Low count again?

[LannaBarnett]

I have several blood bruises in my mouth. I have recently caught a cold my 1 year old had.. I haven't had blood blisters before. Should I call my hematologist? Or is this something that's going to happen and it'll go away?

[Robert1959]

Lanna,

You count must be very low (possibly below 10) as this is often a symptom. I had these for a long time and they only disappeared when I eventually climbed above the single digits.

Unfortunately there was nothing they could do for mine (which also turned into painful ulcers) and I was amazed at how my body was able to heal the mess in my mouth once my count climbed and they went away.

Have you ever had counts below 10 before? I would certainly be letting your hema know.

[LannaBarnett in reply to Robert1959]

My count this time was 2. It has been down to 6 before, but I didn't get any blood blisters. Just some bruising on my legs.

[rharvin in reply to Robert1959]

Ive had numbers in the single digit and the doc gives me ivig weekly but i dont think its as affective anymore

[PixieKez]

Definitely call the haematologist... these symptoms only occur when your count is VERY low. To get by for now I would try using echinacea and a strong dose of ester C daily. Hope you're ok.

[LannaBarnett in reply to PixieKez]

My count ended up being 2.. So I went up on the prednisone again. 60mg once again. Hello weight gain!

[PixieKez in reply to LannaBarnett]

2 wow! glad to hear you are on the up... and yes the bloody weight gain! Isn't it a thorn in the side for us all :/ here's to health and happiness even if we're a bit round

[Lin6]

Hi Lanna

Yes I would get in touch with your Doctor, I had blood blisters in my mouth and loads of bruising all over when my count was 7.

Please let us know what they say

Wishing you all the very best.

Lin

[LannaBarnett in reply to Lin6]

My count ended up being 2.. So I went up on the prednisone again. 60mg once again. Hello weight gain!

[Lin6 in reply to LannaBarnett]

O bless you, fingers crossed count goes up quick so you can come back off meds,

I'm praying bloods on 30th gives me good news too.

Take care

Lin

[LannaBarnett in reply to Lin6]

Thank you. Hopefully your count is up! I wish you the best!!

[GlendaInIowa]

Yeah you are going to want to have your count run. Like everyone else, I got them when my platelets were at 0-5. It is one of the big danger signs for critically low platelets. Keep us posted.

[LannaBarnett in reply to GlendaInIowa]

My count ended up being 2.. So I went up on the prednisone again. 60mg once again. Hello weight gain!

[rharvin in reply to GlendaInIowa]

Hi glenda

Ive been experiencing the same thing with my platelete numbers and the doctor is advising spleen removal what are your doctors saying to you

[GlendaInIowa in reply to rharvin]

I got ITP as a kid after a combo strep throat/high fever/antibiotics round (two rounds actually). It has been chronic and I have just kind of noted the random, occasional blood spots and lived with bruises all my life.

Then this summer I had another combo of bronchitis/high fever/antibiotics which triggered another round of low platelets (it has been 38 years....so I kind of forgot this was the initial trigger). I mean, I KNEW they were low but I didn't have them checked. Then a couple months later I had a mild chest cold where for two nights I revisited the inhaler/codeine cough syrup left over from the bronchitis incident. Four days later..WHAM...I look like a big hickey and my mouth is full of massive blood blisters. I waited to get a regular doctors appointment (3 day) and rolled in with 0 platelets. Not my smartest move.

Four days of decadone steroids and immunuglob got them back up but they crashed again after 8 days (to 4). So I did a rituxan round (once a week for 4 weeks) in combo with 4 more short rounds of decadone steroids and that drove them up, where they have stayed in the 200s (feels weird).

in the midst of this, discussing symptoms with my doctor, I discovered that it is most likely the blood spotting and bruising I have had all my life means I have REGULARLY been dropping in the 10-20 count. Whoops. However I KNOW they couldn't be that low all the time becuase, as a for instance, I dropped the chicken coop lid on my head this summer and gave myself a mild concussion. Had I done that at a 20 count, I would have killed myself! So we kind of think I have lived all these years somewhere between 20 and probably 150. The high end is really a guess from the last time I had them tested (25 years ago).

So at the moment, I am riding in the 200s and my hemotologist said he woudl expect them to tick down a bit over time, likely to whatever my normal is (hopefully my high normal). But we seem to have stopped the hard crashes I triggered. He said he woudl like me to consider a spleenectomy if I start falling and living under 30. I am pretty dubious about this option. He is also willing to try Nplate if it happens again. That sounds better, but on the other hand I know that when you mess with your system too much you can trigger other auto immune diseases. Lupus is the big one that usually follows after ITP. So I am just going on the premise that it was a six week blip in the radar and a good reminder that at age 47, I need to start taking better care of myself.

What are you hearing from your doc?

[Brian247]

hello Lanna,

As the others have said, this seems to be a warning sign that your count is too low, and it is time to contact your Doctor or Haemo - whichever you can see first - who will probably arrange a blood test for you and advise you on the results. Or can you just go for a blood test anyway and deal with the specialists afterwards? I recommend that you act quickly, though perhaps it won't matter too much if you don't.

Best of luck. Wishing you well -

Brian

[LannaBarnett in reply to Brian247]

My count ended up being 2.. So I went up on the prednisone again. 60mg once again. Hello weight gain!

[ellaco]

I get them a lot, inform your team, be careful as they can sometimes causes bleeding gums,. While you have them use a soft tooth brush and I wash my mouth out a lot through the day with salt water and mouth wash as it seems to help