Anyone know what happens when Enbrel fails

hurdygurdy

I have been using this for about four or five years now, and it has been absolutely fantastic.

However, I am getting a bit fearful at the moment, as for the last couple of weeks, I have been having a return of the pain and stiffness in my fingers, pain in my wrists, left elbow, left foot/ankle and just this morning, my right ankle has joined in. It is bad in the mornings, in particular, and eases off over the course of the morning. Usually by lunchtime or early afternoon, I am more or less "loose" again.

My next appointment with the rheumatologist is 18th August.

The pain and stiffness, in fairness, isn't as bad as it was when I was at my worst, just before being put onto Enbrel, but I am really starting to worry about what will happen if this continues.

For me, Enbrel was (literally) my life saver. Methotrexate upset my white blood cells, Sulphasalazine was useless, and at the peak of the pain, I was literally toying with suicide, as I couldn't bear the thought of living with that pain for the rest of my life.

I don't know if Enbrel comes in just one dose level, or if the dose can be increased, or the number of injections increased. I am just so frightened that if it's seen that it's lost or losing its effectiveness, then as it is so darned expensive, they'll say it's not cost effective for me to continue with it.

I'm scared to go and be truthful with the consultant as I don't know what the outcome might be. (And my usual consultant has retired since my last appointment, so I've also got to get to know the new consultant.)

Does anyone have any experience of this.

(I can't look at the instruction leaflet, as I don't keep the meds here. I am a wimp when it comes to needles, and I go to my GP's surgery each week and the nurse delivers the injection for me. The meds are delivered to and stored at the surgery)

Gosh, this got very long. I apologise.

ramummy

You could try looking at the NHS Direct medicine guide for Enbrel.

http://nhs.medguides.medicines.org.uk/NHS/medicine.aspx?name=Enbrel&use=Rheumatoid arthritis

Hope this helps.

Ju x

c4thyg

I can't remember what the outcome was with the NICE guidelines but I know they were discussing whether or not a patient could try another anti TNF if one didn't work. I seem to remember that the numbers (probably from the US) were that 80% of patients responded well to the 2nd anti TNF even if the first one didn't work. It might be worth asking if you can try Humira.
Good luck and I'm sorry you're having difficulty again.

hurdygurdy

Thank you both for your replies. I checked the packaging when I was at the nurse yesterday, and I'm on the the higher of the two doses already.

I didn't even realise there *were* other TNF meds available, so you have really reassured me there. I will not now be so worried about "owning up" to not doing so well on the Enbrel now, and hopefully the new consultant will be amenable to me trying something else.

thank you both so much

jeannie2

Hurdygurdy,
You wouldn't have known that there is someone else in your boat with you. Not over Enbrel, but I'm in the same position as you and I'm scared too. I know the avenue you have been and are in very well and I feel for you. Let's worry together?

I can't give you any pointers other than - tell the consultant EXACTLY how you feel and have felt; all your apprehensions .. everything. You don't even have to say it - type out a BRIEF resume. Give it to the nurse when you arrive and ask her to put it with your notes. I did this a month or so ago, under the heading 'Anti Waffle Notes' and the reaction was amazing. My consultant (a new one I'd never seen before) said that my note had saved the trouble of fishing through the file. It also told a lot about me which would have taken a long time to 'wriggle' out of me. Try it - I now feel I'm getting a better level of care and understanding.

I wish you well. Let's know how you get on.
(())
Jeannie S

c4thyg

Jeannie, that's a great idea. I always have my list of questions to hand to save time and stop me forgetting anything but I never thought to write a statement. Brilliant.

Hurdy, I hope you are feeling more positive now. I'm waiting for my first delivery of Enbrel so we'll see how it goes. I did my research before going in, which actually wasn't hard as I'm a medical researcher and have worked with TNF in the past. I have chosen enbrel as my first choice as in theory it should treat all 3 of my conditions. Fingers crossed, crunch!! There are another 2 antiTNFs on the market. Infliximab, which is a weekly infusion done at the hospital and was the first one out, enbrel (etanacept) which you know about and the latest one, Humira (adalidumab) which is a fortnightly self injectable. In all likelyhood you could try Humira next. If you want more info take a look at some of the publication abstracts on pubmed.
http://www.ncbi.nlm.nih.gov/pubmed/
Enter adalidumab in the search panel and take a look. It might be useful to select the 'review' tab first to get an overview. In some cases the full article is free to download. I emailed the key articles to my rhuemy and nurse and that's how we decided on enbrel for me. I'm a firm believer in knowledge is comforting and it's much easier in the days of internet.
Let us know how you get on. Cathy xx

c4thyg

This article might be of use to you and can be downloaded free from
http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=19368701

Bare in mind that they are talking about things in the US and some of the names might be different and the guidelines can vary between countries. However, it does set a precedent for your rhuemy to follow.