TOPIC:

Hi,

We have my son on Prednisone for about 5 months with 2-3 months of medium to high dosage (40mg/day). He had stretch marks and gained weight with the moon face. Unfortunately, this steroids had little to no effect to his platelet count except for the first week of dosage where his platelets went up to 120+ but after that even with a high dosage, his platelets were hovering to 10-20K. We decided to stop the steroids as it has little effect and the side effects we are seeing predominantly already. We are wondering how long the side effects will be gone (ie. moon face)? We notice his swollen face lessened down after 1 month but it's not yet back to normal. His stretch marks are still there. Anybody who has the same experience and can provide some idea on when this will be gone?

Thanks!

The side effects can take a while to go away (weakness, fatigue, etc). Most people still feel them even after they have been off of the drug for a few weeks or months. The moon face will lessen slowly as the dose goes down, but stretch marks may or may not be permanent. He's young, so they might go away but it depends on how bad they are.

I'm wondering why his doctor kept him on them so long if they were not helping his count.

Hi Sandi,

Same here... they were afraid that it will even go down lower to less than 10k if we got off Pred (which it did) but the initial result of the Pred was good so they thought it will go higher in a few weeks. We are totally off Pred for 1 month and 1 week. We still see the stretch marks and the moon face but it wasn't as bad as a month ago. I thought that it will be gone after a month... apparently not. Stretch marks are really bad but I'm still hoping it will heal. We put some moisturizer everyday to help it heal. If you know any other ways, that will be great to know. Thanks!

I've read that Vitamin E can help stretch marks. Break the capsule and rub it on the skin.

I get the reasoning behind the long Prednisone stint, but if it clearly isn't working, you try something else and get the heck off if it. It makes me crazy when they do that to child. Is he on any other treatments now?

Hi Sandi,
Thanks for the recommendation. Will do that immediately. He had IVIG 2 weeks ago and brought his platelets up to 35K. It was unplanned as we were on a wait and see even if his platelets were like 2-3K but his tooth came off and it was bleeding so we got admitted, he had platelet transfusion while the tooth was taken out along with tranexamic acid. Everything went smooth and the gum didn't bleed when the tooth was removed. Since we were admitted, the doctor decided to do IVIG (double the dosage -> 2mg/kg) to bring it to safer levels. It's been 1 week and a half since we got admitted and his petechiae is not as bad as when it was 2K. The doctor earlier recommended prednisolone again when it was 2k and I didn't agree given that it didn't really shoot it up. She then recommended Eltrombopag which we ordered for standby. We are from Singapore and apparently there is a shortage so earliest we can get is end of Feb. I'm hoping we don't need to give it by then...

I also feel guilty of allowing him to take it for a long time and really insisted on getting it off in December but apparently, we need to taper it off which I completely agree after reading some of your posts. This resulted to 1 month extended on Pred...

You shouldn't feel guilty. Everything is trial and error with ITP. You figure things out as you go along.

I hope things work out for him soon, sounds like you guys could use a break!

Hi,

When I was a child (I've had ITP since around age 8 and I'm now 40) I was treated sporadically with prednisone and ended up with definite moon face and stretch marks during periods of higher treatment doses. It would take a few months for my face to slowly change back into a more normal shape. It's kind of amazing how quickly the moon face comes and yet how slowly it goes away. The stretch marks never faded completely for me, but they did lighten up over time. I hope you have good luck with eltrombopag. I just started taking that as an adult a few weeks ago (it didn't exist when I was a kid) and I have good hopes for some better counts. Hang in there!

Thanks Sandi and Momto3boys! It seems like I'm on the edge all the time thinking of what my son's platelet is everyday so yes, a break is definitely needed! It has been 2 weeks since the IVIG and he now has a few petechiae again but not as bad as before when his platelets were 2K. His last count 3 days post IVIG is 35K so I'm hoping it holds there and doesn't go down to the dangerous levels. If it holds, I believe the doctor will not ask us to take Eltrombopag. I have read somewhere that he may have a leaky gut since young so we had him on gluten free, dairy free diet since January (he also had yeast in his gut as a result of steroids so dairy is off limits except goat's milk). Also had him take probiotics and some digestive enzymes. Hope these will help in some way or the other. My in-laws and TCM doctor told me to have him drink boiled peanut skin with red dates to help the blood. Since there is no harm in taking them, I let him take as well... Yes, I'm trying everything I can to help him recover. I still believe that he will. I take pictures of him every now and then to show him that his face is slimming down as well. He was quite concerned as some boys in school call him cheeky face. His stretch marks on the legs and side of buttocks are still reddish so have started applying Vit E that Sandi reco'd. Also had special permission from the school to go in the campus to help him with his bags and all since last time his platelets were on the dangerous level. I must say the school and the teachers were really supportive which helps a lot!

Momto3boys, I didn't know you had it for that long. Been reading your progress on eltrombopag. Hoping it works for you! I'm a mom to 3 boys as well so I fully understand how busy (and fun!) your life must be. Thanks for your note!