Hello All,

Well I had my follow up RA nurse appointment today after my RTX. Well, my nurse said
I was a month too early actually as the drug could still work. So had bloods taken and
x rays for feet and hands and had my DSA done. So wait and see.

I personally don't feel any improvement, and in addition I have had more sharp pains all
over my body and this pain in my right neck and ear, and have started getting a numbness
down left side and it likea pins needle type feeling/cramp (this has been mentioned on
another post)

Feel slightly frustrated now as told I have to wait till first wk in May and then decide how
things are and next step. Perhaps my bloods willbe favourable.

Lynn how you doing ? Missed you on this forum of late. Has RTX made a difference to you ?

Have you had any of these symptoms ? I hope not and that it is doing the 'deed' for you



Rose

hi Rose,

so sorry to hear there's no improvement yet, but hope your bloods show that it is doing something.

i've always followed your progress ever since i joined the forum, and i really wish that you get some improvement soon,

i can imagine just how frustrated you are feeling but don't give up yet as you said you went a month too soon,

keep us updated,

Suzanne x

Hi Rose

Sorry you are not having any respite from the pain yet. I don't know anything about rtx but I hope that the reason you are not feeling better is that you haven't given it enough time. Try to be positive. Love and prayers are with you as always.

Sheila x

Thank you Sheila and Doreen for your good wishes.

Rose

Sorry things are not going well for you Rose - hope the RTX works some magic for you soon.

Take care,

Kathleen x

Thank you Sue and Kathleen for your wishes.

David - Thank you for that advice it is great to know that if could still work and has given me hope. Thank you.
Not heard that linseed help - very interesting though. Where do you purchase them from ?

Rose

Hi Rose

Please don't feel too down about all this rubbish things will come right! Think you and I are in the same boat here ... and it's not a cruise liner it's a canoe, so we'd better get paddling!

In view of the fact that the steroid injection had a good and immediate effect I think that says something positive, although not sure what, but it has certainly worked on something to improve things! My husband has pseudo gout, it's a build up of calcium pyrophosphate crystals in the joints. It can be easily tested for by aspirating a small amount of synovial fluid from a swollen joint; if crystals are present a firm diagnosis can be made. He does get stiffness and inflammation but it can be controlled by anti-inflammatories (i.e. Naproxen) or joint injections. Chondrocalcinosis is similar but found in the connective tissue rather than the joint. Have a look at this article

My DAS, like yours, is high at 6.0 but my ESR fairly stable at 24. No rhyme nor reason is there?! You are not a fraud, just in need of a firm diagnosis and effective treatment. You have gone so long without adequate control it's no wonder you feel so low; and now the possibility of other diagnoses are being thrown into the melting pot kind of sends you back to square one.

Keep your pecker up Rose and keep posting. Thinking about you and hoping for a 'proper' diagnosis for you soon

Lyn xx

P.S. Have you ever had an anti-ccp test done? This is usually a definitive test for RA. The Rheumatoid Factor test can show positive in people who don't have RA, and negative in those who do, so not reliable for diagnostic purposes!

oh Rose,

i really feel for you, now hit with another problem.

you've soldiered on ever since i joined the Forum and have been such a support to me .. i just can't understand why your RA is under question. no wonder you feel so low.

i really hope they get to the bottom of what's going on for you pronto, and hope that the depo tides you over this very difficult time. Lyn as ever has given you an informative reply.

do keep us updated and it goes without question that i will keep everything crossed for you,

take care my friend,

Suzanne x

Hi Rose,

So sorry to hear the rituximab has not worked for you.
You must be so confused ,having your diagnosis queried after all this time.
Hope things get sorted for you soon and you can find a way forward.

Love Doreen xx

Well - update.

I have received my appointment to see my Specialist on May 4th - so another few months
to wait.

I definately am not so stiff, although today I feel exhausted and my feet especially are very
sore, I am in pain, and still tired all the time. I am still getting the sharp pains almost anywhere
on my body and they are so sharp sometimes that it really stops me in my track. With the tirednes
I never seem to be refreshed from any sleep that I have. . . Also I still getting the 'deadness'
if I sit or lie still too long and it wakes me up. Someone said that these symptoms effected a
relative of theirs and they have Fibromyalga.

So could this be a possibilty . . . Who knows just keep taking the tablets Rose.

Love to all hope peeps are keeping healthier than me.

Rose x