Winhro is my next option

ok, so I rode the tide with 16K platelets for 3 weeks on 10mg prednisone. Introduced 1500mg vitamin C and my platelets rose up to 39K within a week. So excited, my Doctor added Vitamin D to my regimen. Unfortunately I got a sorethroat that weekend and my counts at my next appointment dropped to 12K. My Hem is out of town so his backup panicked and has me on 40mg prednisone now . Not sure if it is the sorethroat or the vitamin D that confused my platelets.

So they want to try Winhro on me next. Any ideas anyone? What should I expect as side effects for those of you who have taken winhro?

Couple of things, since I'm feeling like a busybody at the moment. The fluctuation in your platelets between 16 and 39 and 12 may or may not have to do with vitamins and sore throats. That could also be just a normal flucuation for you.

Then, just because your backup hemo panicked that doesn't mean you have to panic. If you are comfortable waiting a few days or a week to see what your count does, and you aren't a bleeder, then you do not have to do what this doctor says. It's up to you. You didn't treat at 16, that's not so different from not treating at 12. You could not treat and have another count in a few days. If he panicked and said to schedule an emergency splenectomy, would you do that? Because we hear about lots of doctors who do advise that.

Winrho sounds like a great idea to try, many have had success with it. It worked for me once or twice and then didn't work any more. Some use it for years, every month or two or three (or six). I had some very mild flu-like symptoms the evening of my treatments if I recall correctly. Nothing at all serious. Many here have recommended having an infusion rather than a five minute push, it seems to lessen the side effects.

Good luck!
Erica

I pretty much agree with Erica about everything. Every time counts go up or down a bit, we tend to credit or blame something. Sometimes it just happens.

Win-Rho is an excellent treatment to try next. It's pretty quick and most have few side effects. If a person is responsive, it can be a great way to manage ITP. I had Win-Rho six times - it never raised my counts at all, but I kept hoping it would because it would have been my treatment of choice. I also felt a little flu-like the day of the treatment, but was okay to work through it.

Thanks a lot Erica and Sandi for the great advice. What will I do without my PDSA fam? My Hem's backup got me in panic mode for no reason but you are right, I should be more in control of my treatments. I will definitely go back down on the prednisone to a reasonable dose. 20 mg keeps my platelets in the 60's so I don't know why she had me go up to 40mg. She used the brain bleed speech with me how I could be bleeding in my brain...bla bla bla....like I don't know about ITP by now.

Luckily I am really not a bleeder. If my counts drop below 15K, I see it on my tongue with one or two dark spots. Other than that, at 16K, I get bruises ocassionally and 4 or 5 petechaie spots on my body. My approach now is to focus on how I feel and symptoms instead of chasing a platelet count.

I will try Winrho next week...I'm a little nervous about the anaemia problems they say it could cause but we'll see. Hopefully I get remission and get off these steriods for good.

I've been doing Winrho every 6-12 weeks since Mar of 2009. They started me out with pre-treatment IV's of a couple of Steriods and Benadryl as a precaution to the side effects they had you read about. Over time we phase it down and out. Now I just do Winrho and I'm in the infusion room less than 15 minutes and take a couple of Tylonal and a Benadryl either before or after the treament. I may have a few mild chills and a low grade fever the first evening, but nothing that a nap with my fuzzy comfort blanket doesn't take care of.

I've had WinRho a few times - the first time I got a massive headache, chills and was nauseous afterward for a few hours. The next time, I looked for advice on this board and took tylenol and benadryl prior to, and after having the WinRho. It made a world of difference - I just felt tired for the rest of the day.

It has worked for me in the past - and has very few side effects when you compare it to other treatments.

I had it three times and my counts have been in the 50-150 range (varies) ever since, almost a year now since my last treatment.

I didn't say that you should go down on your Prednisone dose - going to 40 was a reasonable suggestion considering your counts.

Sorry that we seem to be confusing you. I wouldn't tell you to go AMA, just consider the options available.

AMA? Anyway after being on 10 mg for a month, my regular Hem knows I am not a bleeder so he keeps me at the minimum sustainable dose. The 40 mg for the past 3 days almost destroyed my knees. I am down to 20 mg today and will get to 15 mg before my appt next week. Thanks for all the wonderful ideas.

Against Medical Advice. You know your body best.

Ok, my Hem's backup calls me today and tells me due to new laws, a patient must be admitted in the hospital for 24 hours in order for Winrho to be administered. I guess so they can monitor you. So there goes my weekend.

Anyway, in regards to my counts, I told her how me and my regular Hem use the least prednisone dose possible to keep my platelets up and that I couldn't be on 40 mg as she suggested for more than 3 days because my knees hurt so bad, also told her I have no symptoms so i have gradually come back down to 15mg. She proceeds to tell me how I have gone against medical advice and could be bleeding in my brain and just die and will have no symptoms prior. She spent a good 10 minutes telling me how I should know I could just die a minute without warning from a brain bleed. I told her I know the risks of the disease and my regular Hem has been ok monitoring me on lower doses of prednisone even at counts of 16. Anyway, I don't like her approach at all. I am fustrated to say the least. By the way, the hospital I go to is one of the best when it comes to blood issues but this lady Doctor has just ruined my day.

Where do you live with that WinRho law?
Erica

Oh my goodness! That is one up-tight doc! You know, I had counts of 3 and my hemo waved bye-bye and told me to go back to work. Not that I'm suggesting you ignore her, but if you've been managed a different way by the other doctor and are comfortable with that, I'd question this advice.

@Erica, I think what she was telling me is how that hospital has decided to implement the black box warning or I'm not sure what this rule is about.

@Sandi - I know right but wow, yr doc let you go to work with counts of 3? I remember when I was diagnosed my counts were 2 and everyone was looking at me in the docs office like I was an alien lol.

Great news is my platelet count today was 84 on :lol: 15mg prednisone. So I thank God and will continue to listen to my body. I don't think they will give me the Winrho again this weekend since my counts went up. I think they will try to see if they can wean me off the prednisone again. Fingers and toes crossed this time

I think every doc is addressing the black box warning differently. Since I've had it several times, mine hasn't changed the protocol for me. I'm usually in the office only 15 minutes. In fact, this week I had a nasty sinus infectiona and felt horrible, but we opt'd to do it anyway since I've been traveling so much for work. Good news was I streched the time between infusion out 3 months this go round. One week later, I have a whooping 304! Highest I've been in years.

I am sort of in tears today and just need words of encouragement. Last week my counts were 84k on 20/15 mg prednisone. So I continued to tapper to 10 mg. I noticed petechaie on my body today and some on my tongue which tells me the platelets are dropping again. My petechaie confuses me because even when my counts go up, they show up sometimes so I dont even know what to think...last week's 84k was a boost from 12k the previous week but I had petechaie show up on me the day of my cbc last week . My next appt is on Thursday and I am just in tears now. I've been a good sport about this but this is hard, soo hard. I take vitamins C, D and exercise and still nothing is working. I think they will give me Winrho this weekend, I just have a feeling my counts are down .
I have also declined getting Imuran due to the numerous reports on cancer. So that leaves me down to Winrho or splenectomy I guess

have u tried rituxan?

I did Rituxan in the month of April, that entire month, 1 each week. My response was wierd

The day before Rituxan - counts were 17K (on 15 mg prednisone)
Week 1 - 46
Week 2 - 41
Week 3 - 24
Week 4 - 31

Month of May - dropped prednisone to 10 mg
Counts were 16k, 15K, 16k,

June
Counts 39K, 12K, 84K and this week is still TBD.

So I don't know if the Rituxan is working. My Doctor doesn't think the Rituxan worked

Off to go get Winrho today. Fingers and toes crossed for a remission. I don't feel like I have 12 plts but that is what they say my count is.

Hopefully no side effects. They r telling me i don't need to pre-treat. I don't trust that information, especially since this is a different hospital. I will take the benadryl and tylenol. I'm already on steroids (that I can't get off of no matter how I try bcoz plts go down). Will appreciate any winrho advice. God be my helper today!

I will agree with you that God be your helper today, and everyday! I'm sorry I don't have any winhro advice for you. Can't wait to hear how it went though.

Wow, the Winrho went well. Took less than 10 mins. So far so good and no side effects yet. The experience so far has been way better than IVIG. I will see what this does to my platelets by Monday.

They didn't make me stay at the hospital either after the treatment. i figure if they give this stuff to pregnant women also who are RH negative then I should be ok. Fingers n toes crossed for a remmission. Maybe I could get lucky this time

Good luck! I found Win-Rho to be that easy also. I'm happy for you!