FYI- For 2 years now we were told that the rash around Eli's mouth and nose was a methotrexate rash and there wasn't a whole lot we could do about it. "A little hydrocortizone wont hurt" we were told by the onoclogists. We went to a dermotologist today who told us it was due to steroid withdrawls every month! He prescribed a non-steroidal ointment. We are hoping this will help. I know Eli can't be the only one who has been tolerating this rash, so if your kiddo is too, there may be an answer.
Mom4boys,
THanks for the info! I am glad to have an answer. And I can totally
see that it could be steroid withdrawl, because it goes away steroid
week and comes back about a week after we finish them. Can I ask,
what is the ointment called? That will give me a starting point when
talking to their onc and a dermatologist.
doublewishmom
Thanks for this. Our daughter, also in LTM, has the same rash around her mouth and nose, but it goes away during steroid week. We were advised to use Aquaphor and that works pretty well.
Be sure to let us know if the ointment helped. Alex has the same situation and we've tried lots of things - any type of moisturizer helps some but it is still unsightly at times.
Gina
Eli's would go away during steroid week, too, only to reappear the next day, red and horrible for a week. After a week it would dry a little and look like ezcema. The dermatologist said it was a specific type of psoriasis caused by steroid withdrawl. He prescribed Protopic Ointment (apparently this drug is also used internally for transplant patients). 2x a day for 2 weeks, once day for 2 weeks, every other day for 2 weeks then as needed.
We tried hydrocortizone- steroid. Aquaphor helped a little until we got to steroid week which would clear it up all together. I'm sure not everyone's case is the same, but this might be worth looking into or seeing a dermatologist. He was quick to diagnose the problem. Mostly, I'm just pleased to finally know what has been causing it.
I'll keep you posted on how well it works since I have only applied one dose.
Elke, about to start her third segment of LTM, has begun to get little red dots around her mouth and sometimes on her nose. Is this what this looks like, by any chance? She just started getting this this month. It never happened in the beginning of LTM.
See- I just knew that there was a reasonable explanation. Here in the Hoosier state, the onc said it was psoriasis and the PCP said chemo. Ha! They both loose. Good news for us was that it only lasted a few cycles and then just quit showing up. Hopefully that will happen w/ Eli (though it doesn't sound like it has).
Aidan is not on steriods at all so his rash is from the methotrexate. Sometimes I put some petroleum jelly when it gets real dry. It looks terrible sometimes but I think it bothers me more than him. Although now he's a little older, he's become more and more aware of it. Recently when his methotrexate dose dropped to 50% ( 4 pills) the rash disappeared. Then he went to 5 pills, the rash was there the next day. Obviously there is a tipping point. Bummer!
Angela
We were told by our hospital that the rash was definately a result of the 6MP , but that some kids have it from the methotrexate as well. It may even be a combination of the two. Since steroids are anti inflammatory, once they are discontinued, the rash becomes evident as there is nothing to supress it, and so it stays, or gets worse until the next round of steroids causes it to disappear. My son had this rash last winter. It lasted for a few months and then disappeared. The odd time when I notice it beginning, I ensure that he drinks atleast 8oz of water every hour and have found that the rash subsides completely as long as he stays hydrated properly. There is a hydration calculation that the hospital does when our kids are on IV's to ensure that they have enough water going through their system which is important in flushing out meds. Once our kids go home, those levels are usually markedly decreased leading to the meds staying in the system and being recyled at a more concentrated level. Therefore, it is very important to keep them well hydrated to prevent unnecessary side effects from the meds .
For anyone interested www.protopic.com is one website where you may find more info on this cream which is used for moderate to severe eczema. Like the steroid, it decreases the immune response, giving the appearance that the rash is going away, while the cause still persists. It also has a warning on it that suggest a potential malignancy risk , so I would definately be careful before using on your child. Also keep in mind that dermatologists in general have next to no experience with cancer patients (unless that is their focus) , never mind pediatric cancer cases. Suppressing the rash does not mean it has been addressed.
Come on people. I'm just telling you what happened with us. I didn't want a debate. I'm nonconfrontational and I don't appreciate it. See your oncologist, have them recommend a dermatologist and then make your own decision. I was just excited to finally find an answer to our probelm and thought it might help others. Thanks.
My son has a ruch always a week after steroids, so, when steroids stop working, he has a rush (on his back and belly and under his eyes) until next month with steroids. For us doesn't work anything without steroids. We saw with dermatologist and he gave us 2 medication. First with steroids and secon no steroids. With steroids it's helped but I didn't use really often because rush it's not bother my son - thanks God!
I am very sorry if your are finding this confrontational....it is absolutelyl NOT intended to be, so I apologize if somewhere in my post you felt confronted. It is only meant to be informative. The last thing I want is to offend or confront another cancer parent, as if we don't have enough to deal with already, without having to invent issues. This board exists as a vehicle for the sharing of information, experiences and questions, not armed camps. I am sure that there are parents who have learned more from the discussions on these boards than from their own doctors, as collectively we all have tremendous amounts of knowledge, insight as well as random snippets of important information.
I did not find any posts on this topic to be confrontational, and appreciate everyone's different perspectives. ![]()
I asked if we could us a cream that was steroid based on the face rash and our onc said Absolutely NOT. Something about the topical steroid creams thinning the skin. Alex has his last dose of dex this week - hopefully in time his rash will disappear. I suppose if it lingers over the next year his would be 6MP related. But the whole steroid theory makes sense.
Gina
It is absolutely true that steroidal creams thin the skin. That is a well known side effect and your are fortunate that your doc was forthcoming enough with this information rather than prescribing it for your son. As well, once the skin thins, it also becomes more susceptible to other issues. On top of this, if supposedly an oral steroid is the cause of the rash, theoretically (which most likely it is not), a topical steroid will only exacerbate the situation, as topical steroids are absorbed into the skin, circulating in the body much like oral ones, though at a reduced level. So, really, steroidal creams do not offer a solution but only a cover up of a symptom.
If one really wants to understand how quickly topicals get absorbed, try rubbing a piece of crushed or minced garlic on the bottom of your feet; within five minutes you will taste garlic ( a sulphur compound) in your mouth.