What is Remission of Rheumatoid Arthritis, Part 3

The Story of Remission

Once upon a time, there was no effective treatment for Rheumatoid Arthritis. Eventually, various substances were found to assuage some symptoms, at least slightly. And then one day, doctors thought they had found a cure in cortisone. However, they soon learned that they were mistaken.

During our lifetime, substances have actually been engineered by scientists to have a great effect upon most people with RA. Symptoms of RA can often be decreased enough to enable some RA’ers to live a life that can appear almost normal – to total strangers anyway. This has brought notions of remission into the scope of treatment goals for RA.

History of RA Treatment Goals

1) The first goal was clear: make Rheumatoid Arthritis patients feel better.
2) Disability was generally treated with surgery.
3) Increasingly, however, the goal of treatment for RA has become to thwart joint damage.
4) More recently, “clinical remission” has become a typical goal of RA treatment.
5) I believe it is also important to discover ways to prevent the harm that Rheumatoid Arthritis does to other body systems in order to extend life expectancy.
6) My desire is to make a cure for Rheumatoid Arthritis the primary goal of research and then treatment.

If we are not sick, why do we still have to take medicine?

Clinical remission of Rheumatoid Arthritis does not mean cure. If you have followed Parts 1 and 2 of this series, then you have realized that by now. Medication can reduce symptoms by a certain percentage. If that reduction is great enough, then it may be labeled “clinical remission.” That is distinct from an organic remission which is spontaneous and not drug induced. Either kind of remission is temporary in almost every case. (See The Four Courses of Rheumatoid Arthritis, Part 1.)

Here is where you are glad that this blog is written by a real live RA’er.

Why on earth do they get to call this remission?

1) RA’ers in clinical remission are expected to continue to use strong medications (including DMARDs and steroids) which have powerful side effects and can cause serious damage. They live with the side effects, expense, and regular blood tests that the medications bring.

2) The damage of Rheumatoid Arthritis can continue during the so-called remission to both joints and other body structures. RA probably will still affect the lifespan of the patient.

3) What if cancer patients in remission had to continue receiving chemotherapy, radiation, or surgery? Would they question the use of the term remission?

Maybe remission is just not the correct word. Since there is a reduction of symptoms, and contraction of some indicators, and a slowdown of the disease progression, I have thought of a better word. If Rheumatoid Arthritis were an economy, they would call it a recession. How about calling it a “clinical recession”?

Rheumatoid Arthritis in the News: Rituxan Success

Mountain Climbing With Rheumatoid Arthritis

Every day I peruse articles and journal abstracts, updates and tweets about Rheumatoid Arthritis. Maybe that is why I get so behind with emails or other blogs I’d like to read...
I think I am straining to see the future. What is next around the bend? From where will our cure come?

Anyway, a couple of weeks ago, I found this great article in the UK Mirror online. I am so happy to share with you this positive example of RA in the news. Kudos to Caroline Jones who wrote this is marvelous story of Wendy Dawley, a 33 year old RA-er.

According to the story, Wendy was the ripe old age of 30 when Rheumatoid Arthritis reared its ugly head. She just woke up one day and “Every joint in my body hurt – my neck, elbows, shoulders, even the balls of my feet. I couldn’t put my feet on the floor to stand up… It felt like severe bruising – or as if I’d been beaten up.” Sound familiar to any of you?

Why does it feel so good to see that in print? Maybe RA-ers have just had it with people acting like we are not very sick. I cannot tell you how many times people have thanked me for just voicing what they are experiencing. I know how they feel; I want to send flowers to Ms. Jones.

Miss Dawley was shocked by how suddenly the Rheumatoid Arthritis disabled her. She had thought that Rheumatoid Arthritis was what happens when you get old. Unfortunately, she learned otherwise. “There were times I couldn’t even get up, let alone go to work, meet friends or do any exercise. My social life ended. It was so bad I had to move back in with my parents, because I couldn’t look after myself. I felt like a child.”

Happily for Wendy, she was able to get into a trial for Mab Thera (called Rituxan in the US) three years ago. These are the brand names for rituximab. Rituximab was originally created to treat B cell lymphoma. It depletes B cells, a type of white blood cell (also called lymphocytes), by inhibiting the protein CD20. B cells are one link in the inflammation process of autoimmune diseases like Rheumatoid Arthritis.

Rituximab is used in cases of refractory Rheumatoid Arthritis, meaning that the RA has not been brought under control by other treatments that usually work to reduce symptoms (like TNF blockers such as Humira and Enbrel). It is administered by intravenous infusion which can take several hours. After 2 doses, it is not given again until the patient’s RA flares. It is used in conjunction with methotrexate.

How does Wendy feel about living her life on chemotherapy? “Long-term I presume I’ll always be on some kind of treatment, but it’s a small price to pay for getting my life back.” She describes herself as “transformed.” In fact, on a recent vacation, she went mountain climbing! No wonder her story was uplifting!

The story of Wendy Dawley’s Rheumatoid Arthritis has lots of common themes. Let’s hope we can make her happy ending more common, too.

Note: Here is a link to read the entire Mirror.co.uk article. There is not a comment box on the Mirror website, so I sent them an email to thank them for the accurate and hopeful article. Here is the email in case you want to do the same: mailbox@mirror.co.uk

Rheumatoid Arthritis Requires Disease Treatment and Symptom Treatment

There is a difference between disease control and pain control for Rheumatoid Arthritis.

There is no cure for RA. You probably gathered that from yesterday’s blog. However, there are medications which can curb many of the effects of RA by actually cutting it back.

These are the medicines referred to as DMARDs: disease modifying anti-rheumatic drugs. The most common are methotrexate and Plaquenil. There are others, but those are used the most today because they are considered the most safe and effective.

Biologics like Humira, Remicade, and Enbrel are also used to attack the disease. Think of them as a newer subgroup of DMARDs. For a very few people, DMARDs bring on a thorough remission of the Rheumatoid Arthritis.

If you have taken them, though, you know that they are not a cure. They reduce the disease by attacking the immune cells which attack us. But those immune cells continue to multiply and fight back. That’s one reason that I say this is like war.

The disease has its weapons – various B and T cells and the cytokines they produce. And you have yours – medications, nutrition, and various therapies. If we had a cure for Rheumatoid Arthritis, then we could fire that ONE weapon and be done with it. Someday we’ll be there.

Meanwhile, back at the ranch…

We sit in our tank and fire our big DMARD guns at the RA. And we cut the enemy down to a more manageable size. But, then we still have to deal with what I call the “leftovers” – the many symptoms of Rheumatoid Arthritis which are left after the DMARD has worked its magic.

To fight those, we use “extra” medications which include the following:

Steroids, which reduce inflammation quite effectively;

NSAIDs, which also reduce inflammation and pain, but less effectively;

Various other types of pain relievers or pain blockers, including narcotics;

Treatments, therapies, and medications for every other extra-articular symptom of RA such as drops for dry eyes, iron for anemia, heart disease medications, anti-depressants, or medications for relaxation and sleep, yoga, and massage therapy.

As warriors against Rheumatoid Arthritis, we usually try to take as little total medication as we can take – and still be able to live our lives fully. Most RA patients live with lots of “leftover” pain.

Why is that?

There are 3 reasons for this:

1) We want to protect our organs from permanent damage due to long term use of too much medication.

2) We want to avoid side effects of medications, which often compound some symptoms of the RA.

3) We do not like being judged as weak by others because we are dependent upon medication.

It can be hard when you are deciding whether to take more medicine so that you can get out of bed or whether you want to save your stomach, liver, or kidneys. It’s like a game of Risk.

It is war. So we need to be strategic. If we are going to use any “big guns,” then they should be the ones which can do the most damage to the enemy.

If we were shopping, we’d ask: What will give me the most bang for my buck? Usually, that means giving priority to taking whatever combination of DMARDs will provide us the most disease control possible. Then, after that, we decide how we’ll go after the leftovers. We have to - so that we can function.

It’s not a perfect strategy, but it will do until the cavalry comes – with the cure.

The Controlled Burn Strategy of Disease Control for RA

How Rheumatoid Arthritis Medicines Work Like a Controlled Burn

Here in Central Florida, wildfires are a regular problem. Sometimes, it rains down cinders when the fires are miles away. Creepy until you get used to it.

However, I have seen several fires in my own neighborhood that were out of control. One season, we got used to going to sleep with the helicopters a mile behind our house “keeping an eye” on the fire for us. And last year, the fire came right up to my friend’s yard. Green on her side of the fence - black on the other. The firemen flooded the property line to protect her property.

The fires cannot be prevented. There is fuel. And there is heat. And there is a long dry season. So, there will be fires.

Instead, there is the strategy called “controlled burn.” The forestry service comes in and sets fires on purpose. But they do it for a good reason: they burn up some of the would-be fuel, hoping to prevent an “uncontrolled” flair later. Once, they burned right behind my house. It seemed like the swing set would catch fire.

Yesterday, when I did my shots, I thought how much they are like a controlled burn. My leg undoubtedly feels like it’s on fire. But that’s actually not my point.

It’s just that I’m doing something that appears to be harmful –but for a good reason. It is destructive. At least to the immune cells that die, it is. But, it’s for a good reason. The hope is to prevent an inferno of the Rheumatoid Arthritis through my entire body.

I have to put the methotrexate needle deep into the quad muscle. And sometimes, it rebels. There are spasms and pain for days. This week, I got new spasms on the left leg and the right leg is still injured from last week. (This is all on top of the site reactions from the Enbrel.)

But this is not the real danger. The shots and the side effects are merely a nuisance compared to the dangers of Rheumatoid Arthritis. That is like the wildfire: a menace which is difficult to get under control. And which produces irreparable damage.

Disease modifying medications (DMARDs) are the best thing there is today to put water between you and the RA. They are creepy until you get used to it, but the goal is to keep the green on your side of the fence. It beats the helicopters. They can be really loud.

The Four Courses of Rheumatoid Arthritis, part 2

Once you have looked over the four courses which RA can take, you might wonder, so what?

What difference does it make to my treatment? Do I have any influence on which course my RA will take? That is the 64 million dollar question. And the answer is this: MAYBE.

All of the currently used DMARDs have the goal of altering the course of Rheumatoid Arthritis. There is a lot of controversy over whether that is actually possible. The American College of Rheumatology is urging doctors to use more aggressive treatments than were thought necessary only a few years ago.

The goals of treatment are remission, and then a cure. (Stay tuned to RA Warrior for an upcoming post on remissions of RA.) Meanwhile, what does this mean if you are an RA patient? It means get a doctor who wants to access your disease accurately, and then treat you as aggressively as possible, considering your apparent disease course. Tell him/her you don’t want to ride the Tower of Terror!

If you are on courses 3 or 4, and if the DMARDs scare you, try to learn as much as possible about what RA can do to you. That will scare you more! That will probably help you be ready to go on offense.

There is another aspect of this that is difficult. It is unclear what it is that brings about a remission. Usually, it is spontaneous. It is believed that, for some, it has can be brought about by a combination of DMARD medications.

Spontaneous remission tends to make us superstitious. It comes out of the blue. Whatever supplement was tried last is given credit. It is like the way we wear a lucky shirt because it might help the team win. However, none of these things bring actual remissions to people who are in the fourth group. Hmm… I think a real cure would.

What difference does it make to me? How does it impact my life decisions? Knowing more about RA and what course it may be taking can help you to make many other decisions. It always helps to know what to expect.

Here is a short list of decisions to which RA status is relevant:
* Should I have a baby?
* Should I buy a particular house (with hills, stairs, land…)
* Should I change careers?
* Should I live closer to extended family?

One of the worst things about Rheumatoid Arthritis is that we have no idea where it will hit us next. Knowledge will make it less mysterious. Let’s begin today with the big picture. And we will keep learning from there.

Finally, what difference does it make to each other? Some people with Rheumatoid Arthritis get remissions. Some don’t. Some have more permanent damage that continues during remissions. Some have less. Armed with these facts, we can understand one another better and not assume that everyone is like we are. Oh, and, by the way, I’d wear the lucky shirt, anyway.

Pyramid Approach to Rheumatoid Arthritis Trashed

Pyramid v. Surge

OOPS!
If you’ve read many books or articles on the treatment of Rheumatoid Arthritis, you may have heard of the treatment pyramid. During past decades, this was the general treatment plan for all RA patients (regardless of disease course type).

Here’s a brief summary of what is was like to climb the pyramid:

If you have pain, you use otc NSAIDS. If it gets worse, and you have obvious inflammation, you use prescription NSAIDS. If you come back to the doc asking for something stronger, you get an actual steroid prescription. If you don’t get better after a couple of years, you get some kind of DMARD (disease modifying) prescription. Low dose. If you keep complaining, you may get to add a second DMARD. By now, you may have had a surgery and a steriod injection or two. If you are stubbornly not cured, you may end up eventually on a combination of DMARDS and NSAIDS which hold your symptoms at bay (called a season of remission) – except for when you flare. Of course, the newest medicine available at the top of the pyramid is a Biologic (read Enbrel, etc.) However, by that time, you have lots of irreversible damage.

I feel hopeless just reading that. Who could climb that pyramid without getting hurt?

That was then.

Good news:

The pyramid has been scrapped! In recent years, the ACR (American College of Rheumatology) has begun to recommend inverting the pyramid. They realized that all that time RA patients were in pain, they were also suffering damage. Damage from day one!

Now they will use stronger medicines earlier in the course of the disease. And prescribing larger doses and more combinations is becoming the new standard treatment for Rheumatoid Arthritis. I call it the SURGE. (Think: war.) The goal is to bring remission sooner and prevent more damage.

Some who have been sick with RA for decades have lived through all the changes. I lived through the same thing with Hashimoto’s disease (an autoimmune thyroid disease). During the 30 years that I have been diagnosed, they have thrown out the books twice - and rewritten them! Oops. That has had a big impact on the treatment that I am able to receive.

Of course, medicine is a practice and most doctors are practicing it the best that they can. But, they can’t learn to do any better if we just keep quiet about it. I want patients to be a part of this process as we continue to re-write the books.

Article on controlling RA
Oxford journal abstract

NIH abstract

Baloney About Rheumatoid Arthritis

How Do You Spell Baloney?

“Baloney,” I muttered to myself the first time I saw an ad for a Rheumatoid Arthritis drug. My jaw would have dropped – if I could have opened it. Who am I kidding? If I could have, I would have liked to throw something at the TV or at least the producer of that ridiculous commercial.

I don’t think they are still running it. A woman sits on the beach watching children play. And since she is supposed to have RA, she sits massaging her knee firmly with her hands.

Here is what I was thinking:

1) How did she get so close to the shore? Did she walk on that knee through the sand? There is no one else around. Did she carry that lawn chair herself?

2) If her knee hurts, why is she rubbing it so hard? Rheumatoid Arthritis makes joints so tender that it is painful even to brush against them lightly.

3) What person with Rheumatoid Arthritis can rub anything firmly like that? Aren’t the hands supposed to be the first to go? (Well, with me it was the feet; I like to do things the hard way.)

It was not a realistic depiction of RA. So that same company has a new ad series. Instead, a woman goes dancing through her day – either managing her huge dog with ease or enjoying fine dining with her romantic interest. Her life is bliss. Thanks to the drug. Baloney.

How about the magazine ads? Every time I open a magazine, there is an ad for a Rheumatoid Arthritis drug which pictures the hands of a senior citizen. Hey, I hope I grow old, too, in spite of RA. But, most people get RA between the ages of 35 and 50. And we are having a hard time getting the message out about that.

Why can’t they use a young hand in just one ad? I plan to ask them and I hope you will, too. Why can’t one ad ever show a man with Rheumatoid Arthritis? At least twenty percent of RA patients are men. Don’t you think people would react strongly to see how RA can destroy a man in the prime of his life? Why is there not ever a single child? Now that would evoke some concern. That’s right; there are at least 3 types of RA which make up Juvenile Rheumatoid Arthritis.

For that matter, why can’t they ever once use a real RA patient in an ad, instead of the bouncy actress? I bet there are thousands of RA patients who would do it for free just to get the truth out. Take that back - we need the money – our treatments are really costly.

That reminds me: when I first went on biologics, my RA doctor told me how angry she is that they even HAVE ads for these drugs. Her opinion: “If you have RA, your doctor knows about the biologics. And if you do not have RA, no one is going to prescribe them for you. What are those ads FOR? It is a waste of money which could be used on research or helping patients get the most expensive medicine in the world, which they need to live.”

At least those ads are for a drug which actually treats arthritis. The one that really aggravates me lately says this: “For many people with arthritis, not treating is not an option.” This medicine is not an arthritis treatment. It is a temporary pain reliever. This ad confuses people about what arthritis is. If they mean Osteoarthritis, they should say so. Perhaps they do not so that they can sell more of the drug. That is the point of advertising, right?

How about this one? What are they claiming their drug can do? A picture of barbells has the caption: “Arthritic joints need strong muscles to protect them. Tylenol Arthritis Pain.”

If they want to advertise, I say fine. I like a free market. Could they at least promote truth about the reality of Rheumatoid Arthritis at the same time? Wouldn’t that build trust, which is what strengthens sales in the end?

Beats the baloney they serve up now.

Rheumatoid Arthritis left my glass half-full

I knew the glass was half-full.

Two months ago, I could do about half of what I could do before RA. The dr.s kept saying I should be getting even better. I really wanted that, too. The doses of my meds were as high as they could go: Humira weekly (that's a double dose); and methotrexate 25mcg by injection (much more is absorbed by injection). Maxed out at those, my functionality was at about 50%.

So, when the dr. said lets try something else, I was game. Well, we went to Enbrel, which works almost the same as Humira. But, Humira is a long acting 2-week dose and Enbrel is a weekly dose. I asked the dr. and two pharmacists: Are we essentially cutting my medicine in half? They all said, "Not really."

Every time I inject myself, I pray that it will help me get well. And then I thank God that I have the medicine and remember those who have had RA without these strong drugs to help them survive it. It really does help me remain hopeful - not to mention how that helps me stick myself.

Well hopefulness aside, it's been over a month. I am 5 shots into the Enbrel regimen, and it's not looking good. Every week is worse. I am productive only about 2-3 days per week now - sort of.

There is a lot more pain, of course. There is stiffness and weakness. There is fever, nausea, and lack of appetite. But the worst are the Sjogren's syndrome and the fatigue. Sometimes, I literally cannot move. I cannot lift up my head.

There are no words to accurately describe how desperate it feels. The tiredness is so extreme. I feel like I'm falling down a hole in a cartoon; I keep sliding downward and there is not a bottom. Gravity is so strong.

Now, I am kicking myself for changing the prescription to begin with, of course. I knew the glass was half-full. I was grateful for that. What will this cost me? All of the suffering I could describe is nothing at all compared to knowing the unseen damage that it is causing within my tendons and joints and my eyes and my nerves.

But that's not the worst. The worst thing about my half-full glass having spilled is the time that is gone. Calendar pages fly by and my life is going on without me. Ouch.

I want my half-full glass back. And next time, I will put a sippy cup lid on it.