Hi All,
On Thursday I did my 3rd injection of enbrel. It's not as bad as I thought but On wednesday and Thursday I was in pain, both elbows bad, knees bad and my hands were all swollen. It seemed to get a little better after the injection but even today my hands aren't back to what they were after the first injection and my right elbow is bad - got my sexy elbow support on to be able to type this! I haven't been sleeping and I'm wondering if that could be making things worse but basically I'm worried that the Enbrel isn't working just like the remicade didn't (when I was on remicade I got a couple of weeks relief from pain each time but then flared up to the next infusion which is why I switched). The Rheumatology Nurse said I should expect to see results quickly with Enbrel and now I'm panicking... Can anyone give me the benefit of their experience on it?
Thanks! KT
I was told it could take up to 3 months to feel the benifits. It also has a short life meaning it only stays in your system for a short while thus the weekly injections. Are you on MTX also?
For me Enbrel did nothing. I was pulled off of it after 6 months of using it and will be starting Remicade this week. I was not on MTX though as the side effects are just terrible for me so that might of been why the Enbrel didn't work for me.
I hope it kicks in soon for you.
Enbrel with MTX is great for me. It made a huge difference the day after my first shot. I went from barely moving to an hour of cardio in a week. I'm still achy here and there but I am so much better it's hard to complain. Hope you find what works for you soon.
Brenna!! That's my daughter's name. Don't see many around.
Linda
KT,
Are you on anything else beside the Enbrel? As with all RA drugs, they work differently for everyone so it's hard to say for sure what you will get out of it or how soon. I've used Enbrel for over 2 years and although I do feel that it helps tone down the activity of my RA, it certainly doesn't have it under control. I've also read somewhere it could take up to 3 months for it to kick in. It would be nice if we felt relief instantly but some of us just aren't that lucky. Try to be patient with it...I hope it works for you.
Peace & Love...Neasy
Hi KT, i have been on mtx. for 12 weeks now. no improvement. i am taking my 4th shot of enbrel tomorrow, and as you,i havent gotten a bennefit yet. Almost seems like it is making me worse. But i am going to remain hopeful and try to be patient. Dont you have PA? i do as well. Keep me posted and good luck!
kel
Hi All,
Thanks for your encouragement! I am on MTX too - 10mg weekly, I did try increasing it a while ago but it was too much... I also take etoricoxib 120mg daily and painkillers as and when. I think I'm just more anxious about this perhaps not working as we're running out of options after the remicade failed...
Kel - I do have PA, it's being naughty at the moment and moving round, one day something hurts then the next that's a bit better but something else is having a go... I struggle to explain it to the Dr's - they look at my hands and just think they're fat because the swelling is quite subtle. I've got pics on my phone now of my hands on a good day and on bad days to show them! My knees are a good example as one is worse then the other so it's a good comparison... I also have spinal involvement and get annoyed that the pain in my spine is never "counted" when they do the comparison tests - I may only have had 2 swollen and 6 tender small joints at times but my back has always been in agony!
OK, moan over - time for me to go t bed soon - work tomorrow and I need my sleep...
KT
KT, we have alot of the same complaints, I have very bad lower back pain. I am in pain for two days every time i do laundry. And also my hip. the prednisone took most of that pain away right away. but i also have sl;ight noticable swelling in my fingers, mostly in the morning. my pain moves around my body as well. every day its a different joint. I am new to the drugs. and hoping that they begin to work for me. i was wondering what were your side effects when you went to a higher dose of mtx? i just increased mine and am having some shortness of breath.
kel
Hi Kel,
Well - what a week! I had to give in and go to my GP yesterday as I truly feel like someone has filled my limbs with lead. Or like I've been his by a bus. Or someone came in the night and stole all the energy out of me. Dr was very nice and I am now "off sick" for a week but I'd rather not be... I feel totally shocking - pain everywhere, swollen hands, ankles and knees, and a general rubbishy feeling. Dr thinks it's probably just "how things can go" when you start enbrel and I'm going for my 4week review on Tuesday so hoping they take pity on me and give me a steroid shot! WHen I was on 12.5mg MTX I was nauseous most of the time, and felt terrible for three days after I took it. The nausea wasn't controlled by tablets I took so they decided to reduce the dose to 7.5mg then when I wa stable on that to 10mg. Hope you're OK - I'm off back to the sofa, sitting up for a bit to check my emails has wiped me out!
KT
KT, have you tried mtx injection? no nausea at all for me!!! Than maybe you can increase the dose? I still continue on prednisone, trying to decrease it slowely, But i begin to feel as you do right now, so i am hoping to go off it when the enbrel kicks in. (cross my fingers) I am giving myself six months with this combination mtx.and enbrel. If i am not feeling better than i will try something else.I fugure it took me years of feeling so crapy that six months isnt along time to wait to feel better. well thats how i feel today!!! I know waiting for meds to kick in can be sooooo very frustrating. The waiting and wondering and why can't I be one of those people that it worked for right away...UGH!!!!!Kel has a great suggestion on the mtx. I switched from oral to injections at the suggestions of people here and I was able to increase my dose and handle it much better than with the pills.
The not sleeping part has me a little concerned. I just read an article from my AF online magazine about fatigue. Here is the link to the article http://www.arthritis.org/how-to-beat-fatigue-1.php?CampaignI d=E07G2X1MYZZ021031982 Hope that helps you out somewhat.
Hi All,
I am seeing the Rheumatology Nurse in the morning and I will talk to her about increasing the MTX possibly by swtiching to injectable... I am 31 and have had PA for about 3 years that I know of (I could find symptoms further back if I try though). My P has been on my scalp since I was 14ish so I am well used to it! It never goes nywhere but my scalp though! My Mum suggested that I may have a virus that she and several members of my family have had - it has laid them up for over a week each so I suppose it may be that... Hoping that the Nurse will give me a steroid shot tomorrow and that will help me to feel a bit brighter. Grammaskittles - that link is really interesting - it has prompted me to do something about getting a new bed... I have been saying for ages that I could do with one but now I've got an incentive as I think a new mattress will help the sleep issue... I am also going to start going for a walk in the evening as pre-PA I used to do that to help me sleep so maybe I can still do it but just not as far or as fast!
Thank you for your help!
KT
KT, how did your doctor appointment go?
kel
Hi Kel,
I got a steroid injection yesterday, the Dr seems to think it's because when I started the enbrel I still had some remicade in my body and the two together worked brilliantly. Now all the remicade's gone and the enbrel hasn't really got to full speed yet so I'm flaring. On top of that I seem to have got some kind of virus which isn't helping... They took blood to check for any sign of infection and made me an appointment for 6 weeks. If I don't get better I've got to call the Nurse and they'll see me sooner. So now I'm feeling a little better but like I am full of a cold and I can't sleep due to being all stuffed up. I am seeing my GP tomorrow to get another week off work so hopefully that will help. Lots of rest and hot honey and lemon drinks and I should be fine soon!
My wonderful fiance is being brilliant - he's been round to change my bed clothes, do the vacuuming and mow the lawn - I don't know what I'd do without him... Can't wait until he moves in and can do chores all the time
KT
Good for you KT, i rememeber you met your man around the same time i met mine.because we were both worried how our boyfriends would take our disease. I just took my 5th enbrel shot yesterday,still not feeling better
kel
Hi Kel,
It is just after 10pm here, I took my 5th enbrel shot today. Still not sleeping which I think is due to the steroids but I'm going to have a lavender oil bath and then go to bed with a hefty dose of pain killers which I hope will work for most of the night so I don't wake myself up in pain by rolling over. Today I went to my GP who confirmed I've got a virus affecting my upper respiratory tract. He couldn't find any sign of bacterial infection so nothing he can do for me but signed me off work another week. I'm going to persevere with the meds for another week and if I don't shake the virus by then have a 1 week break to allow my body to fight it off. I've stocked up on vitamins and what I call magic honey. Whenever I have a cold or a sore throat I mix manuka honey with lemon juice (fresh squeezed) and hot water and drink it. It's soothing and also very good for you. Manuka honey has brilliant antiseptic properties - they use it in Australia to help wounds to heal cleanly. I also use it when my wisdom teeth are cutting as it helps to stop infections.
Keep on hoping Kel - I believe a positive attitude will get us both through this!
KT
Speaking of colds...did I read somewhere that RA people can't take echinacea??? I used to never get sick but now that I'm on these meds, who knows what'll happen with a weakend immune system.
I hope the enbrel kicks in soon for you both. My RD sais that it can take up to 3 months to realize it's full effects. Hopefully it won't take so long for you.