Starting my Rituxan round Tuesday

[Keli]

I must admit I mostly read through the forums rather than post. But now I starting to worry just a touch. I had been put on cytoxan for 9 rounds and it seemed to clear everything but the extreme sceleritis in my eyes. But with all the new info on rituxan my doctors and I have decided to try this. I am mostly worried about the rtx itself. I have beenon high dose oral pred (80mg) since September, so it has done its worst to me. It wasn't until recently that I fully understood how serious my Wegs was. I started reading all the pamphlets they had given me and some of the information online that I could find. I have started to think about all the possible side effects. However, after reading through some of the posts on here I feel better. I do just want the symptons to go away. I want to get back to something that resembles normal. Knowing that so many of you have a had such a small problem gives me hope. I know that I am not out of the woods but now I feel like I have gps with me. Thanks all of you.

[NicShaf]

Keli,
Wow, 80mg of Preds since September! You poor thing, I can imagine its done its worst, eeek! I hope the Rtx works for you and gets you into remission. Best wishes

[Sangye]

Hi Keli, nice to meet you. Holy smokes--80 mg of pred for 8 months!!!??? That is unheard of. You should seriously run as fast as you can from any doctor who would do that to you.

Where are you located? Can we help you find a competent doctor to treat you? Please?

[Keli]

I am located about 40 miles from Washington DC. Which pute me about and hour and half from Johns Hopkins. However, I am a military spouse so I stuck with what tricare
(our insurance) is willing to pay for. I did however, have a loooong discussion with them when I finally could no longer take the 80mg a day. My legs started to leak fluid from them and I was done. That is when the decision to go with rtx was made.

[Sangye]

I go to JHU and also live 1.5 hrs away. Maybe we're neighbors! I suggest you discuss your care with Tricare and insist that you need a Wegs specialist to take over. (You need to make sure that JHU will accept Tricare, of course.)

Compared to what all that pred has likely done to your bone density, the edema in your legs is a small thing (coming from someone with the same thing). Edema can be resolved. Bone loss is often irreversible. You've had ctx for 9 months plus 80 mg of pred and it sounds like the Wegs is still not under control. Ctx is generally limited to 3-6 months and then you're transitioned to a milder drug. A dose of 80 mg pred might be used for severe Wegs for a couple weeks, then it is rapidly tapered. Your treatment has been grossly mismanaged, putting you at high risk of short- and long-term complications. It's unacceptable and far below the standard of care.

[Keli]

wow! I will have to look into to it. I had a dexa scan a few weeks ago and they showed small bone loss in my spine. They did say they I needed to get off the prednisone soon. I certainly wouldn't mind a doctor telling me to lower my steroids.

[Sr.Roc]

i was in the USMC you can go see any doc you would like as long as they take tri care . i would call Johns hop to see. One thing they dont like tell people is tri care is just like any other insur. so if the doc takes it you can go.