I saw my rheumatologist yesterday , and he recommend trying Enbrel! I can't help but worry about taking it!!

My doctor said that getting the injection would be less likely to effect my liver as the other DMARDS has!, so I'm waiting now to get approved by my insurance . I got more blood test to check for TB , etc! Before starting it!

I've been on prednisone and tramadol for over a month now waiting for my liver to recover . It would be good to get off both of them!

I'm just worried about the side effects of the the Enbrel ! Cancer runs in my family , and afraid of the increase of getting that also!,

I guess I'm probably over reacting , and just having some anxiety, it could be the prednisone causing it!!

Can someone that is taking it give me some good news from taking it???Thanks Gingeq

38 Replies

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  • I have been on Enbrel Injections since 2011 and I have been given back my life since injecting. I have not had any side effects unlike the Methotrexate I have just come off and I would highly recommend Enbrel. Good luck.

  • Hi d-creasey,

    I was wanting to ask why you came off the MTX. I have had my third injection as of this past Sunday. I was VERY, VERY scared to start it and like gingeq, I was very nervous about the possible side effects and cancer being the worse one. After lots of encouragement from doctor, family and friends, I decided to try it. I go back in three weeks ( for a six week lab work ) to see if all labs are good. So far, I have had a little nausea, mild headache and fatigue on the second and third day... the third day being the worse. I am on small dose of prednisone as well, and that has helped with the pain, but she will be taking me off the prednisone when I return. Rheumy had me start out with .3ml and increase 1ml every two weeks until I see her back. Not sure what dosage this is since they say the injections are higher concentrated. But, thought I would ask why you had to stop it. I am still on the Plaqunil as well. Was not happy about that since I could not figure out why she would leave me on it if it was not working. Called her nurse back and she spoke with her and her reason was to expedite the MTX. ???

    Still very nervous every time I inject, but just praying that my body will adjust to it and the brick wall feeling I get on the third day will go away. Of course as well as no ILL side effects.

    Thank you,

    Lois

  • Hello Lois. I was on it since 2011. I started on 10mg then that was increased to 17mg and they still was not getting my RD under control so I was put on 20mg in tablet form. I took it every Friday and I used to feel nauseas and fatigued until the Monday when I took my Folic Acid one 5mg. This year I started feeling so fatigued chest pain and such bad headaches that it was laying me up all week end or on a working week end I was dragging myself around to the point that I was nearly passing out. They tried reducing it but I was still

    Having the above symptoms and was not feeling well during the week. My consultants registrar would not take me off of it so I persisted for another two months but was dreading Fridays/week ends so

    much that I was getting depressed so I contacted my lovely Specialist nurse and she said stop it. The relief was terrific. I went to the clinic and got a steroid injection which has now worn off but I am managing with just the Enbrel at the moment. Delia.

  • Hi Delia- This is still very new to me since I was diagnosed in April of 2013. I was on the Plaqunil ( still am ) since that time until just three weeks ago. I also have Fibromyalgia as well. Could they not have increased your dose with injections because they said the pill form makes you much more nauseated. That is why she started me on the injections because I have such horrid side effects with MOST meds anyway. Cannot do pain meds... make me so sick. I am on prednisone... is that the same thing as your steroid shot? We take them in pill form here. So is the Specialist nurse someone different than your rheumy? Did the nausea and severe fatigue start on the pill form or did it also happen on the injections? I have only had three injections so far. It seems to hit me on the 2nd or 3rd day after injection. It is like I hit a brick wall with fatigue. I get a mild headache, mild nausea and bad fatigue for about a day. I have to increase it again after this Sunday to .5ml. Not even sure how much that is in pill form. I need to find out how long it will take before I know if it is going to help. The pain is not as bad at the moment... so I fear once the prednisone has stopped, I may feel more pain again. The fibromyalgia does not help either.

    Thank you so much for the reply back.. it is very helpful since it is so stressful and it scares me too.

    Lois

  • I asked my GP when I went for a Medication review if I could have the Methotrexate by injection as I had heard it does not have such bad side effects but he said it would not make any difference. Steriods are in pill form and injection and I was not given a choice just told by my specialist nurse to go to the clinic for the injection. Sounds as though you have a lot to contend with having fibromyalgia as well. It is all very scary as I was diagnosed in 2010 and I have still not come to terms with the fact I cannot do as much as I used to and the medication that I've been on in the past has scared me due to the side effects. Good luck and always happy to chat. X

  • Here in the States, if you have any sensitivity to meds ( AS I DO ) or tummy issues, they will give the injections verses the pill form. I have been told that it does not require the liver to break it down so much as the pill form and also causes less nausea. I would ask my Rheumy verses my GP. I am also surprised that you only see your rheumy once a year. We see ours here at least every three months or sooner if we need to. I will have my first labs done on two weeks since on the MTX. I must say I am a bit scared. How often do you have the steroid shots? Our doctors here will not keep you on the prednisone very long at all. I will come off mine in two weeks. Yes, the Fibro is also hard to deal with as well. It is even hard for my rheumy to determine if it is the RA or the fibro or both acting up. Indeed it hard to come to terms with. I was very active, did lots and lots of things and then this hit me like a brick wall and stopped me in my tracks. I became very depressed and anxiety/panic attacks hit from time to time. Hate it. I just turned 52 and feel like life is over. Keep trying to turn my thought pattern around but it is very hard at times.

    Hope you have a pain free day.

    :) Lois

  • Hello Lois I agree consultant would know more than GP and I was given to understand the injections were better. There are two consultants I believe at my local hospital and lots of patients so here I see my specialist nurse and biological nurse more often. If they are not sure they go and ask my consultant for advise. I have more faith in my nurses than my consultant anyway so I'm not sorry I don't see him. I was left in agony in my hip because he told me I would not get Athritis in my hips when I said how painful they were. After eighteen months of struggling I went to my GP who sent me for an x ray and I have had both of my hips replaced in the last year and a half so it has not given me any confidence in him at all. In fact it scares me to be under him. I understand the panic attacks I have started suffering them and I believe it's due to the fact I cannot get around as I used too. Wishing you a comfortable day as well. Delia.

  • Hello Lois I agree consultant would know more than GP and I was given to understand the injections were better. There are two consultants I believe at my local hospital and lots of patients so here I see my specialist nurse and biological nurse more often. If they are not sure they go and ask my consultant for advise. I have more faith in my nurses than my consultant anyway so I'm not sorry I don't see him. I was left in agony in my hip because he told me I would not get Athritis in my hips when I said how painful they were. After eighteen months of struggling I went to my GP who sent me for an x ray and I have had both of my hips replaced in the last year and a half so it has not given me any confidence in him at all. In fact it scares me to be under him. I understand the panic attacks I have started suffering them and I believe it's due to the fact I cannot get around as I used too. Wishing you a comfortable day as well. Delia.

  • I do not have steroid injections on a regular basis it was because I had come of methotrexate and my ESR is still a bit high

  • I do not have steroid injections on a regular basis it was because I had come of methotrexate and my ESR is still a bit high

  • Sorry specialist nurse I can ring anytime and see her and my biologic nurse several times a year. Only see the Consultant once a year.

  • Thanks d-creasey,

    I was taking MTX before, and it was working well , other than having times when I would feel really tired! But it started effecting my liver and had to stop taking it! I then tried Leflunonide and it did the same thing!

    So I guess I will try the Enbrel, and hope it works well and not cause liver problems!

  • Good luck I call it my wonder drug as before I started on Enbrel I was off sick for months having one flare after another. After the first injection I was back to work within two weeks. Hope the results are the same for you. Delia.

  • Hi,

    It's natural to have concerns, all of these biological drugs come with risk :-/. If it's any comfort, I started on Tnf almost 15 years ago with hardly any effects at all... The odd chest infection which stopped treatment for a couple if weeks here and there but, for me personally, the benefits were amazing. I could t even pick my daughter up before enbrel. It can be a life changing drug if it works for you :-). It has to be your decision in the end, only you know if you're prepared for the risk involved. I had to stop enbrel for a surgery Over a year ago and then had a serious allergic reaxtion to 'seething unknown' (wasn't the enbrel though as I was off it at the time). I was in hospital very

    Sick for 2 weeks and when I attempted to restart my enbrel it wouldn't work for me :-( I was devastated! I tried cimzia but that made me (personally) very unwell .. Works great for some people apparently. Am now waiting to start on another biological, hopefully soon :-).

    I wish you every success if you do decide to go through with taking enbrel .. I was on the twice weekly injection regime for almost 14 years.

    Good luck

    Jackie :-)

  • Wow,Dogwhisperer!

    That's a long time being on the Enbrel, I'm sorry that it got messed up and now you can't take it any more! I hope the new one works as well for you!

  • Gingeq, I've been on Enbrel now for 2 Mos an have talked with others who have been on it longer, no side effects. I was really afraid too! It will be OK, take care,

    valstouch. :)

  • Thanks Valstouch, I'm glad your not having any side effects so far! I guess I really don't have a choice of taking it, I sure don't want to get back to where I was before! I had it worse in my wrist and knees. And getting up and down from sitting in a chair was very painful and hard to do!

    Strange how we for get about the way we were after we get to feeling better and almost back to normal . Good luck to you !!!

  • I have been on Enbrel for 7 yrs with no side effects. The needle is very fine so it goes in easily. It may sting a bit as the stuff goes in but it really is no problem..... find a nice fatty bit of flesh and you probably won't feel a thing. It is wonderful. I am back on my feet and walking two to three miles every day, weather permitting. My consultant told me leaving RD untreated was more harmful to the body than the medication.

    You will have regular blood tests to keep an eye on you.

    Please don't worry any more

    xx

  • Thanks Magglen, I'm glad to hear it's working well for you, and I hope it continue working for you!

    I am a little worried about the injection , but I have got better over the last year with having so many blood tests done!

    I think I can do it, if not I'll have my husband stick me! He would probably love to!!LOL,

  • Please don't worry about doing the injection. The needle is so fine and it isn't a big long thing either! You will be shown how to do it the first time and I expect you will find it much easier than you think As I said before, find a nice fatty bit and you probably won't feel anything. I don't have much spare flesh...only on my tummy really so have to do it there every time. But it is really no problem. Do let us know how it goes! xx

  • I can only echo what the others have said. I have only been on Embrel for a few months, but the difference has been amazing. For a while, I have to stay on Methotrexate, to turbo-boost the Enbrel, but even side effects of that seem to have diminished. Not only do I have much less pain and much more mobility, I have far less fatigue. I too was on Prednisilone; nearly off that now. I was very worried about Enbrel, like you, but had a long chat with the rheumatologist before I started. She couldn't mark promises, butmreassurred me. Good luck.

  • Thanks Jora,

    I'm glad it's working for you and I would love to have less fatigue , that was the one side effect that the MTX was causing for me!

  • I know how you feel about the cancer risk. I was in a similar situation as you a couple of months back. I have a health condition, which could possibly develop into cancer, though I have been told that this is unlikely. It still didn't stop me doing some serious pondering about whether or not I should start taking enbrel. After several weeks of indecision and messing my rheumy team about, I eventually bit the bullet and decided to go for it. No regrets so far, enbrel seems to be working for me, had some improvement just a few days after first injection. The only side effects so far is slight nausea the morning after I inject and that seems to be fading.

    Regarding liver probs with enbrel.. the enbrel nurse told me that it's extremely unlikely to have an adverse effect. My rheumy team said that I would not need to have my bloods done as often as on DMARDs - every 3 months if I was just on enbrel and no other meds.

    As Dogwhisperer says, it's only you can decide if you're willing to take the risks involved.

    Good luck

  • Thanks wishbone!

    I will be just taking the Enbrel alone! So that would be nice to have less blood tests, for I'm one that they have a hard time finding a vein and some times get poked more than once!! I'm glad it's working well for you and hope it continue to!

  • Enbrel was the best drug I ever took, I was on it 8 years with no side effects. It got me out of a wheelchair and walking again. I can understand your anxiety, especially about the side effects but if it gets your life back on track and reduces the pain, it's definitely worth a shot. I wish you all the very best.

  • Thanks Metal-legs,

    You say is was the best drug you were on! I'm guessing your not taking it any more??? Did you have a problem with side effects?

  • I took it for 8 years but had to come off it because it just stopped working. I was really gutted. I had to come off it quite a number of times for knee replacement and hand surgeries. Each time I started the drug again it just never worked the same. I had no side effects at all unlike all the other drugs I have taken. I was amazed how it got my disease under control when i first started it, got me off steroids and strong painkillers.

  • I'VE BEEN TAKING ENBREL FOR TWO MONTHS AND I'M ABLE TO BE MORE ACTIVE NOW. I HAD A LITTLE SWELLING IN MY WRISTS AND HANDS BUT IT WAS GONE IN TWO DAYS.

    I'VE HAD SOME HAIR THINNING BUT I'M ALSO ON LEFLUNAMIDE WHICH ALSO CAN CAUSE HAIR THINNING. I'M GUY SO HAIR THINNING IS NO BIG DEAL TO ME.

    HOPE THIS HELPS AND BEST WISHES.

  • Thanks smokin, I'm glad it's working well for you also, and hope it continues to!

    I had a problem with the MTX while I was on it , I noticed my hair wasn't growing on my legs and under arms. My doctor in creased the amount of folic acid I was tAking and it fixed that! I didn't notice any thinning , but thought that if the hair wasn't growing that it would become thiner over time!!

    I'm not sure what the Enbrel will be like, everyone is different!! Good luck, and thanks!

  • YOU WERE UPSET BECAUSE THE HAIR WASN'T GROWING ON YOUR LEGS?????

  • :)

    L

  • Hi gingeq,

    Enbrel is what is known as a 'Biologic' and we have a publication called Biologics: the story so far... which you can find on our website or we can send you a free copy in the post. nras.org.uk/publications/bi...

    You can also find a specific article on the drug (see the link below) which might help with some of the concerns you have over taking this particular medication.

    nras.org.uk/etanercept-enbrel-

    NRAS also has a number of trained telephone volunteers so if you would like to speak to someone who is on this drug, then we may be able to put you in touch with someone. If this is something you might be interested in, please do give the Helpline team a call on 0800 298 7650 to set the wheels in motion.

    I do hope that this helps.

    Best wishes

    Emma

  • Thanks Emma, I will check it all out!!

  • Ty Emma!

  • If you want to put it in proportion, try finding some up to date statistics on enbrel and other biologics and I think you will find that the risk of solid cancers (tumours) is so little above the general risk that you really can hardly say its increased. The risk of blood borne cancers (like lymphomas) I believe is slightly increased over normal,but still not greatly more than the general risk,and also blood borne cancers don't tend to be ones with inherited tendencies. On the other hand, the risk of serious irreversible effects from steroids or from badly damaged livers is really quite high compared to biologics.

  • Thanks Earthwitch! That makes a lot of sence ! I do need to get off the prednisone , I've been on a 2.5 mg for almost 3 months now waiting for my liver to recover from the MTX and Leflunonide !

    Now I'm waiting on the insurance co to see if they will pay on the Enbrel!

  • Hi Gingeq,

    I took enbrel for around 12-13 years, being one of the first in the uk. I felt exactly as you do.. Very apprehensive and a little afraid of the unknown, particularly at that time, as the side effects and long term implications were in their infancy.

    All I can comment on are my own experiences, I had good success from enbrel :-)

    I would advise you to be very aware of any type of infections (chest etc) and make sure your dr knows you're a Tnf patient as any infection at all means stopping Tnf until it's gone :-)

    They do regular blood tests to keep an eye on you and if you're good at self monitoring without being too paranoid, it can be a life changing medication.

    It's one that you really must weigh up and decide for yourself though :-)

    Good luck and I hope everything goes well for you :-)

    Take care, have a lovely Sunday!

  • I've been on Enbrel for quite some time,and the one side effect i have is some psoriasis on my elbows. The Enbrel has made a huge differance in my life and i'm able to do all the things i was unable to prior to Enbrel.

    good luck

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