Freaky's back from Addenbrooke's and...

[Sangye]

It's great that you're all done, Sam!

Bob, it may be. I start to feel lousy around the 7-month mark even though my labs look fine. I feel lousier each month as I try to make it to a year.

[freakyschizogirl]

Bob when is your next infusion?

I felt lousy in the 2 weeks leading up to the infusion - was tired and had aches and pains that I don't normally get. My back is still giving me grief. Very stiff and creaky down my spine. Back to Adds today for a check up so I will be mentioning it again.

[Psyborg]

They were attempting just the single infusion with me changing to Immuran.

Naturally I do feel better today with the Pred being boosted way back up. Wonder drug that works blunders... I'm thinking I was starting to have some airway issues that I just started noticing yesterday. Obviously the doctor wants me to keep a close eye on it now and come up to Cleveland for testing if needed.

[freakyschizogirl]

I'll be down to 3mg of pred on Wednesday - yay! I am starting to notice the crusting is coming back with a vengeance..is this to be expected do you think? Its not very bad but its coming back quicker after i clean it out. So probably not worse, just gaining speed.

[Dirty Don]

I'll be down to 3mg of pred on Wednesday - yay! I am starting to notice the crusting is coming back with a vengeance..is this to be expected do you think? Its not very bad but its coming back quicker after i clean it out. So probably not worse, just gaining speed.

I'm right behind ya at 5 mg of pred...will see on next appt if I go further. Have experienced a couple of nosebleeds and some crusting, but not as bad as before. Too hard to tell, just keep an eye out I guess.

[Psyborg]

Doctor appointment is Wednesday. I have my customary list of questions/symptoms. I've actually felt marginally better since the beginning of last week, though my sinuses and airway seem to be having issues. I'm wondering it it might all just be an infection. I think I've got Thrush...again...my tongue is burning like crazy in the back.

[pberggren1]

Thrush again Bob?! Yuck.

I remember Dr. Hoffman saying many years ago that it will not be the disease that gets us in the end but an infection of some sort.

[freakyschizogirl]

Thank you. Keep up and good luck at your appointment!

Have had the odd bit of blood but not a full blown bleed so will definately keep an eye on it.

[Debbie C]

I too am glad you are doing well Sam and that yr infusion went good.Are you going to be dropping 1 pred every 2 weeks now or staying on it until your next infusion ? Hope you can enjoy yr summer drug free !!

[freakyschizogirl]

I'm dropping by tapering 4mg one day and 3mg the next for a month and then staying at 3mg for a month. then move down like that so wont be drug free for the summer. But a reduction is still just as nice