Search Results (Searched for: )

  • mrsb04
23 Mar 2023 05:35 - 18 Apr 2023 01:48
 Avatrombopag is now on hold as the increase in dose sent my count over 400. 
Count repeating  tomorrow 
  • CindyL
23 Mar 2023 09:56
WOW!  That's quite a jump!  Hopefully your doctor(s) can get the correct dosage for you soon!
  • MelA
24 Mar 2023 00:13
Good heavens mrsb - you win the prize - oh my word!   Bet you never thought you'd see over 400k!!
Let us know what tomorrow brings!!
24 Mar 2023 15:23
Replied by CJENNIGES on topic Rituximab Side Effects Question
Hi. I had my first of four Rituxin infusion on Wed.  Had a reaction 3/4 way through.  Finally finished after a push of Benadryl and was sent home. Thursday I felt good. Was able to drive. Friday, I am dizzy, lightheaded, no energy, and emotional. Anyone else get delayed side effects? How long did they last?  Thanks 
  • midwest6708
25 Mar 2023 19:59
Replied by midwest6708 on topic Rituximab Side Effects Question
My experience was different.  I had several reactions during the first infusion, but got through it.  That evening and the next, I ran a low-grade fever and felt flu-ish.  The second infusion was much smoother, but I developed serum sickness afterward and never took the last two. 

Each Rituxan experience is probably as unique as the person who undergoes it, and no one can predict what it will be.  I hope you're feeling good by now and will have few problems going forward.   Most of all, I wish you success from having done it! 
  • mrsb04
27 Mar 2023 07:35 - 18 Apr 2023 01:49
Count down to 243, Avatrombopag on hold until it is below 150.
As planned Fostamatinib reduced to 100mg twice daily, and Pred down to 3mg/4mg alternating for a couple of weeks then down to 3mg daily. 
Continuing  with weekly bloods and back to clinic in 3 weeks. 
  • CindyL
27 Mar 2023 09:49
Are you comfortable with that number, mrsb?  How are you feeling?
  • mrsb04
27 Mar 2023 10:26 - 18 Apr 2023 01:49
I'm always twitchy with a count above 100. All those big juicy platelets circulating around my system. 
Physically I'm fine. 
  • CindyL
28 Mar 2023 09:17
Here's hoping you get to your comfort zone soon.
  • MelA
01 Apr 2023 00:07
A much better count mrsb!  This ITP is just one big guessing game isn't it?!
Hope things settle for you!!
  • MelA
01 Apr 2023 00:08
Replied by MelA on topic Gift to medical staff
Lman - curious what you decided to do!
01 Apr 2023 21:38
Replied by CJENNIGES on topic Medical Alert ID
I got two bracelets from Amazon. On front has my name and ITP low platelets and no BP cuff (because of lymph removal.)
On the back has hubbys name and phone and my blood type and dr. I wear every time I leave the house.
  • mrsb04
03 Apr 2023 13:42 - 18 Apr 2023 01:50
Count now 5. Avatrombopag reinstated at 20mg on alternate days 
  • ShinMegami
03 Apr 2023 15:15
Replied by ShinMegami on topic Newly diagnosed ITP 2 weeks ago
Sorry It's been so long since I replied if anyone reads this I did not have ITP, I had aplastic anemia(bone Marrow Failure). I had to do a bone marrow transplant in February, Right now my Platelets are around 200. This forum was a big help during my early diagnosis. Promatca helped to hold platelets transfused until I got my bone marrow transplant. I'm waiting for other blood counts to continue to rise as I type this. It's going to be a tough journey but thank you everyone here for your help the last year.
  • dmsec
03 Apr 2023 17:24
Medical mystery seeking advice was created by dmsec
Hello ITP forum.  I am so happy that this group exists.   I am new here and working on research with my sister.   She has become a medical mystery.  She has a low platelet count, most of her platelets are immature and her blood will not clot.  She has almost died twice in the past 2 years before we realized that she had this issue (whatever it is).  The issue has developed over the past 2-3 years.  When you look at all the many cancer and non-cancerous clotting deficiency diseases, she has some symptoms but not enough of any pattern to have a diagnosis.  She has had loads of tests, including factor tests and bone marrow biopsies, multiple times.  Four different doctors at different medical centers have given up on her, including Moffit in Tampa.  Her arms all full of bruises from simple pressure, and her blood will not clot.  She has been ruled out for MDS.  She ‘may’ have ITP but has only a couple of the symptoms.   I am here asking advice.  When your case is not clear cut, where do you turn?  We are in the Tampa/St Pete area of Florida, and hunting for a Hematologist or any other doctors who will engage
with the puzzle and stick with it.    I even wonder if she had a reaction to the Covid vaccine, but who can help prove anything? We feel caught in the medical machine, but with no answers.  Can anyone offer advice?
  • MelA
04 Apr 2023 00:24 - 05 Apr 2023 00:32
Talk about a roller coaster - any thoughts on why your count jumped before?
  • CindyL
04 Apr 2023 09:27
Replied by CindyL on topic Medical mystery seeking advice
What do your doctors mean when they say only a couple of symptoms of ITP?  ITP generally means low platelets.  I was diagnosed because of bruising.  I had 3 small bruises in the same area where I had gotten shots after a surgery back in 2004 so my doctor sent for blood work.
Can't answer the Covid question.
Hopefully someone else will chime in with more advice.
  • CindyL
04 Apr 2023 09:43
OMG mrsb!  That's quite a drop!  I wish your doctors could find something that would put you in your safe zone.  You certainly are having a rough go of it right now.
I hope things even out for you soon, mrsb.
  • dmsec
04 Apr 2023 10:07
Replied by dmsec on topic Medical mystery seeking advice
Hi, I mean the list of symptoms that you find on internet searches.  She only has the top 2 and none of the others
How does one get a definitive diagnosis of ITP?  None of her doctors said she has this 'disease' if it is considered to be a disease.
And how is it treated if she does?

Prolonged bleeding from wounds
Visible red or purple dots
Spontaneous nosebleeds
Bleeding gums, often during dental work
Blood in urine or stools
Unusually heavy menstrual flow
Feeling tired or fatigued
  • MelA
05 Apr 2023 00:31
Replied by MelA on topic Medical mystery seeking advice
What is your sister's platelet count??  Mine were 11k and dropping when diagnosed back in 1989.

One doesn't have to have everything thing you listed to have an ITP diagnosis -  I had the red dots on torso, I had bruises all over, none of the others you mentioned.  Platelet count is what counts.

ITPer does have immature platelets because their platelets are being destroyed in the spleen or other blood cleaning locations in the body. Immature platelets are large. 

Isn't there a Mayo Clinic in Florida?   Isn't Moffitt just for cancer patients? 
      From the Mayo Clinic:
Is ITP considered a bleeding disorder?
Immune thrombocytopenia (ITP) is a disorder that can lead to easy or excessive bruising and bleeding. The bleeding results from unusually low levels of platelets — the cells that help blood clot.Feb 25, 2021

I hope your sister can be diagnosed with whatever it is she has and be on the road to recovery.
  • mrsb04
05 Apr 2023 05:41 - 18 Apr 2023 01:50
My count was 31 yesterday. Be interesting to see what happens tomorrow but doubt I'll get the result before Tuesday due to the 4 day  Easter weekend. I shall continue on my cocktail of Fostamtinib, Avatrombopag and weaning off Pred. 
  • ImPatient
05 Apr 2023 07:36 - 05 Apr 2023 07:49
I've been having stomach problems for a couple years now and decided to try a natural treatment plan prescribed by a private gp who is also specializing in gastroenterology. Can such supplements lower your platelet count  A LOT?  I know f.e. ginger can lower it somewhat, but I'm not aware it would be dangerous? My counts have been holding up between 100 & 150 without ITP meds lately, but they have been as low as 13 before and it is still unclear why they decreased or increased, increase could be high CRP... Now I realize I need to find a doctor who can help me with this in person, but maybe some of you can give me their opinion in the meantime. I keep getting referred to the next to the next to the next, I can't afford paying a lot more private.
F.e. I'm guessing my hema could check my platelet count more often if it is necessary, but she says my platelets have been pretty high, she won't check them more than a couple times a year. She didn't take the treatment plan into consideration though, her opinion was I shouldn't waste my money. The reason I decided to try this treatment plan is I have had diarrhea and been throwing up almost daily for 2 years and nothing so far really helped to stop this completely, so why not try this.

The private gp said I should keep checking my platelet counts, while on the following supplements:
- broccoli complex
- oregano oil (says on the package because of menstruation inducing effects not recommended during pregnancy, does it have to do with platelets?)
- neem (500mg)
- ginger (that might be the issue? 500mg/ day?)
- some prebiotics ("Prebioma Sensitive")
- some other things that are not an issue (l-glutamin etc)
  • CindyL
05 Apr 2023 09:20
What a yo-yo rebound!  Better than 5 though!  I hope they keep climbing, but not too high!
  • mrsb04
05 Apr 2023 11:24 - 18 Apr 2023 01:51
Target count is >50 which is fine by me. 
  • dmsec
05 Apr 2023 11:46
Replied by dmsec on topic Medical mystery seeking advice
Hi, and thank you for the reply

Her platelet count can hover close to normal or be lower than normal, but never extremely low
The platelets she has are not mature, are lower by percent than they should be and do not function properly
Moffitt did say she did not have MDS, and her symptoms otherwise do not suggest any obvious blood cancer.
That is why everyone seems to give up on her.  The symptoms do not fall in a neat pattern.

We have studied all of the prescription drugs she is on and none seem to affect platelets.
My question is what would cause platelets to not mature and not function properly?
  • Reeves29928
05 Apr 2023 12:19
My son was diagnosed in October 22 with ITP. His platelets were 23000. He started with dexamethasone and IVIG. He did not respond. Was given Nplate and responded and released from hospital. The N-plate stopped working. To make a long story short, he has been hospitalized for two months. His platelets are anywhere from 2000 to 12000 with the 12000 being short lived. He is currently on Doptelet and Fostamatinib (3 weeks) with no response. He also had a partial splenic embolization (post 1 week). He receives daily platelet and red blood cells (low hemoglobin). Platelets are not working. He also has a GI oozing causing bloody stools. 

Doctors have reached out to associates at other hospitals with no additional answers.

any help would be appreciated.
  • RR01
05 Apr 2023 16:42
@Reeves29928  Not sure if it helps but I have ITP for the past 4 years and my platelets have always been in  the 20K range. I have tried ivIG once but the count dropped after 3 weeks . After that I didn't want to go for any more treatments,  In my case I felt that the treatments and constant blood count checks were making the condition worsen even more. As a mom it should be really tough for you, please try not to worry too much. As soon as they figure out something that works for him just to maintain at the 25-35K range , this will all be behind him.  
  • CindyL
06 Apr 2023 09:37
Replied by CindyL on topic Medical mystery seeking advice
Most of us with ITP don't know what caused it.  That's why it was called "idiopathic" when I was first diagnosed.  Now it's called "Immune".
For me personally, it has never bothered me to not know what caused it.
Have you found a hematologist yet?
  • Reeves29928
06 Apr 2023 09:50
Thank you for your kind words. Doctors have run out of treatments. This morning platelets were at 3000. Praying for a miracle.
  • CindyL
06 Apr 2023 09:56
Blood work was created by CindyL
I had blood work done 5 weeks ago and saw the doctor yesterday.  Platelet count is good and I don't even ask the number any more.
We've also been trying to regulate my thyroid.  Yesterday, he said he was sending me for an ultra sound because he thinks I have a cyst on it. He even felt my throat which he has never done before!  According to my sister, who works for a doctor, I could be waiting for the ultra sound for 6 to 9 months.  We shall see how long it takes for me to get an appointment.
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