I have recently redeveloped ITP after 10 years in remission. Unfortunately the only treatment that worked for me back then (excluding spleenectomy) was an experimental Leukaemia IV course which no longer exists.
I found my ITP has returned after a head injury snowboarding (snowboarding with unknown ITP, excellent choice).
I started with 9k, it dropped to 6k by the next day… stayed stable on 6k for 2 weeks on Eltromopag, jumped to 11k and now is down to 3k still on Eltromopag 75mg
I know energy drinks and diet coke are bad for you in general, but do we know the extent to which they may affect platelet count specifically? I’ve been super tired due to the illness but still had to go to work (im freelance, if I don’t work I don’t get paid), so I’ve been relying on the devil drinks. I will try to lay off them now just incase, but it would help in my mind to know any solid information that backs up their involvement with platelet counts if anybody knows?
Cheers
Charlotte
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Cheshirecharlotte
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Good question but there is no clear answer. For my doctor those drinks will not affect my counts. I heard that some disagree. I drink coke and aspartame in chocolate powder all the time. My count are stable around 100K but the trick is done by Eltromopag. I am reducing my dose thou. From 75mg a day to a 75/50/50 cycle....
Thanks for your response! I’ve tried to cut down on the energy drinks which has been easy so far as I’ve not been working as much.Unfortunately the Eltrombopag hasn’t worked for me. It’s been 7 weeks and my count hasn’t surpassed 6! I ended up hospitalised due to having a really bad migraine that they thought could be a brain bleed but luckily a false alarm. It did prompt them to make me take prednisone though even though I hate it. 20mg then up to 40mg…
Also my specialist wanted me to do the weekly stomach injections I can’t remember what they’re called? But she recently found out the ‘experimential cancer treatment’ that worked for me when I was 16 was actually Rituximab which is widely used for ITP now.
She said it’s not been standard practice for a while due to the risk of covid as it gets rid of your immune system for around a year but she ended up letting me go ahead with it as it had such a success for me before and I was in full remission for 10 years after only 4 weeks of treatment.
So this starts tomorrow, I’m tapering off steroids, off the eltrombopag and will see how it goes!
Hi Charlotte...sorry to read about your injury and the resulting return of ITP. I'd try a more natrual approach to give you some energy. I've changed my diet since ITP made a guest appearance 😉 and my platlets have jumped and held. Im on no meds 😊. Im in no way suggesting its a cure all but im convinced that since going vegan and gluten free its massively helped. 🤗😍. X
Yikes! I know the rollercoaster platelet ride. I have been hospitalized 5 times with relapses since 2001, and it just wrecks havoc on your body's supply of nutrients and minerals. I always end up tissue iron depleted, and receive iron infusions, but they take roughly a month to really start returning that much needed resource back to you.
My advice, cut the energy drinks and caffeine back temporarily until your better recovered. I spoil myself with good tea, but during this time I lean HEAVY on any juice with vitamin C. If your not aware, C is critical in iron absorption- with out it, iron supplements and infusions really suffer for effectiveness. Eat as much food as you can that is great for iron, b12, vitamin c, etc. All the goodie stuff to provide your bones the resources to produce blood and platlets. You definitely dont want your body to start cannibalizing those resources from your tissues and organs!
Good luck, and snowboarding is awesome. Two fingers to ITP!
Hi Charlotte, my son has had itp for about 5 years now. We try and eat a healthy diet to boost the energy levels but with the right medication to keep the platelets level above 50 helps his energy levels too. He was on eltrombopag for a few years and it worked a treat. But after that the levels dropped. Now he’s on avatrombopag and the levels are back up again. He used to love the drink Vit Hit and I thought they were healthy. But while on eltrombopag his doctor noticed that his liver levels were affected. We stopped with those drinks and his liver count went back to normal. Really hope you get your energy back soon! Milla
Thanks Raven! Gosh I didn’t know people took Eltrombopag for years. What kind of results did you son see in his platelets in the first few months do you remember?
Unfortunately the Eltrombopag hasn’t worked for me. It’s been 7 weeks and my count hasn’t surpassed 6! I ended up hospitalised due to having a really bad migraine that they thought could be a brain bleed but luckily a false alarm. It did prompt them to make me take prednisone though even though I hate it. 20mg then up to 40mg…
Also my specialist wanted me to do the weekly stomach injections I can’t remember what they’re called? But she recently found out the ‘experimential cancer treatment’ that worked for me when I was 16 was actually Rituximab which is widely used for ITP now.
She said it’s not been standard practice for a while due to the risk of covid as it gets rid of your immune system for around a year but she ended up letting me go ahead with it as it had such a success for me before and I was in full remission for 10 years after only 4 weeks of treatment.
So this starts tomorrow, I’m tapering off steroids, off the eltrombopag and will see how it goes!
Usually putting any chemicals in your body that is obviously not healthy for you would cause harm I know I was in denial when it came to soft drinks but I weened myself off of that and got on seltzer water, for those that like the bubbly aspect of sodas and try to repair and heal your gut, that your vitamins fresh fruits and vegetables, try kimchi, most autoimmune comes from the gut and sodas they don’t help that for sure, I’ve had itp since 2009 lots of prednisone’s that destroyed my gut I’m happy to say I’m now stabilized and counts are sitting pretty at 436,000! Hope this helps!
Hi Charlotte, oh my you have really had a hard time during these weeks. Eltrombopag did not work instantly. It probably took 6-8 weeks before it worked properly. But the dosage was very low first and then with all the rules about what you shouldn’t eat or drink in the hours before and after taking it. Dairy products. That could impact on the platelets. He was on it for I’d say at least 3 years but the dosage got too high in the end hence him being on avatrombopag now. Good luck with your treatment trial. I’m keeping my fingers crossed that it will work for you! Xx
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I need to look more into guy issues and ITP for sure. I feel like there’s so many avenues to go down x
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