Update on pberggren

[Dryhill]

Glad to hear you are feeling better, Phil. Take care of yourself mate.

Jim

[pberggren1]

I think the dilation is wearing off now.

[pberggren1]

Looks like a case of pred insomnia............

Now for the rest of the story.....

Was on my way to the hospital early this morning around 8 to go for my poke and pee. Doc said in e-mail to pop by the office in the afternoon for a chat so I thought it would be good to have some current numbers in front of us. On my way there a MB passed me, it was my doc......lol. I met him at the ER and we chatted for a bit. He is very glad to be back. He spent most of his time in Ghana, his home country. His Mom just turned 80 and his Dad 90. He said he also did a lot of teaching there as well. He had an urgent case to attend to and told me to come by the office around 4........

So back at the office. All my labs look good. Last Sputum and ANCA screen are negative from last week and current ESR, CRP, and WCC are all good.

I asked him if he thought the government would approve funding long term for my rtx use in the future. He said he does not know but his experience with government approval for expensive drugs like that is not in favour of the patient, especially when it is a hypothetical case like mine, meaning if and when I will flare again. We both agreed that I will most likely flare at some point in the future but as to the severity we of course will not know that.

So I said: I think I would like to do 2 weeks of ctx along with4 infusions of rtx at the beginning of a flare regardless of severity. He agreed and said that is his gut feeling as well seeing at the first month of treatment is the most crucial. He said the likelihood of hemorrhagic cystitis is quite low just using 2 weeks of ctx but there is another drug that can be used to help protect the bladder while on ctx again. I said: Lets make this the game plan then. He said he would send another note to the drug plan to find out if they would approve the rtx long term or how quickly we could get it approved if I was flaring.

I'll do another PFT later today or tomorrow. I joked with him and said I would go to the cardiac lab where it is done around 3:45 on Friday. The ladies there like to leave early on Friday and that would piss them off. He laughed at that one.

I also told him I want to taper a bit slower starting at 15mg of pred. I'm at 30 right now and will taper 5mg a week to 15mg then probably taper 1mg every 2 weeks or something like that. He said that is a good idea. I said I've already been on pred now for over 4 years so what's another year or so.

[Ana]

Hi Phil. Didn't know you were at the hospital. I'm so glad you feel much better now.

[pberggren1]

Hi Phil. Didn't know you were at the hospital. I'm so glad you feel much better now.

I just go to the hospital for tests like blood and urine work and x-rays and breathing tests and such.

[pberggren1]

My doc also thought it would be good for me to try the Imuran for 3 years instead of 18 month. He said after 18 months go down to 125 for 3 months then 100 for 3 months then 75 for 12 months.

[Sangye]

I'm glad your infection has cleared up. The new plan sounds good. I find it takes away a lot of anxiety to have plans like that.

[pberggren1]

I'm glad your infection has cleared up. The new plan sounds good. I find it takes away a lot of anxiety to have plans like that.

Thanks. Whatever it was it must be gone now.

I find it helps releive some stress as well to have some plans in place as to the "what ifs" and things like that. Trouble is the plans always seem to change quite often......lol.

[Debbie C]

He doesn't think it will go back into remission for that long.When I took Imuran I had such a hard time trying to catch my breath and it was only 50 mg. I can't imagine being on it for 3 years ..that just seems like an awfully long time. Especially since everything came back good.

[pberggren1]

Each treatment is very individual though. And we are only about 8 months into treatment with Aza so 3 years is still a long way away. So far I have had no problems with Aza as far as we know. I do have trouble breathing but because of scar tissue in bronchials and cavitating nodules in lungs.