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Yuck! My mouth tastes and feels like crap

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9 years 11 months ago #51800 by megmishu
Yuck! My mouth tastes and feels like crap was created by megmishu
Yuck ! This is nasty! no matter what I try it still feels and tastes horrible. anyone else have the same problem? what to do, what to do? :S :(
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9 years 11 months ago #51801 by garylouisville
Replied by garylouisville on topic Yuck! My mouth tastes and feels like crap
Can you give us any more info?
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9 years 11 months ago #51802 by megmishu
Replied by megmishu on topic Yuck! My mouth tastes and feels like crap
sorry about that. I was dx'd a couple weeks ago with zero platelets. have had blood blisters in the mouth off and on for a month. prednisone did not work IVIg did not work. have since stopped both. got all my inoculations the other day before starting rituximab in another week. I feel fine with the exception my mouth tastes and feels like crap. I don't know what I can do.
  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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9 years 11 months ago #51808 by midwest6708
Replied by midwest6708 on topic Yuck! My mouth tastes and feels like crap
Avoid chewy, hard, or sharp foods. Eat soup, cooked cereals, mashed potato, gelatin, pasta ... Things that won't rub on the mucous membranes of your mouth. Don't use a straw for drinking.
Otherwise, there may not be much you can do except wait it out.
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9 years 11 months ago #51809 by Ann
Replied by Ann on topic Yuck! My mouth tastes and feels like crap
I was prescribed liquid tranexamic acid which you can swish and swallow with. It tastes great and it stops some of the bleeding. You need the liquid though and not the tablets.
The following user(s) said Thank You: megmishu
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9 years 11 months ago #51813 by Margaret k
Replied by Margaret k on topic Yuck! My mouth tastes and feels like crap
Why are you not being offered eltrombopag first before rituximab?
When I had a big persistent blood blister after biting my inner lip an antiseptic mouthwash helped it heal.
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9 years 11 months ago - 9 years 11 months ago #51814 by Christine
Replied by Christine on topic Yuck! My mouth tastes and feels like crap
I know what you mean, medication can usually make it that way. My dentist and hemo reccommend Biotene mouthwash. It is non alcoholic - alcoholcan make your mouth worse and doesn't contain sugar. It is a bit more expensive that regular mouthwash but it sure helps me and is worth it. Good luck, C
The following user(s) said Thank You: megmishu
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9 years 11 months ago #51815 by rhoda
Replied by rhoda on topic Yuck! My mouth tastes and feels like crap

midwest6708 wrote: Don't use a straw for drinking.

why not?
what is the thought processes for that?
  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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9 years 11 months ago #51820 by midwest6708
Replied by midwest6708 on topic Yuck! My mouth tastes and feels like crap
Anything that abrades the mouth membranes can break capillaries and cause a blood blister. Sucking on a straw causes the teeth to rub against the inside of the cheeks.
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9 years 11 months ago #51834 by megmishu
Replied by megmishu on topic Yuck! My mouth tastes and feels like crap
Thanks everyone....as it turned out I was having an allergic reaction to lorazepam. The canker sores and mouth that felt like sand paper...nasty.

I was taking lorazepam at bedtime so I would go right to sleep and one night I took it a few hours before bed to try and relax my mouth because it was so sore. we all know--when you have sores you know you should leave them alone but you can't and you don't--anyway, my mouth got worse a couple hours after taking it and I finally figured it out. yay!!

I took Benadryl, stopped taking lorazepam and my mouth has returned to normal.

Still waiting for my first rituximab infusion on Tuesday next week. hoping all goes well but trying not to think about it too much.
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9 years 11 months ago - 9 years 11 months ago #51835 by megmishu
Replied by megmishu on topic Yuck! My mouth tastes and feels like crap
Margaret k--don't know the answer as to why rituximab first. hematologist consulted with specialist and that is what they decided.

I've had blood blisters and they were gross looking and annoying but they did not hurt. this was a different problem and glad I figured out it was allergic reaction to lorazepam.
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9 years 11 months ago #51842 by Ann
Replied by Ann on topic Yuck! My mouth tastes and feels like crap
It's pretty usual to be offered rituximab before the TPO drugs. Actually it's almost obligatory in the UK.
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9 years 11 months ago #51844 by Margaret k
Replied by Margaret k on topic Yuck! My mouth tastes and feels like crap
Hi Anne and megmishu
That has not been my experience in Scotland. I have now been offered Rituxumab as a last resort after being refractory to steroids and Ivig,then failing on Eltrombopag after 30 months and then being unresponsive over 4months to the increasing doses of Nplate. At present I too have a sore mouth but though I have a count of about 8 I have only one or two blisters in my mouth. My gums seem very easily irritated . Dentist says use Corsodyl non alcoholic mouthwash and Iglu lidocaine gel. Chips and crisps are definitely off the menu.
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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9 years 11 months ago #51847 by mrsb04
Replied by mrsb04 on topic Yuck! My mouth tastes and feels like crap
When I asked my consultant about Rituximab and she suggested trying TPOs first
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9 years 11 months ago #51849 by Ann
Replied by Ann on topic Yuck! My mouth tastes and feels like crap
That's good if things are changing. When romiplostim was being considered by NICE (which doesn't apply to Scotland), they were told by the doctors that rituximab would be used first so that the use of romiplostim would not be so great. In fact the use of the TPOs has been far greater than anticipated and so the cost is far higher. In part that is going to be because rituximab is not being used as much, if that is the case generally. Also patients are supposed to have a splenectomy before using the TPOs but that requirement is often ignored by doctors as splenectomy goes out of fashion. It's all good news for the patient.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 11 months ago #51852 by Sandi
Replied by Sandi on topic Yuck! My mouth tastes and feels like crap
Agree!
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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9 years 11 months ago - 9 years 11 months ago #51862 by mrsb04
Replied by mrsb04 on topic Yuck! My mouth tastes and feels like crap
So do I Sandi.

Thanks to the internet there is a wealth of information available (this site for one) so people are able to make much more informed choices regarding treatments.
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