Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications I'm a biomodified babe* !

*TM - Alohaben

Hi everyone!

As my precious Loz has informed you, I went for my first Remicade infusion yesterday. My life has been so over-the-top stressful recently, that I didn't even have time to think about it in the days before - which may have been a blessing in disguise. All I could think about as I sat there before and during the infusion was "this is so surreal".

As Loz shared with you, the infusion itself was uneventful - no site reaction, no allergy symptoms. I found myself very cold during and immediately after the infusion, but that's likely the slightly different temperature of the fluid and the drafty room itself. Afterwards I felt absolutely exhausted - again, uncertain if this is related to the treatment or the unbelievably hectic stressful life I've had as of late. I tried to wake up a couple of times after Loz dropped me off at home, but wasn't really able to fully rouse myself until I'd 'napped' for the better part of three hours.

In the end, I stopped digging for more and more information - partly due to my schedule but mostly a subconscious decision to just stop it. There is definitely such a thing as too much information, and my nature is to focus on the negative, not the positive, which is a nasty combination . While I am still currently functioning (under more pain and fatigue than I let myself admit), I can't know what the future will hold, for example, how much more difficult while it get in 10, 15, 25 years? So, I went for it! I'll be common-sensical when it comes to any new symptomatology, and hope that if one of the negative side effects does occur we'll catch it and deal with it sooner rather than later.

Moreover, my grandmother died three weeks ago, and in my final conversations with her, I had told her I was going to be taking this new drug which would hopefully make me feel so much better. She had so much hope for me, and always tackled health problems in her life full-on, that I just can't let her down. Her love and legacy provide me with the bravery I need to do this .

Thank you so very very much for your continued support and feedback. Blujay , Megan , Evelyn , Alohaben (a post from you, how special do I feel!), Tim , Kat , Amy , Marnie , Debbie , Dan , Gerard , Sarah , Possi , Lori and Mig - your input means more to me than you'll ever know.

And Loz, there just aren't words love . I had no idea that you'd been posting while I was infusing and dozing. Thank you for always being there for me.

Much love to everyone,
Jeanna

PS - Can't believe I forgot to answer the biggest question of all. Does she/Doesn't she feel any better? Well, I think it's much too soon to tell, but there was a moment yesterday when walking up the stairs didn't feel as much of a challenge as usual.... perhaps a sign of good things to come?

Yay, step one accomplished! A bit of waiting and seeing now, I hope you're not as impatient as me

Well you're on the road now. Many sympathies about your grandmother, they always know best and I'm pleased you listened to her. I think it's a wise decision to 'stop digging for more information'. It's happening now and whatever will be will be as they say (pretty corny but it applies!). I suspect patience might be in order but I also suspect that you already know that. And welcome to the anti-TNF club, I hope to join you soon.
Best wishes,
Tim.

I really hope the Remecade works as good for you as it is for me. It took till the 3rd infussion for it to kick in for me, but lets hope it happens quicker for you...you really deserve it.
So sorry to hear about your grandmother, I'm sure she is rooting for you from above.
Dan

Jeanna,
Reading your way of decision making you are a bit like me so I'm glad you made the final decision. Sorry to hear about your grandma but I hope she will be a good inspiration for you on the rest of this remicade experience. As all others I hope to hear how you are doing soon but well you have to give the stuff some time. I am myself having pretty uneventful infusions lately. My inflammation scores are now round zero. Even just before the next infusion I have an ESR of 2 and a CRP of 3. I am a bit a surprised however to not feel more according to that scores. On the other hand I have no really bad periods and i seem to have more energy. Probably I have damage from the past and I am glad that you have the opportunity to start earlier with this therapy.
Take care, Gerard

All the best to you dear Jeanna - glad for the hug. I hope this treatment does well by you. Hopefully the easier stairs are the first sign that it will.

Missed the breaking news - awwwww shoot! Well done Jeanna. That was a brave focus and a big step to take - surely your dear grandma was there, helping you get through it and of course your Loz. Strong positive thoughts for a real good outcome, an no side affects.

Cyber {{HUGS}} from this side of the island.

Molly

Sooooooooooooooo dear Jeanna, notice anything yet?

Ummm, I'm predicting by tomorrow or errr, by the end of this week sometime if not obvious already. I like guessing games, tho am not any good at them!!!

Very very cold during and after - always happens for me too, and seriously sleepy too yep , is all par for the course!!

Was delighted to read that you had no reaction. Pictured you breathing a nice little sigh of relief. Hope the rest of the ramp up is a smooth as can be.

BIG hugs and fingers crossed!
Love,
mig

Dear Mig, thanks for asking after me.

I haven't noticed a big difference yet, or at least don't think I have. Loz firmly believes he sees a difference in how I'm moving and acting tho, and he watches me more closely than I watch myself Anyhow, no unanimous verdict, but lots of hope.

I didn't get a chance to tell you this, but I've been thinking about you and your Mom alot. I really hope that they've got her pain under control and that the surgery will be the pathway to a better outcome.

Hugs and very much love,
Jeanna