Infusion done!

[Crazyjo]

Tocilizumab infusion done. Need to have lung function for my chest and for the ulcers I need to up my dose of folic acid. Give it couple days and see how the pain goes, if no better I be back on the phone for some more steroids

[hatshepsut]

Brilliant! Hope it works out for you! M x

[Crazyjo in reply to hatshepsut]

Thanks, I am trying to be positive but as this is my 5th one I not holding out much hope

[allanah]

Fabulous sweetie, well done and now rest and let it work !!! And do call them if u continue with the pain , have a good sleep xxxx

[Crazyjo in reply to allanah]

Feeling rough this morning, hope it wears off soon x

[Titchyj]

Well done, hope it works for you and you get some good results.

Jan

[Crazyjo in reply to Titchyj]

Hope so, this the 5th try so not holding my breathe that I won't need more steroids

[Jeanabelle60 in reply to Crazyjo]

Just to let you know......while on bio's I wasn't allowed steroids. The rheumy nurse said it was because it gave them a false picture of what was going on with the bio's. Might be different in other places but just a bit of info. Hope all goes well for you. XX

[Crazyjo in reply to Jeanabelle60]

I had a steroid infusion 10 days ago but didn't help as much as should, so they know I might need another one, they don't seem to have a problem where I am letting you have both

[Jeanabelle60 in reply to Crazyjo]

That's grand.....hope you have a good response....X.

[harryhunt]

If the Toc works for you like it does me your RA will be history so the progressive damage due to inflammation will end, but you will still probably suffer aches and pains. I do but it's no big deal now. Occasional painkillers and pace myself. getting old. My CRP and ESR has been 1&2 (lowest possible unless dead) for 9 months in a row and in remission. Hey! maybe I am dead.

[Crazyjo in reply to harryhunt]

Hi this was my 5th infusion of toc, although my bloods are good I have been in awful pain with my legs for last couple weeks. Have my rescore in two weeks as don't think the toc is working for me.

Glad to hear your doing well

Jo

[julie_warwick]

fingers crossed for success for you x

[Crazyjo in reply to julie_warwick]

Thanks

[allanah]

Hang on in there Jo, unless you feel like it's a reaction. I often felt tired and worn out the next day and planned a rest day. Also I know this sounds daft but you were so excited for it to get to Wednesday maybe it's just all the stress, drug, day out all getting to you at once. Rest up and ring for device if your not happy xxxxxxx

[Crazyjo in reply to allanah]

Yea I know what you mean. I having a restful day today so will see how I go x

[Hidden]

Crazyjo, I hope it works for you. It sounds like resting would be the best thing for you. Let it work as your folic acid levels rise.

I hope it work for you. They and think good thoughts that it will work. I wish you the best!!

[Ee70s]

Good luck Crazyjo,ive been on Tocilizumba for 18months now and i have to say im wiling to give anything a try,i m all for be possitive,so i hope it works for you.Chin up and smile x

[Hidden]

How long have you had RA? Are the ulcers caused by the meds? When do you get the lung function test? I hope you don't have to wait to long. Any signs that the infusion is starting to work?

Just thinking about you with all positive thoughts!

[Crazyjo in reply to Hidden]

Had RA since 2010, think the methotrexate is causing my ulcers so have upped folic acid to hopefully combat that. Did think the infusion was starting to work but last 3-4 weeks have had a terrible flare which just won't ease off, looks like be trying another steroid infusion this week x

[Hidden]

So sorry! When I get a flareup the only thing that I can do is take pain pills. Then going to high dose of prednisone. Usually that takes care of it. Maybe yours is just harder to treat than mine you have had a longer than I have.

I also use ice packs I have one for each foot and each hand any extra one for any other body part that hurts.

The steroid infusion sounds good to me. Have you had been before? If so did it work well for you?

[Crazyjo in reply to Hidden]

Had one just over 2 weeks ago, it helped some of my joints just not my hands and legs, so hoping the 2nd one will help there

[Hidden]

Crazyjo, I do hope it works. It seems like it should because you had one 2 weeks ago. That's not so long.

I hope to hear about it. So I hope you post!

A gentle hug is sent to you!