etanercept

wynnie

hi there just got into this and im hoping for some helpful advice before i try etanercept,ive been reading lots today and im not sure, this is the second time ive been advised to go on it and im still undecided, any advice would be welcome hospital waiting for the nod from me too proceed.other name for this is enbrel and its an anti tnf

gickygawky

Hi Wynnie!

Just thought I would drop a quick line to say try not to worry too much about the side effects etc and go for it! It was the best choice I ever made and it has improved my health dramatically!!

It was a big decision for me to go on it and I certainly had my reservations as I am sure you do but it has been a much smoother ride than I anticipated. Being an immunosuppressant it has come with a variety of 'hiccups' that needed to be dealt with such as mouth ulcers, not healing from cuts well, catching colds/flu more easily etc but if you are careful and create a plan of attack to deal with such things you should get along with it okay.

I am very careful about catching bugs from other people, carry antiseptic gel for my hands wherever I go and bandaids for covering sore bits quickly. I use mouthwash frequently and am generally more cautious than I used to be.

The idea of injecting was a big thing to deal with too but it now comes easily and I just think about the good it does me each time. It is a bit of a sting but nothing in comparisoon to the arthritis and you get used to it.

Etanercept took all of the 12weeks to start to take effect with me but once it did it allowed me to function as a human being again and the pain I now experience has dropped ten fold.

I hope you find this of some help. I would be happy to answer any questions you may have in a pm.

Good luck with making your decision Wynnie and I wish you well

Arna x

dreamdaisy

Hi. I too have been on Enbrel and it did nothing for me. That's the problem we face - trying again and again to find the right combo of meds. Like all the anti TNFs you do have to be much more aware of infection etc. Skin does take longer to heal, no doubt, and though I didn't have mouth ulcers I did have other problems. If you have the chance to try it, take it. These are expensive drugs and rationed in my area. If you go on it, be conscientious about the blood tests. That's what saved me. I don't want to put you off - the benefit may well be there for you and you will never know unless you try. Good luck, keep us informed. Dreamdaisy

wynnie

dreamdaisy wrote:

Hi. I too have been on Enbrel and it did nothing for me. That's the problem we face - trying again and again to find the right combo of meds. Like all the anti TNFs you do have to be much more aware of infection etc. Skin does take longer to heal, no doubt, and though I didn't have mouth ulcers I did have other problems. If you have the chance to try it, take it. These are expensive drugs and rationed in my area. If you go on it, be conscientious about the blood tests. That's what saved me. I don't want to put you off - the benefit may well be there for you and you will never know unless you try. Good luck, keep us informed. Dreamdaisy

thanks dreamdaisy for your reply,i have been giving this loads of thought and i think im going to stick with sulfasalazine anti inflams and pain killers for another few years ,just until my daughter gets her degree and my grandaughter goes to school ,no doubt i will get it tight from rheumatologist but i cant take any chances of being physically ill ,its a big gamble with my inner health if you know what i mean,i can suffer the pain(sometimes) but i couldnt help out my family if i keep getting infections,not saying i would but feel i cant chance it do you think im mental

skezier

Hi Wynnie,

I have only been on sulfa and mtx so can't help you but there are a lot of people who have found it a very good drug but sadly as the others have said it is all trial and error to find one that works for you. Good luck and well what I really dropped in for was to say hi and nice to meet you. Take care Cris

wynnie

skezier wrote:

Hi Wynnie,

I have only been on sulfa and mtx so can't help you but there are a lot of people who have found it a very good drug but sadly as the others have said it is all trial and error to find one that works for you. Good luck and well what I really dropped in for was to say hi and nice to meet you. Take care Cris

thanks chris,im the same as yourself i tried mtx and i felt that i had constant flu also tried hydroxychloricane dont know if thats the correct spelling but that made me have blurred vision ,steroid injections are no good and things are constantly getting worse but im thinkin i will give it a miss for now ,nice to be part of this now sharing with folks who do know what its like wynnie

dreamdaisy

Oh. I feel awful. I didn't mean to put you off to that extent. You have your life to lead and enbrel may make the difference. These meds are problematical, anything can happen. I've been reading stuff from people who are taking what I'm on, and my results are nothing like theirs! They're gardening, laying concrete drives, riding bikes, going for walks in the country etc etc. I'm not. I'm still on crutches, still in pain - the only difference to me is that my knees are not the size of watermelons and the temperature of a Borneo jungle. Stop putting others first: it's your turn, and if it works, you'll be fitter and stronger for them. I am so sorry. Please forgive me. Dreamdaisy.

skezier

Hi Wynnie,

Oh flower its a bit like a mine field :roll: they start you on something, if your lucky it works and if your not they change it...... Hey I cam to the conclusion long ago anything is worth a try.......... Mind I was keen for mtx cus I had such a bad reaction to the sulfa and had a cold for 9 months that actually wasn't it was part of the reaction. Saying that my bones did improve a bit but i can't tell you how much I hope mtx is the one that really works You look after your self and the one I do honestly believe is in time it all gets better and far less scary......... I kinda hope that never changes Nice to meet you and leaving you a ((( ))) and a hope. Cris x

Dreandaisy I am sorry it didn't work for you and really hope they can find something that does and you get some improvement and less pain.

wynnie

dreamdaisy wrote:

Oh. I feel awful. I didn't mean to put you off to that extent. You have your life to lead and enbrel may make the difference. These meds are problematical, anything can happen. I've been reading stuff from people who are taking what I'm on, and my results are nothing like theirs! They're gardening, laying concrete drives, riding bikes, going for walks in the country etc etc. I'm not. I'm still on crutches, still in pain - the only difference to me is that my knees are not the size of watermelons and the temperature of a Borneo jungle. Stop putting others first: it's your turn, and if it works, you'll be fitter and stronger for them. I am so sorry. Please forgive me. Dreamdaisy.

sorry your in so much pain also dreamdaisy,you havent put me off really,and the two most important people in my life at the moment are my daughter and grandchild ,and silly though it might seem to others i dont feel im putting them before myself ,this is the only chance my daughter has of doing her degree and lauryn is probably the only granchild i will have,my son has bad epilepsy so he doesnt want any children ,and at the minute i feel they must come first,i dont want to chance it going pear shaped with any side effects ,im upping the sulfasalazine and ive got meloxicam for inflammation and tylex or amtriptyline for sleep if needed,my knees have been playing up bad its a nightmare going to the loo,how do you manage?im not bad walking but stairs and sitting to standing is the killer.
i dont think my daughter would let me away with this if she knew ,and if i ended up hospitalised etc there would be no question about it i would have to take these drugs,so dont even think for a minute you put me off i think secretly i had already made my mind up before i left the hospital you take care of they knees wynnie

wynnie

skezier wrote:

Hi Wynnie,

Oh flower its a bit like a mine field :roll: they start you on something, if your lucky it works and if your not they change it...... Hey I cam to the conclusion long ago anything is worth a try.......... Mind I was keen for mtx cus I had such a bad reaction to the sulfa and had a cold for 9 months that actually wasn't it was part of the reaction. Saying that my bones did improve a bit but i can't tell you how much I hope mtx is the one that really works You look after your self and the one I do honestly believe is in time it all gets better and far less scary......... I kinda hope that never changes Nice to meet you and leaving you a ((( ))) and a hope. Cris x

Dreandaisy I am sorry it didn't work for you and really hope they can find something that does and you get some improvement and less pain.

im lucky so far ive only had headaches and tiredness with sulfa ,hated mtx ,but hope it works well for you ,anything to cheer up the old bones as they say take care wynnie x

skezier

Hi Wynnie,

Hey fingers crossed it really does the job for you and keep in touch with this lot cus they are a good lot A ((( ))) and a shed load of hope. Cris x

dreamdaisy

Keep on top of your bloods like me and you won't end up hospitalised, I promise. I have psoriatic arthritis and it's in my toes, feet, ankles, knees, sacro-iliac joints, shoulders, hands, neck and jaw. Not in my hips or spine tho, thank goodness! Sulphasalazine only keeps the psoriasis at bay for me, does nothing for the arthritis side of things. It has never eased the swelling or reduced the pain. I can do stairs, but like a three year old. Can't walk now without my stabilisers (crutches). I'm looking forward to getting my electric buggy! I give it two or three years for that. We are having to move 'cos I can no longer do stairs with any degree of safety. We live in a three storeyed Victorian mid-terrace which I used to love. I loathe it now. Stairs too narrow and steep for a stairlift. Apologies for the abbreviated writing style - had a fall earlier, quite shaken, using the forum to take my mind off it! Dreamdaisy

wynnie

dreamdaisy wrote:

Keep on top of your bloods like me and you won't end up hospitalised, I promise. I have psoriatic arthritis and it's in my toes, feet, ankles, knees, sacro-iliac joints, shoulders, hands, neck and jaw. Not in my hips or spine tho, thank goodness! Sulphasalazine only keeps the psoriasis at bay for me, does nothing for the arthritis side of things. It has never eased the swelling or reduced the pain. I can do stairs, but like a three year old. Can't walk now without my stabilisers (crutches). I'm looking forward to getting my electric buggy! I give it two or three years for that. We are having to move 'cos I can no longer do stairs with any degree of safety. We live in a three storeyed Victorian mid-terrace which I used to love. I loathe it now. Stairs too narrow and steep for a stairlift. Apologies for the abbreviated writing style - had a fall earlier, quite shaken, using the forum to take my mind off it! Dreamdaisy

hi there hope you are feeling better after your fall,thankfully im not as bad as you seem to be ,no doubt i will get there ,its just ra i have ,i say that as if its nothing but thankfully as yet i dont have additional probs except neuromas on both feet ,ive had one operated on and have decided not to have other foot done as the one i had cut out is back,ive had wrist done as well for ra thankfully that seems okay now,
i had to move house as well so i have bathroom on both floors ,hope you dont loose out due to credit crunch i did but wasnt caring im a lot happier in this house but i think i would eventually get a smaller house in later life as its a big garden and big house to keep,costs a fortune to heat,so i will also move again maybe a wee bungalow,or wishfull thinking would be a wee cottage by a loch.
anyway hope this finds you okay today wynniex

dreamdaisy

Hi Wynnie, I forgot to answer your loo question. I was given a raised toilet seat/frame effort, I think I contacted social services 'cos I was having so many problems. It's either called the Melton, or the Mowbray - I know it was something to do with pork pies! It's invaluable, but a bit of a pain to keep shifting so that ordinary people can use the lavatory. They are not special, like what I am.

Still shaky after the tumble. Luckily I was on the ground floor but it took some time to maneouvre to the stairs. My knees do not bend sufficiently to enable rising from the floor with any degree of elegance! Hell, I lost elegance years ago. You can't be elegant on crutches. Have a wonderful Wednesday. Dreamdaisy

tillytop

Hi Wynnie - I don't know if this will help... I have not taken Enbrel but do know from experience that these drugs work (or sometimes don't work) differently for everyone. For example I was chatting at hospital the other day to 2 other people about Humira (another anti-tnf drug). All 3 of us were different ages and at different stages with RA. One lady had started Humira 9 years ago as part of a clinical trial and it had worked wonders for her. One man had found that it was no help at all and I found that Humira did work for me, but I had to stop (after 3 years) due to an allergic reaction. So there really does not seem to be any rhyme or reason. I know that it's a hard decision to make and, when you are already unwell, you don't want to do anything which might make you worse. I really hope that whatever you decide works out for you. Tilly X

tillytop

dreamdaisy wrote:

Keep on top of your bloods like me and you won't end up hospitalised, I promise. I have psoriatic arthritis and it's in my toes, feet, ankles, knees, sacro-iliac joints, shoulders, hands, neck and jaw. Not in my hips or spine tho, thank goodness! Sulphasalazine only keeps the psoriasis at bay for me, does nothing for the arthritis side of things. It has never eased the swelling or reduced the pain. I can do stairs, but like a three year old. Can't walk now without my stabilisers (crutches). I'm looking forward to getting my electric buggy! I give it two or three years for that. We are having to move 'cos I can no longer do stairs with any degree of safety. We live in a three storeyed Victorian mid-terrace which I used to love. I loathe it now. Stairs too narrow and steep for a stairlift. Apologies for the abbreviated writing style - had a fall earlier, quite shaken, using the forum to take my mind off it! Dreamdaisy

Hello Dreamdaisy - sorry to hear bout your fall. Hope you are ok? Love tilly X

dreamdaisy

Hi Tillytop, how thoughtful of you. Yes, I'm feeling better now but still having a rough time. My last humira was faulty, i think. Now at the stage where I can't walk, but hey, don't need to to post here! I hope you're ok and having a Wonderful Wednesday. Dreamdaisy

wynnie

tillytop wrote:

Hi Wynnie - I don't know if this will help... I have not taken Enbrel but do know from experience that these drugs work (or sometimes don't work) differently for everyone. For example I was chatting at hospital the other day to 2 other people about Humira (another anti-tnf drug). All 3 of us were different ages and at different stages with RA. One lady had started Humira 9 years ago as part of a clinical trial and it had worked wonders for her. One man had found that it was no help at all and I found that Humira did work for me, but I had to stop (after 3 years) due to an allergic reaction. So there really does not seem to be any rhyme or reason. I know that it's a hard decision to make and, when you are already unwell, you don't want to do anything which might make you worse. I really hope that whatever you decide works out for you. Tilly X

hi tilly,thanks for message and opinions ,i have decided not to go on it for now as i cant chance being physically unwell ,ie infection as i watch my 3yr old grandaughter just now while my daughter is at university,i will soldier on with anti inflams and sulfasalazine,with the odd pain killers thrown in just to really upset my stomach!!!!!!,i agree with what you say about not wanting to make things worse ,i can cope with what i have for now so i dont want any added complications ,im sure when i get to the stage i cant suffer it anymore i will take something ,hopefully it wont happen till grandaughters at school and daughter has done her degree,keep well wynniex

tillytop

Hi again Wynnie - hopefully you feel a bit better now you have made a definite decision - and you know there are other options out there if you need them. Tilly x

tillytop

dreamdaisy wrote:

Hi Tillytop, how thoughtful of you. Yes, I'm feeling better now but still having a rough time. My last humira was faulty, i think. Now at the stage where I can't walk, but hey, don't need to to post here! I hope you're ok and having a Wonderful Wednesday. Dreamdaisy

Hi Dreamdaisy - I am sooo sorry you are having such a rough time. Hearing how you and others here are struggling, makes me realise how lucky I am to have had about 8 years relief with the Infliximab and the Humira. I am still doing well at the moment - arther hasn't realised I've stopped the Humira yet so I'm makiing the most of it while it lasts! Thinking of you. Tilly x

dreamdaisy

Hi Tillytop. I have fond memories of infliximab. It was my first antiTNF. Walked into hospital on crutches, walked out four hours later with none. That didn't last long tho! Had four infusions and the &^(%^ stopped working. Break, then tried Enbrel. After a few months my liver nearly exploded! Break, then cyclosporin (rubbish, turned into a werewolf I got so hairy), break, can't remember what happened then, then started Humira in July last year. Best to date, tho still in constant pain, still walk with stabilisers, but no inflammation and no heat in the joints. Can't have everything I 'spose. Hope you're having a Wonderful Wednesday. Dreamdaisy

tillytop

Hi again Dreamdaisy. I too have fond memories of Infliximab - it worked straight away for me too! I was luckier than you though because I had it for five years before a sudden allergic reaction while I was havinig an infusion. There I was, terrified of what was happening and the nurse said to me "that's it then, no more Infliximab" and I thought my world had come to an end. Luckily I was able to go straight onto Humira (well, once all the faffing around with paperwork was finished) and it worked well for you until problems with allergic reaction - not as good for me as Infliximab though. Like you I have previously been on the drugs merrygoround - finding something that works (ish) only to find the side effects are unmanageable or it/they stopped working. It really is a "£$"£$"£$"£$"!!!! isn't it. So sorry that the Humira is not workiing so well for you at the moment. Is it this week you get to have another go or do you have to wait another week, even though it doesn't seem to have worked properly? Really hope you start to feel better soon cos I can see from your posts that you are having a dreadfull time at the moment. Tillytop x

dreamdaisy

Hello. I went to the hospital today for my meth stabbing and they told me to hold off until next Tuesday for the humira. That's fine for them as they wander about with no aches and pains - grrrrrrrrrrrrrr. I shouldn't moan about the staff 'cos generally they are pretty good. They have a few patients who are on weekly humira and I thought I could join that gang for a week, but no.

My blood boiled yesterday when I read in the paper that heroin should be given to addicts on the NHS. People choose addiction, as far as I'm concerned. I didn't choose to have arthritis - that choice was made by my parents and their crappy genes. I wonder how much of 'do your humira next week' was based on expense? These are expensive drugs and I'm on my third type of anti TNF. Change of topic - do you like my daisy? Rehab44 told me what to do! Dreamdaisy

bevman

wynnie wrote:

hi there just got into this and im hoping for some helpful advice before i try etanercept,ive been reading lots today and im not sure, this is the second time ive been advised to go on it and im still undecided, any advice would be welcome hospital waiting for the nod from me too proceed.other name for this is enbrel and its an anti tnf

Hi Wynnie i have been on enbrel for over twelve months i was put on it after i was taken into hospital with a really bad flare up of my RA they could not controll the RA i was also on sulph,mtx,predesalone and a number of pain killers.
i had read about embrel and maybe i was expecting it to be a miricle cure i think it has helped but not as good as i thought it would i am still on the enbrel and also mtx injections although this has caused me to have some problems with my liver.
like people have already said what works for one person might not work for another but i was put on it because it was the safest one for me because i have kidney problems .
hope this helps but at the end of the day it is your decision and what you feel is best for you.

take care laurence

wynnie

dreamdaisy wrote:

Hi Wynnie, I forgot to answer your loo question. I was given a raised toilet seat/frame effort, I think I contacted social services 'cos I was having so many problems. It's either called the Melton, or the Mowbray - I know it was something to do with pork pies! It's invaluable, but a bit of a pain to keep shifting so that ordinary people can use the lavatory. They are not special, like what I am.

Still shaky after the tumble. Luckily I was on the ground floor but it took some time to maneouvre to the stairs. My knees do not bend sufficiently to enable rising from the floor with any degree of elegance! Hell, I lost elegance years ago. You can't be elegant on crutches. Have a wonderful Wednesday. Dreamdaisy

thanks for that info,its a major problem going to the loo with sore knees,sometimes i wish i was a man!!!!!!!!,i will keep that pie!!!!!thing in mind for next bad flare up,i aint elegant anymore either and my lovely shoe days are long gone and that was my fettish, shoes and watches,i went to the ugly shoe clinic and got shoes i said (do you think everybody who needs these are ancient) i wish someone would do a nice range for us arthritis sufferers ,i cant believe they cant do trendy trainer like shoes ,all i got offered was things like safety shoes and they were the nicest in the catalogue ,now i just get the insoles and wear my own trainers ,doesnt help when you have a function to go to does it,nothing like a wee whinge to cheer you up is there??,anyway thanks for that info as i was sitting on the loo for ages just trying to get the final push to get through the pain barrier when straightening up,my wee grandaughter must think im weird as she cant see any sore bits and she will be wondering what im at,anyway keep well x

wynnie

tillytop wrote:

Hi again Wynnie - hopefully you feel a bit better now you have made a definite decision - and you know there are other options out there if you need them. Tilly x

hi there ,yes i do feel better now ive decided mind you i think really i had made my mind up when it was offered ,but i had to go through the motions .
,makes me feel like i did give it a bit consideration, wynniex