Hi I am copying this from another thread to enable
my other friends to catch up, I have been busy with the kids over the
hols and so fatigued, I find it hard to even sign in! Hope you are all
bearing up and enjoying the new year!
Hi guys, thankyou Sam for your info, I appreciate your efforts.
Waddie, thanks for asking how I am going and Liam, I have been extremely
fatigued, may need another iron infusion, also have had thyroid tests
and awaiting CT Abdo, hands and feet xrays, bone mineral densitometry
and Colonoscopy/endoscopy and capsule scope of some sort, you swallow
the camera etc, had one before, went thru in 1 hour, specialist said it
should take 5 hours but I was not absorbing hardly anything especially
iron due to inflammatory damage and drug damage! So thinking of
starting Actemra, available here on PBS if you qualify (I don't due to
already having had 3 diff drugs not work) so may have to apply on
compassionate grounds. Don't know if I really want it, I have managed
to push MTX up to 20mg weekly which for me is fantastic, side effects
are becoming an issue but I would rather stay on this and reduce pred,
but having great trouble doing this so for now I am awaiting all these
tests which I plan having once kids go back to school. I am going to my ortho to talk about having my feet cleaned out, my GP said don't get my hopes up as the fractures that won't heal may be causing most of the pain when walking!
Liam is fantastic thank God, doing really well, starting high school
next week, hope the anxiety stays under control, joints play up
occasionally but so far so good. Epilepsy under control and he is back
to his happy self, thanks again Waddie, let me know how you are going
please. I am going to copy this to a new thread to let my other friends
know what is happening, cheers, Janie.
Thank you for the update Janie. I'm sorry you are feeling so bad, but I'm glad to hear that Liam is doing well. Take care!I am so excited for Liam, high school! I am sure he will do just fine and that is wonderful news about the epilepsy! What a strong kiddo! He will carry that strength through out his life knowing he can overcome adversity, and he will always be secure in the knowledge that his family is there for him.
Janie, I hope you are able to at least try the Actemra to see if it would be effective for you. Are you taking folic acid and biotin to help with the side effects? MTX really does work wonders and I hope you are able to stay on it. I have yet to find an equal substitute and I don't feel I have done near as well since I have had to go off the MTX.
I will share my little trick with making sure I am getting additional iron - use an iron skillet to cook your meals! The biggie to this is to season your skillet well and then it will cook as if you are using Teflon! The biggest problem I have with this is lifting the skillet, but DH and I have worked a deal out so he man-handles the skillet for me! Of course, I know your problem is absorption, but hey, a little extra iron with meals can't hurt the issue!
I hear ya on the feet problems! You are very lucky to have a place to swim, I wish I lived where I had access to a pool! I have been having nerve pain in my feet for a month now and it has halted my walking program for my heart.
hi janie!! good to see you here! :)So happy for Liam. Janie all I can say is ditto to what Waddie said. Hang in there. Thanks Millie and whispered, how are you both going? I have been so busy in the school hols, trying to do as much as I can with the kids, I get so sad when it is time for them to go back to school - boo hoo
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