Im confused on Promacta, Parasite Cleanse started yesterday and CBD to boost....

Wnated to update you all and see if you had any input.
On Promacta 50 mg since 8/6, parasite cleanse started yesterday, and CBD to boost immunity started 5 days ago. Labs today 173,000. (hooray), Last Friday 9/8 at 88,000, last Monday 9/4 1,000. Got one day IVIG on 9/4 and a 4 day dex burst.
Do I worry being on 50mg Promacta at 173,000? I know 50,000 is the target but I was trying to find the suggested platelet ranges and could not put my finger on when to decrease dose. And maybe I wait at least the 14 days when the IVIG has ever worked except once when I was on triple antibiotics and it lasted 7 weeks?

Doctor was wanting me to get IVIG today if I was under 50,000; prior to today it was always under 10,000 for IVIG. That took me by surprise.
I understand he doesn't want me to bottom out (and I don't want to bottom out) again which I did after 9 days post the IVIG infusion Sat, 8/26 when I got IVIG at 33,000 due to my trip and by 9/4 I was down to 1,000.

Thanks,
Cindy

Cindy1 wrote: Wnated to update you all and see if you had any input.
On Promacta 50 mg since 8/6, parasite cleanse started yesterday, and CBD to boost immunity started 5 days ago. Labs today 173,000. (hooray), Last Friday 9/8 at 88,000, last Monday 9/4 1,000. Got one day IVIG on 9/4 and a 4 day dex burst.
Do I worry being on 50mg Promacta at 173,000? I know 50,000 is the target but I was trying to find the suggested platelet ranges and could not put my finger on when to decrease dose. And maybe I wait at least the 14 days when the IVIG has ever worked except once when I was on triple antibiotics and it lasted 7 weeks?

Doctor was wanting me to get IVIG today if I was under 50,000; prior to today it was always under 10,000 for IVIG. That took me by surprise.
I understand he doesn't want me to bottom out (and I don't want to bottom out) again which I did after 9 days post the IVIG infusion Sat, 8/26 when I got IVIG at 33,000 due to my trip and by 9/4 I was down to 1,000.

Thanks,
Cindy

That's an awful lot going on there Cindy. I got my CBD oil and have started taking it sublingually twice daily. We'll see if I notice any changes over time. That's the only thing I'm experimenting with at the moment.

Regarding promacta ranges, the target is indeed 50,000 and the recommendation is to decrease the dosage if you go about 150,000. However, you have so many other things going on with extra medications (IVIg and dex) that you have no way of knowing what's going on with your promacta. I had thought your plan was to try 75 mg to see if you could get some kind of a response from that? Since you kept crashing down to 1000 on 50mg, it sounded like it wasn't working for you. Since you have those other treatments in the mix you will have no way of knowing what any increase in promacta dosage might do for you. If your doctor plans to keep throwing IVIg into the mix if you go to 50, it sounds like you won't be able to try to increase your promacta any time soon to see if you can get a response.

Good luck figuring things out! I hope you can get a better hematologist who won't throw so many treatments at you at once

Cindy - I wouldn't have any idea how to sort all of that out. What are you doing for the parasite cleanse? There are too many things going on to be able to pin point what is causing what. At this point, all you can do is keep doing what you are doing and wait until the next count. If you are still too high, cut the Promacta dose down.

Thanks! Let me know how the CBD oil goes. Mine is a pill 10mg a day. How many mg are you on? Good Luck!

Hi,
Good advice, thanks!
I am planning to do my next count on Friday so I know I am safe over the weekend.
For the parasite cleanse, I am doing 2 things. First, something called Rife; I had a 1.5 hour treatment yesterday. Second, I started taking pills today from Vitamin Cottage that the Rife lady said to take. They are called Parastroy by Natures Secret

Ahh, 173. Cindy, isn't there a good chance that the reason why your counts are higher this time is because of the Dex pulse that went along with the IVIG this time?

IMHO, your counts fall so often/quickly its hard to give too much thought to anything more than one or two low dose aspirins.

Did you end up not going to 75mg Promacta? If so, will the doc let you take 100mg one day and 50mg the next so that the average is 75mg?

Yea, what's the deal with the doctor not letting counts get below 50? Is it somehow because you're on 75 mg Promacta now?

Good point but I hope you are not right about the Dex keeping the counts up. I am hoping that it is the CDB and Parasite cleanse impacting the numbers positively.
He told me to do IVIG at 50,000or below because he doesn't want me crashing over the weekend and I am such a brittle ITPer I guess. So I'll get the blood checked on Friday and see where I am at before the weekend.
Stay tuned and thanks,
Cindy

Cindy1 wrote: Thanks! Let me know how the CBD oil goes. Mine is a pill 10mg a day. How many mg are you on? Good Luck!

I ordered the SOL CBD tincture that was being discussed here in another thread. It is 5mg sublingually 2x daily. I have been (relatively) stable in my counts, so I figure it's worth trying something new. Even if it doesn't do much for my ITP, maybe it will help with some inflammation and pain I've had in my knee. I'm curious to see what effects I see, if any, over time.

Your parastroy pills look like they have everything but the kitchen sink in them. Keep in mind that some of those ingredients may have the effect of lowering platelet counts. I know you want to find something that works, but at some point you are going to probably want to sort out what is working and what isn't. Dex has side effects, promacta has side effects, IVIg has side effects. If one or more of those drugs are doing nothing for you, it's really in your best interests long term to figure out that it does nothing so that you can stop it and avoid a build up of side effects. I know you are in the early days of treatment, but try to keep it in mind. Throwing more medications at a problem is really not a long term management solution. Hang in there.

I hear you about not knowing what is working! SIgh! So far nothing has kept me stable for more than 2 weeks so I am frustrated and ready to try the kitchen sink. Shoot me! Except one time I lasted 7 weeks and spiked to 1 million after triple antibiotic therapy.
We'll see what Friday's count is.
Never a dull and way too time consuming!
Let me know how the sol works! Thanks for your advice thoughts!!!!!!
Good Luck,
Cindy

Hi,
Count today 12 days post IVIG and Dex burst still holding at 170,000. That is good news for me.
Does anyone know how long a dex burst lasts? I am trying to figure out it if Platelets could possibly be stabilizing after this 6 month rollercoaster?
It could also be the CBD and parasite cleanse.
Also, I am still on Promacta.
Have a great weekend!
Thanks,
Cindy

Cindy1 wrote: Hi,
Count today 12 days post IVIG and Dex burst still holding at 170,000. That is good news for me...

Oh my, not far off the earlier 173. Very little change, interesting. One can have no response from a Dex pulse, one can have remission from a Dex pulse, and one can have any response in between. Typically ones baseline rises with each succeeding pulse. When steroids are combined with IVIG, counts normally go higher and stay higher longer.
With all that you're taking, hopefully your baseline after the IVIG wears off counts will be much better than previous.

Party like it's 1999 this weekend?

Too many variables involved to decide what is working

Cindy1 wrote: Hi,

Does anyone know how long a dex burst lasts? I am trying to figure out it if Platelets could possibly be stabilizing after this 6 month rollercoaster?

There is no standard on how long a dex burst lasts because it does different things for different people. With the amount of treatments you are trying at one time you shouldn't be getting your hopes up from one count that you are somehow stable. Just take each day as it comes and maybe pick a treatment to stick with. If you prefer doing dex pulses, then talk to your doctor about doing those periodically and get off of the other medications. Or if you want to try to give promacta a chance, then stop doing IVIg and dex pulses at the same time and up the dosage on that one. You need to make some decisions at some point about what you want to do. Happy that you had a good count, but hope you can come up with a sustainable treatment plan that is less kitchen sink!

Usually when someone does Dex alone, the counts will rise quickly and fall just as fast after a few days. I've never seen a remission after just one or two pulses. However, when Dex is used with multiple treatments that could change things.

I know you want to get stable, but it's probably not going to happen doing things this way. You have no idea what is causing counts to go up or how long each treatment lasts. You will probably continue to see the extreme ups and downs like you have been. Cindy, you went all the way to Mayo to get their advice and they gave it to you. What more can any of us say?

Cindi
I think what everyone is saying is that you need to do only one treatment at a time in order know what causes changes in your platelet numbers. If you stay on promacta but still do Dex pulses no one can know what is helping and what is not or what might work best. Good luck.

Hi HAL,
Thanks for the info, When I looked back the dr put me on 20mg a day until this last time I was on 40 mg day pulse. At Mayo they did recommend 40mgX4d,
Have a good Sunday.
Cindy

I agree. It was just too hard to wait to start the Parasite Cleanse and CBD with everything the dr giving me over the past 6 months not getting me anywhere except basically a 2 week remission. And my most recent crash after only 9 days (IVIG for 33,000 on Aug 26 ontop of Promacta 50mg since 8/6) and on 9/4 platelets measuring in at a whopping 1,000. I'll take not knowing what is working (and pray something will work) and then doing elimination over that.

It is weird that this is the first time my dr gave me 40 mg dex pulse vs the last two at 20 which did not make aremission impact.

Thanks,
Have a good Sunday.

Hi Sandi,

Thanks, you make a great point about the dex burst and I looked back and saw the 2 he gave me were 20mg, why I have no idead. This time was 40. And 40 mg/dX4 days for 4 rounds is the amount they said at Mayo. So I guess I might have to do do 3 more rounds depending on what happens with the platelets.
That being said....
I am cutting and pasting to rest of my story....
It was just too hard to wait to start the Parasite Cleanse and CBD with everything the dr giving me over the past 6 months not getting me anywhere except basically a 2 week remission. And my most recent crash after only 9 days (IVIG for 33,000 on Aug 26 on top of Promacta 50mg since 8/6) and on 9/4 platelets measuring in at a whopping 1,000. I'll take not knowing what is working (and pray something will work) and then doing elimination over that.
Thanks, I know it gets frustrating answering my questions but it is helpful to me and I do appreciate your advice.
Sandi.
Cindy

Thanks Emily.
Have a great Sunday and be well!

Cindy I see that it is all wearing you down, as it does everyone, over time. There is light at the end of this tunnel. We've been there before.

Certainly if AmberYard says CBD helps her counts, that is some powerful testimony !

When the IVIG wears off and *if* counts fall again there will be a tendency to 'cut bait', throw your hands up, and switch over to what has proven to work - which is Nplate. It may be worth your time to give Promacta a full shot at working. As you can see, that time is like being tortured.

Something to note. I think my insurance would only pay for Promacta for 2 months and needed a count above 50 to extend past that. Might be something to ask about. There are probably extenuating circumstances to that guideline that I don't know about.

Thanks again for your thoughts. You are so smart knowing so much about NPlate and me, etc. I am going to find Amber Yard and read about how much CBD she is taking. I am only taking 10mg.
Thanks!

My platelets today were 112,000 down from 170,000 on Friday. I am hoping they remain stable. I am on the 50 Promacta, Parasite cleanse and CBD but only 10 mg. If I stay around 50 I do not need to go up to 75 mg of Promacta right?

Had IVIG 2 weeks ago along with a 4 day 40mg a day Dex burst. If my numbers go down to 50 he wants me to do IVIG Friday. I think there is something to the Dex burst. Maybe, I just ask for that and not the IVIG if I have some wiggle room at 50,000? That way we'll know like everyone says what is working. Thoughts?

Thanks,
Cindy