pberggren memorial thread

[drz]

Scary days and nights here. Blood tests are tiny bit better today. Today day 4 of plasma exchange. Tonight RTX. And tomorow they are going to skip one day of plasma exchange. It it how it should be done ? Please pray.

i was pretty sick during my time of plasma exchanges and had many I know but I don't think they did them every day as some times the body needs a while to sort of recoup from the treatments. I know I also had daily lab work and x-rays too to help monitor my treatment and expect they are doing same for Phil and may be using this info to determine when or how often to do the plasma exchanges.

[Alysia]

Thank you so much for your wisdom & info & prayers & love & support. We couldnt have made it without you. Love you <3

[Alysia]

At Monday night they gave my sweetie RTX but they gave it without solumrdrol before. I tried to insist on it, talking about the protocol but the bitch nurse kicked me out of the room and started it. The day after I asked the docs about it. They said that 80mg pred are enough and that rtx is not givven to people who are on high doses of pred. WTF ??? I think they are wrong. What do you think ?

[Jules]

I've been off the site for a while and am so sorry to learn to how poorly Phil is. Alysia, if it's any help, my plasma exchange was carried out on week days with weekends off. Thinking of you both and praying. Julie xx

[marta]

At Monday night they gave my sweetie RTX but they gave it without solumrdrol before. I tried to insist on it, talking about the protocol but the bitch nurse kicked me out of the room and started it. The day after I asked the docs about it. They said that 80mg pred are enough and that rtx is not givven to people who are on high doses of pred. WTF ??? I think they are wrong. What do you think ?

I've never heard of having Solumedrol before RTX. I know they give a little shot of pred and Benadryl (for me it was 100mg pred each time) but never Solumedrol. I've had it (Solumedrol) before but not with the RTX, so don't worry about that part. It makes sense to not give high doses of steroids and RTX together.... too much of an immune compromise.

There, one less thing to worry about.

[Alysia]

Phil's lung doc talked with dr. Specks. He doubt that the plasma exchange will help and suggests IVIG treatment. They will take blood tests today. What do you know about IVIG ? The last 3 days the blood tests are getting better, sats are better too. I was happy about it but the lung doc said that it is not signficant and makes me sad and scared again. Please continue to pray. Thanks for being with us <3

[gilders]

"What do you know about IVIG ?"
Not much, but this tells you the basics IVIG and Plasmapheresis

Keep smiling and although doc doesn't seem too bothered about blood results improving, it's much better than them worsening!

[BookNut]

Phil's lung doc talked with dr. Specks. He doubt that the plasma exchange will help and suggests IVIG treatment. They will take blood tests today. What do you know about IVIG ? The last 3 days the blood tests are getting better, sats are better too. I was happy about it but the lung doc said that it is not signficant and makes me sad and scared again. Please continue to pray. Thanks for being with us <3

I know very little personally. It is something that my asthma/immunologist is considering for me. It is designed to support an UNDER-ACTIVE immune system....rather than the overactive immune system that I THINK is part of the Wegeners scenario. I suppose it is possible that with wegs, the immune system might be over-boosted and need to be tamped down. BUT...this is COMPLETE speculation on my part. Sounds like Dr. Specks should know best. Hopefully the hospital doctors pay close attention to his recommendations. I am SO glad that you have been able to get in touch with him.

And by the way...maybe you could encourage that bitch nurse to take some of her vacation time and get away from the two of you. You need much better than that!

[Ruotsi1]

I just had my first Rituxan infusion last week and they gave me 120mg solumedrol, Tylenol, and Benadryl prior to my infusion per MD at Cleveland Clinic.

[drz]

I just had my first Rituxan infusion last week and they gave me 120mg solumedrol, Tylenol, and Benadryl prior to my infusion per MD at Cleveland Clinic.

They are knowledgeable and skilled in this area but the major centers for Wegs some times develop different protocols that work for them so there may be more than one way to do things.