Steroids

[lindseyl]

I have had ITP for about 8 years now and am 20 years old. My platelets are usually between 15 and 50 the only treatment I have ever gotten is a platelet infusion right before knee surgery. I have never been told I needed any type of treatment or medication. I live a normal like and only keep it monitored. I am tired all of the time 24/7 and bruise easy those are my symptoms. I was just wondering why people need steroids? How does it help? What other types of treatment/medications do you all take and use? I would love to know because my hematologist has never mentioned anything to me like this. Maybe my platelets are too high for treatment.

[Katyq]

I used steroids for a month before giving birth to my first child - they didn't work and my platelets continued to fall. I am not sure if steroids could be used long term.

[Morgan]

Hi I had steroids only for an ooeration and they did not work. Other than that I have needed no medication in the 10 years I have had ITP, platelets varying 10 to 35.

[lukerlicious]

I got admitted with ITP in May this year. I had a count of 1. They started me on steroids straight away. Initially they did not work and after 5 days my count was only 2. Eventually I got given 24 bottles of IVIG intravenously which did the trick and I was allowed home on day 8. They however sent me home with a 90mg a day dose of steroids (very high). What the steroids do is dampen down your immune system. Your immune system is attacking your platelets, therefore the steroids effectively slow down your immune system, giving your body a chance to make platelets without your body killing them. I was on steroids untill about Sep this year, dropping my dose every few weeks, with twice weekly clinic trips. They have worked for me and I am now stabilized between 200-300 count.

However my steroid journey was not a pleasant one. I put on nearly 3 stone, I was swollen, uncomfortable, had severe acne, insomnia, half my hair fell out when I came off them. I put up with it because it was making me better, and ultimately I have now come through the other side.

Hope this helps x

[swheels in reply to lukerlicious]

I'm with you there with the side effects, I had them when I relapsed and when a virus triggered a reaction, put on weight etc, had knee cramps, ate healthy which didn't work and grew a furry face, not a beard eeww thank heaven. I first had them when I was 3 years old, I was fat and out of breath, then after I came off them I shrunk to a skinny child, as if I 'd been vacuum packed haha. I'm 43 now, only need a short sharp shock treatment, big dose then graduate down. The only thing I wish they had done was left me with a healthy count like yours. I generally run a count between 15 and 25, but last week I had a count of 38 now that was such a great feeling as this was without platelets infusion or steroids. Hope this is a lucky turn for the better. Merry Christmas, Sheila

[scaryteacher]

I've had ITP for 18 years now, got it as a side effect of pregnancy, and I have only had steroids for surgery, dental work, or when my platelets are really low and need a boost, so about 4 or 5 times in 18 years.

I get very tired, bruise quite easily and have a rash which gets darker when my count drops, over my feet and lower legs. When it begins to climb to my knees, I know I need to get tested.

My sister in law is on very heavy steroids for a different auto immune disease, and seeing the effect they have on her, I am happy to play it by ear and be monitored for my count once every six months or so, and just to listen to what my body tells me. Having ITP isn't the end, I've had a baby, and a an absorbing job as a teacher, and the pace of that was doable with this.

Much of the time I forget I have it and just get on with life. Perhaps the doc hasn't mentioned steroids to you because of the side effects. I didn't want them when I was diagnosed at 29, and at 47, I haven't changed my mind. Sometimes they work, and I feel like I was 18 again, like a bunny on speed with bags of energy, and yet the last time I had them, a fortnight ago, they only raised my count to 43, (so God knows what it was to start with), and made no discernable difference. It made the dentist happy that I wasn't going to bleed everywhere in his chair though!

[NickyD]

Hi lindseyl I was on and off steroids for 24 months and put on four stone in weight. Luckily that has all come off now and I am so much better. Side effect are awful and I hope never to go back on them. I have had lots of different treatments and fingers crossed my new treatment is working well for me. Some ITP sufferers can cope well on a count of 10 and lead a normal life. On the day of my splenectomy I had a count of 39 . You need to have a count of 70 or over to have a major operation. To get over this hurdle I had two simultaneous transfusions of platelets throughout the operation. So, having a low count does not preclude you from having major surgery. If you are coping with a low count - stick with it. Fatigue is a common complaint. One lasting thing I have had to cope with since taking the steroids is memory loss. Like lukerlicious I was on a high dose of steroids and suffered all the same side effects apart from the memory loss. I was warned about it and now still have it. My memory is coming back but it is rather scary when you completely forget having done something only 10 seconds earlier. It is not the same as being forgetful or absent minded - it is full blown memory loss. Mind you that is better than the hallucinations or the suicidal feelings that I could have had! Take care. NickyD

[lindseyl]

Thanks for all of the replies! I'm glad to hear more from people with ITP. Those are some scary stories though and it makes me feel lucky! NickyD, you seem to have been through a lot of scary stuff because of ITP but seem very brave. lukerlicious, that makes me glad I have never had to try steroids! Thank goodness.

Thanks again for the replies!

[Elmarie_Potgieter]

Hi Lindseyl.

I was diagnosed with ITP February 2011. I was hospitalized for about 4 days was on steriods for a month. When diagnosed with ITP I had a platelet count of 13. After a month on steriods my count was between 250 - 300.

Then in May 2012 my platelets dropped to 20 and I was again hospitalized, this time for a week and a half. Again on steriods. The lowest my platelets dropped in hospital was 7 (while on steriods), a month and a half on steriods my count was between 200 - 250.

All good and yet again 16 months after (on 11 October 2013) I was hospitalized yet again for low platelet count. On the 10th of October, the Thursday, my count was 20, my doctor felt it good to hospitalize me and put me on high dosage of steriods immediately. On the Saturday 12 October my platelets have dropped to 2. (This with steriods). On the 30th of October (19 days later) I was released from Hospital with platelet count of 48. It was a Wednesday and the only reason I was released was due to the fact that on the Friday 01 November 2013 I was admitted again for my splenectomy. The steriods and the 5 platelet transfusions that I received during the 19 days in hospital did not work as well as we would've liked this time. I guess each time was different just as each person is different.

After my splenectomy my platelet count has risen between 500 - 600, which is a concern to me. I'm on blood thinner meds (Bayers Aspirin) to avoid blood clots or strokes. I take my blood pressure every 2 hours as well as my temperature just to be safe.

As my splenectomy is still new and I do understand my body should still get use to the fact I don't have a spleen anymore, I do feel depressed sometimes about this whole thing. It just feel that this thing has come from extreme lows to extreme highs and there is nothing that I can do. I'm due back to see my doctor on the 9th of December for a checkup.

Oh the side effects I had from the steriods: Apart from picking up weight (25kg, about 55lb's) and having a swollen face and feet, I also lost my taste for food, specially sugars and salt. Still today, after being off the steriods for more than 2 weeks now, I still cannot cook food properly, I need my husband to come and taste if I have added enough salt / sugar etc. I remember being in hospital after the splenectomy that I actually started to cry when it was breakfast, lunch or dinner, not because the hospital food was bad, but because I couldn't taste anything and to me eating something that taste like nothing was just a waste of food really so I hardly ate anything in hospital.

The other downside is my eye sight is a bit blurry, I can feel it getting better every day, but it's not totally there yet. Strangest thing is I can see better without my glasses than with my glasses, but the doctor said all these should get back to normal soon.

I have also experienced some memory loss like NickyD, I know there was a time in hospital that I read a story in a magazine and half way through couldn't remember what I have read, not wanting to start from the beginning, I just stopped all together. Still haven't tried to read a story in a magazine, should maybe try it sometime.

[swheels]

Your count is probably high enough not to need steroids, they tend to use them when the count is below 10. It's used short term as they deteriorate the calcium in your bones. The side effects are not good, fromknee cramps at night, insomnia, weight gain, hair growth in areas not normally hairy lol and heart burn or indigestion. I had a bout of them when I was a toddler, when I relapsed at 25 and a few years ago after a virus triggered a reaction. I'm 43 now and really don't want to have them again haha. Take care, Sheila