New and Scared

[Sangye]

If your on high dose of Steriods I found that I lost the plot alot and had melt downs and walked out of appointments, cried alot and was very moody, sometimes I wasnt communicating very well. Apparently its a good idea to take a advocate (friend, relative or partner with you to doctors appointments) and hey if your not happy with your treatment ask them about their experience and who they are consulting with. Get them to stick to the scientific management (if you can). When they ask how your feeling from my experience they are trying to see if its related to sideaffects of medication. No sure what your story is but just letting you know what's happenede to me.

Well put, Col!

[Christrd]

Thank you Cole 23.
Sangye, I have a question for you and the whole forum. I was to recive my first doce of Rituxan Yesterday, but Dr. had other plans. He said it was a good Idea if they take me off the Cytoxin for a month B4 they put me on rituxan. I asked if it was a good idea to take me off cytoxin? Dr. said that Cytoxin was not doing anything for me anymore so there would not be any harm in taking it away.
Was this a good move by my Dr.?

[elephant]

Christrd, the only think I can think of is that the doctor is waiting for a month because your WBC might be too low or doesn't want it too low for your treatment with Rituxan. How are you feeling over all? Are you more short of breath? Nose bleeds? More tired? Joint pain? If any of these questions are happening to you.....I would ask your Rheumatologist. I am sure Sangye will be able to help you.

[Sangye]

Christian, I have the same questions as Elephant. Like she said, it's fine for them to keep you on ctx while you're getting the rtx infusions as long as your blood work looks okay.

I had been on ctx for several weeks before we began rtx in October. We were switching to rtx because my bone marrow couldn't tolerate a therapeutic dose of ctx. (I was getting weaker but the Wegs wasn't being controlled) However, since rtx is not fully functioning for a month my doc was worried about me going that long without a cover drug. He planned to keep me on ctx the whole month while I was getting rtx infusions--hoping my bone marrow would hang on. But within 2 weeks we had to stop the ctx.

[Col 23]

Hello my global support group
Just a note to say Im thinking of you all and I hope that you all have a good day. Sometimes a bit of aromatherapy - relaxing music - and say no to anything you cant handle helps. A stress free relaxing day
can do wonders for the spirit.
cheers
Col 23

[Christrd]

Hey guys. This morning I woke up with a little bit of joint pain. Back in September, when this all first started, I remember having joint pain in my legs. A week later, I could not even stand on my own. I do not want to go trough that again.
Im calling my Dr. to see if this is normal or ?? Its only been 3 days since my last Ctx intake. I want to be able to walk at my wedding lol.

[Sangye]

Yes, definitely call your doc. Any time "original" signs/symptoms return, it can be a red flag.

How many ctx IVs have you had? I don't know how long they take to work. Daily oral ctx takes at least a month to fully begin working and it can take 2 or 3 months to really notice improvement. But backsliding is never good.

[Jack]

backsliding is never good.

Sangye's motto!

whip-lady373x328.jpg

[Sangye]

If I could get down to the floor, I'd be ROTFL. Hilarious, Jack.

[elephant]

Too funny Jack. I second the backsliding.