Stopping drugs, fish oil question as well

I have been on and off steroids for the past 2 1/2 years. During this time I have tried IVIG, rituxin, azithriopine,spleen removed and NPlate. I have had to stop most drugs because we were trying to have another child and most would be harmful to the fetus. My husband and I are going to have a baby through a surrogate so now I can go back on other treatments.

I did not like the NPlate (had to get a shot every week). I was looking into trying Promacta.
I was wondering how anyone out there did on Promacta.

As of now, I am slowly going off steroids and my doctor wants to see "how low I go" and hopefully I will not need anything! He has NEVER done this before. The only time I was drug free was when I was in remission for 10 years. The past 2 1/2 I have not gone over 120 and I average around 50-90. I am praying that I will go into some kind of remission again and I can be drug free!!!

Has anyone out there tried this before? Slowly gone off all meds and waited to see what happens???

I do have another question as well. I know fish oil pills are a blood thinner, but I read in one of the PDSA articles that the benefits outweigh the harm it can do. Thoughts? Opinions?

Thank you everyone!

I think most people treat when needed and as needed; they don't just stay on meds constantly to keep counts up, so I don't know if too many people have had that experience (unless they have consistently low counts). For example, I treated with Prednisone when my counts were 8. They went up and I tapered Prednisone over a two month period. When they fell again to 10 a few months later, I treated with Prednisone again. I repeated this a few times, then tried Rituxan. Counts went up and fell back down a year later, then I treated again. What dose of Prednisone are you on?

As for fish oil, I am all for it as long as counts are not too low. I probably wouldn't take it if counts were under 40 or 50.

Hi, I am currently doing that exact thing. I had been taking pred for ten months, stopped all treatment in November. My counts where at 120 at this stage, since then they have been at 278, this was after surgery(the doctors think this caused a rise in counts)and then they went to 190, 180, the last one about one month ago was 160, so still doing ok.
Can I ask why you take fish oil and what effects it would have on your count, I see Sandi says that she wouldn't take it if your counts where low. I don't take any supplements but I wonder should I? I often see on here that people take a few different things.

I was told by by Hemo to not take fish oil b/c of the blood thinning effect.
Can I ask you about the surogate (spelling?) mother route you are taking?
How did you find someone and how does that work? I am looking at all my options.
I just had my second miscarriage and I have ITP. We have one child who is three.
Thanks and take care.

I take a ton of supplements, this fish oil is because my hair was falling out due to the long term effects of steroids. I also take a mulit vitamin, b-12, iron, calcium, and wheat grass pills.

Not sure if they are helping, but I am trying to add food and supplements that may be helpful for me.

In regards to a surrogate, I joined a few blogs, cafemom.com & allaboutsurrogacy.com, I searched on those sites and found agencies in my area. I am currently searching four different agencies and we are going to choose one soon. We have been struggling with secondary infertility for 3 years now and this is now the route we are taking. I have had 8 IUI's and 5 IVF's that did not take, so we are also working with a fertility dr. If you have any questions, please ask away. If you want to private message me that is fine.
Not sure where you are located, but surrogacy laws vary from state to state.

Good luck everyone!
Thank you everyone for the answers.

I would love to send you a private message- how do I do that? I live in Ohio.
I am sorry you have had so many health setbacks- this is all so confusing for all of us.
I am happy you have a positive attitude and the surrogate mother option sounds like it would be a complete blessing. You take care and hopefully I can message you soon- if it helps to message me first that is fine with me. Thanks!

Heidi:)

Also- have you read the book Eat Right for your Type? It discusses eating benefits based on our blood type- I am o positive- so I am supposed to eat more meats and less carbs- each type has different foods that are supposed to help- the author also suggests specific supplements based on your blood type. I was also tested to rule out wheat and gluten allergies-both were negative. I thought if I was allergic to them that might bring my count down.

I seem to have developed ITP during my second pregnancy. Also- it seems to have started right after I got a flu vaccine. I cannot prove it, but I have read that it is possible.

I have taken prednisone, Decadron, and IVIG. My last count was 67,000 after two treatments of IVIG.

I hope this helps you in some way. Take care.