Hey Light...did your other treatments stop working for you? Why RTX now, new flares not controlled?
Yes, I have never had a medication free flare and am now @60mg of pred again to back off a new flare. I had the rash, the excruciating joint pain, the snotty drip drip and unable to breath with any exertion. I have had to work through all of this since I don't want to sacrifice my time. Not easy, I basically am confined to sitting in my office with nurses stopping in to talk to me about any issues. I hate not being able to be out on the unit. I also hate being totally exhausted by 10:00 AM.
60MG of pred....WOW! That's high....I received 60mg of pred when I was first diagnosed. Hope RTX does the trick!
You are in my thoughts and prayers, Light. It is very frustrating not working and still wanting to contribute. I gave up my dream job at the end of June and continue to try and adjust to the quiet life! I hope you can keep going! Good luck with your treatment!!
KB
KB -- "The good life is inspired by love and guided by knowledge". Bertrand Russell
Dx in September, 2011. Major involvement: kidneys and lungs. Medical implications: fungal pneumonia, drug-induced hepatitis, allergy to fungal meds, ear infections, sinusitis, gall bladder removal, vitreal detachment, and eye cellulitis. Medial meniscus removal (unrelated to WG). Medications: Rtx, Pred 5.0, Lisinopril, Chlorthalidone, Levothyroxin, Omeprazole.
I found it tough to function at those levels and felt rather hypomanic and emotional much of the time. Plus the horrendous pred snack attacks and bouncing blood glucose levels all over the place. It certainly is not a good time and it is good you have colleagues to help you stay grounded enough to still work. I know I couldn't have done so. hope things improve quickly for you.
Light, the 3-day pulse steroids are only if you're having a severe flare in which you need the massive pred to save your life--eg lung hemorrhage, kidney failure. It's hard to know if you should do the 2 infusions a week apart or the 4 infusions. If you're experiencing a bad flare I suggest doing the 4 infusions. Also, if you're on the heavier side like me, there is a sizeable dose difference between the 2 protocols since the 2-dose protocol uses 1,000mg for each while the 4-dose protocol is weight-based.
Before the infusion you should be given benadryl and at least 80 mg solumedrol. Dr Seo gives me 100 mg solumedrol but said he wouldn't give less than 80 to anyone.
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