Back again- Looks like splenectomy for me

I thought I would write up all the things I have tried so far for the record. I seem to have a really annoying, persistent case. We are pretty much out of common treatments to try and it has been a year, so I opted for laprascopic splenectomy. I'm scheduled for surgery March 15. Here are the treatments I've been on in order that they were tried:

Dexamethasone- Partial response.
IVIG- Great response. Only works for 4-5 weeks.
Rituximab- No response.
WhinRho- Partial response. Had high fever.
NPlate- Poor response (< 30 at 10mkg)
Promacta- No response

My last count was 13. If I didn't keep dropping back towards zero even on medications, I would probably just opt not to treat since my bleeding symptoms aren't that bad. But my hemo and PCP don't want me walking around with <10 platelets which is what would happen. I hate being on IVIG. They have to do the infusion over the course of six hours or I get migraines and a fever. This last one I could not eat for 20 hours my stomach was so upset. I don't know why I'm having so many issues with treatment.

Anyway, here's hoping the splenectomy works! I want this over with and behind me ASAP!! So sad to have missed out on this great ski season. I hope the rest of you are doing well on your ITP journeys.

CJ_Goes_Hiking wrote: ... I'm scheduled for surgery March 15...

Oh no. Nplate/Promacta didn't work either, even at max dose. Good luck with the splenectomy.

Just in case, let me tell you about a couple of recent treatments by others you may not have read. Jason found this on stem cell transplant.
pdsa.org/discussion-group/7-treatment-general/30267-umbilical-cord-stem-cell-treatment-has-serious-potential-for-refractory-itp.html#65740

And this by 'A Clow' on the drug Velcade, aka Bortezomib.
pdsa.org/discussion-group/7-treatment-general/30247-another-year-and-another-new-drug-velcade.html#65527

At this time, neither have reported back good or bad results.

Hi CJ,
In my research on behalf of my son, I came across compelling arguments that not all IVIG preparations are created equal. I understand there are at least half a dozen prominent brands globally and some people react badly to some but not all of these. If my memory serves, the preparations with sucrose, glucose, sorbitol, etc. tend to be more problematic, depending on the patient. You may want to ask the pharmacy to obtain a "sugar free" preparation and try that before giving up on ivig altogether. You may also want to experiment generally with different brands since they contain different substances in trace amounts. Or you may be absolutely done with ivig!
In addition, I have read about sub-cutaneous immunoglobulin although this is not widely practiced with ITP patients. Search for "Adverse effects of immunoglobulin therapy" by Guo et al. in Frontiers of Technology 2018; 9:1299.
Wishing you best of luck, whatever you decide.

Hi CJ,

You have a great response to IVIG. A month or more is really good. It’s too bad about the side effects.

Not to talk you out of the splenectomy, but Maria’s response is good. I have read similar things as well. IVIG side effects can often be decreased a lot by paying attention to brand, speed of drip (as you know) and pre-meds. Do you know if you’ve had the same brand and if it has always been administered the same way? For me, IVIG is an all day infusion as well and I still have some headaches but nothing severe.

Also, just curious, have you tried the above treatments in various combinations?

I hope the splenectomy works wonders for you and you never have to worry about ITP again!

Did you try any of the immunosuppressants? Mycophenolate is widely used here with good results but there are others.

I have been on prednisone since, August of 2018, they keep winning me off, but my platelets have a mind of there own. I did try ivig and I had the same reaction with the migraines and feeling sick to my stomach. So we didn't do that anymore and it was temporary. I never had this problem arise until after I had my hysterectomy last December in 2017, now I have spontaneous vaginal bleeding, and I'm needing help on how to stop does anyone have any suggestions on things that may have worked for them.

Well, there are many options other than IVIg and prednisone. Are those the only treatments you have tried? What does your hematologist and other specialists say? If you want to stop bleeding short term, talk to your hematologist about tranexamic acid. For long-term stability you will just have to try other treatments until you find the one that works for you. There are many, so you have plenty of options.

I'm not sure what you mean by 'temporary' but generally (until remission) drugs have to be given or taken on a regular basis.

I might be more concerned about bleeding now after a hysterectomy over a year ago. What does your GYN say about that?

IVIg is a temporary "fix" - it usually doesn't last long. How are you tapering/weaning off of prednisone? They dropped my dose too quickly & my count decreased drastically. Did prednisone raise your count?

Yes the prednisone did raise my count and keeps it stable at the moment, I was on 100mg, to now only being on 40 mg, they were trying to put me to only on 20mg, but platelets went back down. And as far as the bleeding the obgyn cant tell me why, and referring me to someone else, to see if they can figure it out, I need answers and help, cant keep bleeding like this, desperate and scared.

Today's Hematologists do not recommend splenectomy generally. I would get a second opinion from Dr. Cuker at U. of Penn. It didn't work for me and with I hadn't done it.

Jerry Spaniol

Well I am out of surgery and doing great. Very little discomfort and the procedure was completed successfully laparoscopically. Waiting on labs and discharge now. The surgeon said it went pretty much perfect. One small accessory spleen was found and removed. They kept me here overnight and I get to go home soon.

I waited a year, tried six different treatments, got three different hematologists to weigh in including the head of hematology at OHSU. All agreed I was a good candidate for splenectomy.

chajohnson wrote: Yes the prednisone did raise my count and keeps it stable at the moment, I was on 100mg, to now only being on 40 mg, they were trying to put me to only on 20mg, but platelets went back down. And as far as the bleeding the obgyn cant tell me why, and referring me to someone else, to see if they can figure it out, I need answers and help, cant keep bleeding like this, desperate and scared.

My story might help you. Give me your email address.

Curtweluv@gmail.com

I realized after I posted that it was post surgery. Hopefully it will work. If not, I would go to Dr. Zumberg at the University of Fl. or Dr. Cuker at U. of Penn. and get the leading hemos on your case. Dr. Zumberg put me on a combo of N-Plate and Cyclosporine, which I believe lead to me presently being in remission. Dr. Cuker concurred with treatment and eventually tapered me off of both drugs. Had my last N-Plate shot and last dose of Cyclosporine last Oct. 17. I had a very difficult case where nothing was working for quite a few years.