Year: 2016

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 …

Remicade started

                                                                                               Remicade is the new RA drug I am starting. 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 …

Remicade

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. Methotrexate(MTX) injections help, but not enough. I had tried the triple treatment of MTX, Plaquenil and sulfasalazine without success. Leflunomide was next, but it didn’t work either. The small molecule DMARDs were exhausted as treatments.  The biologics were next. Rituxan was considered the safest both by my rheumatologist and by my oncologist. I was infused with Rituxan. It didn’t work. 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 …

RA, stuffed green peppers and pacing

My podiatrist thinks people with RA have an amazing positive attitude. He says it is unique to his patients with RA. I can understand that. We have no choice but to manage our disease. So we do. We plod along solving our issues for pain and all the issues large scale damage to our bodies’ joints give us.   If we fail to pick up the responsibility, even more severe pain and disability are but steps away. We figure out how to manage grueling pain, random flares that send us to Medrol packs and heavy pain medications. Limping around on feet that feel like numb bricks. Energy that seeps away until we are but rag dolls wishing for rest. Learning to manage a painful existence isn’t easy. Those of us with RA just do it. We are experts on hot packs, splints, braces, pacing, and on it goes.  Pacing works well for me. I manage a lot following the concept.  Generally, it is working for short stints interspersed with resting activities. My pain medication is on …

Time for a visit to Ruth: Orencia is done

    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 …

Methylprednisolone and RA

Methylprednisolone (WOW, an impressive word!) is served up in a package of 21 four milligram (mg) pills (Medrol Dose Pak) with specific instructions as to when to take each pill. One time a nurse told me to start the pack the next day as the instructions start before breakfast and that would be the only way I could follow the instructions. I would have to wait through the night before I could start resolving my problem. This time around I saw written on the package that all six tablets in the first row for the first day should be taken on the day you receive your prescription even though you may not receive it until late in the day. All 6 pills may be taken at once on the first day or divided into doses for the remainder of the day. I have had this prescription twice for inflamed salivary glands after thyroid cancer treatment and twice for RA flares. I call it a miracle drug as it is so effective. My joints still hurt …

RA and Malnutrition

A COMMON BUT LITTLE KNOWN complication of RA is malnutrition.  In fact, it is estimated that more than 40% of Rheumatoid Arthritis patients are malnourished. My first thought would be that RA can cause such overwhelming fatigue and pain that it would be difficult to muster the energy to prepare and then eat a meal. Just to make a sandwich requires unwrapping the bread, putting the slices on a plate, wrapping the bread bag back up, opening containers and adding spreads, meat or veggies, closing containers, putting them away. Sitting down at the table with your sandwich and eating it. Sounds easy enough. But if you are so wiped out by the extreme fatigue of RA or your hands are swollen and ache deeply in a way that is hard to explain, making a sandwich can be an overwhelming task. It is a task that can be skipped. And it frequently is. Additionally, it is difficult to rally the energy to go to the grocery store, get out of the car, walk in,  select items, …

RA nodules

Rheumatoid nodules are commonly talked about when rheumatoid arthritis (RA) is discussed. It might surprise you to know that only 7% of those newly diagnosed with RA have rheumatoid nodules. So they are not characteristic symptoms of newly diagnosed RA. Overtime, about 25% of those with positive Rheumatoid Factor (RF) develop nodules. Nodules are frequently present in the more severe cases of RA, those more likely to have rapid progression of joint destruction and to develop vasculitis.  75% of those with Felty’s syndrome, more common in white males, have rheumatoid nodules. Current smokers with RA plus nodules usually have more severe disease. In those with seronegative rheumatoid arthritis, about 6% develop rheumatoid nodules. The condition of having rheumatoid nodules is called rheumatoid nodulosis. The nodules form below the skin near joints. They are firm and frequently moveable. They are not tender and are not usually harmful. They are 2 mm (.008 inch) to 5 cm (2 inch) and may occur singly or in clusters. They are formed in three, under the microscope, stages: acute inflammation …

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Oral bacteria, rheumatoid arthritis and the TSA

There is a growing link between oral bacteria and rheumatoid arthritis. I keep this in mind as I pack my suitcase for my visit to my favorite people, my grandchildren, Madison and Nate. I packed my fancy toothbrush, my Tom’s toothpaste, floss and pics. I had a small container of Biotene mouth rinse. However, I only had a big jug of Crest Pro Health Multi-protection mouth rinse. I could not find a travel container among my travel gear. I improvised. I had a snap-it plastic container, guaranteed never to leak. Perfect, I thought. I am set to go. Traveled. Arrived. Couldn’t find my mouth wash. Managed with what I had. Enjoyed a wonderful visit. Traveled home. As I was cleaning out my suitcase I noticed two pieces of paper. The first said my luggage had been chosen to be inspected. The second was as follows I found out what happened to my mouthwash. The TSA has saved the country again by confiscating the very mouthwash that helps protect my mouth from disease and consequently worsening …