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the joy of roses

RA flares without the biologics

I am living through my days without methotrexate. I am not on any of the biologics. Hydroxychloroquine is no help and has been set aside. At first, I felt left alone in the world without armor.  Would a flare become so severe that I would spiral down and down into total pain and immobility as I had in 2013? That was my fear.

For years, a low level of pain humming in the background has kept me company. I have a degenerating spine. There are long fancy words for what has attacked my spine. Plainly said, I have a bad back. I could say I inherited it  from my dad. I am accustomed to pain. Now I have RA.

Over the years I have learned to ignore the humming pain. However, there is a tipping point after the start of a flare where something needs to be done.

As a flare starts  pain grows louder in the small joints in my feet. The rest of my feet ache. My left ankle develops sharp pain making walking difficult. My knuckles ache and my elbows become inflamed.  All these joints scream their desire for relief. Together they are loud. When this starts to happen, I not only feel bad, but I feel discouraged. Without intervention, the flare will get worse. This has been my story for seven years.

In 2018 when I was in chemo and off methotrexate, I would use a Medrol dose pack for flares. It helped get me through. I have good bone density. I have had no infections.  So, in reluctant agreement from my RA doc, I take low dose Medrol daily and then a boost of a Medrol dose pack for flares. It works for me.

Medrol is also known to reduce RA damage over time. I feel covered. I am one of those unlucky individuals who are in the minority of people who have serious complications from drugs. Tamoxifen caused a rare uterine cancer that required drastic treatment. Orencia caused a severe flulike infection that I never had before or since. Methotrexate caused a necrosis  to radiated breast tissue which required ten months of treatment.

I am reluctant to try any more biologics as I believe I will probably have one of their many serious complications. Most people will not have these problems.

This is my current regime. It works for me and my life goes on. I have just finished reading Lifespan by David Sinclair. He is a world renown genetic scientist. He paints a hopeful picture of possibilities for us humans. We can live much longer, and we can live healthier. Sounds good.

Last night I made a fragrant vegetable soup with chicken added for dinner. Now I am munching on an organic apple as I write. Good habits. Tasty habits.

At this point in time, I am good. I have had enough crises in my life to appreciate the good. Problems can be solved, or they can be managed. Those of us who have RA or who have been  treated for cancer understand.  We had gone through tremendous hardship and we come out knowing that life still can be good.

 

 

 

 

 

 

 

Lockdown Update

We are still locked down. We go to Costco and to Smiths. We travel out with our masks and our hand sanitizers. Those we meet are friendly and have smiling eyes behind their masks. If a person depended on reading lips to understand another, they are currently out of luck. Who would have guessed? Certainly not last September. Life changes so quickly.

My garden is winding down. The squirrels are fat and happy after eating my tomatoes. The roadrunner couple I saw having sex in my back yard now have healthy teenagers who are as aggressive about eating birds as their parents. Our quail population is booming. They love quail blocks and nest along side the squirrels on a little used side of my property.

I make bread every couple of days. I have many recipes for rye bread, but rye flour is now unattainable. Not enough planted by the farmers for the current demand. I also make a lot of oatmeal bread. Lucky for me. I make my own buns for bratwurst. I also have a recipe for frosted cinnamon rolls. They are very good.

I like to cook, and my son likes to eat. We make a fine pair.

My RA is a struggle.  Since I no longer can have methotrexate, I am currently left with Medrol and diclofenac gel. Medrol has been shown to reduce joint damage. As more research is done, the scientists are finding that steroids in moderate amounts are therapeutic.  I have been on prednisone or medrol for seven years. My bone density is good. Other than the necrotic breast tissue and infection I had from taking methotrexate, I have been infection free. It took 10 months for the necrotic tissue to heal. It is a relief not to have a leaking breast.

I have learned to pace myself. It is wise to keep moving as prolonged sitting is a dangerous thing. See I am writing this update and next I will go into the kitchen and start dinner.

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.