EMBREL SIDE EFFECTS

colinone

Hi can you help please
I'm on 20mg methotrexate and 50mg Embrel both injections I have been on the MTX for about 3 years but embrel for only six weeks. I have not had a good time with the MTX lots of side effects and constant feeling sick and tummy problems it would last 3 or 4 days a week. dispite the folic acid. Now that i am taking the embrel i feel really ill i just cant shake the sickness feeling and its getting worse week by week. Rheumy nurses want me to keep it up untill my next review in about 8 weeks but i'm climbing the walls, i'm at my wits end. You know what its like when you just dont know witch way to turn or what to do i just feel so ill. The worst thing is the RA and PA are just as bad as they ever were. sorry for moaning but is it me or does anyone else suffer side effects.
Colin

frogmorton

Hi Colin
Sounds awful!
Eight weeks is an awful long time to suffer like this.
I hope someone else is able to come on and say "Iwas like that, but it stopped after ...so many weeks...and now I feel so much better". If they could it would be worth persuing If I were you.
Sorry that person isn't me But you can have my support and sympathy in the meantime.
I genuinely hope you feel better very soon
Toni x

eugeneg

colinone wrote:

Hi can you help please
I'm on 20mg methotrexate and 50mg Embrel both injections I have been on the MTX for about 3 years but embrel for only six weeks. I have not had a good time with the MTX lots of side effects and constant feeling sick and tummy problems it would last 3 or 4 days a week. dispite the folic acid. Now that i am taking the embrel i feel really ill i just cant shake the sickness feeling and its getting worse week by week. Rheumy nurses want me to keep it up untill my next review in about 8 weeks but i'm climbing the walls, i'm at my wits end. You know what its like when you just dont know witch way to turn or what to do i just feel so ill. The worst thing is the RA and PA are just as bad as they ever were. sorry for moaning but is it me or does anyone else suffer side effects.
Colin

Hi Colin,

Sorry to hear of your woes mate. I never got on very well with MXT, but I was never on the jabs, just the tabs, and they did enough for me. As I have said on here before they left me with a 48 hour hangover without having any drink, plus terrible sickness. I then went on Sulpha before that played me up and then I got on Enbrel. The Enbrel has been great for me it really has,aside from the infections this year - My Rheumy is monitoring this. Perhaps the MXT/Enbrel just aren't co-operating? I found it took me 12 weeks before the Enbrel kicked in. Are you on regular blood tests?

I hope things settle down for you. Take care,

Eugene.

dianel

I'm so sorry that you're feeling so ill. I've reacted to both steroids and dmards - badly - and this on top of the disease itself is very hard to cope with.
This is just my opinion, but I just don't see how anything that makes you feel this bad can be doing any good. These drugs are extremely toxic and although they work for lots of people - which I'm obviously very pleased about - for some they just don't and it can be very traumatic. My Rheumatologist tells me that I just have to keep trying different drugs, but having had three bad reactions I am looking down the alternative route. However, that's just my decision. I don't suppose this helps you but you are certainly not alone with the problem. All best wishes Diane.

mash65

dianel wrote:

I'm so sorry that you're feeling so ill. I've reacted to both steroids and dmards - badly - and this on top of the disease itself is very hard to cope with.
This is just my opinion, but I just don't see how anything that makes you feel this bad can be doing any good. These drugs are extremely toxic and although they work for lots of people - which I'm obviously very pleased about - for some they just don't and it can be very traumatic. My Rheumatologist tells me that I just have to keep trying different drugs, but having had three bad reactions I am looking down the alternative route. However, that's just my decision. I don't suppose this helps you but you are certainly not alone with the problem. All best wishes Diane.

have u asked dr for antisickness tabs.i have 2 types 1 i put under my gum if i cant keep meds down,& 1 i swallow. they would help so u can keep trying with your usual medication,i hope things settle down for u.debs

colinone

mash65 wrote:

dianel wrote:

I'm so sorry that you're feeling so ill. I've reacted to both steroids and dmards - badly - and this on top of the disease itself is very hard to cope with.
This is just my opinion, but I just don't see how anything that makes you feel this bad can be doing any good. These drugs are extremely toxic and although they work for lots of people - which I'm obviously very pleased about - for some they just don't and it can be very traumatic. My Rheumatologist tells me that I just have to keep trying different drugs, but having had three bad reactions I am looking down the alternative route. However, that's just my decision. I don't suppose this helps you but you are certainly not alone with the problem. All best wishes Diane.

have u asked dr for antisickness tabs.i have 2 types 1 i put under my gum if i cant keep meds down,& 1 i swallow. they would help so u can keep trying with your usual medication,i hope things settle down for u.debs

Hi guys thanks for the kind words and tips i just cant shake this off i think its the MTX and not the embrel but i just dont Know. GP took me off the embrel whilst doing test hrheumy nurse told me to keep taking it. I do have some anti sickness tabs but only once a day and i only get an hour or so from them. Its not just the sickness. Its that fuzzy head feeling you must all have had, i feel like i have been drugged in some sort of daze or trance, im out when i should feel in lol unable to take things in or concintrate. Do any of you get that feeling. I hate complaining at the hospital i wonder if they just put you dowqn as a moaner please dont say i am. Well at least im still breathing and i am typing. Thanks for being there guys
Colin

feedavison

Hi Colin
I hope you are feeling better?
I have been on Enbrel for a year now and suffer some side effects from it whcih include a lot of sinusitus and labrynthitus. Maybe this is what you're experiencing too? The sinusitus can make me feel like my head is in a bubble and the labrynthitis makes me feel dizzy and sick - i also get quite a few power headaches. My rheumy basically puts it down to a 'trade off'. What joy!
I've recently started ear acupuncture to try and solve some of these issues so fingers crossed!
All the best
Fee

kazpaz

Hello Colin

I have RA and some lupus overlap.

I have been on mtx for years and had some side effects, but I have lived with those because it has made life more comfortable.

I started enbrel 4 weeks ago, a t which point I was as great as I get arthritis-wise. Even after one injection I flared worse than I have been in the past 2 years. I had headache for the first 2 or 3 days every week and although it wasn't very severe, it was constant and didn't respond to painkillers. I also got rash on my face and have had ulcers on my lower lip from week 2, giving me a sense of "trout pout". I agree with one of the other posters, it is a trade-off at the end of the day but I have been advised to stop it today by the rheumatology staff. If I pick up again, then it is the enbrel, it must be.

I know having the lupus overlap is probably the cause and the enbrel itself can cause a lupus-type reaction. This may be nothing to do with your experiences, but I responded only really to say that whatever the professionals say, drugs don't always make us feel better and I wouldn't let them tell you it is good for you if the effect is to worsen the quality of your life.

I'm going to hopefully let the enbrel wash out and feel better. It narrows my treatment options a bit more, but at least I can get on with my life a bit less uncomfortably.

I hope sincerely you find the right answer for you.

Kaz

colinone

colinone wrote:

Hi can you help please
I'm on 20mg methotrexate and 50mg Embrel both injections I have been on the MTX for about 3 years but embrel for only six weeks. I have not had a good time with the MTX lots of side effects and constant feeling sick and tummy problems it would last 3 or 4 days a week. dispite the folic acid. Now that i am taking the embrel i feel really ill i just cant shake the sickness feeling and its getting worse week by week. Rheumy nurses want me to keep it up untill my next review in about 8 weeks but i'm climbing the walls, i'm at my wits end. You know what its like when you just dont know witch way to turn or what to do i just feel so ill. The worst thing is the RA and PA are just as bad as they ever were. sorry for moaning but is it me or does anyone else suffer side effects.
Colin

Hi all just a quick update. Last thursday i phoned my Rheumys Secretary and asked to have my appointmen brought forwar from min Feb as i was having a flair. Sadley i have now missed 3 enbrel injections first was infection in my leg and now a chest infection that i just cant get rid off. I know its a trade off and would be only to glad to suffer the side effects if old arthur felt better. Anyway Rheumy saw me on Monday afternoon 4 days from phone call to appointment told you she was great. The plan stay on the 20mg mxt and 50 enbrel and review in 12 weeks carry on with the pain killers, anti sickness tablets, prednisolone, Amitriptyline, Omeprazole, Celebrex, Folic Acid, Alendronic Acid, Calcichew and the
Fenbid gel no wonder i feel sick LOL oh and she gave me some new tablets to try and reduce the size of the noduels i have springing up all over me due to the MXt she tells me. However they can cause problems with eysight as if i dont have enough problems. Anyway i'm still breathing and hope to go out with the wife Sat night "Burns Night" and i'm going if they have to carry me. no i'm not scottish scouser through and through. Well take care all and thanks for the support and coments. I feel awful about the negative coments on the MXT i call it the drug from hell but for anyone new or reading my post not eveveryone has side effects so dont let me put you off many people are well suited to it and it really works well for them. I dont care what i take now just want a couple of good days feeling better and out of this pain. Take care and thak you
Colin

jimmy77

colinone wrote:

colinone wrote:

Hi can you help please
I'm on 20mg methotrexate and 50mg Embrel both injections I have been on the MTX for about 3 years but embrel for only six weeks. I have not had a good time with the MTX lots of side effects and constant feeling sick and tummy problems it would last 3 or 4 days a week. dispite the folic acid. Now that i am taking the embrel i feel really ill i just cant shake the sickness feeling and its getting worse week by week. Rheumy nurses want me to keep it up untill my next review in about 8 weeks but i'm climbing the walls, i'm at my wits end. You know what its like when you just dont know witch way to turn or what to do i just feel so ill. The worst thing is the RA and PA are just as bad as they ever were. sorry for moaning but is it me or does anyone else suffer side effects.
Colin

Hi all just a quick update. Last thursday i phoned my Rheumys Secretary and asked to have my appointmen brought forwar from min Feb as i was having a flair. Sadley i have now missed 3 enbrel injections first was infection in my leg and now a chest infection that i just cant get rid off. I know its a trade off and would be only to glad to suffer the side effects if old arthur felt better. Anyway Rheumy saw me on Monday afternoon 4 days from phone call to appointment told you she was great. The plan stay on the 20mg mxt and 50 enbrel and review in 12 weeks carry on with the pain killers, anti sickness tablets, prednisolone, Amitriptyline, Omeprazole, Celebrex, Folic Acid, Alendronic Acid, Calcichew and the
Fenbid gel no wonder i feel sick LOL oh and she gave me some new tablets to try and reduce the size of the noduels i have springing up all over me due to the MXt she tells me. However they can cause problems with eysight as if i dont have enough problems. Anyway i'm still breathing and hope to go out with the wife Sat night "Burns Night" and i'm going if they have to carry me. no i'm not scottish scouser through and through. Well take care all and thanks for the support and coments. I feel awful about the negative coments on the MXT i call it the drug from hell but for anyone new or reading my post not eveveryone has side effects so dont let me put you off many people are well suited to it and it really works well for them. I dont care what i take now just want a couple of good days feeling better and out of this pain. Take care and thak you
Colin

Hi Colin,

Sorry your going thru such a spell. I hope things work out soon for you.
jimmy77

magenta

Hello Colin,
I too am sorry to hear you're feeling so bad. I read your reply to airwave-hope you feel better soon
Magenta x

colinone

magenta wrote:

Hello Colin,
I too am sorry to hear you're feeling so bad. I read your reply to airwave-hope you feel better soon
Magenta x

Shucks thank you all i feel like a prat some times and i know my posts seem a bit long its just that when i get going i can't stop Lol
but i'm now smiling. Magenta I get alot of things from this site i was going to say inspiration but dont think i can spell it. I'm not going to name names but some times you think your sick or hard done by and then you read the posts and wonder why your moaning. I'm a little scared at the moment i done a post last night and had to delete it. I'm scared of frightening people who have just developed arthritis. On Monday i told the Rheumy that Mxt was responcible for all the world problems she thought it was funny but i hate that drug and yet some people respond so well to it. At the moment i hurt from head to foot and can't seem to get it under controle. I am having problems with steriods so could not have the depot injection i wanted so much instead i.m taking the prednisolone but it just doesent seem to be doing anything if i up the dose it makes me ill and plays with my mind. At this moment i want the depot and to hell with the side effects. I think if i'm no better by Monday i will phone the Rheumy nurse and ask her can i have it. Anyway there i go prattling on again thank you and take care
Colin

magenta

Hi Colin,
It's good to get things off your chest. You are having it tough just now.
I know what you mean about reading other peoples posts-I moan about sore thumbs etc and then feel stupid when other people, like yourself are having it really bad. I'm finding that every week I'm getting something new to worry about-today it's my elbows that have joined in! I'm only driving my car when it's absolutely necessary but find the more I'm walking the worse my hips and ankles/feet get :? I can't win-anything I try to do to help one of my joints affects another :shock: I need 'rubbed oot and drawn in again'
Get in touch with your rhuemy nurse on Monday and I hope you have a good weekend
Magenta x

jackie1955

For Colin - sent you a private message the other day. hope you received it and are feeling a bit brighter