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Coping with the Symptoms of RA

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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 even with custom inserts and well designed shoes. Lately, my left hip has been in excruciating pain. Bending. Standing from sitting. Weight bearing. Turning in bed. It was unbearable. During a flare it feels like it is going to last forever. It usually improves. Medrol helps me a lot. Fortunately for me I have excellent bone density.

My mother told me more than one time that,” This is the way it is.” I had often thought that this expression was cruel. I believed that it never must be a certain way. It can be different. I see that she was right. Sometimes that is the way it is. RA is a reality to be lived with daily.

Inflammation is an important word in RA. Joints become inflamed. Frequently the small joints of the hands and the feet are affected first. My feet were affected first. Then my knuckles and wrists. There was a time when I could not open jars or bottles. My elbows were affected and my shoulders were severe.

RA affects both sides of the body. Frequently, many joints are affected. It is so different than osteoarthritis. Osteoarthritis (OA) is called the wear and tear arthritis. OA is not a symmetrical or a systemic disease. It can be painful, too. But it is not systemic and it will not cause your heart to fail or your lungs to be damaged like RA does.

This is afternoon for me. I sit in my living room looking out at my rose bushes. My elderberry tree is covered in white flowers behind the roses. Next are the Sandias. Lovely to see. For me it is important to keep the good things in the forefront of my mind. There is much that I enjoy every day. Yet once in a while I slip momentarily. I become angry.  I become frustrated. And then I realize that this is the way it is and I pull out my coping skills and I carry on.

RA, Biologic Medication and the numbers

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Reading the fine print on a medication insert is not done by many of those with RA. I suspect the big reason is the amount of time it would take to understand all the information or even to understand the information of value to you. It does seem like too much work. But there is a time to buckle down and read the inserts. I am at that time.

I need to make new decisions with my Rheumatoid Arthritis(RA) treatment. I have tried three of the biologics. One didn’t work. One worked about 50% for nine months and then left me to a bad flu and a worse flare. The third just made me sick. I felt like my life was being sucked out of me. It was not a good feeling to have.

For the last six months, I have sustained myself with methotrexate injections coupled with hydroxychloroquine, meloxicam and methylprednisolone. I love methylprednisolone (Medrol). It makes me feel better. I morph from a cripple in excruciating pain into someone feeling almost well.

My RA is getting worse. Not unexpected. Most of my joints are already involved. My feet feel like there are steel wraps around them. Sometimes it is hard to walk. I have a cane to use when getting around is difficult. My shoulder involvement makes it hard to dress. All my pelvic joints complain. My knuckles ache most of the time. And so, it goes.

Now is time to take another look at the biologics. Since each of them work a little differently, if one doesn’t work for you another might. Three did not work for me. Still I look again. These are the concerns that I am bringing to the next visit with my rheumatologist.

 

 

 

 

 

  • Infection is a major complication of using most biologics. This is especially important to older people. In the medication insert Humira mentions the need of giving special consideration to the elderly. It is not uncommon for an old person to die of pneumonia. I am an old person (statistically). I do not want to up my risk of dying from pneumonia.
  • Only 19% of those who try biologics have a 70% relief at 6 months. They are fortunate.
  • 50% show a 20% improvement at 6 months. This is what they mean in the literature about their drug being helpful for RA. 20% improvement is a hard state to live in. Is this degree of helpfulness, worth the risk and the cost? Sometimes it is. Sometimes it is not.
  • And then up to 50% have no relief from the biologics at all. At this point those whom biologics will help is anyone’s guess. Most doctors try one after another until they find one that works for a while. Not efficient. Eventually, when more is known about RA there will be better predictors.
  • Cancer risks include lymphoma, and melanoma.  Cancer is also a risk for children who have the juvenile form of RA. 

 

I am in my fifth year with RA. I am active. I have learned to adapt. I still need more relief. I will listen to what my rheumatologist says. I respect her and she will listen to me. I am fortunate to have her.

I am not sure what else is out there for me. Medrol is good for me. My bones are strong. The low level of Medrol that I need to keep symptoms at bay does not put me at elevated risk for complications. This is the decision I am coming to at this point in my history. Works for me but not the choice for many others.

The biologics do work for some. They are well worth taking for those who find relief with them. At the same time, it is good to understand that they may not be a panacea. Don’t be too frustrated when they don’t work as well as expected.

My statistics come from the medicine inserts on several of the biologics. This is my article location:      ACR 20 50 70   It explains how improvement in RA is expressed in numbers.

Update 1-22-2024

Apparently, my bones are not strong, and I have osteoporosis especially in my spine. I have tried other biologics including Actemra. Now I am on Kevzara, and it does help up to 40%. I have been diagnosed with three more cancers including melanoma.

Knitting and RA

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Last summer I had a strong urge to take up knitting again. I hadn’t knitted in many years and wasn’t sure I remembered how. I bought a book for teaching children how to knit and learned quickly that knitting was like riding a bike, once learned not to be forgotten. I enjoyed the projects. Easy. Big needles. Satisfying. The basket in the picture was one of the projects. Circular needles.

A few years ago I was sent to a  hand clinic for my RA. I learned a series of exercises to strengthen my fingers, hands and wrists. It was the most helpful process I had had for my RA. I still do the exercises. I have added knitting as another way to exercise my hands. I enjoy projects simple and repetitive and I enjoy projects with complicated precise instructions. I usually knit a bit every day.

There are times when I can’t knit. My hands are too inflamed. Sometimes my shoulder is too inflamed. So I just stop for a bit and carry on when I can.

RA is debilitating. All the RA drugs are palliative only. Yet they are important in that they can slow the destructive process. Recently I had a severe episode of hip and shoulder pain. It was scary on many levels. Pain. Mobility. And it was new.  Medrol saved the day for me. I have hydrocodone. But I don’t take it for this. Medrol is the miracle drug and it is at 8 mg over my normal of 4 mg a day. Remember 4 mg Medrol is equal to 5 mg prednisone.

With a disease that is a permanent part of life learning to manage is very hard to do. Yet it is an important part of surviving the ups and downs of a painful and debilitating disease. As time passes and my experiences with RA increase in number, I see that I am managing and I am happy that I can.

I am currently making Easter baskets for my family. They are small, colorful and charming. The bottoms are detailed and artistic. Satisfying and productive.

Four years with RA

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RA Just sayinIt was four years this month that I was officially diagnosed with Rheumatoid Arthritis. Learning to accept my situation and learning to manage my disease was not easy. Pain is constant. It just varies in intensity. Fatigue is overwhelming and was constant the first few years. The RA process of medication trial and error was discouraging. Medication side effects were hard to tolerate. Underneath it all, the knowledge of living with a progressive disease was disconcerting.

Add to the mix, I was diagnosed with stage three thyroid cancer and breast cancer the same year that I was diagnosed with the RA. Both included surgery and radiation treatment. Yet here I am four years later. I am still struggling but I am surviving and maybe thriving.

I wake in pain. I go to bed in pain. Pain is discouraging and even depressing. Many of my joints are affected by RA. Fingers, toes, feet and hands, elbows, wrists, shoulders and jaw. So, I am blanketed in pain. I take meloxicam and methylprednisolone for inflammation. I take gabapentin and tramadol on a sliding scale depending on pain severity. I have hydrocodone for occasional severe pain. It all helps. Presently, I am in a situation where I take tramadol and gabapentin before I get up in the morning, early afternoon and early evening. I do have a heated mattress pad and a sleep aid that helps me through the night.

I have special shoes with a wide foot and high toe box. I also have custom inserts. It is amazing how helpful these shoes are. They make the difference between walking and not being able to walk. Not pretty but I love them.

I have learned to pace myself. Gone are the days of endless energy. At home I rotate physical activity with resting activity. Reading or working on the computer alternating with activities such as housework and light gardening. Most of the time I am able to accomplish a lot. Sometimes I just need more time to spend reading or watching favorite movies or series.

When I go out, I plan my stops and there are not many. Going out is exhausting. I have soft ankle braces that help. I have a handicap parking permit. I used to park as far from the entrance to a store as possible. Now parking close to an entrance helps me get through.

I have been on Rituxan, Orencia, and Remicade. The Rituxan didn’t work. The Orencia worked at 50% for about 10 months. The Remicade made me sick. I am reluctant to try another biologic. Presently, I am on Methotrexate injections and Plaquenil. I take methylprednisolone (Medrol) dose packs for flares but do not take a pack more than once a month. As time goes by I may need to try another biologic.

Initially, when I started methotrexate, I was nauseated and had diarrhea. The diarrhea has passed but I still am sometimes nauseated. Methotrexate helps me. My liver and kidney function tests are always good. I have eye exams yearly since I am on Plaquenil. My exams are also good.

I am managing for now. I am active in a cancer organization, Cancer Support Now. I am on their board and several committees. I manage their data base. Most duties can be done from home. I enjoy the company of this tireless group.

I write. I am writing a book about the three-year nursing program. They were the best hospital nurses and have faded into history. I am midway through writing a book on RA.

I am establishing my yard as a natural habitat. I enjoy watching the birds and quail as I sit here writing this.  Fun to see the birds taking baths. Cats wander through wishfully thinking birds. Nite time draws nocturnal critters for water and seed.

I am fortunate that I am retired.  I had to close a satisfying business because of my unstable health condition. I can now adjust my day to my physical needs. However, I appreciate the difficulties of young women raising young children while coping with the challenges of RA. I also appreciate those who need to work to keep the insurance benefits that pay for RA treatment. It makes managing RA difficult and discouraging.

Regardless of our situation those of us with RA must take ownership of our bodies and our disease. We alone are responsible for managing. It is a tough thought. Doctors, physical therapists, pharmacists, nurses, family and friends are on our team. Yet we are the ones who need to figure out what works for us. It is not easy, but to take ownership of our RA is empowering. Pacing, pain management, some RA drugs and satisfying activities help me cope. I am fortunate to have a rheumatologist I respect and trust. Feeling grateful for the good things helps me manage through the bad times.

I would love to hear your story. What works. What doesn’t. My email: marymann@comcast.net.

Four years of RA

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RA Just sayin

 

I was diagnosed with RA four years ago, this month. The first few years were whirlwinds as I was also diagnosed with two cancers that each involved surgery and radiation treatments.  My RA moved to the back seat then to the front and again back and forth. Now it is center stage.

 

In 2015, I was started on infusions of Orencia. Once I realized that the biologics only help your RA by about 50%, I settled in and appreciated that they helped that much. In July the next year, I developed a horrific flu. I haven’t had a flu for years. It was exhausting. Plus, the Orencia was not working any more. I started having bad flares. My rheumatologist stopped the Orencia.

After a few weeks, I was started on infusions of Remicade, a TNF inhibitor. By the third loading dose, I was having a severe flare plus I was having a bad reaction to the Remicade. I was ill. It took two months for the Remicade to clear my system and for me to start feeling better. Next, my rheumatologist wanted to try Actemra. My insurance company wanted me to try another TNF inhibitor. This was a joke considering how sick I became on the last one. I decided that I would not take another biologic. Helping 50% was not worth the dangers and the side effects.

Here is some interesting info on the biologics from  Cochrane.

In summarizing the Cochrane* reviews on the biologics used in the treatment of RA the following were considered very effective treatment. (However, they were not at all effective treatments for those who had no improvements.)

 

  • Among people who took abatacept(Orencia), 47 people out of 100 experienced improvement in the signs of their RA compared to 21 people out of 100 who took a placebo. There was a 26% absolute improvement.
  • Among people who took adalimumab(Humira), 63 people out of 100 experienced improvement in their RA compared to 21 people who took a placebo. There was a 42% absolute improvement.
  • Among people who took anakinra(Kineret), 27 people out of 100 experienced improvement in the signs of their RA compared to 21 people out of 100 who took a placebo. There was a 6% absolute improvement.
  • Among people who took etanercept(Enbrel), 61 people out of 100 experienced improvement in the signs of their RA compared to 21 people out of 100 who took a placebo. There was a 40% absolute improvement.
  • Among people who took infliximab(Remicade), 45 people out of 100 experienced improvement in the signs of their RA compared to 21 people out of 100 who took a placebo. There was a 24% absolute improvement.
  • Among people who took rituximab(Rituxan), 60 people out of 100 experienced improvement in the signs of their RA compared to 9 people out of 100 who took a placebo. There was a 51% absolute improvement.

 

It is common in the medical world to consider a RA drug successful if there is a 20% improvement in the signs of RA. Considering the cost of RA drugs, we should expect more. Considering the devastating effect RA has on our lives, we should expect more in a wonder drug than we are getting. Fortunately, there are physicians who agree.

Presently, I am giving myself injections of methotrexate. I have been on methotrexate for almost four years. Initially, I had some nausea and more than some diarrhea. The side effects passed. I was lucky. I would say methotrexate takes the edge off my RA.  I take Plaquenil to boost the effects of the methotrexate.  Methylprednisolone works better for me than prednisone. It certainly is a longer word. Meloxicam helps the inflammation. It is one of the safer NSAIDs.  I take Medrol dose packs for flares. I have Tramadol for pain. I am covered for the time being.

About 50% of those who have RA have no relief with the biologics. The other 50% of those with RA have about 50-60% relief. Sometimes any relief from RA is worth all the risk and all the expense. I have tried many of the biologics and I have found them wanting. These are not the wonder drugs the ads would like you to believe. Perhaps there needs to be other solutions for those of us in the 50% who do not have relief with the biologics.

I have the good fortune of being retired. I sleep eight to nine hours a night. I have a relaxing morning reading the Washington Post and sipping coffee while my joints get their bearings. I write. I enjoy knitting a bit. Keeps my hands exercised. I have many activities that I enjoy and can do more of or less than depending on my RA. I feel fortunate.

 

 

 

*Cochrane Reviews are systematic reviews of primary research in human health care and health policy, and are internationally recognized as the highest standard in evidence based health care resources. They investigate the effects of interventions for prevention, treatment and rehabilitation.

RA Journal 10-17-16

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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

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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

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                     RA Just sayin                                                                       

Remicade is the new RA drug I am starting. September 2016. 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.

Remicade

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My very old aloe plant flowered
My very old aloe plant flowered

My treatment for rheumatoid arthritis, RA, is moving in the opposite direction of normal. Because I was diagnosed with two cancers and rheumatoid arthritis in the same year, the wonder drug biologics were off limits for me. They presented a higher cancer risk.

Eventually as my RA worsened, quality of life became a factor.

  1. Methotrexate(MTX) injections help, but not enough.
  2. I had tried the triple treatment of MTX, Plaquenil and sulfasalazine without success.
  3. Leflunomide was next, but it didn’t work either.

The small molecule DMARDs were exhausted as treatments.  The biologics were next.

  1. Rituxan was considered the safest both by my rheumatologist and by my oncologist. I was infused with Rituxan. It didn’t work.
  2. Next safest was Orencia. I was infused with Orencia. It helped. It helped about 50% which was the norm for it. I received monthly infusions. But my flares became much worse at 10-11 months. Orencia was stopped.

Next is Remicade. Remicade, infliximab, was approved for RA in 1999. It is a TNF inhibitor. My rheumatologist had a serious discussion with me about cancer risk versus quality of life. I feel that the inflammation the RA causes in my body raises my cancer risk as well.  I start the Remicade infusions on Tuesday.

The infusions are two hours. With labs, prep work and observation, I will be in the infusion center for 3+ hours.  Remicade has a loading dose of three infusions. The second infusion is two weeks after the first and the third infusion is a month after the second. After the loading doses, the infusions will be eight weeks apart for me. Remicade offers flexibility in the dosage and the frequency of the infusions. It is a successful drug.

It is a chimeric. It includes a mouse protein. It makes me shudder to think a mouse part will be in my body. There is the risk of allergic reaction. It does happen. That is the reason for the precautions.

There is the risk of serious infections. 21% on Remicade develop a serious infection.  Most biologics have this risk. I had a severe flu while on the Orencia. I will report back on the side effects that happen to me.

Remicade is more successful when given with methotrexate (I am on it).

My experience with the biologics is limited. For me Orencia worked 50%. And that was what the research said it might do. 50% of the patients will have a 50% improvement. I was confused initially and expected it to do more. However, when I think just how bad I was before Orencia, 50% looks pretty good.

I am optimistic about the Remicade. I expect that it will help me. My only foreseeable glitch will be my mammogram in September. If I have more breast cancer, I will be taken off the Remicade and my body will not be happy.

Time for a visit to Ruth: Orencia is done

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Ruth at her special desk

 

 

Have you ever felt so depleted, that there is almost nothing left?  Are you surrounded by people who are caring but don’t seem to care? Are you so ready to call it quits? But can’t because the house needs to be cleaned first. Damn. Days can be tough.

I have rheumatoid arthritis. My Orencia no longer works. And after I had a very bad flu sandwiched by two very bad flares, it was cancelled.  It is advertised as being a wonder drug, but in reality, the very best it can do is help 50% of patients, 50% of the time. From a business standpoint a drug that costs $3500 a month should do more than 50% for 50%.

That is what it did for me. 50% and I was a lucky one. Before that, I suffered with severe symptoms most of the time. 50% is a big help when that is the case. So now I am back to the beginning with 0 %. Square one, I am back.

So today I am bleary-eyed and discouraged. I wish for a hug and some kind words. They seem to be too much to ask. I realize that it is time for a visit to Ruth.  It is time to sit in the big chairs in her bookstore, sip great coffee and eat lemon frosted cookies.

She welcomes me. She smiles and give me the hug I need. We sit. The coffee is even better than I remembered. The cookies are always the best. My spirits rise just sitting with her. I know I have not had an artist’s vacation in a while. I know I am due. Simply what I need is to put my focus and heart into my art.  Thank you, Ruth.