Abatacept!

Is anybody out there trying abacept and fairly ancient in body (50+) but young in mind. I am having a rough time on it i.e. heartburn, aching joints and depression. Would love to hear of any other guinea pigs.

[Treesha]

Sorry chubby I'm on MTX just increased to 20mg. But sounds like you need to talk to your rheumy nurse about side effects. Hope you get sorted soon and start feeling better. Take care xxxx

[Judi]

Hi, I'm not on abacept ............. but more ancient in body than you (60+) ! (Hope that cheers you up)

Getting hold of your rheumy nurse would definitely be a good idea, I don't know what the known side effects are for abacept. Hopefully you manage to find another guinea pig.

Judi

[Hidden in reply to Judi]

Thanx Judith,

Moral support is always great fully received. I am just in the first weeks of abatacept and too early to access yet! Hope you are well and thanks again.

Jenni ( aka Chubby )

[Peggyd]

Hi Chubby, I'm on my third month of abacept and I am also more ancient in body than you (70!!). It has helped me so much. I don't have the severe pain like I use to. I now have some aches in wrist and feet usually mid day to evening but not the morning stiffness that I use to have. Hope things improve for you. Peggy

[Hidden in reply to Peggyd]

Peggy,So sorry not to have acknowledged your very welcome rely to my post in April, I have been struggling to keep on abatacept, and have had a bout of nasty depression. I am now having to decide what to do in two weeks, and I am so confused. How have you been, are you still getting benefit from abatacept, I do hope so. It would be great for a 70 year old to compare with a 60 year old experiences on this drug!

[Zeen]

Hi, I have just had a phone call this morning from my hospital to say that funding has just been granted for me to start abatacipt, orencia. I'm interested in all comments about it, good and bad. Hopefully Chubby your symtems will improve soon, and they are just teething problems. Good luck, Zeen.

[Hidden in reply to Zeen]

Zeen,I know it's ages since you replied to my little plea about abatacept, and I have been trying to keep to my consultants wishes, and give abatacept a good go!!!! I am still pretty miserable on it, and don't know what to do. Have you been able to start orencia, and has it been good for you, I do hope so. I would be so glad to hear of your experience.

Best wishes, Chubby.

[Zeen]

Hi Chubby, I have now had my first 3 infusions of orencia. I do not seem to have had any bad side effects, just a slight headache afterwards last time. I do have a lot of indegestion, but had that before starting orencia, don't know if its any worse or not, I take omeprazole for that but it still persists. I tend to put it down to too many tablets. I had to come off anti inflammatries because of it. I also get days when I feel down, but put that down to the whole general condition. As its only just over a month since I started it, its hard to know if its helping, but I think I may be less stiff than before. I also take hydroxy and have mtx inj. 22.5mg. What other meds are you on?

I have managed to speak to a few others on orencia, some it has worked very well for and others not at all. Apparently there are 5 of us now on it in my hospital all in the early stages, so its a case of just waiting to see how it goes. I'm sorry to hear that you are struggling so much. This stupid disease is bad enough on its own without horrible side effects from drugs. How long have you been on it now? I was on rituximab before this, and when it hadn't helped after about 4 mnths, my rheumy doc. suggested this. I have also tried Enbril, which helped for about 6 mnths and then stopped. Its just trial and error the trouble is, it all takes so long and in the meantime our joints are getting more damaged.

I hope you get more sorted soon, it is miserable not feeling well all the time.

Best wishes Zeen x.

[Hidden]

Zeen, thanks so much for your feedback. I too have bad indigestion, which started after starting abatacept, in fact I have to have an endoscopy next week ( absolutely petrified) but they will not let me have NSAIDs again until the results! I have quite a complicated background of replacement joints and joint infections, so I am given these drugs with care, but so far orencia has given me heartburn, backache and painful hands. Previously, I had embril, which I loved, but gave me infection! I have since tried toxillizumab, but it affected my liver , so orencia is probably my last chance, but I think I have decided to stop it. Good luck with your treatment, and thanks again. Jenny (chubby)

[Peggyd]

Hi Chubby, I'm still doing great on the abatacept. I also have depression but I think that is due to the years of so much pain and not able to do things that I have always enjoyed. . I am finally able to get out and around more which is helping me some. I hope you find some relief soon. Just hang in there it just takes time to get on the right medication. Hoping you feel better soon. Peggyd

[Hidden]

Thanks Peggyd,

I'm afraid I think I am going to give up on a abatacept, just too many side effects, I have tried quite a few biological, with embrel my out and out favourite, but unfortunately, I got an infection in my hip replacement, so that was the end of that. I am thinking of going back to my old treatment of NSAIDs, as I don't think my body can take these strong drugs, I ve had ra for 50 years.

So glad to hear you are doing well, it's good to know that these new drugs do work. Take care and try to keep smiling. Jenny(chubby)