Showing posts with label Humira. Show all posts
Showing posts with label Humira. Show all posts

Wednesday, June 24, 2009

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.

Tuesday, June 9, 2009

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.

Monday, May 18, 2009

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.