I'm so sorry that things are this rough for you at the moment. It must be frustrating, not to mention extremely painful, to be so ill that you have to stay in bed. I'm really grateful for your reply to my post about my hands and I must admit after reading what you're going through my problems seem trifling in comparison and now I'm thanking my lucky starts that things are as good for me as they are. I do hope the neurological issues can be treated and that you can find a suitable RA drug too. You must be such a challenge for the doctors and I really hope the best brains in the business are working on trying to solve and resolve all your health issues. One last thing. I will never ever be bored reading your posts about how you are. You are such a fighter and an inspiration to me. Thanks for your amazing input into this forum, especially finding the time and motivation to help and advise others who have much lesser health problems. Naomi, X

Gosh, I've just read my post back and I sound a right moaning mini!

I'm in bed and yesterday Richard and my carer Kay fed me and helped me with drinks.
But today, my uppy downy bed has come into its own and after a horrible day with oramorph etc I'm holding a cup with a straw.
Sat up in bed without help!

The kids are making ice lollies with an ikea kit and going up the woods for a tramp about this afternoon with the grandparents so Richard can cook tea

I'm trying my best to keep out of hospital

I've had to take extra steroids but that's the deal

The dr I saw on fri explained there were 2 other biologics I haven't tried. One is infliximab. They might be able to rig a test together to see if I'm allergic to it apparently. The other one is golilumab

Tbh, it's the American one we want!

I can't see me being ale to continue the enbrel, which is just such a shame as it definately was helping.

Not sure how long you have to wait for an MRI? We are going away at the end of the month and wonder if I could hAve a big stab of depo before we go.

Hope you are all managing to get away for your hols?
We are off to Devon for a week so hoping the weather improves for then huh?

Hi Jenni

Yes he's supposed to be the best, according my consultant friend - so let's hope he can help. If I need the neurologist again, he's the one I'd see... mine one was useless!!

Sorry to hear things are not so good. Let's hope they can sort something out soon. I've got my daughter here again, still with the joint problems despite the MTX! So we'll see where we go next with her.

lots of love and big hug

Anne xxxx

Oh jenni,
am sorry to read this, can't believe the neuro probs are back! Shame about the enbrel too, although we dont like taking the steroids atleast they do help us, i dont think we are ever gonna get off them are we jen, I have no idea what i would do with out them though! You are so brave trying all these drugs as well as re-trying after all you have been through. It would be really good if they are able to test first instead of waiting to see if if you are allergic to the infliximab, sounds a good plan.

Pleased you have a holiday to look forward to, Devon is such a beautiful place too, hopefully the sun will shine.

Thank you so much for the donation, so kind of you Jen. Will call soon for a catch-up, dont know where the time has gone!

Takecare my friend, big gentle hug to you
Love emilyxxx.

Jenni

Sorry to hear you are so poorly again. You are not being a moaning mini. This is where you vent and share.

I just wanted to say that please consider the Golimuab (Simponi). As you know I have had very bad allergic reactions to Enbrel, Humira and Rituximab and I have not had one single reaction with Simponi and I think it is working. OK I am still in pain every day but it is not the all consuming type. I am getting some quality of life. I don't know what is different about it (too technical for me to work out) but I have held my breath every month when I have injected and not even that hurts.
Combined with Methrotrexate and a three monthly shot of steroids, life is better.

Take care

Jackie
xx