Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

New symptoms occuring...blood blisters...

More
14 years 4 months ago #15829 by eappel
Since the start of this (3 months ago) we haven't found a treatment to raise and stabilize my husband's counts. The IVIG has worked but even that is not as effective as it once was. 8 weeks after first Rituxin treatment and it's looking like that isn't doing anything either. We're about to begin Nplate as soon as the paperwork goes through.

Here's my question though, since the start the only symptoms my husband has shown is bruising and minor petachie (and that was only at the very beginning). Even at his lowest counts (4k a few times) there was only bruising.

Now he's started to develop blood blisters in the mouth. He's had them for a couple of weeks (even while his count was at 94k last week - thanks to IVIG we're assuming) but then yesterday he was spitting blood and there was a lot of bleeding when he brushed his teeth. The blisters weren't painful.

Has anyone noticed their symptoms getting worse? I mean his counts have always been low - why all of a sudden is he now getting such a harsh symptom? He goes to the doc today and we're expecting a very low count of course. I guess I'm just freaking out because, bruising was one thing - but these blisters seem to be a lot more severe!

We thought the 94k last week might have been the Rituxin kicking in - but obviously the onset of the blisters (plus more bruising and slight petachie) can't be happening if his count was high.

Thanks so much,

Erin
  • server
  • Offline
  • newcreationchangingdaily
More
14 years 4 months ago #15840 by server
I'm sorry to hear about the new symptoms Erin. I wish there was a pat answer. I never had symptoms other than bruising and petecheia at the beginning. Then all of a sudden, after my 2nd round of Rituxan I started getting nose bleeds. It was 6 weeks after the last infusion, so it was obvious it wasn't working! That's when I started Promacta. I've been as low as 1 with no new bruising, and had some pretty nasty looking brusies at 50+. Try not to worry to much. Looking forward to hearing what the doc says today.

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 4 months ago #15843 by Sandi
Sometimes symptoms increase the longer counts are down. I hope he gets approved for treatment soon.