I am so so tired, is it the Enbrel or is it not enough Enbrel?

I am so so tired, is it the Enbrel or is it not enough Enbrel?

I've never heard of Enbrel causing fatigue. Fatigue is a major part of this disease, and it usually means your disease is not under control.

How long have you been on the Enbrel? It can take 1-3 months to know if it is working, and it can be a very gradual change. Sometimes it is necessary to add something to it, like MTX, Arava, etc.

I took MTX for a year and it worked OK, but not enough. So I started Enbrel this past December. At first it worked great. Now after 2 or 3 days I start having pain and fatigue that increases everyday until my next dose.Today I get tired just walking to another room.I did some online research that said, "On Mar, 20, 2013: 166,330 people reported to have side effects when taking Enbrel. Among them, 5,372 people (3.23%) have Exhaustion, Fatigue, Lethargy, Tiredness, Weariness."

http://www.ehealthme.com/ds/enbrel/exhaustion,+fatigue,+lethargy,+tiredness,+weariness

I just don't know if it is the Enbrel or not enough. I have put in a call to my doc.

Statistics like that are close to meaningless. If the underlying condition causes fatigue, how can anyone ascribe the fatigue to the medicine? The only way is to do a double blind study on healthy patients.

It's like saying an anti-biotic gave you strep throat.

It sounds to me like the not enough Enbrel isn't staying in your body long enough. Maybe your doctor can double your dose to 50mg twice a week, or alternatively put you on something else.

I had to double my dose because one dose a week was helping moderately, but double is working MUCH better. I metabolize meds very quickly.

I agree wholeheartedly with Andrew regarding those stats.

I am still extremely tired. Hoping doc calls back tomorrow. I’ll ask for an increased dosage. Hopefully, I won’t have to go in, he is in downtown Cincinnati, 30 miles away.

Biologics don't work that way Andy. They really aren't a drug. They are DNA that modify your DNA to make your body do different work, in this case stopping them production of TNF cells. It doesn't cause fatigue, bu the disease does.

Now they may increase your frequency at some point, but it literally takes months before tnf production stops, More Enbrel wouldn't change that. In fact unless you have P that is being out of control they haven't found where Enbrel given more frequently changes much in terms of inflamation (which is what is causing your fatigue) You may need a course of predi or similar to tide you over. OR you may need a different biological at some point. My guess is that what you are feeling is simply (nothing is simple I know) a phase of the disease.

Now I'm confused lamb. I thought TNF alpha is a protein and that biologics either bind to the TNF protein "mab" or they bind to the receptor sites for that protein "cept". Now you're saying that they alter DNA?

Thanks for the info, I took my injection this morning and I feel better this evening. I usually do for about 3 days, then gradually I feel worse until my next injection. My family doc told me to take Celebrex, and it did help my stiffness, but not the fatigue. I recently stopped taking Tramadol, but that was 2 weeks ago. I've been on Enbel for 4.5 months, right now my bad days are far worse than when I was taking Methetrexate but my good days are much better :) I guess I'm expecting all good days which isn't realistic!!!

tntlamb said:

Biologics don't work that way Andy. They really aren't a drug. They are DNA that modify your DNA to make your body do different work, in this case stopping them production of TNF cells. It doesn't cause fatigue, bu the disease does.

Now they may increase your frequency at some point, but it literally takes months before tnf production stops, More Enbrel wouldn't change that. In fact unless you have P that is being out of control they haven't found where Enbrel given more frequently changes much in terms of inflamation (which is what is causing your fatigue) You may need a course of predi or similar to tide you over. OR you may need a different biological at some point. My guess is that what you are feeling is simply (nothing is simple I know) a phase of the disease.

Andy you can and should hope for all good days. It sounds like the Enbrel works for you, you just need it more of it, or you need it more often. One option is to take your 50mg/week in two doses. I do that. I take 25mg Sunday night and the other 25mg Thursday morning. I did it mostly to minimize the injection site reaction, but it keeps the levels of Enbrel in your body steadier.

Its recombinant DNA cloned in chinese hamsters. Enbrel is fully human, others are modifyed mouse dna, some are synthetic, others are combinations They are " humanized" if not that way already. Of course the process isn't foolproof which is why we develop antibodies.......

I guess I did mistate it though, its been a long day. thanks for the corection.

You are correct in how the resulting protein operates. The point is it isn't some conncotion whipped up in a lab that if alittle is good, a lot is better......

.

Andrew said:

Now I'm confused lamb. I thought TNF alpha is a protein and that biologics either bind to the TNF protein "mab" or they bind to the receptor sites for that protein "cept". Now you're saying that they alter DNA?

I would feel better if it was made in good old American hamsters!

I agree as to how it's produced. Modified DNA is used to produce the protein. But isn't what's put into the syringes a protein?

Even protein is made of DNA. The way these drugs operate is primitive, but also give real hope for a cure. They are actually changing disease process. No other drug has ever done that except maybe stem cells.

I thought that DNA forms a template for RNA which somehow forms a template to make the protein? I'm going back a bit here. I haven't studied this stuff since high school or early college.

Andy, don't worry. None of what I'm asking Lamb about changes his answer to you.

That's another good idea. My

Rheumatologist has not called me back, it usually takes a few days. But I will ask him about all of the suggestions I've received. I get much more information here than anywhere else, even the Enbrel call center :)


Andrew said:

Andy you can and should hope for all good days. It sounds like the Enbrel works for you, you just need it more of it, or you need it more often. One option is to take your 50mg/week in two doses. I do that. I take 25mg Sunday night and the other 25mg Thursday morning. I did it mostly to minimize the injection site reaction, but it keeps the levels of Enbrel in your body steadier.

Its a fusion protein. Its actually (over simplified) an entirely new protien with a difernt function. going way back rna would be a catalyst for a reaction /function. It was the process for cloning the DNA making the fusion protein reproducable that the boys in texas sold for pennys, not knowing the billion pfizer would make.

You probably have a better understanding than I. Cloning was something that only happened on the enterprise replicator in the first run of star trek last I studied this stuff.



Andrew said:

I thought that DNA forms a template for RNA which somehow forms a template to make the protein? I'm going back a bit here. I haven't studied this stuff since high school or early college.

The Trouble with Tribbles!

Today I had my first dose of Humira. My rheumatologist believed that I was developing antibodies with Enbrel. I felt good for 3-4 days and then it was downhill until injection time. Hopefully, I will do better on Humira :)

I made the decision to stop methetrexate and enbrel. I have a pain evaluation January 8, 2014. I've been diagnosed with SI joint pain, failed laminectomy, bursitis.... now they think I need another hip replacement. Honestly, I hope that's it. The one I have in my left hip was the best thing I have ever done. I believe that methetrexate and enbrel are making a mental invalid of me. I suffered with pain for years, without this sense of hopeless, helplessness. I've only just missed one dose of both, so I will see what happens. If I will have surgery, I'll have to stop anyway.