a long road?

Hi everyone! I haven't been on in a while and wanted to check in. I joined the forums here back in February when I was 5 months pregnant and newly diagnosed with ITP. Since I spent most of my time studying the "everything pregnancy" section of the forums, I wanted to introduce myself to a broader group. My son was born in May (healthy no current sign of low platelets) and is doing AMAZING at 6.5 months.
It was a long and scary pregnancy and an even scarier delivery. I am so thankful for his health.

I am still having issues with low platelets but with regular IVIg my hematologist tries to keep my counts above 75. My insurance only covers the infusions if done at home...so I have a visiting nurse who sits with me for 3.5 hours at least twice a month. She is great and helps a lot with the baby and my 3 year old.

Since my diagnosis, my hematologist has only tried Prednisone (to which I had no results) and IVIg. I was honestly hoping this would go away once the baby was born but no such luck. My counts have ranged from 3 (During the pregnancy) to 150 (with weekly IVIg). I often wonder if there isn't something else I could try...I have asked my hema but she really likes my bodies response to the infusions.
I guess I was hoping to CURE not just TREAT this.

Anyone here been on long term IVIg? Any negative side effects? The worst thing I have noticed is a mild to moderate headache and lethargy following the treatment (also possible hair loss??)

My current orders are for IVIg every other week with CBC for platelet count. My last blood count was in the low 100's . When I get treatment every other week, the counts slowly fall. When they get to about 80, my hema increased the frequency of infusions to every week. Its an annoying roller coaster.

Any thoughts or ideas welcome. Anything I can or should be doing or trying?:side:

My goodness! There are a lot more options out there! Are you happy with this arrangement?

I don't think 'curing' ITP is a very realistic goal. Achieving a remission is. You most likely won't get remission with IVIG...it's a band-aid and and mostly used as a rescue treatment.

My first suggestion - another opinion!

Can't believe the baby is 6 months already!

As the risk of repeating Sandi - there are many other Dx options. I don't think anyone considers IViG a long duration treatment???? I can image perhaps safer during the pregnancy and perhaps they're allowing some time post delivery to see if ITP resolves itself?? I think you should ask the Hema's long range plan and if you're not comfortable with the answer, it's time for a 2nd opinion OR a new Hema!

I have seen lots of other treatments mentioned on the forums here but when I asked her (my hema) about them, she advised me of very scary side effects. She says that I am responding GREAT to the IVIg and her long term plan is to continue this course of treatment and "hopefully one of these days" my "platelets will stop fluctuating at a level 90 or better" and she can discontinue the IVIg...
Hmmmm you guys think a second opinion??
I was thinking of trying homeopathy OR dietary changes.
Open to suggestions here. Prednisone, I didn't respond to. Rituxan she has frightened me away from. What else you got??

Nothing is without side effects to someone.
www.pdsa.org/treatments/conventional/immunoglobulins.html
www.nlm.nih.gov/medlineplus/druginfo/meds/a682815.html

Your doctor is giving you IVIg when your platelet count is 80,000?

How old is this doctor?

My hematologist told me she had never had a patient go into remission using IVIg.

Here are the conventional treatments listed in the Treatment section of this site,
click on each one to read about it - go to medlineplus I have above and check them out too.
www.pdsa.org/treatments/conventional.html

Here's the most up to date thinking..

bloodjournal.hematologylibrary.org/content/115/2/168.full

I am so glad I have you people here to bounce things off of!

My hematogist is 66. And IVIg is the only treatment (aside from the prednisone) that we have tried.

She started the IVIg when I was pregnant (February 2011) and had a count of 3,000. With IVIg my counts go up but only temporarily. I asked her at my last appointment (she sees me every 3 months but monitors my blood work regularly) what our long term goals and plans were and as I said, she wants to just continue the IVIg and hope this will level out eventually at a count 90,000 or better.
When asked baout other treatments she told me Rituxin had been linked to brain deterioration and lymphoma. Spleenectomy decreases ones immunity and is not guarenteed and Prednisone has had no result for me so she would like to continue the IVIg. She aslo questioned why I would want to try anything else when this seems to be working so well...
What do you guys think? Is it time to go for antoher opinion?? :huh:

Cloyd:

I think this is your decision to make. If you are okay with the current plan, you can just keep doing it. If not, it would be time to make a change both with doctors and treatments.

Bear in mind that it is very unusual to use IVIG long-term as a method of managing ITP. The only people that do that are the people who have not responded to anything else. Nearly everyone here has tried the other treatments that your doctor is scaring you away from. Those same treatments are widely accepted and valued as credible options.

Why is your Dr infusing you with counts in the 80's??

Another thing to think of (and certianly factored into my decision to stop using IVIG as my treatment method) is that some people start to see the effeciveness of IVIG go down after contiuned use (counts not going as high, or IVIG not lasting as long) I wanted IVIG to be there as my 'emergency' go to and still work so I stopped using it as my normal treatment and tried other things, while knowing that if my counts suddenly dropped form something else, or I needed surgery or a quick platelet rise for some reason I could always go back to IVIG.