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A sourdough distraction

I am working on an article about ointments for RA. It started out as a simple piece but the more I looked, the more there was. So, I decided to pause it and write on a topic close to my heart and less complicated. So here goes.

My sourdough experiments.

My pain levels are in the red more often than they are in the blue. I woke up this morning in a level six even though I had taken Tramadol during the night. It is frustrating and discouraging as well as painful. My pain level rarely goes below a 4, but at that level I can function and carry on with my daily activities. Once it hits 5, I have a harder time. You can imagine what happens with a 6.

Distraction is a technique that will work for me for a while. I have several favorites. One distraction  is managing my sourdough project. Last spring I decided it was time to learn how to make sourdough bread. I bought a starter from King Arthur Baking Company and got to work. Once it is established a starter will continue to live as long as it is fed with more flour and water. Before feeding it, I discard an equal amount of starter to control the volume.  I found I enjoyed checking on my starter. It is satisfying to look into the crock and see it bubbling happily.

Since I spent the summer with weekly wound clinic visits, I neglected my starter and it died. In the fall I was ready to start again. This time I made my own. I used whole grain rye flour which is best for creating a starter. I followed King Arthur’s directions. After many repeats of feeding and discarding, my starter was created.  I decided to name him Bob since he is alive, and I do have to feed him. Keeping him on the kitchen counter works better than keeping him in the refrigerator. I feed him every couple of days, but I look in on him every morning.

I have been making sourdough English muffins. They are easy to make and so much better than store bought. This last time I decided to make them bigger. That was fine but I made them too thick. Next time I will make them big but thinner so they will crisp up better when toasted. Perfection.

Many times, my RA is just too painful for baking projects.  It is a time to rest. I can read about my next sourdough recipe. And I can have a toasted English muffin with my coffee.

RA and release from cancer memories

It has been three years since my last cancer. Through the surgeries, the chemo and the invasive radiation, I plodded along one foot in front of another.  And in all those moments,  I  was slowly being ground down into nothing. And at the same time I felt nothing. I kept my head down and did what was expected of me. I was exhausted. Bald. Drained. Gutted (literally). Nothing left. The daily reminder was a port in my chest waiting for the next infusion of chemicals.

Some would say I was lucky. I didn’t feel lucky. I felt that what I was no longer existed. I was so glad when that year was done. I wouldn’t have to hold on so tightly. I wouldn’t lose any more of me.

Lately I have been thinking about that time. I am no longer numb. I can feel those lost feelings now. My memories make me feel sad.  I mourn for the me that was and the time lost forever. Like waking up and realizing the dream was reality. I felt the pain of realizing I had cancer. I felt the pain and loneliness of treatment. I was no longer required to suppress my feelings. It was painful but it was also a relief.

My body  also has rheumatoid arthritis. And in spite of my cancers and the complications of one thing or another, it is  the one thing that is a constant in my life. Rheumatoid arthritis might not  kill me but it certainly makes me live with a pain wracked body. Every joint in my body is affected.

So I suppose it is the RA that dampened my response to the cancers I have had. Having cancer treatment and RA flares at the same time is rough. Suppressing the whole experience was one way of living through it. My cancers are gone for now and I can finally feel relieved.   I expect that I have another year or two before another cancer shows up. It may be a repeat, but more likely, it will be a new one. However, in another year or two I will have regained my strength and my mojo. It has taken longer this time.  I will be able to handle whatever comes. After all this time I am finally recharging

methotrexate complication

My experience with methotrexate black box warning: soft tissue necrosis.

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.

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 packings were stopped. Inserting cellulose/collagen/silver slices were started. Progress is being made.

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 ten months.

Soft tissue necrosis is black box number thirteen for methotrexate.

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.

This complication took ten months to heal. The ten-month ordeal was caused by a combination of factors. I had radiated breast tissue which normally has poor circulation. In addition, I was be medicated with injections of methotrexate. Soft tissue necrosis was the thirteenth black box warning of methotrexate.

Prednisone and Medrol are Glucocorticoids.

Glucocorticoids (GCs)

Glucocorticoids are naturally produced by the adrenal glands which sit atop each kidney. The adrenals support the body in times of stress. They calm inflammation in the body.  Unfortunately, during the inflammation caused by RA,  the adrenals do not produce enough glucocorticoids to suppress the inflammation.  Synthetic GCs provide relief because they are like the body’s natural supply of cortisol.

Glucocorticoids were first administered in 1948 by Philip Showalter Hench to treat RA. Over the years the glucocorticoids have become refined and have become lifesaving in RA as well as in many other diseases such as Lupus and asthma.

The following are common glucocorticoid preparations: prednisone (Deltasone, Medicorten, Orasone), methylprednisolone (Medrol), Betamethasone (Celestone), Solu-medrol.

  • Prednisone is used initially with a DMARD such as methotrexate at disease onset to relieve symptoms of RA until the DMARD become effective. This is known as bridge therapy.  Noted in the Annals of Internal Medicine 2012: a study has shown that adding prednisone to methotrexate early on combine to produce less joint damage, less physical disability, and reduced disease activity.
  • Dr. John R. Kirwan, of the University of Bristol Academic Rheumatology Unit suggests that prednisone along with another DMARD should be considered the gold stand of early treatment.47
  • Prednisone or methylprednisolone is also used during a flare to relieve symptoms. A Medrol dose pack may be ordered. A Medrol dose pack is a regimen of Medrol given at specific times over six days. Low dose prednisone may be given at 5-10 mg daily until symptoms subside. And then the prednisone is tapered downward.
  • Medrol is useful for maintaining disease control during pregnancy when most DMARDs are contraindicated.
  • Glucocorticoids are used for intra-articular injections where one or two joints are involved. GCs are administered in high doses IV for treating organ-threatening disease caused by RA.
  • Prednisone or Medrol may be used  on a regular basis for patients with severe disease not managed by DMARDs. Low dose therapy is under 10 mg a day for prednisone and 8 mg for Medrol. Medrol 4 mg=Prednisone 5 mg

Oral  prednisone should not be stopped abruptly. It should be stopped gradually to avoid withdrawal side effects. Frequently, calcium and vitamin D supplements are encouraged.

Long term, high dose use of these drugs can contribute to the development of osteoporosis  and spinal fractures. Side effects are serious but are not worse than the side effects of many of the DMARDs.

Excerpt from My Rheumatoid Arthritis Handbook to be released late summer 2022.

RA treatment is still lacking

Before methotrexate and the biologics became treatments of choice for RA, methotrexate in the 1990s and the first biologic in 1998, there wasn’t much that worked. Patients were given  injectable gold, lots of aspirin. Sulfasalazine was the first drug to target RA but is was soon overshadowed by a rough form of the new steroids during  1950s.  So, RA treatment has come a long way with the acceptance of methotrexate and the development of the  biologics. But has it really come that far? According to the Cleveland Clinic only 30% of those treated with biologics have a technical remission. Thirty percent have no relief  at all and the rest range in relief from 20% to 50%. And those numbers only reflect those patients who are being treated.

The study did not include those who have given up on the medical community including those who cannot afford treatment and  those who cannot afford the expensive  trial and error method of treating RA with  the biologics. It does not include those whose treatment failed. Maybe the drugs worked for a brief time and then stopped. Maybe the side effects and the complications of the drugs were intolerable.

My success with Orencia  falls in the 20-50% range. The first few days after taking Orencia I have severe  joint pain. The pain lessens for a few days and then starts rebuilding before my next dose. I am rarely painless. But I am still better than I am without the Orencia. I have been through all the RA medications. Orencia is the only one working. It is the safest biologic. Methotrexate had worked about 50% but after seven years I developed black box warning thirteen, soft tissue necrosis. I healed after nine months of treatment plus one surgery.

The problems with today’s RA treatments:

  • Trial and error

Matching a biologic medication  treatment to the specific needs of a patient is a trial-and-error process. At this time it can’t be more specific than that. The drug either works or it doesn’t. The only recourse is to keep trying them until one works. Time consuming. Discouraging. Expensive.

  • Expense

Once you pass the basic DMARDs, the costs of RA medications soar. The RA biologics are  some of the most expensive drugs on the market. The VA pays $3000 a month for my Orencia. Down at the drugstore, Orencia is about $5000. My Advantage program has a $300 a month copay for it. The drug companies have coupons that reduce costs.  There are some restrictions and the reduced costs are available for a limited time.

  • Complications

The complications of RA medications are well documented. The most common is severe infection. There are increased risks for cancer and heart disease among other things. Doctors mention these complications in passing. They don’t want to frighten their patients. I have had three cancers, diverticulitis, and histoplasmosis. So my choices are  limited.

  • Nothing works

There are some who have temporary relief from their symptoms. There are some who have partial relief. And there are those who have no relief.

  • New drugs better?

JAK inhibitors are the newest RA drugs. They are DMARDs (Disease Modifying Anti-Rheumatic Drugs.)  They are not biologics. They are pills. They cause cancer like the TNF inhibitors and severe infections, heart disease. Risky.

What does all this mean? It means that although RA treatment has come a long way from the time where a life of pain and disability was guaranteed for those with rheumatoid arthritis, it has a long way to go. Treatment needs to be able to stop the symptoms and bodily destruction of rheumatoid arthritis. Treatment needs to have few side effects and no fatal complications. And it needs to be affordable. Until then, we can stop using the words ‘wonder drug’ to describe rheumatoid arthritis drugs. And we need to keep looking.

Covid, those at risk and the unvaccinated

People who say they are tired of covid and its restrictions have never had cancer or a chronic disease. There are many  people who have one or both and that  includes me. If you have cancer, you have no choice but to follow the treatment. If you want to live, that is. If you have a chronic disease or if you are disabled, you are stuck with it. You can say you are tired of it but it will always be there.

I have lost patience with those who angrily protest mask wearing. Death doesn’t care about your politics. Wearing a mask is a simple solution that will put one more barrier between us and covid. My last cancer cost me a year of my life. In the spring I had two surgeries. I spent the summer going to the cancer hospital for a treacherous cocktail of chemotherapy where among other things I lost my hair. I went into the fall with a round of invasive radiation therapy. It took a long time to recover. I am happy to say the doctors killed my cancer. I didn’t complain. I was too busy trying to stay alive. There are many out there having the same struggle right now. They don’t need to be infected with covid from a person who is unprotected. They have enough on their plate.

I have an autoimmune disease. I am on Orencia, a biologic. My immune system is suppressed. I am at considerable risk for getting covid. I would hate to think I could get sick and die because some fool didn’t get immunized. Colin Powell died because he was exposed to someone who was unvaccinated. Many people are  dying before their time. It is sad and so unnecessary. We can thank the unvaccinated for most of it.

The virus keeps changing. We need to change with it. Now we need boosters. My son and I have ours. Only the booster will protect us from the new one, Omicron.  Consider it the third in a series to protect yourself, those in cancer treatment, those with an autoimmune disease and the children who don’t have a vaccine yet.

A flare starting to bloom

You can tell when I am feeling better. I slip into my can do and I am in charge of my chronic disease attitude. The frustrating and difficult thing about that feeling is that it only lasts so long. My flares, if that is what you want to call them, sneak up on me. I go from feeling fine and managing to feeling totally drained.

It’s true that my shoulders become painful. Sharp. And its very hard to put on a shirt in the morning. A clue.  My hands burn. The joints in my feet and my hands feel stiff.  At night they itch. The inflammation in my degenerating spine joins in. More clues.

 I come very close to wanting to feel sorry for myself. And I still have never said, why me? Yet here I am. Brain fog creeping in. The desire is no longer to keep making cookies but its to take pain medicine and watch Christmas movies.  

The worst thing about a flare aside from an increased level of pain  and difficulty of movement, is the energy drain. And the worst thing about it all is the unpredictability of it. It makes it hard to plan. It makes it hard to do.

After years of this my hands are deformed. I have been to occupational therapy and was outfitted with hand and finger braces. However, I feel I can keep a better level of function by using my hands and fingers.  I am grateful that I can use my pointer fingers. I couldn’t use my left pointer finger for a while and it was hard to type with one finger.

 I have a lot of interests. So I really hate having less energy.  I feed my sourdough starter every day. I have even named him Bob. I love peering into the crock and see him bubbling away.  He is alive and like my Cockapoo, Francis, must be fed.

Well, I did take my pain medicine and I did rest. I feel better. I can carry on. Thank goodness.

RA and a happy holiday

When your rheumatoid arthritis(RA) is uncontrolled, it is very hard to think of holidays or family events as anything more than  obstacle courses filled with discouraging frustration and fear of failure.

There are about 30% of those with RA who have no relief from RA drugs. Only about 10% of those with the best treatment come close to remission. The rest, 60%, have a range from 20% to 50% relief from their symptoms.  These are the statistics for those being treated. What happens to those who have no insurance? To those who have no access to the  wonder drugs of RA, the biologics?  Rheumatoid arthritis is a severely, incapacitating disease and we are grateful for any relief no matter how small. Sometimes we just don’t get any. That is our holiday worry.

What happens when we have a flare in the middle of the holidays? What do we do if our RA is uncontrolled? Even a little relief is not enough. It is not enough when you add the additional demands  of the holidays. When we realize the limits of RA treatments and we add the demands made on an individual, holidays or not, we start to see why depression is a common complication of RA.

So if you are feeling blue going into the holidays, you have reason. And if you understand this you are halfway to managing. Changing expectations might be  the next step. You can enjoy the holidays. You just might need to change how and what you do.

A few humble suggestions.

  • Decide what is most important to you.
  • Understand your limits, Respect them.
  • Take your pain medicine before you need it. You will need less and have less pain to manage.
  • Send gifts from Amazon
  • To save your hands, use gift bags instead of wrapping gifts. Or
  • if gift wrapping is your talent, set up your supplies and work your magic over several days.
  • Buy cookies instead of making them or if baking is your joy,
  • Make them in steps. Most of my cookie dough needs to be chilled. I make the dough one day and bake the cookies over the next day or two.
  • Tidy your house, don’t scrub. Other people rarely care about your housekeeping. Tidy is good though.
  • Stop hosting, share get togethers. Your friends will be happier too.
  • I buy special gifts for family and friends so pick them up as I find them over the year.  Start early. Too late now. But maybe next year.

Spend your limited energy on your favorite part of the holiday. I love my Christmas tree. It is perfect. My son sets it up. I decorate it over several days. Then I enjoy it for close to a month. I light  a pine candle so I have the fragrance of a live tree. Nice.

Do not expect anyone to understand your RA. It belongs to you not them. They, your others,  worry about their own something that may be tough for them as well. You are the one who needs to understand your RA and what it takes to manage it the best that you can.  This way of thinking relieves your mind of worrying about what others think. Your mind will thank you.

Managing RA in December Tip One The post office

Tip Number One

For those of us with rheumatoid arthritis a month of holidays with all its expectations and activities may seem overwhelming. A big  December 25th deadline. What happens if you are having a severe flare laced with a blanket of fatigue? What if you are using all the resources you have to manage your day to day? How are you going to manage month-long holiday activities?

 Presents to buy and wrap. Cards to write. Xmas decorations to display. Family get togethers to attend. Friends to meet up.  Most times a bustling joyous time. But with rheumatoid arthritis or any of the autoimmune diseases it may be hard to meet expectations including your own.

You want to enjoy the holidays. Maybe it is time to change how you manage your holidays. In this series of articles I am offering some of the things I have learned to do to manage my responsibilities and to enjoy December.

My first suggestion is to stop  making trips to the crowded post office and use the post office’s website store, https://www.usps.com/ship/.

Skip the trips to the post office. You no longer need to stand in line with all the other holiday shoppers. It is clearly a relief to know. The online post office is excellent.

  • You will be able to purchase a full selection of postage stamps. The post office will send them to you for the small fee of $1.35. They will arrive within the week.
  • Then order your Christmas cards on Amazon. Start early. Write a note or two a night to save your hands. Having RA doesn’t mean you need to skip this cherished ritual.

If you are planning to ship packages, you might consider using the priority bags and boxes (flat rate shipping ranges from approximately $9.95 to $22.95). I’m inclined to choose my gifts based on the size of the  priority bags and boxes. The weight doesn’t matter. It is amazing how much you can get into their large, 12x12x5, flat rate box or their padded 9×12 flat rate envelope.

  • You can order the shipping labels for the boxes you want to ship on-line. If you don’t have the boxes, the post office can ship them to you at no expense. However, they are not fast this time of year.
  • You can schedule a pickup. For the envelope  I put it in my oversized mailbox. For a box, I call for a pickup and leave it on my porch. If you don’t have a porch, you can drop it off at the post office without standing in line.

The stamps are easy as they are an inexpensive convenience. The priority mail click and ship system costs more and requires a little planning. It is well worth it to avoid the trip to the post office.