IVIG ordered for platelets of 50,000: platelet count on way down & Sun flight

Hi ITP Friends,

Never can catch a break! Under extenuating circumstances, is there any reason not to get 1 mg/kg of IVIG infusion if my platelets are 50,000 tomorrow, (My guess is they will be 30,000 or lower but wanting to get everyones feedback.)

I had IVIG 2 weeks ago for 6,000 count. Platelets went up to 144 and were steady for 9 days. Today down to 60,000. Usually IVIG works for 2 weeks. In general. I would check counts on Monday and I predict 8,000ish and get the IVIG then. But because I am flying this Sunday to Mayo and don't want to tank there and have to deal with waiting for insurance approval and getting an infusion there I am inclined to get the IVIG for one day only, tomorrow.

So I am hoping that it is safe to get IVIG at 50,000. Also I am on Promacta 50mg for 3 weeks now.

Be well and thanks in advance for your continued help through this process.

Cindy

How long is the flight? My concern would be, again, a risk of blood clots.

I'm more scared of blood clots than having a lower count. Flying in general increases the risk of clots, especially in the legs, because of the long period of sitting. Just because you are at 60 now doesn't tell you anything about what you might be tomorrow or in the future. Maybe your Promacta has kicked in, maybe it will go up. You just never know what counts will do. The target/goal count for Promacta is 50,000, so I would definitely not be shooting for higher numbers and doubling up with Promacta and IVIg. I personally would be more scared of adding IVIg on top of an already higher than desirable count for Promacta. You will have to work with your doctor to see what works best for you and your comfort zone.

I've flown with counts in the 20s and 30s with no issue (I'm not a doctor and recommending what might be a safe count for you for flight), but just a personal data point. I hope you get some good treatment advice on your trip!

Cindy, yep, those are some trying circumstances/timing. Putting aside the clot issue for a moment...

I dunno, but that 60 sounds like a unexpectedly high number after 2 weeks. When you comment that IVIG lasts two weeks is a bit confusing. Isn't this the first time you've taken IVIG without Nplate? I wonder if your new floor is in the 30 to 40 range - with today's 60 count having been courtesy of 1/2 by Promacta and 1/2 by IVIG. Just a guess on my part.

Is it possible that all of the 60 was due to Promacta? When you say IVIG count was steady for 9 days, do you have some counts and date data to go along with that?

It makes sense what Hal is saying. If IVIG was 2 weeks ago and it lasts for 2 weeks-- then the 60K today has to be, at least somewhat, the Promacta. ? It will be interesting to see your counts tomorrow. Have a great trip!

Hi Sandi,
It is a 2 hour flight. My worry is if I don't do the IVIG I will tank down to 6,00 or lower by Monday or Tuesday. That is my pattern.

It is a tough decision. If my platelets only go to 50,000 tomorrow a 10,000 drop, I for sure will not get the IVIG. If they go down to 40,000 maybe not. But if they are 30,000 it is a 30,000 drop in one day and I think it shows the same pattern of when the IVIG wears off I do a pretty quick downward spiral.
I had IVIG 8/12 for 4,000 platelet count and it went only as high as 144. (Started Promacta 50mg on August 6.) So maybe platelets won't go too high if I get IVIG tomorrow.

I hope it is an easy decision one way or the other tomorrow. Any thoughts are appreciated.
Cindy

I had Platelet count of 144 last Friday and 141 this past Tuesday. So It has gone down 80,000 since Tuesday.
I had IVIG in the hosp when I was 1st dx in May of IVIG without Nplate. It lasted 2 weeks. And the drop in count was shockingly quick at the end.
I copied this from my reply to Sandi, fyi
It is a tough decision. If my platelets only go to 50,000 tomorrow a 10,000 drop, I for sure will not get the IVIG. If they go down to 40,000 maybe not. But if they are 30,000 it is a 30,000 drop in one day and I think it shows the same pattern of when the IVIG wears off I do a pretty quick downward spiral.
I had IVIG 8/12 for 4,000 platelet count and it went only as high as 144. (Started Promacta 50mg on August 6.) So maybe platelets won't go too high if I get IVIG tomorrow.

Maybe tomorrow we will be pleasantly surprised.
I res

Thanks Poseymint.
Have a great weekend!

Hi momto3boys,
I hear you and hope I am at 50 or 60,000 tomorrow. That will be an easy decision, no IVIG but if I am downward spiraling, I'll do the IVIG I guess. Thankfully it is just a 2 hour flight! I'll get up and walk a bunch too.
Thanks and have a good weekend.
Cindy

Cindy, I've erased my previous comments here. The simultaneous combination treatments have made it impossible to decipher what first line treatments, steroids or IVIG or both, you respond to.
Best of luck...

Give the Promacta time to work, why risk a blood clot.

You cannot predict what may or may not happen with counts based on what happened the last time or the time before that. There are a lot of variables and I guarantee you, there will be surprises along the way (both good and bad).

Hi Sandi and All

My platelet count went down from 60,000 yesterday to 33,000 today and I did get the one day dose of IVIG. Off to Mayo tomorrow.
Thanks for all the good thoughts and information. This is the craziest disease to deal with!
Much Appreciation,
Cindy

Thanks mrsb04
Platelets went down to 33,000 thismorning so I did do the IVIG hopefully it will all go well.
Be Well!

Hi Hal9000,
Thanks for all your thoughts. It is all so very confusing, I agree. Hopefully Mayo can shed some light.
Cindy

Cindy - how did it go?

Hi Sandi,

Thanks for asking. As everyone on PDSA predicted there is No magic bullet.
I met with a very nice hematologist. He is pretty sure I have ITP but was concerned about my leukocyte count of 1.8, norm is 3.5 to 10.5, and wants it retested. Might have gone down from the IVIG he said.

They said the first 6+ months of ITP are the hardest and then things seem to usually get under control because the antibody response calms down a bit. Hoping for that.

He also agreed with our PDSA group that he felt my doctor has not been consistent in his treatment and given multiple treatment which gets us back to square one in confusion over what works.
The best news would be that this Promacta 50mg that I've been on since August 6 will start kicking in and my platelets can level out to a safe and stable range.

New info...The endocrinologist suggested 100 mg of Selenium a day. Studies show it decreases Hashimotos antibodies and it might help with ITP antibodies. Possibly big news. I am asking hematologist if it is OK to do.

I am looking into CBD too; not a suggestion from Mayo. Has anyone tried that? Here is a link. www.google.com/search?rlz=1C1CHBF_enUS758US758&q=cbd+and+platelets&sa=X&ved=0ahUKEwii_8STvP3VAhVsxoMKHQDlClcQ1QIIdigB&biw=1366&bih=638

An aside, Platelets were at 112,000 Monday so hopefully that will be as high as they get from the IVIG added to Promacta.

Thanks again for asking.
Cindy

Well, you didn't really find out anything new, but there wasn't any bad news either. I figured you'd get the exact advice that you got. Does this mean that we're as good as Mayo? Stick with Promacta...you could even discuss going up in dose if counts do not respond soon, but you'd have to wait until IVIG wears off.

I have not heard of selenium doing anything for antibodies, but I do take it every day. It's a good antioxidant. It comes in mcg so I'm hoping that's what he meant. 400 mcg is the highest safe dose. 100 mg's might be toxic.

I have not tried CBD but have been wanting to. It's on the list.

You are funny! And yes you are as good as Mayo in many ways. All the advice I was given from you and this group has been spot on and helped me through the past four months. I feel like I have been in a time warp and can't believe that I have been dealing with ITP this long already. It is time to get my life back!
And the selenium was 100 mcgs not mgs, once agin you were as good as Mayo!
Thanks and be well!
Cindy

With regard to CBD, amberyard has mentioned on Facebook (Amber Yard) that she is getting very positive results from CBD while little else has worked for her (except regular IVIG treatments, with many trips to the ER). I hope she will check in and bring us up to date on this.

I tried to change the thread title here. I hope it works. I hope we can get the info from Amber Yard so we can try the CBD she uses.
Thanks,
Cindy

It did not change main thread title.

That's okay, Cindy. We got a new one going in the Natural Treatments Section. We'll keep this one just for you!