I think Enbrel has stopped working

I think Enbrel has stopped working

Has anyone else had the experience of Enbrel not working after 9 months? For the last week and a half I am getting progressively more painful and fatigued, back to what I was before starting it. My joints are swollen and painful and the fatigue is bad again. I can hardly walk my feet and ankles are so painful and I am almost unable to lift my arms due to the pain in my shoulders. Typing at work is becoming an excruciating experience. aghhhhhh.

My GP said give it another couple of weeks and see if it changes and if not ring the rheumy. I thought it would take years before it stopped working.

43 Replies

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  • Sorry you feel rough. The drugs maybe are working but something has triggered a flare. When I get them they tide me over with steroids and I glare usually with doing too much or infections and stress.

    Think first what you have been going recently if it had any bearing on it?

    Rest and use your pain relief , hot/ cold pads I think and don't leave it too long to go back to Rheumy as he may want to give you steroids etc if needed. Take pictures whilst you are sore to show him as well it may help.

    Sending hugs xx

  • I felt fine last Friday, then did injection last Saturday morning and from then on have gone down hill. I was hoping the Tuesday and yesterday injection would make some difference but I am getting progressively worse. I don't think I can go on steroids again as I got cushings syndrome and it was why I had to come off them at the end of October. It is going to be a struggle working full time feeling like this.

  • Ah yes I forgot about the cushings. Can u take some sick time or holiday ?

    Were you poorly when u took the Saturday morning injection?

    However if after all this time you are not improving I would call the Rheumy nurse and explain. You have given it a good period of trial time !

    Maybe starting a different biologic would help ? I found Humira good for fatigue , enbrel helped my swellings but both didn't last too long for me tho others are on them years happily xxxx

  • I have just had two weeks off hahaha Don;t think they would be happy if I took more time. I woke up on the Saturday and thought oh I really need the enbrel today my body is feeling awful and I have just gotten worse from there. It is just bizarre. I am also not sleeping again as I wake up in agony. I don;t have an appt until March as it is so booked out. One rheumy for the whole of the city I live in and surrounding areas. Just disgusting. I hope this is a glitch and that it really hasn't stopped working. Back to square one would be a killer for me.

  • Hi sorry to hear you are having a bad time. I have only just started Embrel so can't help with question but can understand your struggle at work. I just wondered if you have an equivalent to Access to work ? I was assessed and was given Dragon software to help when I can't use keyboard. Hope you feel better soon and fingers crossed it hasn't stopped working. X

  • Hi Lainee

    thanks I am hoping it hasn't either, but I fear the worst.. Yes we have reasonable adjustment, but It is too noisy where I work it would pick up everyone's conversations hahahah Heaven knows what I would end up with in my documents!

  • Lol yes I can imagine as I forget to stop it sometimes when people speak to me ! Let us know how it goes for you x

  • I'm really hoping this is a hiccough and normal service resumes. If not it is back to the drawing board

  • Hi, im sorry you are struggling.

    It's possible for enbrel to stop,it did after 8months with my mother and never worked with me.

    Enbrel works differently on everyone as any other medication do.Fingers crossed everything will work out for you.sending beat wishes

  • Thank you. I just hear about people on it for years before it stops working so I thought it may be a flare it isn;t coping with or bad batch of enbrel or something, anything other than it has stopped working :)

    I have never found it to be a wonder drug that some people talk about, but it did help enormously with fatigue.

  • I hope it's just a blip, but could it be an odd batch of Enbrel?

    Since I had to come off infliximab it's taken me ages to find a biologic that works. Infliximab worked for about ten years plus methotrexate. I really sympathise with your aches and pains but I'd advise caution when changing meds, anything should be gradual although obviously moving from Enbrel would just be a switch.

    Hope you find something that works soon

  • Thanks Cathie, I will only get to try another 3 biologics after this so I really want it not to be failing. I have very limited choices due to my liver and chemical sensitivities so I am doing a lot of praying at the moment.

  • I dont think I've got much choice left either. I found that taking the biologic + another meds did work better and longer, but I had to give up methotrexate because of liver too. My approach is to make the most of the good days.

  • yep I agree. I have been reasonably good up until now. Oh well

  • Sorry to here this but same thing happened to me after about 8 months I started aching again but kept taking embrel it then started giving me respiratory problems so was taken off and now I am on humira. Bit scary after what happened but I remain positive that this one will work good luck but be. Vigilant about what is happening to you and my best bit of advice is to keep a health journal x

  • Thanks Adycol. Yes I do keep a health journal as my memory is shot! Hahahah I guess I will give it a few more weeks and call the rheumy nurse if nothing has changed.

  • every body is different and if I where you I would talk to your dr. However in some cases my understanding is that they will give you a steroid and that will get you back on track or they will talk to you about changing medication. I have personally found that taking supplements like organic turmeric and seeing an alternative health specialist has really helped my arthritis.

    Good Luck with everything.

  • Thanks Kalel. I will give them a ring if it doesn't resolve soon. I can't afford alternative health care as it is very expensive and the things they give you are ridiculously expensive. I have a few other issues that I manage to juggle in a very delicate way so I don't want to tip them over the edge either. Thank you for the suggestion though

  • ok no prob.. I understand however if it helps you at all I am seeing an rheumatologist that specialises in things like homeopathic medicine/acupuncture etc on the nhs.

    I understand why you may want to wait a while before you call your dr but you don't want to leave things to long because that is how you can end up with joint damage. Also even if you do have other health issues going on make sure you do some sort of exercise if you are not already.. cause the stronger your joints are the better etc you will feel.

    Good Luck on your health journey. Hope you start to feel better soon. Take care

  • I live in Australia so all naturapathy is private out here. I can't exercise as I just don't have the energy after working full time every day, I just don't have anything left.

  • I understand. It Is a hard life when you need to working and suffering with an illness. I am a business owner and am not getting enough sleep at the mo so I understand how you feel.

    up to you, of course but if you feel like it I would def recommend reading a book called the medical medium, listenig to some of the podcasts on the paddison ra page and checking out someone called john mc dougall. He has a great you tube page and internet site.

    nutritionfacts.org/blog/

    Good luck on your health journey.

    Take care.

    Dr greger also has a you tube page.

  • You can alter the frequency of it before you give up on it totally - see if you can get an appointment with your rheumatologist to discuss as soon as you can. I personally wouldn't wait the two weeks your GP suggests, but contact the rheumatology clinic now (as you will undoubtedly have to wait for an appointment anyway).

  • Thanks earthwitch I do two injections a week now as it wasn't holding me having one a week. i will give it until early next week and give them a ring, my guess is they will make me wait until March.

  • Hi, I was on Enbrel and it stopped working due to other medical issues and the Enbrel had to be stopped twice. When I was able to start the Enbrel pens again it just didn't work anymore. My biological nurse felt it was the steroids that was working to control my pain.

    Hope this helps, take care. Sue

  • Thanks Sue who knows what may be going on. It is painful is all I know haha

  • Sorry you are in so much pain. I am on 4 prednisone tabs a day and it is keeping me pain free. I also had another infusion before coming to Canada 3 weeks ago which is also helping but I had a strong pain up my spine on the 3rd infusion which effected my blood sugar and my blood pressure. The last infusion I started to feel the same pain travelling up my spine and asked the nurse to stop the infusion until the pain settled. The infusion was completed, but not sure I want to try having another infusion, maybe they are not for me. I do want to reduce the steroids as I have been told that I have steroid induced diabetes.

    Hope you get your mess sorted, I wouldn't wait too long to get in touch with your GPS or Rheumatoid nurse. Good luck getting it sorted especially with having to work, I know what that was like and I was forced into retirement.

    Take care, Sue x

  • Oh that sounds painful. I don;t think they do steroid infusions here and I had to stop steroids in October as I had cushings syndrome from them. I guess it can only go two ways, it will start working again or it has really stopped working. Time will tell I suppose.

  • Sorry, I didn't explain myself properly, the steroids are another medication along with the biological and the infusion.

    Take care, Sue x

  • Hi there! Try to hang in there with Enbrel until you try a new box. I had the same thing happen to me. I was on vacation for 2 weeks. I had kept the pens in my purse, because the guidelines for Enbrel say that it can be kept out of the fridge for up to 14 days. During that time, I started feeling symptoms come back. Over the course of 4 weeks, I was getting worse and worse and feared that the Enbrel had stopped working. But once I started a new box of pens, I began to feel much better again. I am not sure if it was a bad batch or if it had to do keeping the pens out of the fridge, but I am back to my good self now on Enbrel. I hope you have the same result!

    All the best to you!

  • Thanks for that. I have stored them correctly and they have been refrigerated the whole time. I do 25mg injections twice a week and you can see if there are any impurities or if the liquid is cloudy so it looks ok in that sense. I suppose I will have to wait and see. Glad you had success in the end

  • Ebrel stopped working for me after I had to stop it to have an op, was on a weekly injection was then put on same dose but split between 2 injections weekly, I started to work again, maybe not quite as well as before but well enough.

  • Tahnsk ChrissyD I am already in split dose twice a week as the one shot a week didn't hold me. I am wondering if it was an indicator that it may not work long term for me. Oh well I will wait and see

  • How are you doing a month on Soneonesmother?

    Really really interested in your experience with Enbrel.

    I'm due my 11th injection, I'm on 50mg weekly. Was doing amazingly well and am going back to work after 10months off.

    Last Monday had the most wicked flare up in my wrists, it calmed down after 24 hours of total disability but still feeling that awful achy, shooting gnawing pain in my hands that only people with RA understand.

    Next Rheumatology appointment is on March 18th. Really worried.

    What has happened to you since your post a month ago?

    Mx

  • It was the ebrel that was bad and as soon as I started the new box and within a week and a half I started feeling better.

    I have been off it for 2 weeks now as I am having surgery in the morning. Mind you I don't feel quite as bad as when I had the bad batch of enbrel!

    Hopefully the achy stuff will settle down for you. I have never been pain free and amazing like other people talk about but it does work really well on my fatigue which is more debilitating as I work full time. I am hoping once I go back on it it will work again, but I have heard that sometimes when you go off it , it doesn't work again. I guess I will wait and find out

  • I thought the Enbrel was not working too after about six months or so. I eventually put it down to a batch of pens with only a short 'use by' date and also I took two pens on holiday without using a fridge on the same principal as you and share a smile and probably others.

    I did use a Frio pouch which Healthcare at Home told me should never be used for Enbrel. (They then sold me a proper transportation kitwhich works very well and transports at a low temperature until you can get to a fridge.) Bit ugly .... Not at all like a designer handbag ..... But it works!

    I made a decision to never accept a delivery of Enbrel with a close use by date ever again. The difference in my mobility was very noticeable when I used a fresher batch. It felt very different.

    I also make sure any holiday plans are around the injection and not the other way round. Having said that I haven't been away much!

    I do still flare now and then and I can't pin it down to why or what but it passes quicker and feels more in control .... If that makes sense. All in all I am in a better place than before Enbrel.

    Wishing you a smoother journey. You are not alone on this sometimes rocky road. We are all learning all the time. Thanks for posting about this.

    Best wishes

    BG

  • I have the enbrel travel pouch and the two vials I took with me were fine. I started an new batch when I got home from a new box, so I really think it was the enbrel because the other box I had bought at the same time was fine. I am in Australia so I go to the chemist to buy it and I transport it home in a proper esky. I am on twice weekly injections as the pens weren't holding me for the whole week.

  • The Enbrel travel pouch sounds interesting. Not sure it is on offer here in uk. I have found it nerve wracking travelling with the pens but a bit more relaxed now.

    Your post reminded me that when I first started on Enbrel I spoke to the rheumy about one injection a week not being or feeling that it was enough to keep me moving etc but I was encouraged/told to keep going. However I am retired now and so it was easier for me as I didn't have to work full time and travel as well as spend all day out of the house.

    I really hope that you get some relief from pain soon and start to get some benefit and encouragement from the Enbrel injections.

    BG

  • It was good after I got on to a batch that wasn't working but the last two weeks off it have been hard. Coming home from work and laying down for a little rest before cooking dinner turned in to a deep exhausted sleep until 8 or 9 at night hahahahah

  • That coma like feeling is terrible. Well done for being so determined and strong. Take care.

  • Thanks Someonesmother!

    Good luck for your surgery and then subsequent journey starting Enbrel again.

    So interesting about the bad batch thing. I was wondering the same thing as also I had been on holiday and there is always the chance the temperatures while travelling and storing might have got cocked up.

    Thank you for replying so quickly and wishing you all the very best.

    Take care.

    Mx

  • Mine was in the fridge at home! I think it was just a bad batch because when I started the new box I started to slowly improve over the next week and a half.

    Thanks for your good wishes, it is now about an hour and half til I go to the hospital and I am starting to feel a little nervous!!!

  • Well I look forward to hearing how you are very soon!

    Hope you are up and about in no time

    Mx

  • Thanks I will be and about tomorrow they only keep you overnight!

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