'Roids??? Do they work???

Just wondering I'm interested to know if any of you have found that steroids have actually helped you? I have taken them before but never ever worked. Like I took them until I have a chipmunk face (seriously!) and gained like about a stone and nothing changed. I have heard of similar people saying they do nothing and I was wondering has anyone had like big boosts in numbers from them?

I was put them on for a month by this guy,(who said he was a doctor but I wondered at times) he gave me 50 mg for a month last year to know changes except my weight and my mental state. I changed doctors who put me on cellcept and after two months they rose with no side effects. So any thoughts? Do prednisolone work? Or have ever worked??

Yes, Prednisone has worked for many people. For some who are responsive, they can see a fast jump to high counts and attain remission. For others, they will see a fast response but counts fall again when they taper. Some people have a minimal response in counts. Everyone is different. It works often enough that it is still considered to be a first line treatment.

Thanks, sandi. I guess I wish they had worked for me. Only because if I'm going to have to deal with all the side effects it would have been nice to see a response. Hence why I changed doctors cos he wanted me to stay on pred and if that did not work I would get my spleen removed after six months. I said goodbye and luckily I got the best doc in London who listened and now I'm good.

Ha, I was one who wished that Prednisone had not worked for me because that was all my doctor wanted to treat me with for years. It got old fast. When on 40 mg's, I'd go from single digits to over 200k in a week. Sustaining the count for me was the problem, because I usually fell in a few months time. Once I did have a remission that lasted about three years before I had to treat again.

Ash,

Prednisone did not work for me. However, I was off of it after 3 months and am now on Nplate. I'm glad you found a new doc who was willing to try something else, besides spleen removal.

Hi Ash,
My daughter (same as Sandi) wished she didn't respond so well to the pred. Within a week of high doses, counts will generally be around 180, but will always drop with the taper. At least we know we can always boost her counts if the need arises.

I'm one of those who responds to prednisone--though I don't think I respond as well as I used to. I'm usually on 10 mg/day now, so my counts will stay in the 40-50K range--which, because of my current propensity to have nosebleeds, seems safer than the 20-30K range I used to maintain. I'm also one of the lucky ones that hasn't (yet--after 13 years) had bad side-effects--to my knowledge--from prednisone. BUT I've never been on big doses. Even before surgery, I had short-term dose of 30-60 mg.

Hi Ash,

I've been responding to prednisone. I started on a 60mg dose tapering down 10mg every week. I'm currently on my last week of prednisone. It's nice to only take 1 pill every day as opposed to 6. My counts with prednisone have been consistently in the 200k's, but that could also be from the IVIGs I had too. I'll be seeing my hematologist in October, so we shall see how things go then. I've gained like 10 pounds in the 5 weeks I've been on prednisone. I have a whole lot of acne on my face, neck, shoulders, and back too from it. Plus, I think it was giving me joint pain when I first started taking it. I can't wait to be off of it, but I'm scared to see how my counts will fare after I am off of it.

-Kristina

Prednisone work wonders at getting my platelets up. Also gave me all the side effects and some. Great news I developed hives from it so hehehe I never have to take it again! Whoohoo first time I was ever happy to have hives lol

Hi there,

Just wanted to give you a bit of hope when it comes to prednisone. It 'cured' my ITP - or at least it sent me into a sustainable remission that has lasted 9 years and is still going strong (my platelets have been in the 350-450 range for the past 9 years).

When I was first diagnosed my platelets were at only 2,000. It was a very acute case - I felt fine one day and over a weekend, I was covered in bruises and blood pooling under my skin.

My first hematologist put me on prednisone 60mg a day but tapered down within 2 weeks. Needless to say, the initial boost of platelets was rapidly chewed through as I tapered down and I was back down to 15K platelets.

I went to a second hematologist and his opinion was that it was best to hit 'hard' with prednisone - he put me on at a dose that was actually higher than recommended for my weight. I was on 100mg a day and weighed 128lbs. I had all the lovely pred side effects and I'm not gonna lie - it was really harsh on my system. For this reason I loathe prednisone and I'd probably break down sobbing if I had to do it all over again because I know how hard it is - but... it did send me into remission. Total amount of time from beginning the pred treatment to the final taper down lasted about 5 months. My platelets were in the 300 range when we finally started tapering them (I think it was about 6-8 weeks at max strength). The taper down was very gradual with weekly testing and they held.

I know pred is awful and I know doctors sometimes take a more conservative approach to the treatment as far as dosing goes, but in retrospect the suffering involved with side effects for those 5-6 months were better than years going on/off the drug at lower doses.

I'm not saying that this is the cure for everyone.. but it did work for me. I also wanted to give some hope to those out there that remission is *possible* for prolonged periods of time. And good luck with your prednisone battles. *hugs* I know stressful it is.

PS. re Weight Gain/Side Effects - thing I'd recommend most - stay hydrated, eliminate all salt from your diet and buy bland low-fat things in bulk for when you're really hungry. I subsisted on tons of veggies and rice cakes with sugar-free jam when I had the pred-munchies. No matter how much I ate, I felt like I was always starving - so it's better to binge on healthy foods than unhealthy foods. In total, I gained about 10 lbs and had tons of water retention (I'm prone to it). I think the moon-face bothered me more. The weight came off and face returned to normal though once I was off the pred for a few months. Keep the faith!

I'm actually wondering if it is normal for the pred to work so well. I was diagnosed on Dec 26th. I had a count of 14. I was put on 50mg pred. I weigh 102 pounds, so that seemed like a pretty large dose. I was on that dose for 2 weeks. I had my count taken again and it had jumped to 306! Is that normal? My hematologist lowered me down to 30mg now. I assume my count will fall at least a little bit. But I'm just curious if it is normal to have such a huge jump.

People who are responsive to Prednisone will have a huge jump like that. My counts have gone from single digits to 300k in a week after starting Prednisone. The problem is maintaining the counts. Sometimes they stay up and sometimes they don't.

I am very responsive to prednisone and I can go from single digits to over 300k in about 4 days when on high doses. My counts drop very quickly when the dose is lower than 15mg.

Thank you so much. This is the first time I've had this, so I'm trying to learn all I can. Hopefully, my count will stay up, but it's good to know that is a normal response.

I used to respond to prednisone and now I don't and I am thankful for that steroids had messed my body up my neck bone had deteriated some which only hurts sometimes but if I would have continued who knows I also started my diagnoses with itp at 103 pounds on steroids over three years I gained almost 100 pounds I hVe been off steroids for about 5 years and have lost 60 of those they are hard on your body for sure!