Treatment options for crash after stopping Nplate

Hi, All.

I'm wondering if any of you have had experience with stopping Nplate abruptly, and if so, what you did for treatment during the two week period when your TPO wasn't functioning?

I took Nplate for over a year. It worked really well for the first 11 months, maintaining platelet counts of between 30 and 260. The effectiveness started to drop when I attempted to return to part-time work in April. By June it had pretty much stopped working: from mid-June through August, my platelets were between 3 and 6. I first tried stopping Nplate in July, but my doctor put me back on it after I skipped a week and my platelet count dropped to "undetectable."

I decided last week to completely stop the Nplate because I found out that the skin rashes I developed following the shot tested as being drug-related eczema. My ITP may be related to a mast-cell disorder, so any treatment that worsens my allergies is out.

So the question is, is there anything I can take during the next two weeks that will help me create some platelets quickly? I want to avoid IVIG. Has anyone tried pulsed dexamethasone for this?

To put this in context, I've had ITP on and off since 2003, and once went a year with less than 5,000 platelets. I'm not a bleeder so long as I'm very careful about physical activities when my platelets are low.

Thanks for your help.

Cathy

Cathy, I am very curious about your possible mast cell disorder (mastocytosis?), and that it might relate to ITP. I have never before heard mention of this connection.
Has this actually been diagnosed, or is it suspected?
How does the mast cell disorder influence treatment? Do antihistamines help the ITP?
I would appreciate in information you might have on this topic.

The reason for my interest is that my wife, Ellen, has ITP and also has suffered for years from chronic allergic rashes for which she takes antihistamines daily. Lately, she has had lower platelets than usual, and she has not been taking her Claritin, which I learned just last night, and wondered if there might be a connection, and then read today for the first time that in your case there may indeed be a connection between mast cells and ITP.

Has anyone else here heard of this connection?

Cathy,
A year ago, I had an infusion of Solu-Medrol after my count fell to 9. It quickly rose to 199 within a week and stayed up for about a month with the support of 20 mgs predisone daily.

My understanding is that Nplate doesn't stop the body from making its own TPO, it's not like steroids where you have to wait for the body to start up again. Chances are that if your count falls low when you stop the drug then it will stay low or do the normal ITP fluctuation. When you stop Nplate you are simply back where you started before using it.

There tends to be more bleeding when falling sharply from a high count to a very low count because of reasons of platelet size which does sort itself out but if you are falling from a low count in the first place you aren't going to see much more bleeding than usual.

So really you are back where you started with all the drug choices that we know of. It depends what you've already tried and what works for you as to what you try next.

There is actually a warning on nplate that count may be worse after stopping suddenly. Where I agree it's usually just back to where you were before starting nplate. With no treatment my counts are 1-5 after stopping nplate my count went right back below there the only thing I noticed when stopping suddenly was my symptoms were worse then they ever were slot of petechiae and mouth blisters but I was put back on ivig because I'm pregnant. It's not the most ideal option but unfortunately the only one I have. I've now been on ivig for 5 months and have 2 left to go until my baby is born I wish steroids worked on me but they don't but don't forget how harsh steroids can be also. I was on them the first 3 years I was diagnosed I have deteriation of my neck muscles my joints were a mess for along time. Lost a lot of hair gained a lot of weight I started out my itp journey at 103 pounds I was once up to 220. Up to you what treatment you want just remember all the side effects with them all. Nplate for me used to be all over the place I've been 0- 950,000 platelets and when I got that high it caused me to have a stroke at 25 years old my dr will not allow me over 60 when I am on nplate I plan on continuing nplate after baby is born. Unfortunately all the drugs have their vices and I am hoping thre are some things in the works for itp cause I don't know about you guys but I'm over having itp lol

Hi, All.

Thanks for your responses. It helps to know that there are other people dealing with these issues.

Kelirae, I hope the rest of your pregnancy goes well. You've been through a lot already!

As you noted, the warnings for Nplate mention that suddenly stopping it results in major platelet drops that last about two weeks. Before this summer, my platelets had dropped to under 5,000 from safe levels the three times I skipped my Nplate shots due to being on vacation. Those times, I restarted the shots after the missed week without problems. So I'm a bit concerned about what will happen if I miss treatments for two weeks or longer.

I meet with my doctor next Wednesday, so will see what to do next. In the meantime, I will use two products that have helped me deal with low platelets in the past. The first is Reviva Vitamin K cream, which is available in health food stores. It seems to prevent the development of petechiae when I rub it on my arms and legs as a preventative measure, and it also seems to clear the actual bruises faster than doing nothing even when the platelet count doesn't improve.

The second product is a Chinese herbal patent formula called Yunnan Baiyao (or Yunnan Paiyao). This is a formula that North Vietnamese soldiers carried during the Viet Nam War to treat gunshots and other bleeding while in the field. I get it from a Chinese herbalist; some acupuncturists may carry it as well. I take 4-6 tablets per day as a preventative measure. I would only take it under the supervision of a professional in Chinese medicine, however.

Thanks, Midwest6708, for your recommendation about the Medrol, and Ann, for your encouragement, too.

Rob, I have not yet been diagnosed with mastocytosis, but do have some of the symptoms: very hypersensitive to food allergies, other autoimmune disorders (Reynaud's, previous asthma, skin disturbances), red face, and my skin flushes from pressure (demographism). The Nplate was working when my blood histamine level was normal last fall, and stopped working when the histamine levels went abnormally high in the spring following a period of stress. It turns out Nplate contains L-Histadine, a histamine precursor, so if I do have a histamine disorder, that could also explain why it became less effective in my case.

So far as I know, no scientists or drug companies have published research on the histamine-ITP connection. But there are some reasons to think they may be related, one of which is that platelets carry histamine, and have some function in the immune system that is just beginning to be understood. And in my case, there is circumstantial evidence for a connection.

So have your wife test her platelet count with and without antihistamines to see if it makes a difference, and let us know what she finds. I'm continuing to look at research and websites related to mast cell disorders, and will be seeing a couple of alternative practitioners in the next couple of weeks for their ideas on how to treat my histamine problems. Will let you know what I find out.

Best to you,

Cathy

I think it's important for others who may read this to know that during trials for Nplate the number of patients who had a major drop on cessation was actually very low. It isn't as common as people imagine.

Hi. Just wanted to update you on how I dealt with the platelet drop after stopping Nplate.

Two weeks after my last shot, my platelets had dropped to around zero. I developed a slow gum bleed that for two days would temporarily stop and then start again whenever I ate. My doctor gave me Amicar, a drug to stop bleeding that one of the doctors had mentioned at the PDSA conference in July as a rescue drug. The first dose of 1,000 mg stopped the bleeding. I took the Amicar for three days (1,000 mg every 6 hours) as a preventative measure, and during that time my gum healed and there were no other bleeding incidents.

I also tried a 4-day dexamethisone pulse to raise the platelet count. As a result, they went up to 5 by the following week, which was my base count when I started the Nplate. So even though that is pretty low, it's a level at which I can function so long as I'm careful.

So now am continuing to research the relationship of my ITP to my food allergies, and looking for alternative treatments to address them. Will let you know what I find. Best to you, Cathy

Another update: two days ago I developed another small gum bleed. This time I took the Chinese herbal supplement I mentioned In a previous post: yunnan paiyao. It stopped the bleed within an hour. I'm continuing to take 6 capsules per day because it also seems to reduce the number of petechiae that develop on my legs and arms. I used to take it all the time when my platelets fell below 20,000, and that may be why I've never experienced a major bleeding incident except for one time when I tripped and bumped my leg while hiking with a 9,000 platelet count.