Newly diagnosed

[CrowesyITP]

I was diagnosed in late September 2018 when I woke up with a bloody mouth and oral sores to find out my platelets were below 1,000.... was hospitalized for 3 days and given high doses of prednisone and IVIG treatments.

When I left the hospital my numbers were 98,000 but I saw a steady drop back to 13,000 when it was discovered the Prednisone was not effective for me.

Since then I have done a couple rounds of dex, usually get a decent response but then it all falls off when my treatments come to the end of their rounds.... unfortunately they still are weaning me off the prednisone so I am not seeing results, just the side effects. Uhhg.

I have always been a very healthy person so this roller coasters has been extremely frustrating.... i realize I am still very early in the treatment process, but can’t help but be worried that this is going to be my new normal... I am also a very physically active person, taking the winter season off hockey, and other physics athletics is not helping my mood or mindset...... any advice??

[Sachmo16]

Hang in there as it’s does get better and life will go back to normal once you find a treatment that works. I am 4 years on and have been on a trial drug for 2 years now and my platelets are stable in the early 100’s - it took 18 months to find something that worked which was demoralising but once you get there things get lots better. Still get very fatigued but just look after myself, eat well, sleep as much as I can and excercise as much as I can. Good luck.

[Paul581]

Hi I agree with sachmo16,once your Hematologist finds the treatment regime for you your platelets will stabilize. I failed Dexamethasone, IVIG and Rituxan before I was started on Nplate weekly injections to maintain my platelets between 30 to 80K which allows me to maintain a fairly active life style. My platelets drop with illness to as low as 10-15K which isn’t fun as I have increased fatigue, bruising, irritability and depression. I just completed a two week course antibiotics my counts are slowly recovering to baseline an I’m feeling better.

As you know, there is no cure at this time just periods of remission but research is on going. This site has an excellent educational section check it out and learn as much as you can about our disease and treatment regimes so you can participate in your care. Be well Georgia in Chicago, USA

[christfollow]

I’m also in same situation .. my platelets fell in sept end 2018 after viral fever .. too many treatments @ hospital messed up body and sleep.. now weaning off prednisone.. and taking slow treatments.. my platelets goes between 9k -27k..never went back more than 30k.. been always very active @ gym and followed healthy diet last few years and never had any health problems .no medications.... and now with this I have to deal with high sugar , muscle loss , insomnia , stress.. and medication side effects.. joining this forum has been very educative and I understand this is a slow process. And there is always something that will work .. so I’m being positive now...I hope you find a treatment that works well.. all the best !!

[CrowesyITP in reply to christfollow]

Thanks for the reply. It sounds like we are in very similar situations! I am going through all of the same side effects that you are... have incorporated 4-4:30am into my regular routine! Positivity will get us through this! Good luck with things and don’t be afraid to reach out if you need to vent! I am hoping that this forum can work as a release for me, and it’s so nice to talk to others who understand the frustrations.

[NickyD]

Hi I had to try seven different treatments before my platelets levelled out over several years. My weight went up by 5 stone and my mood was dreadful. I now go to the hospital once every six months for a check up and am leading a normal life. It can take time and we all understand how it feels. Hang on in there. Nicky

[Kyriak51]

Hi, I was diagnosed in early 1990’s after the Cesarean section delivery with hemorrhage and serious infection requiring triple antibiotics for 10 days. I refused treatment with prednisone, preferring to wait for AMGEN to develop a platelet stimulating factor (Nplate ) which was approved in 2008; which time I was too sick to argue about treatment I was given Dexamethasone for 5 days, IVIG, and 4 weekly Rituxan infusions all of which I failed before I was started on Nplate weekly injections in 2010 to maintain my platelets between 30 to 80K which allows me to work and maintain a fairly active lifestyle. Can I go skydiving, play hockey or drive a Ferrari at 140 miles per hour probably not but I’m OKAY with that until they find a cure.

You’re new to this, it will take some time to find the right treatment regime. There members on this site who have achieved 10 year remissions during which time they married, had beautiful healthy children one moved on with their lives until a cure is found.

As far as advice goes, I can only tell you how I feel when my platelets drop to the teens: I have increased bruising (which is bleeding), fatigue, irritability, joint pain, inability to think clearly and depression. Unfortunately we can’t take any antidepressants or non steroidal pain meds such as Advil, ibuprofen or aspirin as they interfere with platelet function. In addition you should avoid or limit amount of fish high in Omega 3 oils such as salmon and tilapia as Omega 3 like nonsterods interfere with platelet function, I limit salmon to once a month. Also when your platelets stabilize, they will DROP with illness, increased stress and depression..sorry.

This site has an excellent education section, check it out learn as much as you can so you can participate in your health care decision. Be well feel free to contact me anytime you have questions Georgia

[CrowesyITP in reply to Kyriak51]

Thanks for the reply. The omega 3 oil information is new to me.... and here I was trying to increase these to help with inflammation etc. Something further to research!