Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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tootsiesmom 08/10/2013

Hello All,
I have a question about Biologics. Have any of you been on Enbrel or any of the Biologics and had them quit working? More importantly, how did you know that they quit working?
I have been on Enbrel since Jan / Feb 2013. I also take Arava, Naproxen and Tramadol daily. The Enbrel helped at first, I can honestly say that I still probably feel better than I did in December before I started it, but it seems like I am doing a backward slide.
I take my shot on Friday evening after work. Saturday is not usually a very good day, but I start feeling better by Sunday. The problem that I have is that by Thursday my head gets extremely fuzzy and I cannot concentrate at work.
At first, the Enbrel allowed me to reduce the number of Tramadol that I take daily, but I am right back up to taking 5 or 6 per day again.
The last time that I spoke to my Rheumie and I mentioned that Saturdays are usually bad days, he looked at me like I had 2 heads and said that it couldn't be caused by the Enbrel.
His answer to me when I told him I felt better than I did in December, but I'm still not sure it is working, was that I should stop taking it for about 2 months and then I would be able to tell if it was working or not...
So, I was just wondering how you knew your Biologic had stopped working and that it was time to move onto something else.
Thank-you everyone for all the support and information that you post on this site. I have learned so much in the past few years.
Kim

KiddoGal 08/10/2013

I was on Enbrel for a little over two months without much success. My RA doctor added methotrexate and the combination really works good. Seems like adding something along with the Enbrel works better than Enbrel alone. Ask you doctor about adding methotrexate. (yes, of course, another pill, just what you want right?) But maybe with the addition of methotrexate, you might be able to reduce one of the other medications. I have been taking the combo for more than 3 years now, seems to be working pretty well.

Kimberley97 08/10/2013

Like you for me remicade and Humira helped alot I might still have a few specific pains now and then or weather related pains but not an all over flare. When it stopped working so well I began more frequent pain more wide spread flares. Enbrell never did work I tried for three months but found no relief and had 3 months of infection and bronchitis so dr wants to move on to orencia but I have to wait until I find out if I need more back surgery and I am miserable tight now everything hurts! But also my rhuemy said that once you have done remicade you can't go back on that again that it won't work twice I don't kno if its like that for everything or not like if you stop for a few months can you start again and have it work? Blessings to you.

Christine26 08/10/2013

Hi Kim, That is a good question. I have been on almost all of the biologics. Enbrel included and now on Rituxan. The longest one I have been on is Orencia which is for two years. I know when and the Rheumatologist also let's me know when it is time to change by me going into bad flares and when I am having an increase in taking pain medication. I have been on Tramadol and I was ordered to take it twice a day. If you are taking 5-6 tabs if that is what you meant, it looks like the Enbrel nor the Tramadol is holding you. The doctor is correct in saying that if you hold off on the Enbrel for two months you will know if you are feeling different or not. I have been on some biologics like Simponi where it has not worked at all and I could barely walk by the end of the day. There are various ways to tell if you are in need of a change in medication. I wish you luck.

tootsiesmom 08/10/2013

Thank-you ladies.
The Rheumie has never put me on MTX, he said that the Arava does the same thing.
My fear in stopping the Enbrel is if I feel this bad on it, how will I be able to work if I quit taking it.
If your Rheumie has switched your biologic, was there a waiting period or were you able to go directly from one to the other?
My doc and I have a tenacious relationship. I like a good chuckle as much as the next person, except when it comes to my health. He feels that if he lightens the mood, it relaxes his patients. Not so much with me, just pisses me off. I don't find any of this funny, so we have some interesting appointments.
I think I am the only person in the tri-county area that doesn't just love him. He is one of the top rated in my area.
I do not swell on a regular basis, I just ache and hurt, so if he can't see it, he is not sure what it is.
Now, I'm just venting... sorry about that.
Have a great day!
Kim

deleted_user 08/10/2013

Find another rheumy if you can. It's important to have a good relationship. I agree, this is not a joke and I doubt he'd see much humor in it if he suffered from it.

sammyo1 08/10/2013

I'm on Enbrel. Could not take MTX & my DR never tried any other medication with it. Not sure why.
I'm going on 2 yrs soon here I don't feel it's working as well in some ways. If I miss the injection by one day I feel it.
The congestion is getting to me also.

I know exactly what your saying, that fuzzy head can't think feeling drives me crazy, add the exhaustion & I become a blubbering fool.

Also understand why your fearful of going off for 2 months.
It may be working well enough to just get you by & when your working or have a busy life something is better then nothing.

Seems like I hear more & more patients commenting on their Rheumotogists lack of understanding. Surely your not the only patient with this complaint. The one doctor you think would understand doesn't. That's hard on the patient.

Sometimes you simply don't know what to do or if the medication is working as it should. RA can be so complicated.

I admit I'm afraid of trying other biologics. It's stressful not knowing what to expect.
I do wish you the best of luck,
Sammy

Christine26 08/10/2013

Hi tootsiesmom, I had virtually no waiting period as I was switched soon after taking a dose of one med and the nurse would get me pre-approved with a new medication. And my insurance company would pre-approve quickly.

melissaenderle 08/11/2013

My Dr switched me from Enbrel to Humira after having several prolonged flares and increasing inflammation levels.The next week, I started right away on Humira. Alas, I developed a allergic reaction to the injection, so tomorrow I go in to get yet another type. I continue the MTX as well.
Hope you find the right combo of meds to get you back on your feet!

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