I am thinking of starting Enbrel but am terrified of the possible side effects? Anyone have any comforting/negative experiences?

[nancy66]

[LavendarLady]

Hi Nancy, go for it. I have been on Enbrel for the last 2 years and have not had any side effects at all. I did when I was on Humira as came out in a rash although the jury (my consultant) is still out on that one but changed me over to be on the safe side.

It does help prevent further damage to your joints as well.

Are you on MTX too? They often go hand in hand.

Mine is delivered by Healthcare at Home and when I first started on it, their nurse came to show me what to do. If you are going to get it from your GP surgery then ask the Practice Nurse to do the first 2 or 3 so you can see what happens and then have a go under her guidance.

Enbrel comes in the form of a Medipen so it is very simple, you just place it on your tummy (or thigh or upper arm), press the plunger, there is a click, count to 10, another clic and that's it. Finished.

You will also need a sharps box for the used syringe which should be supplied with the drugs and you can get it replaced when it is getting full.

Good luck. LavendarLady x

[julie49 in reply to LavendarLady]

hi lavender lady,I too am on embrel injections,and get them from health care at home,and its been the best thing ive ever taken,got no faults with it at all,its marvellous,i also take hydrocloxaquinine,tramadol,amytriptyline,omeprazole,and the usual ones thats for ra......x

[Hidden]

hello nancy, just to echo what LL says, I have been on Enbrel for 18 weeks now and have had no side effects whatsoever, my consultant hopes that I'll be able to reduce my mtx soon as it's working so well for me, I've gone from, well I don;t need to tell you, the pain stiffness ect, but now I'm back to work, walking cycling and have even started going to the gym!!! I'm very lucky as I was only diagnosed in Feb this year and have it under control now, I would say I was 80% better.

It is scary though, but I knew I didn't have much choice, if I wanted to get better so I know this may be wrong but I chose not to read through the possible side effects....

I'm so glad of enbrel and whats it's done for me, good luck and I really hope things work out for you

ps let us know what you decide x

[nancy66 in reply to Hidden]

i got ra about 7wks after the birth of my child 20 yrs ago as well

[Marnie87]

Hi nancy!

Unfortunatly I was 7 weeks into my enbrel treatment when I blew up like a little action man doll and had huge hard arms, legs etc lovely boob job though if you don't laugh about these things who will ay??

I had a bad experience but all I can say is go for it! It could work wonders for you and I hope it does.

Good luck

X

[nancy66]

thank you all for your responses, it helps to know how other people made out on it. So glad it worked well for most of you and you are feeling better. It is a struggle to find something you don't feel sick on, i hate that feeling

I am only taking advil so i need to do something. I will keep you posted.

thank you, nancy

[CathySmith in reply to nancy66]

Me too Nancy, I was on Arava & Mobic but made my hair come out and hurt my tummy so all I take now is Advil..I am so scared of the side effects of the Biologics. they want me to take Humira and I am so scared????So IDK?????Hope you get to feeling better..take care,,,,,,,Cathy

[nancy66 in reply to CathySmith]

I understand how you feel, we are on the same page:). But i won't more from life so i know i have to take a risk also, just need to get my nerve up

thank you for all your encouragement

nancy

[muffin]

Nancy,

I have never looked back since I started Enbrel 6 years ago. I don't like methatraxate and it doesn't like me so I just have the Enbrel and hydroxi, plus pain relieft for fibromyalgia. The only side effect I have had is during the last year or so, the day after I have injected, I find a spot. It can be anywhere on my body, but usually on my tummy or unfortunately my face. It doesn't always happen and goes away quickly. Don't know why it happens but it does.

Enbrel is an absolute life saver for me, it has taken me from being in a wheelchair to walking around normally.

Go for it!

Muffin.

[CathySmith in reply to muffin]

Wow really?Thats amazing..They want to start me on Humira, I am so scared to take it

[nancy66 in reply to muffin]

are you back to exercising and how far do you walk? i can only walk .5 mile, and i am sore, stiff and pooped

nancy

[LavendarLady in reply to nancy66]

Nancy you can walk 5 miles? Good for you. I can't manage more than 50 yards on my own or a bit more if with someone.

Until I was on anti tnf, a wheelchair was my mode of transport. Don't use one regularly now only when travelling, particularly in airports as can't walk the distance or stand for hours in the security Q. Lavendarlady x

[nancy66 in reply to LavendarLady]

only .5 (1/2) mile, my friend w/ra walks 5 miles/day though ! i just seemed to loose my ability to walk due to weaknes in muscles overnight. i woke up and couldn't do it anymore

[nancy66]

OMG..that is so amazing muffin !!!!! Yes, i am seriously considering it !! thanks for the encouragement and info, it helps so much.

nancy

[Charlie36]

On enbrel for over a year and had no problems at all even though I have a long list of allergies ie. antibiotics, chemicals etc. Self injected twice weekly, took supplies abroad with me when travelling (in a specialised cool bag with a letter from the GP). Very good results for me and terribly disappointed when it was no longer considered compatable with another health issue. I am now quite poorly and due to start on an infusion of rituximab on 22nd. which I so hope works as life has become very difficult to put it mildly! Best of luck, for me enbrel gave a huge improvement and hope it will for you too should you go down that route.

Charlie

[nancy66 in reply to Charlie36]

how did it change your life? i have alot of weakness and sore flexions of joints due to RA and i am hoping i will get some of that back. It also affects my muscles, stiff, sore and weak, can't walk far Wondering if enbrel will help with this

thanks, nancy

[Hidden]

just been catching up on your question on enbrel, (I posted a reply also) but to cut a long story short and if you want, click on my name, and read my last blog called 'a very positive bog' this will save me telling you what it has done for me.

I wanted to add also that I have recently joined curves gym, if someone told me that I'd be going to the gym this year I would have laughed my head off!! but like you I felt muscles very weak and sore, I have been 6 times now and I can't believe how much better I feel, it's was really hard for me to go the first time but when I got there I couldn't believe how supportive the instructors were (all women) and I could see there were others using the gym who have health issues of their own so I didn't feel out of place whatsoever. If you google 'curves' and have a look at the website there is also a case study on someone diagnosed with RA and fybromyalgia...

I've taken it very slow, one machine in particular I couldn't use because of my painful knees at the start but I tried it a little at a time and ther instructor couldn't believe the difference already as I am able to use it now albiet slowly, it's done in circuits of 30 secs so you don't get time to get over tired working on one area. It is expensive at an initial payment of £66 followed by a monthly £29, they also measure and weight you monthly and give you diet advice, I have heard but yet to ask that there is a discounted rate if your doctor reccomends that this would help.....

sorry, didn't mean to go on so much! but on a funny note, I was watching tv last night, felt my 'bottom' and thought ''oh my gosh, another swelling, where did that come from, flippin eck!!!!'' my poor husband had a feel and told me it was a muscle! and yes, it was there on the other cheek, a MUSCLE ON MY BUM

never even had that pre RA....

[nancy66 in reply to Hidden]

haha..good for you !!!! i will go read your blog, thank you , nancy

[Andrea_Shapiro]

Just be grateful you're not on methotrexate! I'm still losing my hair!

[nancy66 in reply to Andrea_Shapiro]

i did metho for 10 yrs until it finally poisoned me, so i know what you mean good luck !

[juliep66 in reply to Andrea_Shapiro]

I lost mine too but now on embrel problem is the hair regrowth is curly and ontop is straight .... we are never happy lol

[shellys]

im also on methotrexate since march this year if i was going to loose my hair would i have lost it by now x

[2plus2]

Hi Shelley I started on mtx in march and my hair started falling out after about three months and it still is. Reduced the dose in July then stopped it completely and added sulphasalazine reacted to this so have not been on anything for the last two months I'm now about to start enbrel. So hopefully your hair is safe.