ITP - My Story

[Davis3924]

It had to be on the first day of our holiday, of all of the days, things changed. I was laying on the sun bed, feeling a little under the weather. I didn’t know whether to put it down to the long day we had before travelling, the alcohol, or the sun, but i felt more tired than usual. Even after a doze, I never felt like I really woke up. Our sun beds were positioned at the end of the front row, right next to the steps that serviced about 75% of the people who wanted to get in and out of the pool. Whilst i was dozing, a child walked by with a huge inflatable crocodile, which brushed my feet as he passed. I don’t like things touching my feet, but especially not big green reptiles. I brought my foot up to scratch it, and thats when i noticed that the rash I had on my arm the night before, had migrated down to my feet.

The rash itself was deep and red. It laid under the skin, but did not cause any raising of the skin. It was worst around the joints in my toes. I inspected my arm again, and found that the rash had spread, and the pre-existing dots had grown, and were following the vein in my arm. Being a 20 year old, i picked up my iPhone, and began sending photos back home to my parents labelled ‘What an earth is this’, and ‘I knew i was diseased!’. There reply was ‘We always knew you were strange. Keep your eye on it, and you know where the doctor is if you need him’.

Later on that day, concern grew enough for me to remove myself from my sun bed, and visit the doctor. I didn’t want to go, and my girlfriend felt the same way. But by this point, i knew something wasn’t right. It seemed too coincidental that I had a rash appear after a flight, that followed the lines of veins in my arms, but didn’t itch, sting, or match with any knocks or scrapes I had received in the usual queues at the airport.

A trip down to the doctors followed, and the doctor and nurses crowded round and poked and prodded. Eventually, they decided that I needed to visit the hospital for a blood test, to rule out anything sinister. There was another family in there with an upset stomach, who were also waiting to be sent to the hospital, so I thought this was perfectly normal.

So we headed over to the hospital with nothing more than the clothes on our backs, and about £10. I was kept at that hospital over night (I wasn't happy at this point), but then the doctors came in the following morning, and told me I was being transferred to the bigger hospital over an hour away for 'Critical Care'. I spent 4 days in hospital in all, and after trying several translators, and going through the holiday company, we found out that my platelet levels were at below 12,000. After 4 days on treatment (I don't know what i received in hospital as it was all in Turkish), i was released with a platelet level of 48,000.

3 weeks later, I am now back in the UK. The first thing I did was take all of the medical records to my GP, who tried to book me an urgent appointment with a Haematologist at our local hospital. The appointment was booked for 18th November, but it was then rejected because they booked it with the wrong hospital?

I have now gone with BUPA. I am currently taking 100mg Prednisolone daily, along with 70mg Aledronic Acid a week to stop the steroids affecting my bones.

I have attached a couple of photos of the rash I had, and also the bruises I was left with following blood tests. They didn't butcher me in Turkey, I just bled... A lot!!

[Visua1ingo]

We have matching arms! I'm going to Mexico for two weeks in March, and I'm a little concerned about what will happen there when if my platelets drop.

Does anyone else take Aledronic Acid? Is this precautionary? I was just told to take 150mg of Zantac daily to prevent ulcers.

Good luck! Hope you can get the appointments you need soon.

[Davis3924 in reply to Visua1ingo]

Haha!! I wouldn't worry too much about your trip, just enjoy it! Make sure you get travel insurance, and you have to declare that you had ITP. I am due to work out in the US for a few months in the new year, and the insurance company said i had to declare it? Might be worth checking, as it is a sting you could do without!

My doctor put me on the Aledronic Acid to stop the steroids effecting my joints and wasting my muscles. I suffer with bad knees anyway, but after taking the steroids, when I got up in the morning, I was in tears through the pain of movement. I couldn't bare any weight on my knees at all. I had to spend about 30 minutes flexing before I could tolerate walking. I don't know if it is down to the Acid, but I just experience sore legs when walking for too long.

How are you getting on with your treatments?

[rjsmyth]

Usual disclaimer about my reply not being from a medical background but from my own experience!

Yours is a story that will be familiar to many on this forum. Luckily at 20yrs old you have age on your side i.e. there is a good chance your ITP will go away quite quickly (acute ITP) rather than becoming long term (chronic ITP).

ITP is a rare condition (about 3500 people in the UK) so your local hospital Haematologist may not be familiar the condition.

If you are with BUPA you could try and get to see Dr. Drew Provan at the London Hospital who is certainly one of the worlds leading authority's on ITP.

Be warned that BUPA will almost certainly baulk at paying for some of the more spectacularly costly long term treatments available for ITP. Prednisalone is cheap method of suppressing your immune system but can be horrible to be on long term so other than getting an OP appointment quicker you may be better staying within the NHS.

The 18th November for an appointment is unacceptable with your condition in the early stages of ITP - you should be monitored (blood platelet count) at least weekly/fortnightly to see what effect the medication is having and the medication reviewed accordingly.

If you get a nosebleed that will not stop after a few hours - take yourself off to A&E as this may mean your levels have dropped too far - below 10 is usually the trigger for urgent treatment.

[Davis3924 in reply to rjsmyth]

Thank you for your reply, it was very comforting to hear! I am currently having weekly blood tests with my GP. We only went with BUPA as the NHS couldn't offer me an appointment in what I believed was a reasonable time frame. I didn't want to have taken over 1,000 Prednisolone tablets without having seen a haemo. I am currently with a Heamo at the local hospital, who I see weekly. I received a phone call today with regards to the NHS appointment. They have had to reject it as it they are not allowed to book appointments that far ahead. It has been brought forward to this coming Friday. I am hoping that I can jump over to the NHS once they have done the initial tests and I can give them the notes from BUPA. It just seems a shame that it took the NHS so long to pick this up. 2 rejected appointment last later, and I get an appointment for 3 days later!