IVIG

[Lbrown]

Hello,

I am going to be doing IVIG, not this weekend (will need a transfusion) but next. They have never used it for pure red cell aplasia before.

She said my cellularity was 60%, I am 45 so I guess that makes my marrow better than it should be. She said that was the major difference between my disease and aplastic anemia.

I will get 2 doses of IVIG over 2 days, 6 hours each day.

If that doesn't work, I will be doing low dose cytoxan in April. She thinks that would work well with minimal side effects, 100 mg cytoxan a day.

I wish she had told me all this a year ago. I suffered through 7 months of feeling like puke on cyclosporin and thinking ATG was my only other option - or chemo. She forgot to say "low dose"...!

She also said I could stay on the olmesartan I am taking as part of an experimental treatment. It hasn't helped my blood counts but it has worked wonders for my chronic back pain and insomnia. If only I had energy, I would feel fabulous.

Deb

[triumphe64]

I had IVIG for my PRCA. It worked but wore out after a few weeks. I had five treatments altogether, two days and then one day after that for three more times. Good luck.

[Hopeful]

Hi Deb,

Not to be a nag, but I would still demand another BMB (with aspirate, flow cytometry, PNH testing and chromosonal analysis) from your doctor. Have a second opinion review the slides.

At the time of diagnosis, I had a spotty marrow with some parts being hyper/normal cellular and some being extremely hypocellular. This can make diagnosis tricky...especially if you have only one sample!

How does your doctor explain your low white blood counts if you have PRCA?

All therapies, including IVIG, have risks.

[Lbrown]

Hi,

Thanks for the feedback about IVIG - maybe I will get a break from the transfusion routine for awhile.

She doesn't explain my low WBC. In fact, she doesn't explain much. I have an appt with my excellent family dr of 20 years on Mar 8 to discuss my many frustrations and see if a 2nd opinion is warranted. The problem is it might take awhile to get in, and I'm getting impatient to do something.

Yes, I know these treatments have side effects, that's why I am trying to start with less drastic treatments first.

She basically does clinics 2x a week. There are something like 10 rooms and the clinic is packed. Sometimes she is double or even triple booked - it's not just her, there are other doctrs there and it's all the same. She gets to each person in turn. There is not a huge amount of time to talk, and then you don't always know how to ask the right questions, or even what the right questions are. Even with months and months of research I am finding it is not easy to ask the right questions.

Today my HGB was 81, and there's a huge amount of stress at work.

Deb

[Hopeful]

Hi Deb,

Do you live in Canada? What do you think of driving to the US for an appointment? The University of Rochester Cancer Center in Rochester, NY is an MDS Center for Excellence (not that you have MDS, but they are likely also very familiar with other forms of bone marrow failure). You could probably get an appointment much faster in the US!

If I were you, I'd check out there website and call to discuss your situation. In my experience, I have been able to get specialist appointments within a week. Without insurance, appointments with a specialist seem to run around $350/hour (this doesn't include any labs). Just come oraganized with your BMB slides and all blood test results.

I use to live in New York and remember driving to Toronto for fun. So hopefully, it's not too bad of a drive for you!

I wish you the best and hope the IVIG provides reprieve, if that is the route that you take.

[Lbrown]

I can't afford to go to the US, and I don't have access to my BMB slides. We're both unemployed at the moment, so money is tight. I just got back to work, supposed to be until end of March but we think we'll be gone next week (weird situation and it has been really stressful).

I am having IVIG next week, today I need another transfusion (HGB was 81 on Thurs). We'll see if that works. I see my GP to discuss all this March 8.

I am still on the experimental treatment. It has worked wonders for my chronic pain and insomnia, so I was told I could stay on it as it doesn't seem to be working for my blood counts. I find it really interesting that a dose of antibodies can help autoimmune diseases, it suggests autoimmune diseases can have an infectious cause, which is what I suspected.

Deb

[Lbrown]

I'm due to go in for IVIG tomorrow and Sunday. Yesterday my HGB was 89 with WBC 1.3 and ANC 0.7 - these are typical WBC counts for me.

I've been feeling a bit off all week and last night came down with a fever. Couldn't sleep, managed to get about 3 - 4 hours. Still have an appetite, fever was gone when I woke up at 4am. This afternoon it is back. Same as last night. It is low grade, running at 37.5C = 99.5F.

I'm going to go to my appointment tomorrow and see what they say. Can I still get IVIG with a low grade fever? I may not have a fever by tomorrow. How worried should I be? I figure at least if I go there and it's a problem - I'll be in the hospital and they will be able to call the hematologist.

If I can't get the treatment tomorrow, I will be delayed 2 weeks because I'll need another transfusion.

Deb

[Lbrown]

After the first day, I had a big increase in my pulse. It may have been due to taking tylenol sinus. It was annoying but I figured it was that, it slowed down as the stuff wore off, then I took plain old tylenol. I had a headache from the treatment, but felt a lot better after a nap and a snack.

Today I had no problem at all, and my pulse is back down in the 60s. Slight headache but less than yesterday. I am trying to stay hydrated.

The nurse said IVIG usually works right away, so when I get my blood test on Thursday it should be obvious. On Thursday, my HGB was 89, WBC 1.3, ANC 0.7 and retic 9.4. It would be really nice not to need a transfusion next weekend.

Deb