Suffering with mouth sores: Hi Itp... - ITP Support Assoc...

ITP Support Association

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Suffering with mouth sores

Jud61 profile image
6 Replies

Hi Itp people. This darn disease or disorder whatever has really got me in it’s grip and won’t seem to let go and into my 8th week today. Besides all the rest of it I find I am suffering daily from mouth sores that are extremely sore. The majority are from blood blisters on my tongue, inside of cheeks and gums and also the roof of my mouth. My question is can anyone recommend anything to help or ease the problem? I am sucking on Iglu pastilles, using mouthwashes and eating soft food but they still appear.

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Jud61 profile image
Jud61
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6 Replies
crissy22a profile image
crissy22a

Oh gosh poor you . I remember all that ,,,, but its only when your platelets rise ,do you stop having all the symptoms. I'm 6 years in now . And even now if I drop a blood blister will appear. That's your body telling you your low..I've had every treatment on the market i think . I'm now on the wonderful N,plate. Its the only thing that has worked for me in 6 years. So fingers crossed you will find the drug that suits you. It's not easy, but it will happen. I've just come back from Thailand after having Xmas out there. It takes a bit of organizing, but it can he dobe . Good luck with the battle , but i promise it does become easier .

All the best Chris

JBUGGIE210 profile image
JBUGGIE210

I'm 8 years in and I've only developed blood blisters once. My count had actually dropped to 0 while I was duing my 4 week tx of Rutixin. I also developed h. Pylori during this time. But when I asked my doctors what could I do to get rid of the blisters as they were so painful. They told me it would go away only when it count rises.

Heath21 profile image
Heath21

Poor you. Of the three dramatic drops in platelets that I have had, only the second one gave me blood blisters in my mouth. It got better as platelets rose. I was dreading symptoms getting worse each time, but that hasn’t been the case. Third episode, I didn’t get blisters, only the dreaded bruising! It’s a weird disease. Thanks all of the group for ongoing reassurance and advice.

TASL profile image
TASL

I get sore patches on my tongue periodically and cannot relate it to anything in particular, is this the same thing? I only recently found out I have platelet and fibrin deficiencies.

Topography52_- profile image
Topography52_-

I woke up this morning to at least 6 mouth ulcers at the corner of my lip and inside my mouth do not really suffer from ulcers is this related to ITP have had some many random illnesses.

Kyriak51 profile image
Kyriak51

You need contact your hematologist and have your CBC with platelets done,discuss your mouth sores and ask him/her what can be done to resolve this issue. My platelets have been as low as 5K and I’ve only had “blood blister “when I bit my cheek.

What treatments have you had? What is your plan of care, what is your platelet range, how much do you know about ITP. This site has good educational materials and there are many reliable medical sites on the net: myitplife.com, National Institutes of Health (.gov), Mayoclinic.org ant Wikipedia. The more you know about your disease process, the better the are you will receive. Be well:) kyriak51

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