Second Outbrake in a Week ( mouth ulcers )

[Topography52_-]

I am on my second outbreak of mouth ulcers something I have never suffered before is it worth mentioning on my next visit to my hematologist ??? ITP is a strange illness.

[Hidden]

Yes! Please mention it!! Take pictures if you can to document. I have so many things that are odd I do so the doctors can see. If it gets bad you may not can wait. Please research ulcers in the mouth with ITP.

[SoporRose]

Yes, absolutely mention the ulcers. If you can, call your doctor's office and leave a message. Your physician may want to see you or may have advice on how to deal with the lesions. Let us know how you fare.

Ruth

[NickyD]

Always mention anything that is out of the ordinary. Photos are always good. I will take a video if i feel it is helpful.

[Topography52_-]

Does it mean anythink though ???

[Hidden]

Yes, definitely mention it. My oncologist always asks me about mouth ulcers. I've had that once and he gave me a liquid rinse for it, an Rx and it helped a lot.

[Chickensmom in reply to Hidden]

I am curious about the mouth rinse. My 12yr old has them for weeks at a time the size of nickles and they just tell me to watch them for bleeding. She says they are painful and usually make her lips poke out like she has been hit . Do you remember the name of it? Thanks

[Hidden in reply to Chickensmom]

He said mine were mostly thrush. It's a liquid, but it also comes in a powder I think. It's Nystatin 100000U, and instructions are swish and swallow one teaspoonful every 6 hours. Guess it wouldn't hurt to ask your Dr. if he thinks this would help. Hope they find something to help him!

[Chickensmom in reply to Hidden]

Thank you for the reply

[carnes555US]

I don't remember getting them when ITP started, however, now when my platelets drop below 20K, I get mouth ulcers really bad. My hematologist wasn't worried about them, and as soon as my platelets started moving up, they went away. I know everyone's symptoms are totally different, but this is my experience. I also get a pain in my left side (above hip bone) when my platelets drop and no one can explain that because all scans show my spleen looks fine. Good luck and will be interested to hear what your doc thinks!

[Topography52_-]

As I always say funny illness well at times : ) since I was lucky enough to acquire it obviously this is in jest : ) I have so many different symptons that have changed health wise within the time scale of ITP and they are still ongoing my best one is the brown dots that constantly appear my hematologist tells me its auto immune I am very curious as to which one ??? I am begining to wonder do i start to join them up would be intresting : ) Keep replies coming I always find other peoples experience's a eye oponer .

[ITPAffecty]

I never thought ITP could be reason for mouth ulcers as I used to get very often when my counts were low. But somehow reducing sugar intake was helping me though.!!

[Topography52_- in reply to ITPAffecty]

It is a learning curve and this forum helps me learn something new every day.

[Hidden in reply to Topography52_-]

I agree. I've learned a lot from this site as well, and I'm always happy to help out anyone else if I can.

[sharroN42]

I learn more through this web site than either my doctor or haemotologist. They don't believe the many and some massive bruises I have are caused by ITP and that diet has anything to do with platelets, other than wine. Following their advice I have tried to live in somewhat the same way I did before only to find my platelets keep dropping. So, for me, I'll follow the dietary protocols of this wonderful site. Good luck everyone and thanks for the idea of photographing symptoms.

[Topography52_-]

My hematologist said ulcers cold sores are not a symptom of ITP I am just run down on a plus my platelets 133 best they have been in 14 months hope this is a shape of things to come

[alice_sportyauthor]

Hi ITPers

When I just had ITP I never had mouth ulcers,

Now I have a second auto immune illness LUPUS, and on EVERY appointment the Dr asks me, have you had ulcers! I still don’t!

I try and tell him about other things, he doesn’t seem that interested (typical) and I’m like, I know you want to know if I get mouth ulcers but I don’t so stop asking about that and let’s talk about the swollen glands or itchy skin.

Hey ho 😃

So maybe if you suffer badly with mouth ulcers it might be worth having a look at some of the other auto immune illnesses....

[Topography52_- in reply to alice_sportyauthor]

I know what your saying is right but then you convince yourself you have that ailment too : ) now I will be looking up lupus : )

[Topography52_-]

I am now having repeated episode's of cold flu outbreaks monthly throat especially sore : ( is it all lupus related do you think ?? Especially joints / aches / fatigue .