My journey with ITP and Acupuncture

So this is my second round with ITP. The first one was scary, but I had a great hema Dr who helped me through. He gave me Rituxan which lasted almost 5 years. Now here I am again.

I've been going to an acupuncture Dr for a year. She has helped me a great deal, for one thing getting rid of my eczema which has plagued me most of my life. A couple of weeks ago, before I knew my ITP had come back,I heard another patient mentioning how My hema Dr had recommended this other patient come and have a few sessions with the acupuncture Dr. I was surprised. Apparently they don't really know each other, but my hema Dr must have heard about her (the acupuncturist's) good reputation.

Let me tell you a little about my acupuncturist. Not all acupuncturists are so highly qualified. She learned acupuncture from her grandfather when she was young. Then she got full medical training in China and is a fully qualified Dr. there. She worked in big hospitals in China even as a surgeon. (She said she had a scalpel in one hand and a needle in the other.) When she moved to the US they told her that if she took 2 more years of training she would be a fully qualified DR in the US. But she decided not to go that route and instead opened her own clinic fully certified as an acupuncturist.

So when I woke up yesterday with blood in my mouth, I called my hema with a plan in mind. The staff did a CBC and the results were available in 10 minutes. My platelets were 11,000 and my WBC was also low.I have always had a partnership relationship with my hema. We come up with an action plan together. He takes time and listens carefully to my concerns and he expresses his. I love him! Here's our plan. I had an appointment right after his (on Thursday) with my acupuncturist. He would give me a prescription for predisone to take with me. I will get a CBC on Monday, if the acupuncturist cannot raise my platelets by Mon. to 40,000 I will take the predisone. The predisone is also for any bleeding that might happen before Monday. The challenge is on! Will I be able to stay of the "Dread Pred"? Or will I have to submit!

My acupuncturist knows the risks of pred, even quoted them to me. She wants to see if I can keep off them. She gave me acupuncture, massage, herbs, tea, and a vitamin B12 shot. AND another appointment on Saturday.

Sorry it's so long, but I wanted you all to have enough background info.
Stay tuned...

Thanks for sharing your story ananta!
All the best to you in your journey to treat ITP again.
Will stay tuned...Good luck!

So today was the day. My platelets count was 7,000. Rats! I felt really good, and thought they had gone up. So my short term acupuncture was unsuccessful from one level. But I have had no bleeding issues. I received no therapy from my hema. Only from the acupuncturist. My blood in the mouth stopped, my bleeding gums stopped, my tiredness has stopped and my new bruises have stopped. My WBC went up. (It tends to go down with my platelets.)

My acupuncturist said if it was her, she wouldn't take the pred.just continue with the acupuncture since it might take a while for the numbers to improve. But I promised and I don't want my Hema Dr. to get too frustrated with me. Besides he wants me to have another CBC on Thursday. If they aren't up, he will definitely know that I didn't take the pred since I do always get a good temporary raise from it.

I did get him to adjust the dose from 80 to 60 pointing out that 60 had always worked in the past. But I'm not taking them today! I want to get one more good nights sleep!

So my next plan is to continue the acupuncture. Since I know that my platelets always drop along with the dose, perhaps the acupuncture will kick in as the dose of pred goes down, and I won't have to have any more therapies.


The Road Not Taken by Robert Frost
(last stanza)
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.

Ananta, I'm a believer in acupuncture from years ago when it resolved a problem traditional medicine and PT couldn't.

I doubt there's a single one of us who didn't wish or pray for relief from those side effects!

Since you should taper your pred have you considered both? I can't cite statistics but believe there are some potential serious issues dropping Pred vs a taper. It's your choice to accept the Rx but you can tell the MD you're DONE and ask for the fastest taper schedule (mine was 5mg/week but maybe there's a faster and safe schedule).

Hi Steve,
You are totally right, it is very dangerous to just stop pred instead of tapering. A person could die. But I think Ananta is saying she isn't at this point on pred, she is supposed to start taking it but hasn't yet.
Erica

Yep, Erica's got it right. I haven't started the pred yet. I will start tomorrow on the 60mg level. One night of blissful deep sleep!(:pinch: that's me snoring!haha)

I'm sorry the accupuncture didn't raise your platelets. Over the years, I've had several accupuncture sessions, and while they haven't done much for my platelets, they definitely work for the insominia and generally having more energy for me.

I went to have 8 treatments and take additional suppliments. My platelet count went down. I am not sure how the treatments would help and how long treatments need to be taken. I would like more information about others and if any treatments work for any ITP people.

So in this thread I'm seeing I think four people who have used acupuncture and it did not raise their platelet counts although some saw other benefits from the treatments.

Did anyone have acupuncture and get higher platelet counts?

I also was wondering, did the acupuncture person tell you it would raise your counts?

When I asked my doctor about Rituxan, he said 'I'm familiar with it but in my practice I have not had success with it with ITP - but we can try it and see'. It makes me crazy when I hear about doctors telling patients 'oh yes you will be cured by a splenectomy' or whatever, that is not fair to say when you supposedly have authority and knowledge.
Erica

My favorite part was the Acupuncturist saying she would not take the Prednisone but would continue with acupuncture. Funny, it's not her and how would she know she would feel comfortable with a count of 7 for an undetermined period of time? Ananta - you do what you are comfortable with - it seems as though you are.

Erica, my acupuncturist said she hoped that my platelets would go up.

Here's how I saw it Sandi, there are 2 ways to approach the ITP, numbers and symptoms. The acupuncture did well with symptoms which is good, especially if you can go often and quickly if things get worse. I had skipped one week of acupuncture because I just didn't have time. I had some solid wall deadlines at the school I work for. That skipped week lead to waking up with blood in my mouth.

In dealing with numbers, for most people, good numbers means less likely anything serious will happen to you. Sure you might get bruises or be tired, but nothing life threatening. You don't have to worry about getting in a car accident and bleeding to death while waiting for help. (That's what the nurses would threaten me with. I haven't been in a car accident since 1986)

So to me numbers are safer. If I had enough money, I would do both and see if acupuncture could help in the long run. But the acupuncture is not covered by my insurance, and I don't get paid in the summer when school is out.

As for my acupuncture's reaction to taking prednisone, I asked her what she had to say about it. She said she couldn't say. She's not legally a Dr. and respects that. So I asked her what SHE would do. She said she wouldn't take it. You have to understand, she never goes to other Dr.'s just cures herself. She was recently in a car accident and treated herself for whiplash. The police told her to go see a Dr. and she said she is a Dr.

I have come a long ways in just one week. From wanting only to treat with acupuncture to agreeing to steroids to wanting to surge on ahead to Rituxan and getting on with my life. I have been to 7 Dr. office visits, (usually 2 in a day, 1 for a CBC, and one to the acupuncturists). I am not sleeping at night, I am exhausted by 3PM, there is so much work that is not getting done. I want my life back. I want to go back to my 4.5 year remission!

Ananta:

I definitely agree that numbers are safer. I think we all feel that way. Just curious, if you had the money, how much time would you have given acupuncture?

I just don't buy the fact that someone can cure themselves of everything and anything. I understand that you asked her what she would do, but I don't think she can really answer that unless she were in that situation. I would probably be able to treat whip lash too - devices can be easily bought in drug stores and reading about exercises and treatments would be pretty simple. ITP is different; you need prescriptions unless you go alternative.

I hope you do get your life back, and soon! I know what it's like.

i also tried acupuncture. my platelets went from my usual 9 to 17, so i thought maybe this was it. next draw it went to like 12. i had a few more sessions and it was pretty much the same. the thing is that acupuncture would be part of an overall plan of health. one thing i do know. if people believe you cannot heal yourself with natural medicine regarding diabetes, cancer, itp, heart disease. maybe its true. but then, the following would be true.
natural cures = zero
american cancer society, american diabetes society, etc etc...cures = zero

so its a tie

Freckles, you're pretty much right about that. That's why people keep dying.

Sandi, If I had the money I would continue the acupuncture for 6 months. Natural treatments take longer I think. Because they are not forcing the body to change.

Freckles, I have a great book called "The Placebo Response". It has amazing stories and controlled trials documenting the placebo effect within conventional and alternative medicine. It also has great sections on how important it is to take charge of your own health and having a partnership with your doctor. Both which lead to better outcomes. Think I'll read it again!

But I did go into the acupuncturists completely convinced my numbers were going to go up. I was in total shock that they had gone down!

Yep, as far as the mortality rate, It's 100%. Everyone dies!

Today my platelets were 57k. Tomorrow I reduce my prednisone to 4omg.

Freckles - it always brightens my day to see you here. Thanks!

I would like to mention that years ago, I was on a trial for a certain medicine for anxiety and sleep problems. I wasn't sure if I was on the placebo or the new medicine. Well, I kept calling the doctor from the trial letting him know I was having all these problems from the medicine I was taking. Finally, after about 3 weeks, I was eliminated from the trial because I was actually on the placebo! It's hard to explain; another doctor I went to told me that the placebo effect usually only lasts about 3 weeks--then you start to realize that it really isn't the medicine (of course, when you have anxiety, you get all kinds of strange reactions in your body).

I also wanted to mention that to some people, some herbal remadies can be harmful--just like medicine--so you do need to be careful of both (I use to take some herbal supplements that did cause me some problems--like sharp pains in the stomach and chest).

Hi Ananta,
I wondered how you were doing with your counts and the prednisone taper. My doctor tapers me quickly, in one month I went from 30mg to 7.5. We tried a slower taper before, but for me it does not seem to make any difference in my counts. The problems from prednisone are awful though. Too bad you cant continue the accupuncture which might help with the insomnia and other pred problems.
I work in a school as well and don't get paid in the summer either so I know how you feel about not spending the money.

Dru

Gee thanks for asking Dru. I dropped from 60mg to 40 mg of prednisone in one week and my counts dropped too! I was at 57k now down to 26k. That's the short answer. If we don't lose our electricity with the coming rain storm (which almost always happens here,) (( feel like we live in India in the summertime, since it is common to lose electricity there any time of day or night)), I'll post the long answer in the general ITP section.

Has your hema scheduled your Rituxan? And if so, are you going to try a shorter course or a smaller amount?

No she didnt schedule the Rituxan yet, she did the insurance authorization, did the blood work check on Hepatitis C, and I gave her the 2 articles about the shorter course and lower dose of Rituxan. Today my platlets were about the same as last week 171,000 on 7.5mg prednisone for the past week. Even on that dose I am edgy and anxious, but am sleeping better. Since my platelets were good and she was kind of in a rush today we didnt really discuss Rituxan. She just said that we will decrease the pred to 5mg now and see what happens. She said that while it is good they are stable now she suspects I will have to have the Rituxan at some point. My past history is of fast crashing, going from 170,000 to 17 in a week so I still have weekly checks.

What are you going to do Ananta? Are you going to go for the Rituxan, or wait? What are your thoughts about trying the lower dose or course of it?

I'm waiting for my hema to get back from vacation. I already sent him an email saying I want to forget this prednisone, which isn't doing much and move on to Rituxan. I sent him the link about doing fewer infusions and asked him to consider it. The thing is he was part of the team who did the original trials of Rituxan for lymphoma and insisted on giving me 6 weekly doses. So he might not be enthusiastic about 2.

I am anxious to get on the Rituxan and get it over with. My ophthalmologist wants to get my hema's OK to do my cataract surgery. I want the surgery before I go back to school in mid-August. So I want to try to speed up the process. Ahh the plans of mice and men!

My next appointment is July 5th.

Maybe you can at least get your Rituxan in 4 weeks over 6 as that seems to be pretty accepted practice. My next appointment is July 5th too. I'm kind of hoping that if my platelets are going to crash they do it now! I guess that is an awful thing to wish for but it would be so much easier to go through the Rituxan treatments when I'm off this summer rather than completely mess up the beginning of the school year. But, maybe this time they will just stay at the present level for a long time, that would be even better.

Ananta, I'm surprised that your ophthalmololgist feels he needs your hema's okay before doing cataract surgery. When I told my opth I had ITP, he said it wasn't a problem--there was no bleeding involved. I had both cataract surgeries with no trouble at all. My platelets were about 23K the second time, a little higher the first surgery.

Karen,
I was thinking about what you said and realized there are three things that may have made my ophthalmologist a little cautious.

My eye doctor used to be in internal medicine and knows all about ITP even it's possible triggers.

My eye dr and hema are really good friends, there may be some dr to dr protocol.

Oh, and perhaps the bigger reason, I had had a vitreous hemorrhage, bleeding in the back of the eye, at the end of May. I was having bruising but hadn't yet gone back to my hema to see if I was out of remission. It was definitely on my mind with the eye bleed. My eye dr thinks the ITP was behind the eye bleed.:S

So Dru, what happened at your appt?

I am doing 4 weeks of Rituxan starting on Friday. My hema said cataract surgery can be done when I am at 40k. Last time that only took me one week after the first Rituxan treatment. Count was a little higher today at 35k.

My platlets are dropping, but slowly and at 136,000 this week. So I am going from 5mg pred daily to 2.5 one day and 5mg the next day. We will see what happens next week, usually after 5mg my counts fall quickly, but we will see. So let us know how the Rituxan goes Friday, Good luck!!! Do you have to take pred along with it? My counts were very slow to rise with the Rituxan and I needed some pred too to keep me over 20 plt count.

Let's move the discussion, since it will be rituxan related now. I'm going to general treatments ...