Hi from Col 23

[Col 23]

Hi haven't been on the forum for ages. Had a tough year but still here. Can anyone direct me to cyclophosamine infusions information on this forum? Unfortunately been doing these infusions for approximately 9 months still no remission. Back up to 40 mg of the dreaded predisolone. Off to the Rheumy again next week. Life goes on. However I now have a more positive attitude and enjoy each day even the bad ones. I try to achieve something everyday no matter how small. I also try to help as many people as I can in my managed inner circle and focus on my family and husband. This change came about after nursing my mother and holding her hand until she passed last month and my best friend dying in January of this year. Havent caught up with the news on the forum of late but will get there. cheers Col 23

[Lightwarrior]

I will look for the information you are seeking in a bit. I just wanted to say hi and how good it is to have you back on the forum again. You have been missed.

[jeniban]

Sorry to hear you have had a bad year. I understand that take cyclo orally it works better then taking by IV. If you are still not in remission by now, question your Dr about other treatments.:unsure: Good to see aussies on the forum:biggrin1:

[mishb]

What Jen says. :thumbsup:
I don't know anything about cyclo except what I have read on here, but it is good to see you back.

I am so sorry for your recent losses.
Good luck with your appointment next week......hopefully good things will come your way afterwards

[Sangye]

Hi Col, it's really good to see you. Sorry you've had such a difficult year. :sad:

Good for you for helping others. It sure is needed in the world!

[elephant]

Col hang in there your rollercoaster ride will come to an end then you can ride a very flat and slow train. I see one coming soon for you to get on. Hang in there bud.

[Col 23]

Hello All
Nice to be back, thanks for your welcome.
Starting again on infusions of Cyclophosamine soon, still on Pred gone down to 35mg but really battling with that. Fatigue and then bouts of
weird energy, scattered sleep patterns, high irritability, obsessive compulsive. Lucky I have a very supportive husband. Just concentrating on keeping stress free and making the most of the weird energy,when it kicks in to spring clean. Col 23

[Col 23]

How have you been Sange?
Col 23

[Col 23]

Yes I keep thinking I must get into remission one of these days, has never happened yet? How have you been?
Col 23

[Col 23]

Thanks Lightwarrior, How have you been?
Col 23

[Lightwarrior]

Thanks Lightwarrior, How have you been?
Col 23

I'm in the middle of a flare. Upping my pred to 40 and my mtx to 20mg IM instead of 15mg po isn't working. I have some high level meetings today and then I'm going to try to go home early. I have a call into my rheumy.

It does make me feel much better to see you and elephant on the site, comforting.

[Sangye]

How are you feeling now, Light?

[Lightwarrior]

How are you feeling now, Light?

Like crap. I am so tired of being on 60mg of pred. I want to get the Rtx going. How long before I can start tapering the pred?

[pberggren1]

after a month of being on 60 mg, or maybe even sooner. The new data suggests that 3 months on pred is fine for a flare.

[HopeinTN]

Hang in there Light!

[Sangye]

Like crap. I am so tired of being on 60mg of pred. I want to get the Rtx going. How long before I can start tapering the pred?
It depends. See how you feel with the rtx infusions. You might be able to taper to 40mg or even 30mg during the month of treatment or you might have to wait about 2 weeks after you finish to start tapering. Don't push it. Rtx takes time to start working. :sad:

[Col 23]

Hi Hope your flare has settled and your feeling much better
Col 23