Diagnosed Dec 2021 with ITP. Have tried Prednisone, IVIG, Dexamethasone
Revolade and now Rituximab. My platelets have always been 100-137 prior to Dec. I had a very bad bladder infection and platelets dropped to 1 and have not recovered. I have had no episodes of bleeding. Could I have been misdiagnosed?
What is my next step? My doctor says to have my spleen removed. Any comments
Sorry to hear that you have been having such a difficult time Bradyella.
The following video may help in that it goes through all of the current ITP treatment options.
You will see from the video that having the spleen removed is very much a last ditch option nowadays so I would definitely be very reluctant to go down that route.
I have been living with ITP for 15 years and like you I have had Rituximab which did work for me on the 2 occasions that I had it. I got about 2 years and 8 months remission from it but I did lapse again in 2016.
Since 2016 I have been on Mychophenolate Mofetil (an immune suppressing drug) and that has kept my platelet count at normal levels.
I hope that this all helps.
You will also see that there are plenty of other ITP videos on the ITP Support association You Tube Channel so please do have a look at those to.
Also you may find the following links helpful -
globalitp.org/index.php/pat...
Best wishes
Anthony Heard
Hi ,BradyellaI m also having ITP from past 5 years and already had taken treatment of revolade, prednisone, rituximab, Danogen and ivig. Currently m on injection romiplostin and now my platelet count is stable from past 6-7 months. Its arount 1 lakh. So, please don't lose the hope. We also can live a happy nd cheerful life by keeping a positive attitude
Have you had any gastric investigations to see if you have any leaks internally or had a bone marrow biopsy to see if your viable for taking revolade / Eltrompag tablets which is what I am on and have worked for me
I am on N plate romiplostin 💉 had the other meds, revolade made me loose my hair. Not looked back since having these. Platelets up and down abit but managing ok. Got to be able to inject yourself but teach you how to do it. Diagnosed August 2020.
I’ve had a platelet count of 7 for at least eight months.(My platelet count had always been perfect until then.) I did have symptoms at first, but they disappeared. I did not seek treatment because of Covid raging in my area and I felt fine with the platelet count of 7. I’m going to a hematologist in a couple of weeks. I’m not much for taking medications when I feel great. I’m 74.
Hi Bradyella, Interesting that your platelets dropped after having a nasty infection, there have been several stories of infection related platelet problems, maybe someone else on the forum could provide more information. Diagnosed December 2021?For me Rituximab was a life saver, like you I had gone down a similar route, although not Revolade, and nothing kept my platelets into anything above the low 30s for more than 2-3 weeks after which is was back to the emergency course of high dose Dex for 4 days followed by 2 days of IvIg infusions. Discussed options with my consultant and opted for Rituximab - 4 infusions each one a week apart and while it took almost 4 months platelets gradually increased from 0 to 109 at month 4 and steadied at 137 for the next 15 months before crashing to 7, but I had 19 months of remission.
Back on the emergency intervention for 3 months during which time I had further discussions with consultant, was given lots of additional information - spleen removal was not in the equations as far as I was concerned, and consultant agreed. Finally decided on Romiplostim (NPlate), minimum dose once every 2-4 weeks platelets at anywhere between 170 - 230. Currently in remission for almost 11 months, had slight blip after Covid vaccinations but platelet count still in the 150 - 180 bracket.
Re spleen removal I can't advise you one way or another, but there are several more treatments you could be given that are significantly less drastic; I would be asking some very serious questions of my medics.
Hi Bradyella,
First, I am sorry that you are having this ITP issue!
I wanted to share my story in case it is helpful. It may not be appropriate for your situation but in 2017 I read a post about a gal whos ITP issuie was cured after h-pylori was identified and treated with triple antibiotic treatment after a 3 week course of antibiotic treatment.
I have not been on any TPO, IVIG, steroid, etc therapy since October 2017 with platelets stable at 260,000.
Here is a brief summary of my ITP journey… I needed IVIG every 2 weeks for 6 months (5/17-10/17) after I got an infection of some sort: virus, bacteria or parasites from a trip to Costa Rica in April 2017 that caused my body to attack it's platelets. But the infection could not be identified through blood or stool samples. My ITP started 2 weeks after returning from Costa Rica.
Here are some important facts:
1. ITP Course – Western Medicine– May 2017-Oct 2017
I spent May 2017 through October 2017 taking many ITP medications including NPlate, Promacta, Prednisone, Dexamethasone and getting IVIG every 2 weeks for platelet counts 1,000 – 7,000.
***I was CURED from platelet crashes and need for IVIG in October 2017 within a month of doing Rife therapy.(cell membrane destroying ultrasonic waves), parasite over the counter cleanse and Avatar guided homeopathics.
(Over the next six months, I slowly weaned from Promacta and Prednisone)
2. Details ofAlternative Approach –
***Rife Vibrant Healing Center 303-979-5736
Rife treatment uses ultrasonic waves to kill the membrane walls of the organisms targeted. In conjunction with three Rife Treatments, I took Parastroy an antiparasitic medication.
*** Alternative Approach-Avitar Machine-September 2017 to present.
Elliott Smith 303-504-3600
I got rid of any lingering viruses, fungus and bacteria and rebalanced my immune system through eastern-based homeopathy treatment. The Avitar machine checked my organs using acupressure points on my feet. Once it was determined what my body needed, Dr. Smith selected homeopathic pills and elixirs that treated viruses, fungus, and bacteria and rebalanced my immune system. Additionally, I went gluten free.
3. All Western medical doctors, (and I went to many well recognized specialists. They believed there was no correlation between the low platelets and an infection. It was believed I had an incurable autoimmune disease called idiopathic thrombocytopenia, forever. I am hoping that this letter helps you to understand that there may be a cure for ITP that is caused by an UNIDENTIFIABLE foreign organism or virus infection in the body. It is my hope to make as many people that can benefit from the type of treatment aware of it. Because I was to the point of being convinced that my problem was not associated with an infectious disease because the doctors kept telling me that. And whatever I had caught could NOT be found.
4. The alternative treatment was done without any positive lab reports since infectious disease doctors were not able to find any infectious organisms in me. They were like a ghost infection that could not be seen.
5. I would highly suggest you get checked for h-pylori because there is research that has shown when h-pylori is eradicated ITP can be cured.
I feel so blessed that I am well and I feel obligated to help others with ITP. That is why I am sharing this information with you. Again, be safe and work with your doctors before trying anything.
Please feel free to contact me to get additional information or detail about my journey.
Please keep me posted and be well.
Best
Remove your spleen all of these medications have lasting painful effects. Listen to your doctor
Promacta.
Hi BradyellaDont have your spleen removed. I had mine taken out years ago and it made no difference to my ITP. Now I am prone to all sorts of infections and have to take penicillin twice a day every day.
Nicky
Bradyella - I cannot speak to many of the medications available for treating ITP, but Promacta (eltrombopag) has worked for me for several years now. I agree with others that spleen removal should only be your last option.
Got mine in dec 2009 it was 2,000 before a trip to California! And wasn’t stable for 13 years till my spleen was removed in 2018, if you need a second opinion try that before removing spleen do the indium scan to see where platelets are being destroyed I. Spleen or liver! Wish you the best I have had it forever! Love ~Mona
There's a test you can get before getting your spleen removed to make sure that's even what your body needs. Do not get it removed unless you are tested first. I had to travel from NYC to london to get this test done. I found out it is not my spleen causing the issue. I'm thankful i made the trip. I'm currently on Doptelet - the only drug that seems to be working for me.
Recheck with another doctor
Advice please - operation pending
3 year old child with newly diagnosed ITP advice please
Hyperbaric chamber treatments have raised my platelet count. 
Eltrombopag - advice?