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TOPIC: Newly diagnosed and depressed (but that's probably the steroids)

Newly diagnosed and depressed (but that's probably the steroids) 1 year 9 months ago #60497

  • Arjumand
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This time last week I had never heard of ITP.
For context, I live in a small country in the Mediterranean, and at the moment we're going through an unusually hot period for the time of year - so if I did feel tired at the time, I put it down to the heat.
Anyway, about 10 days ago, I woke up with what looked like a rash on one leg. The next day, it was on both legs, and the day after that, I had bruises on my arms, which I definitely didn't remember making. Finally went to my GP who sent me for a blood test, which had to be repeated, probably because the med lab couldn't believe what they were seeing, that is, a platelet count of 0.
It was quite a shock to get an afternoon phone call from my doctor telling me to pack a bag and go to hospital immediately. We have one national hospital (which is free because we make payments into a fund until we're pensioned) and a few private ones which are not for emergency cases.
So off I go, knowing that I faced a long, terrifying wait - I'm in my late forties, but have no children, and have only had a colonoscopy in the past- no other visits to hospital.
After about 3 hours, I finally got to see an admitting doctor, and the tests started: more bloods were taken, resulting in huge black bruises, an EKG, a chest X-ray, urine test.
The doctor repeated my GP's initial diagnosis, and admitted me to an observation ward, to be seen by the consultant hematologist in the morning. This was at 1:30am. At 3 am, another doctor came to see me, and when I mentioned I had a headache (I have sinus issues) sent me for a CT scan. The next morning I was sent for an ultrasound exam.
All these were clear, so the process of elimination resulted in the diagnosis of ITP - which is when I started researching the disorder. Oh, and for the first time in my life, a medical professional told me she was relieved I had not been losing any weight recently! I know it's because low platelets can be a symptom of leukemia, but it was funny for me to hear, after having my weight issues shoved in my face all my life.
Treatment started with 5 days IV-Ig and prednisone for 4 weeks, though I have to go for a review to the oncology Centre, where blood stuff is handled here (and the look on my mother's face when hearing the word oncology was something else), so maybe they'll be tapered off. Because within 3 days, my platelets went up to 114, and when I was discharged they were up to 200.
I'm mostly worried about the diabetes risks associated with high doses of steroids, and am having to watch GL loads for everything I eat for the first time ever. Even worse, I suffer from IBS, so foods which are low GI often give me diarrhea, and vice versa. This is not helping.
I'm trying to be positive but it's hard. I know I'm luckier than most because I got all my treatment for free ( technically- like I said we, we pay percentages off our salaries all our working lives) , but I'm feeling weepy. Stupid steroids are turning me into a teenager again.

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Newly diagnosed and depressed (but that's probably the steroids) 1 year 9 months ago #60499

  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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Glad you found this site, there is a lot of great information to be found here and great people to help you out. I had almost the same experience as you, I'm a 50 year-old and pretty healthy. My call from the GP came in a Saturday, told me I was already admitted and to go straight to the hospital. The elevator doors open and I'm on the cancer floor, needless to say I was freaking out. My hemo is in the local cancer center so every trip to give blood or see him keeps me from feeling too sorry for myself.
Look at the treatment section, that will give you some idea of what to expect next. Your count will climb some more up to 3 weeks out from IVIG. Then expect a drop as the IVIG gets out of your system. IVIG will last 4 to 6 weeks for those of us that respond to it. Then you will know if the steroids are going to work. I had no steroid response.
Hal9000 has a great chart that shows the different treatment options and what has seemed to work for people when certain treatments don't work.
Good luck and welcome.

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Newly diagnosed and depressed (but that's probably the steroids) 1 year 9 months ago #60500

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Hello, I'm glad you found us. ITP can be very scary at first, but in time you will learn that you can still live a totally normal life. As long as you can get counts up, and it's obvious that you can, there really isn't anything to fear. Treatments can be the worst part of all of this. Some of them are not pleasant.

Try not to let the oncology aspect scare you, most oncologists are also hematologists and that is the only connection.
It can take time to find a treatment that works for you, and that means finding one that will keep counts up with few side effects.
Sometimes that is trial and error. Prednisone is usually the worst, but is generally the first treatment tried. Prednisone induced diabetes is usually temporary and will get better as the dose is tapered. It's not very common and we don't see that here very much. Try to stick to meats and vegetables, there are plenty of healthy foods that you can eat!

This does get easier to deal with as time goes on. There is also a chance that it could be an acute case and will go away eventually. Many people go into remission too. There are plenty of other treatments to try if this isn't working for you. We all hate steroids but most of us have been on them more than once.

Stick with us and read. The more you know, the better off you will be. An ITP diagnosis can turn your life upside down but believe me, in time it will just become a part of life and won't be the main thing that you think about all the time.

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