ITP Symptoms? Help please.

[Davis3924]

I suffered from ITP back in 2015, and I have been in remission since Dec 2016.

Last night, I woke up with a face covered in blood having a nose bleed. The nose bleed stopped after about 10 minutes, and I went back to sleep.

Today, I have felt like I have been flattened by a steam roller. Every bone and joint feels like it has ached. I sneezed earlier and had another nose bleed. Since then, I have also had a dull, but persistent headache.

I don’t have a rash (yet), but I remember feeling run down before the last episode, and I didn’t get the rash until 24+ hours later.

What would you do? Is it worth a trip to A&E? My concern is I don’t want to waste anyone’s time.

Thank you 😊

[EatPrayLove65]

I personally would reccomend going to be looked at...better to be safe than sorry with the head ache issue...being ITP is known for brain bleeding...not trying to scare you, but please don't worry about wasting anyone's time when it's regarding your health..

Prayers and positive healing energies coming your way-->😊

[Truane]

I would ring my consultant straight away no messing. Good luck

[Davis3924]

Thank you for your replies. I have a blood test booked with my Doctor at 0845 (about an hours time).

I haven’t had any more nose bleeds, I’m just feeling really really tired!

Fingers crossed I will get the results soon!

The only reason I didn’t go straight away is I’ve had that many ‘false positives’, I feel quite silly going every time I feel off. Especially as I have been in remission for so long now.

[srose14s1 in reply to Davis3924]

I was in remission for 6 years until this January. I fell off a crappy chair into an unmovable object...couple days later I had blood blisters in my mouth and petichiae on my legs...under 3k in platelets...no luck with dexamethone, so now Nplate and 60 mg of prednisone and I’m above 30k 2 weeks later. If you feel it’s not right, then more than likely that is the case. Good luck

[Davis3924 in reply to srose14s1]

I’m a big believer in ‘you know your own body’!

I fell ill in Turkey for the first time with ITP. To start with, I had a rash and felt tired. Everybody said it was probably a reaction to the recycled air on the plane. I knew there was something else.

I went to visit the onsite doctor, and within the hour, I was rushed to the nearest hospital before being transferred on blue lights to Izmir hospital where I spent the remainder of my holiday.

My platelets didn’t get as low as yours, but we had a week of water sports planned. Thank goodness I caught it so soon, I would hate to imagine what state I would be in if I ignored it!

Sorry to hear about your ITP coming back again. Fingers crossed you continue on the road you are on to a long and successful recovery.

[peggyabrams]

Hi

I would go and get bood test for you platelet count asap. At my local hospital if I have a test at say 9.00am I get the results by 4pm. You might be able to access the same thing.

Good luck and let us know ow you get on.

[Davis3924 in reply to peggyabrams]

My GP in the past usually has provisional test results the same day, of which he calls the shots on. I have recently moved to a new area, so I hope it is the same here!

Looking at all the replies on this post, which have been really helpful, I should have gone to A&E, and then I would have known within an hour!

It always boils down to others with me. I didn’t want to drive myself if it was ITP, because I know I would be carted away whilst my car is in the car park racking up a nice bill. Then I am calling on my partner, who is busy looking after my 6 month old. Not something I wanted to do.

Fingers crossed I will know the results soon. As soon as I know anything, I will update this thread 😊🙏

[peggyabrams]

Totally get your concerns.

I have been in renission now for 3 years - I try to live in the moment but it doesnt take much to make me book a blood test. So far these have come back wth reassuring results.

As mentioned by all - best of luck and keep us posted!

[ssbanu]

Go immediately for platelet count and see a haematologist. Nose bleeding, headache, vertigo, dull feelings aren't good and indicate that intracranial haemorrhage might occur. Don't get upset or scared but take appropriate measures. It obviously will subside. Best wishes!!

[Davis3924]

Not much of an update, but I had my blood taken this morning. Didn’t bleed much once the needle was removed, so fingers crossed it OK.

Not many symptoms today, and no more bleeding (Yay!). Just had a very mild headache if anything.

Have any of you experienced aching joints/bones? I’ve had that today along with a pain in my stomach that I can only describe as an ‘appendicitis’ type ache?

[BrittneyH]

Always go to your hematologist or any doctor to get a blood test, you aren’t wasting anyone’s time because it’s their job to ensure your health and safety! Good luck!

[Davis3924]

Thank you all for your replies. The test results show that Daniel.... is normal! Platelet count is up at 257, the highest it has ever been!

Has anybody else had the Anti-Nuclear (ANA) test done? I normally have it, but they have missed it this time.

[CDmom]

Definitely get checked!

Have you had a virus recently? I wonder what triggered it.

Here is my story in case it helps

Went to Costa Rica and got a weird infection. The drs told me I was crazy; I had ITP not an infection.

They gave me IVIG and steroids and promacta for 8 months every 2 weeks with platelets bottoming out at 1,000-7,000 every 2 weeks. It was just a bandaid approach! Even Mayo clinic did not help me. The drs were mad that I refused rixtuin. Finally after 8 months of the rollercoaster bandaid approach, the homeopathic drs treated the underlying cause and infection of some sort. I was cured of platlet crashes after one month of homeopathics.

For me the homeopathics such as cats claw, notanum, silvercillin, Alka C, viruchord, Moducare, immunomod A, and Adenal life force were focused on getting rid of infections, fungus, parasites and then balancing the immune system. I also was advised to go gluten free and decrease dairy. I am not sure if this is helpful for you but thought Id share just in case.

Be Well!

[Davis3924 in reply to CDmom]

Thank you for your reply, and for sharing your experiences.

I’m don’t think I have had anything recently. All I remember is tiredness and aching. The last time I was ‘sick’ was Christmas Day, where me, my fiancé and daughter had a 24 hour sickness bug. We’ve all recovered from that.

I still don’t know what caused my ITP, and much like you, I was handed a bandaid approach to treatment. I was never told what could of coursed it.

My concern is that I have a 6 month old daughter, and no doctor so far can tell me whether she is likely to develop something similar.

The doctors basically turn me away for not being sick. As I don’t have any glaringly obvious symptoms at the time, they don’t act.

I’m going to call tomorrow and ask that I get tested for Lupus. Especially after reading all of the articles online. I don’t have all of them, but I have certainly had most of them!

[CDmom]

Good Luck!!!!!

[dunn258]

I was told if you have a nose bleed to go to the ER immediately!