Enbrel dosen't work longer!

kathe

I take enbrel 25mg 2 days a week have been on it since october. Now it don't look like it's working longer, my reuma conciderd either cimzia or simponi.
Have any one out ther tried one of them? And what side effect do you have?
I really struggel whit side effect and don't wont to have more than I have now.
I olso take methotrexate injection,nasid and so.

stickywicket

Hello again kathe. It's good to see you again but I'm sorry about the enbrel. I know you were having difficulties last time you were on here.

I'm fairly sure there are one or two people on here who take cimzia and I believe the other name for simponi is golimumab and some take that too. Unfortunately, it's weekend right now and that tends to be a quiet time on the forum. If you don't get any answers immediately then keep looking.
Whatever you end up taking, I very much hope it works for you.

barbara12

Hi Kathe
I am sorry I cant help, but just wanted to add my support, it must be rotten when this happens.
Hopefully someone will be along very soon to offer some advice
You take care xx

kathe

Thank you for the suport.
Really having a hard time now when te medication not working as well as it did before. Olso strugling whit side effects.
Going to see my reuma doctor at tuesday , lokking forward to that.

barbara12

Hi again Kathe
please let us know how you get on, I for one do worry about people on hear, you try and rest has much as possible.
Will be thinking about you on Tuesday xx

kathe

Thank you.
Of course I'll let you now after I have been to see my reuma doctor .So looking forward too that. One 1 day left!! Tuesday.

duvarayi

Hi Kathe

I don't have knowledge of the different medicines and can't advice you on that.

I just want to give you a big (((()))) and wish you feel better and your medication helps. Hope your Tuesday appointment gives you all the answers you need.

stickywicket

Hi again. Just wishing you all the best for tomorrow, kathe. If you look at Pg 39 of this forum (It might have gone to Pg40 by the time you see this) Firemanphil has a thread called 'Golimumab update'. (I think 'golimumab' and 'simzia' are the same drug.)

Good luck! I shall be thinking of you.

kathe

Thank you...:)
I will have a look at page 40:):)

kathe

Back from the doctor.
Not happy about the doctor apointment to day, but life goes on.
Don't have much time to day , but a quick update.

Having so many side effect ,and have loost so mutch hair because of methotrexate, so had to reduce it more. And going to take 2 tablets of floid acid 6 days a week but not on metx. Day (now I take 1).. But when reducing the dose I have to take predisolon too. Don't like it at all,starting at 7,5mg.
Olso going to switch to cimzia from enbrel, but having to wait 3 weeks. And going to a specialist whit my toa nails , because they ceep falling of. Olso going to have b12 injections every 2 monthes.
:-)

stickywicket

Yes, I can see why that wasn't the best of appointments, kathe. Reducing the meth must seem like a backward step but, if it's causing problems and not even holding the disease at bay, I guess it makes sense.

I'm sure you'd have preferred to be starting sooner on the cimzia but at least the pred should help in the interim. Many of us have a love/hate relationship with pred. It helps so much but is so hard to get off. Hoefully, once the cimzia kicks in, it won't be a problem for you.

I know you are not the sort of person to let all this get you down but it can't be easy right now for you. I do hope the new regime works quickly and well. (())

barbara12

Hi Kathe
That is a mixture of an appointment, sorry I cant help with the meds, but I must say your Rheumy seems to be looking out for you.
Hopefully the injection will help you.
Sending you some hugs to keep you going. (((())) x

kathe

Thank you , so great to have you people in her that understands.
Not a great day, not at all.Not starting cimzia because I 'm going to work four two weeks in the north sea. And when I come home I have to bee of enbrel 1 week before I can start on it. But really hope is working. Because not having a great time now, taking pain meds all day. But have to careful about that too because of may stomach . But prednisoln are going to help, but really hate it, fell like an easy solution. So not happy at all.

duvarayi

Hi kathe

I'm sorry you not feeling good. It is tiring to be in pain all the time and the side effects of the medication we take to add on top makes it worse.

Hope you manage in the north sea. I know you said you love your job so hopefully it will lift your spirits a bit to be in the open sea. So when you come back and start your new treatment which will hopefully work and give you better relief.

I just want to send you big ((((hugs)))).

Babs xxx

kathe

Thank you..
I love my job, thats true... Doing something you love gets the mind of being sick all the time.. That`s so great , there I feel like only me, not sick me. And my coworkers really don`t care about the arthritis and they see me four ho I am and not sick me. I love them so much..

But I it is so hard sometimes, so hard. Because I have a real high activity level and like to get things done.. I haven`t accepted that the arthritis stops me from doing things ( and sometimes it had been a good idea to slow done). .Really don`t think I ever learn that, even when I sometimes cry my self to sleep because I`m in pain..

stickywicket
Reducing methotrexate is a hard choice, but I have had a choice there. To bee in pain or to have the side effects..Not an easy choice not at all, but after all the side effect i have had the last year it is good feel the real pain sometimes.. But now when I`m losing hair my doctor to day decided to reduce it more and to give me prednisolone. To keep my hair, but if I get worse I have to stay on the dose I take now..So time will show...

stickywicket

I hope it goes well for you, kathe. You are a brave lady. Please keep us updated.

dreamdaisy

Hello kathe, I apologise for being late to this but I have been away.

I think it's usual for a person to have a break between anti TNF treatments but that usually means an increase in other supportive meds. I had three months with nothing after enbrel went wrong for me, that was when I began the oral steroids and they made a huge difference - not to the disease but to how I felt. I can understand that reducing the meth and increasing the steroids seems like a backwards step but I think it's a necessary one. You need to get the enbrel clear from your system so that you can begin the next med with a 'clean' body. I have had these switches before and yes, they do demoralise you, pull you down and make you feel very fed up, but that will change. You are a strong woman with great courage (you show that with your job!) and I have no doubt that you will overcome this set-back. We will be here to cheer you on every step of the way. ((())) DD

frogmorton

Hi kathe

Just popping by to say hello. I had missed your posts.

Sorry to hear things are not so good at the moment.

Your work...it's like it's a place where you are kathe, friend and colleague. NOT someone who has arthritis. I am glad you have it and wish you strength to keep going for now .

Love and hugs

Toni xxx

kathe

Thank you..
So great having people thats understands...
It feels like the prednisolon along whit the pain meds is helping me four the pain, but still not sleeping good. But hope that will be better , only been back at prednisoln four 4 days....

Dramdaisy
Are you taking an anti -tnf now??

duvarayi

Kathe

It's good to hear the prednisolone and pain medication are giving you relief. I don't sleep much or well if it's any consolation and can go for up to three days without closing my eyes.

May that medication continue to help and sending you big (((()))

Take care

Babs xxx

stickywicket

Pain relief is a start, kathe. I hope things will continue to improve. I know you didn't want to go down this route but sometimes we need to get into a better situation first before we can do the other things.

kathe

Thank you!!
It was not they I hoped four, but hopes it gets better when I come home and take the new medicine Cimzia. But still over 2 weeks to I can start cimzia. It great that I can trie out somthing new, but I`m a bit scared to because I have had so many side effect from the other medicine I take..:)

stickywicket

I think we all get scared at the prospect of new meds and possibly rightly so. This is a powerful disease and it needs powerful meds to control it and not all of them suit every one of us. Unfortunately, it has to be a process of trial and error. Fortunately, because of all that, we are very well monitored while on them.

Is the pred helping at all in the meantime, kathe? Would it be worth your starting a new thread specifically asking for anyone on cimzia to let you know how they're getting on with it?

kathe

I think the pred i helping a littel bit, but I take more pain meds to now.So not sure if it is the pain meds or the pred. thats helping mee... Now i take 600mg ibux and paracet 500mg x3 a day...So think the pain meds is helping me a littel bit...But still having pain...

stickywicket

In my experience, kathe, there is always pain - it's just a question of how much and how bearable. I do hope the cimzia works well for you.

kathe

Thank you...Thats so true, it is always a question about how mutch pain you are in. But feels like the pain meds and pred. gives me some help , and thats so important ..Specially now when I`m at work...