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.

12 comments:

Noelle said...

Dear Kelly,
Thank you so much for your website....and I love this post! I am a newbie...diagnosed in late April. My regular doctor said that this is a "good" time to be diagnosed because rheumatologist's are treating more aggressively and with better drugs. I am hoping for drugs that will help with the pain and decrease the erosions. I am just on 20 mg of Prednisone right now until I can get into my first appointment with the rheumatologist on the 30th of this month.
Loving thoughts to all who come to your meeting place. Thank you.
Noelle

nygiantsfanatic said...

Well said Kelly. My mother-in-law was diagnosed at 40ish. She had NSAIDs and nothing else. The doc told her they'd treat as it worsened. Well now, 20 some years later most of her joints are deformed and she can barely walk. Unfortunately there re still some doctors who still treat using the old pyramid. I've been concerned about my own joints getting with all the pain and my old rheumatologist said it was too early for joint damage. I didn't believe her then. Glad I got somebody new!

Kelly said...

Hi Noelle,
What a great comment:so much good stuff in a few words.

IMHO there is never a good time to be diagnosed. But I know what he means.

I hope you will learn as much as possible before the appointment so that you can have a good 2-way conversation with the Reumie.
Wow, my appointment is on the same day. So, I will remember you that day too.

Remmember, the Pred. makes you feel better, but that is temporary. It is not the cure.

I hope we get to talk more sometime. Maybe you can email after the appointment.
rawarrior@att.net

Kelly said...

Hey there Giants fan,

I am glad you got somebody new too!! It is not easy. (I am doing that now. It is hard.)

I am so glad you said that. I think even I was afraid to say that out loud. I really am careful with my words, you know. But the truth is I have met them and have friends who have those docs. It's hard to really throw out the books. THEY LOOK NICE ON THE SHELF AND THEY SERVED SO WELL FOR SO MANY YEARS...

Your old rheumatologist is just that: old. Old school.

I am sorry for your mom-in-law, but we will make it better for those who come after us. And hopefully for US, too.
Thanks.

MissDazey said...

I am like Giant Fan's mother-in-law, damage done. My wonderful pain doctor just shook his head and patted my hand as he explained some "truths" to me. He wasn't trying to be mean or not encouraging.

I want to encourage all you younger people to find the best solutions for YOU! You deserve it.

Kelly said...

Well said, Miss Dazey

Andrew said...

Great post Kelly! Even though I suffered undiagnosed for 4 years, once I was diagnosed, my rheumy moved pretty rapidly to Enbrel. I'm glad the pyramid was inverted! Makes me wonder what things will be like in another 20 years? A cure perhaps?!

BTW...my mother had Hashimotos hypothryroidism. Have you found any link between it and RA?

Kelly said...

I have had Hashimoto's since 15. It is cyclical: both hyper and hypo. I do not know the link except that there are so many of us with more than one of these things. I also have the Sjogrens. So that's at least 3! For pete's sake.

Thanks your informative comments.

andrew said...

I found one study today that indicated that a significant proportion of people with RA also have related autoimmune issues like hashimotos, lupus, etc...Like pouring gasoline on the fire! My rheumy also mentioned that such things tend to have a genetic link.

nygiantsfanatic said...

First, welcome to the "Club" Noelle. I'd like to say I'm gald you joined by it's never a good thing to be in a club like this. Make sure you research your rheumies before you settle on one. If I might suggest, try to get into and allergy and immunology group. I just switched to one b/c my first rheumy wasn't the greatest. She wasn't aggressive enough. Now I have a good group and I'm starting a drug study for a possible new RA drug fom Pfizer Corp. I've heard good things about it so hopefully It'll be approved soon. I'll be blogging about it daily if you're interested.

Kelly, a woman I know who has Sjogren's and it runs in her family. We were comparing our "meth" doses and effects, etc. and we got to discussing the possible connections of all this and we decided that they are all connected. She has others in her family who have Sjogren's along with other auto-immunes like RA and ulcerated colitis. My cousin has an autoimmune disease that I can't remember what it is. She also has RA like symptoms. Just some food for thought.

Kelly said...

Hey Giants fan,
I will definitely stay up on you and the drug study. I am for sure interested. :)

Kelly said...

Andrew,
Yes, now can you please just send the cure to my post office box...

Haha. ;D