of ground in that time. I know infection posed  a very high risk while taking RA meds. My mind thought flu or maybe pneumonia. This one started five months ago.

Suddenly and out of the blue, my right breast developed a lesion and stated to drain. I felt feverish and went to see my oncologist who sent me to the breast surgeon oncologist down the hall because she was the one who had the ultrasound machine. She came in, introduced herself and looked at my lesion. She instantly knew that it was caused by necrotic breast tissue due to radiation for breast cancer. The radiated tissue gradually degenerates, expands until it pushes through the delicate breast skin and drains. It cultured positive and I was sent to the wound clinic.

Eventually, it was determined that the only solution was a partial mastectomy. That done and a week later, I developed a severe infection and cellulitis. The incision had popped open and sprung a leak. I was treated with antibiotics. I was again sent to the wound clinic. The nurse debrided the wound.  I was instructed on packing the wound (deep) with iodophor. Eventually, the drainage lessened. The iodophor packing were stopped. Inserting cellulose/collagen/silver slices were started. Progress is being made and I think within a month I should graduate from the wound clinic. That will make a total of six months of aggressive treatment.

Now for the RA dilemma. Both oncologists insisted I stay off methotrexate. They felt if I would continue methotrexate, I would have a repeat of breast necrosis. The radiated tissue will always be problematic, but the methotrexate will make it worse. I agreed. No more methotrexate. I didn’t want to have to deal with another wound for another six months.

I had been on methotrexate for seven years. Initially, I suffered through the usual side effects, but over time the symptoms disappeared especially once I started taking methotrexate by injection. It helped keep me even. I still had problems, but my base line was much better. Now I am having worsening flares.

The difficult part for me is that I have many joints affected. In a flare with all of the joints  spewing inflammation factors, I start feeling sick. It feels like a flu. So, in addition to joint discomfort, my whole body feels ill.

My big worry is the inflammation and what it is doing to my body. I’ve already had three cancers. I am now reluctant to restart Actemra because of the infection risk. It is a complication when taking any of the biologics. It is a complication when taking  methotrexate as well. I am at a higher risk because I am older. As I have more complicating factors, I have to pay closer attention. I am doubtful I will start another biologic until RA drugs become more targeted and have fewer complications.

With improved health, I have restarted my exercise program. I have eliminated foods that are inflammatory. Revved up protein, vegetables and water. Not the answer, but I do believe in being proactive.



Seven year anniversary and infection

It was seven years ago this month. I was acutely ill with my first encounter of rheumatoid arthritis. My illness had not been given a name yet. A week before that I had seen the ER doc who started me on prednisone and who was  sending me to the rheumatologist that I would see in about another week. I had very little sleep. A few hours a night at most. I was in excruciating pain. Life was not good.

I can look back with a sense of relief. I no longer have the kind of pain that made me think I had broken glass shards in my joints. It took several years after my diagnosis for my RA to settle down. I never went into remission. My inflammation has always simmered. Methotrexate was my base. I finally settled into 25 mg subq once a week. It helped. After a few years my pain was never quite the same as it was originally. My feet became central to my discomfort. Custom orthotics and Dr Comfort shoes made a big difference. My feet became deformed. I developed neuropathy. I walk with a cane.

I was not given a biologic DMARD at the time because I developed two cancers the same year as my RA. A few years ago, I was started first on Rituxan and then later on Orencia. The Orencia helped for  a year, I was just getting started on Actemra when I developed the third cancer. I was just getting started on Actemra a second time when I developed an abscess in necrotic breast tissue due to radiation. The infection has continued on through surgery and now a month following surgery, There will be no more Actemra. The surgeon had me stop the methotrexate.

I have been off methotrexate for about three weeks. This is the longest since I started it. I’m not sure how things will work out. I still have the infection, the irrigations, the draining crud. My joints continue to simmer and burn. But so far, I have no feeling of glass in the joints or the extreme malaise that comes with it. Guess I will just wait and see what happens next.