My RA Methotrexate / Enbrel Test: How Well Do Methotrexate & Enbrel Work on Symptoms of Rheumatoid Arthritis?
My “dangerous” RA research?
These last few weeks have provided me with an opportunity to measure the success of methotrexate and Enbrel at treating Rheumatoid Arthritis. Although I was an accidental guinea pig, I have been interested in to learn all I can from this test. How much worse would my Rheumatoid Arthritis symptoms be without the injected Biologic medication to added to the methotrexate dose? How long would it take before the symptoms of pain and fatigue were killing me?
My first RA symptoms experiment
Last Easter, I had to discontinue both my Biologic and my methotrexate doses due to a kidney infection. I only skipped one weekly dose of both injections. Thanks to 21st century antibiotics and a quick primary care physician, the infection was quickly cured.
However, for over a month, effects of Rheumatoid Arthritis showed me how well the medications had been working. Perhaps you’ve read on this blog that I have not had a remission from RA flares in the almost four years. That month last spring taught me just how bad the Rheumatoid Arthritis symptoms would be if I did not have the alternative of taking these powerful treatments.
The RA fatigue was intense. Maybe you read on the blog about how desperate I felt. I could hardly do any work. Instantly, I was taken back to the time of my diagnosis, except that the Rheumatoid Arthritis had not yet taken every joint way back then. The intense pain, fatigue, and stiffness of RA took longer than one month to subside to the level it had been before the kidney infection. The medications kill about half of my RA effects – not what I’d call remission.
It was not much worse this time – so far
This time, only the Biologic was discontinued for six weeks as part of my rheumatologist’s plan to transition to a new medication. The methotrexate injections were uninterrupted except for one missed dose when the flu worked its way through my family. Since my Rheumatoid Arthritis has been steadily aggressive, I braced myself for the RA to get much worse than it had missing only one weekly dose during my last experiment.
Some RA symptoms are much worse, and some are not so much. Of course this is not a scientific experiment because there is no objective measure of RA and I am only one patient. However, it is still a real test of which medicines work on my own Rheumatoid Arthritis and how they work. It has given me a clearer picture of my alternatives.
What the methotrexate does
The methotrexate works on my joint pain and weakness. The two days after the methotrexate shot are pretty good days, as long as I do not push myself. However, on the third day, the fever and stiffness return with a vengeance. The pain is more than with the addition of weekly Humira (last year), but still far less than without methotrexate. The fatigue is kept in check by the methotrexate until couple of days before my next shot.
What the Enbrel did
It seems to me that the Enbrel must have worked on whatever causes this fever in a longer-acting way – I have a fever 5 days a week now. And I’m much stiffer without Enbrel. While I took Enbrel, I also had few Cricoarytenoid Arthritis (vocal cord) symptoms, which are returning now as the Enbrel is wearing off. My eyes are a lot drier, too.
Please do not miss the point about Enbrel, methotrexate, and Rheumatoid Arthritis
I hope I have not gotten us lost in the woods. This post is not about my kidney infection – or my own RA symptoms. This is not even about choosing between different disease modifying treatments / DMARD’s. My point is that my little impromptu tests have shown me how much methotrexate, the so-called dangerous drug – and Enbrel, which I had erroneously seen as pretty ineffective for me, have actually worked together to take down certain symptoms of Rheumatoid Arthritis.
Note to anyone who may be asking, “Can I take just methotrexate?”or “Can I just take Enbrel?”: As explained last week on the blog about Biologics, methotrexate and Biologic medicines work best together. That is the advice of doctors and the drug manufacturers.
Recommended reading:
Working and Rheumatoid Arthritis
Love of Challenge and the Rheumatoid Arthritis Speed Limit
Book review: What to Do When the Doctor Says Its R A
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you are in the very same boat as me ..i take exactly same stuff and had same experience being off for the flu.
Row, row, row your boat…
I have the exact same experiences. Was getting a little cocky about “maybe its not as bad as I thought, and maybe i dont need these drugs anymore” ..then was off them both for a month with horrid flu/cough.
Boy it came back with a vengeance, like someone opened a lions cage and it pounced on me like I was fresh meat.
I’m still hobbling around like an old woman …had to break out the ole neck brace (which had been retired to the closet) and quit the gentle gym exercises. Just getting around is the only demand I’m making on myself this week.
It’s been a week back on enbrel and metho, and its slow and comes in tiny increments of relief. My sleep was a little sounder last night. My back isnt ruined by standing for more than two minutes. My neck still feels like I’m wearing a two ton tonka toy for a hat.
So yeah, I still need the drugs. I wont wonder about that again, ever!
Thanks for your blog post ..it was really close to him this time!
Sadly,
)
I hear this a lot: I’m better now. I’m going off my these crazy meds…
Unfortunately, the RA will not stop doing damage even if the symptoms DO wane (mine don’t).
So, that’s a hard lesson we had to learn, but thanks for sharing to help others learn from your own “research trials” too.
(BTW, Kay…
Wow! I am having a flare and can you imagine I am tired of this after 5 years. I don’t like medications, the fewer I have to use the better. However, I realize with RA you don’t have a choice. For the last year I have tried only to use Enbrel. When I have flares and take prednisone I never do feel like I get close to a remission after I taper off prednisone. I was wondering if I should do something different and have a call into my Dr. I wouldn’t be surprised if he used methotrexate again in combination.
Teresa,
Thanks for commenting.
Most doctors will try to get you to take the mtx with your TNF (the Enbrel) since if you don’t, your body will become “immune” to the Enbrel and it will stop working for your RA sooner than it would otherwise. What eventually happens is that people run out of options…faster than new medicines become available.
Please let us know how it goes for you.
I totally understand!! I accidently missed four doses of Arava. I couldn’t pick it up and I thought, “oh well, it’s only a few days, I’ll be fine.” Famous last words. I was hit with the reality that I do indeed have RA and I definately NEED these drugs. After five years of RA, you would think that I would have passed the denial stage!!
Hi Mer,
Reality ck, huh?
Since I had the flu 5 weeks ago ( had the worse bout of RA flares during the 10 days I was sick- fever, so swollen) long story short, I have not had a flare, I can’t tell you why… I am not stiff when I wake up in the morning, how long this will last, no clue. I know I did quit all dairy 4 weeks ago and all meat over the summer– do eat fish– some fish, anyway, I saw my Dr today, he gave me the go ahead for the * minocin * I am going with the antibotic theraphy for my RA for a few months, wish me luck folks, I think most of us have to try different routes and just need to keep each other informed, take care and thanks for reading
Kelly:
I hope that you are able to start meds and get relief soon. I pray for you all the time and hope that you soon will get the remission that you so very much deserve! Hang in there! I do think though that no matter how long we have arthritis, we have some form of denial. Though I have been suffering since I was in nursery school so about what 23 years now, I still have moments of denial, mostly of my limitations. Hang in there!
I had exactly the same experience being off Enbrel for 3 weeks – it was a nightmare. I was in so much pain I could hardly moved. The bright side is that it showed me how well Enbrel really does work and showed me I’d made the right decision to take it.
One thing I’ve discovered is that you never realize how truly badly you feel until you go off any of the drugs.
If you think you’re hurting while you’re ON the drugs [and you are], it’s nothing compared to being OFF the drugs.
I have spent the better part of the evening researching the need for Enbrel alongside methotrexate. I started experiencing shortness of breath, anemia, and some dizzy and fainting spells, my general practioner sent me to a pulmonologist to have my lungs checked,and he also ran some blood work. i knew that I was slightly anemic, but I had never had any of these problems before. I know from researching on my own that methotrexate can cause pulmonary issues and anemia. However I learned that enbrel can excacerbate anemia as well. Since I stopped taking the methotrexate that my shortness of breath has gotten alot better. But, I’m also taking Advair too. Soooooo…..I don’t know what to think! I’m so confused. Does anybody have any ideas? Thank You- Elizabeth
Yes, it’s confusing when you change more than one thing at a time. Impossible to prove what is causing what. Just a thought: if it were the mtx, it’s doubtful that the improvement would be so quick. That would lean toward the Advair. I hope you can get an answer – get another opinion if you need to… It could be something else entirely.