Just want one good day

[LisaMarie]

I have to vent...I missed my 16 yrs old academic awards ceremony last night because those nasty sores on my tongue are comimg back ...this time under my tongue and since Mayo told me my immunity in almost nil...no can do on large crowded places...i was planning on going but hanging out in the back til the sore/lesionsappeared yesterday afternoon with a fever...still lowering my pred like a good girl ...goal 10 mg by the time i go back yo Mayo in May...on 30 mg now ...go to 20 mg on sunday for 2 weeks then down to 15 then 10...i usually have problems at 20mg..increased sinus issues and resp issues...scare my poor kid to death...he texted but i slept a good 12 hours yesterday after i left work soo i did not get his message til this morning ( he is staying at my parents right now).....I would love just one day of pain free sore free worry free to spend time with my kids ...it gets hard to pretend I am ok when they want to do something...ughh....I just wanna scream

[Sangye]

I'm so sorry that you're going through this, Lisa Marie. Hugs to you.

[NicShaf]

Sending good thoughts your way...I hope you can start to feel a little better.

[Palmyra]

Sorry for your plight Lisa Marie

Did Mayo suggest anything for the sores in your mouth, or were they not a problem when you were there?

[LisaMarie]

No lesion while I was there...but had them in the hospital in Sept/Oct...treated with acyclovir since they came back herpes simplex...thought they were shingles...then went on acyclovir prophaltic...then in january was told i could stop...so now back on acyclovir prophaltic this time instead of the top of my tongue on the left side ...they are on the bottom of my tongue on the left side...luck me...they hurt like u can not believe so on yogart with extra protein diet til i can eat better.....go back to ID doc the 22nd unless he wants to see me earlier....what a roller coaster ride i have benn having

[Psyborg]

Sorry you are having the difficulties Lisa Marie

Just as a side note...I had issues going lower than 20mg pred and they had to go slower than the 5mg at a time adjustments. Not sure what your options are, but i went down 2.5 mg a month from 20 to 10. It's taking forever to get down the whole way, but I've had less issues.

[DEE]

Sorry to hear you are not so good today hoping tomorrow is better Lisamarie

[LisaMarie]

they gave until 2 weeks before my may appointment...they would prefer a month...so i may try the 2.5mg if i have too many problems .....thanks for the support u all...baseball season for both my boys is starting and i really want to go to the games....i am having a hard time adjusting to the new me with WG....have a good night i am wiped and off to bed

[elephant]

Hang in there LisaMarie, you will get through this. You are in good hands and have stayed on top of your symtoms. Sorry you missed your daughters event, I'm sure she understands.

[drz]

No lesion while I was there...but had them in the hospital in Sept/Oct...treated with acyclovir since they came back herpes simplex...thought they were shingles...then went on acyclovir prophaltic...then in january was told i could stop...so now back on acyclovir prophaltic this time instead of the top of my tongue on the left side ...they are on the bottom of my tongue on the left side...luck me...they hurt like u can not believe so on yogart with extra protein diet til i can eat better.....go back to ID doc the 22nd unless he wants to see me earlier....what a roller coaster ride i have benn having

When I got those apthous ulcers and sores on cheeks and gums they gave me a different type of meds called valacyclovir (I assumed it was stronger version) to take for ten days and then I went back to regular acyclovir. They also gave me Tramodol for pain and I found rinsing with a baking soda solution helped reduced discomfort. Mine mostly went away in couple weeks with the treatment. Hope you heal quickly too.

I think my sores happened about the time I somewhere between the 20-10 mg decrease range.