Hi everyone, hope you are all ok. Havent posted for a while but have been wandering in and out. Ive been on golimumab anti tnf since February and up util a month ago life was great. My va va voom was back and I felt good. For no apparent reason, everything has gone downhill rapidly and I now feel back to square one, just as bad as I felt before the anti tnf. To top it all off Ive also got sciatica and its not only painful in my back, bum and leg its hurt my pocket too!! I went for 4 sessions at the chiropractor with no real improvement.

Im feeling so down and disheartened, having had a glimpse of life with RA on a "lite" basis! and now its back to the drawing board. I try so very hard not to let it get me down, but when life is a long round of painkillers etc etc its very hard. I rang my rheummy anti tnf nurse yesterday and I have an appointment to see her Thursday am which is great. I really dont know where I go from here? I picked that particular drug as it was self injection by eip pen, once a month, Im totally open to suggestions.

So sorry to moan, I know you're the only ones who totally totally understand and thats not to take away from my lovely family. They totally sympathise but unless you've had this crappy disease its very difficult I know.

Sorry again!!

Heather xxxx

Heather

I am sorry to read that you are so down. I am also on golimumab. Could you be just having a nasty flare which could be helped by a quick depo (steroid) injection. You do not say what you blood tests have been like lately. Is your inflammation creeping up or has it suddenly shot up?

I am sure your RA nurse will give you some reassurances on Thursday.

I have been on golimumab since April and I do have good days and bad days. Mine gets worse if I have been particularly busy or stressed. I know it can be very disheartening when you have experienced a good period but don't give up hope. I have also tried Enbrel and Humira before the golimumab and this one is definitely working the best.

Hopefully you will get some answers and more importantly relief from your pain.

Jackie
xx

Hi, thank you for your replies, they really help. Im not normally someone who lets things get her down but Im feeling so sorry for myself at the moment and thats annoying me even more! Im so looking forward to Thursday, I'll do anything and try anything just to feel "normal" again.

I'll keep you posted and thanks again

Heather xxx

Hi Heather

Hope all goes well with your visit on Thursday, like Jackie says, it could just be a flare up and a depo jab might well brings things back under control, lets hope so. Can totally understand why you feel so low, so never so sorry, that is exactly why we are here, as we can all understand why it pulls you down so much, even with in the stronger will in the world.

Look forward to the update, Julia xx

What a bummer! I can totally understand how disheartened you feel about this when it all seemed to be going swimmingly. If it's any encouragement, I have a colleague with RA (had it for 15+ years) and he says that this has happened to him a couple of times where a seemingly successful drug has suddenly failed for no apparent reason. He said his medical team have always managed to find a different drug or different combination that works well for the next few years. Good luck tomorrow. I hope your situation can be resolved quickly. Please let us know how you get on. Naomi, X

Hi all thank you again for the replies. Went to the hospital this morning andhad a long chat with my rhuemmy nurse. She gave me a steroid jab in my bum and Im now taking leflunomide along with all the rest of the drugs. Quite happy with that as pre Anti tnf I took leflu and it worked really well, although it didnt agree with my liver at that time. Im really hoping that it will be ok this time though!

Ive been advised to take next week off work to rest up so hopefully, things will start to improve soon.

thanks again for all your posts, much appreciated.

Heather xxxxxx

So pleased that your appt went well Heather - have a good rest while the meds do their job, and hopefully that'll make you feel loads better.

Jackie - good luck with your jab today - hope it works brilliantly for you, and have a relaxing, restful weekend!

Sylvia xx

That's great Heather - relax and enjoy feeling better - you deserve it!! Please don't overdo things now that you're recovering, just take it steadily and let your body guide you

Sylvia xx