What if you don't take steroids?

Just curious. Has anyone chosen NOT to take steroids or other treatment when he was at zero platelets showing a lot of rash and some mouth sores? I am told by my doctor that you must ALWAYS take them, 60 mg at the first sign--rescue steroids. If you chose not to take treatment, how did it work out for you?

I would be curious to know too. You are thinking what if someone just did a watch and wait approach?

I

If I didn't treat when that low I'd get huge blood blisters all over my lips and I'd look a total mess!

However, I wouldn't take 60mg steroids. I would only ever take 15mg for a few days before tapering to 10 and then 5. That would keep me up for another couple of weeks before I had to start again. If I was on another treatment like Nplate and crashed I would wait for the Nplate to kick in and refuse rescue medication.

RHofm50129 wrote: Just curious. Has anyone chosen NOT to take steroids or other treatment when he was at zero platelets showing a lot of rash and some mouth sores? I am told by my doctor that you must ALWAYS take them, 60 mg at the first sign--rescue steroids. If you chose not to take treatment, how did it work out for you?

15 mg of prednisolone(steroids) was the maximum dose which I have taken before.

Recently, I won't take steroids or prednisolone even my platelets count was low, my doctor said that it has no impact on my platelets count/stopping the attack by the immune system.

Ultimately, my doctor discovered using cyclosporin A and promacta was the only option to make my platelets count become stable, also it needs ivig support until cyclosporin A become effective.

I'm sure there have been people who have refused to take steroids at low counts. I had a count of 3k while going through Rituxan and refused Prednisone when my doctor suggested it. I chose to wait it out a few weeks and see if Rituxan helped. So you don't always have to take them; no one can force you. I also would not start at 60 mg's. I did that once, never again. 30 or 40 is enough for me.

I have seen people here ride out low counts to see what happens. Sometimes they rebound and sometimes they don't.

I would agree to take 30 when my dr. wanted me to take 60.
Erica

Well, the thing is that when I had my ITP event, I was at zero for ten days. None of their treatments worked. They killed off my red blood cells, tried 3 winrhos, etc. Stayed at zero. Then on day 11, my platelets suddenly kicked in and within two days I was at 24, then they shot up at 1,000 per hour and within a few days I was in the 300's where I have stayed for the past 13 months. I was tested again last week and was holding at 333. So I was thinking, was it the steroids that helped or would my body have handled it without them. And the steroids gave me so much trouble, and I think are still having an effect on my muscles, that I wondered if they were really necessary and for so long and at such a high rate. My hemotologist said at the first sign of a reoccurrence, I should take 60 mg. He said they ALWAYS give steroids and looked very sober. So I don't know what to think. Who would want to take them if they could do without them?

Roberta:

Some people do not respond to steroids at all, so it would be pointless to give it to those people a second time around. I don't think the word "always" is very accurate. I would say that usually, a newly diagnosed patient would receive Prednisone. However, that didn't happen when I was diagnosed. I was below 10k and my Hemo tried five weekly Win-Rho treatments. They didn't work at all and I was low the entire time. He then tried Danazol and I was allergic to it. At that point, we tried Prednisone which did work. That treatment order was a bit out of protocol and Win-Rho was a waste of time, but he did try other things first.

If a person relapses, they can opt for any treatment option and do not have to use Prednisone if they don't want to. Many, many people have decided against Prednisone a second or third time around because they didn't like the side effects. I went for Rituxan after a few relapses for that same reason. You, for example, could opt to try a Rituxan/Decadron combo or Promacta/N-Plate if you wanted to. If he didn't want to back you up, you could get another doctor. You could also opt to wait it out depending on symptoms or try IVIG to see if that might boost you until your body kicked in. It's kind of ridiculous to make you feel as if you don't have a choice, because of course, you most certainly do!

I will continue to avoid steroids as much as possible. I have not taken Prednisone since 2002.
I have used Dexamethasone pulses a bit - as it a quick 'rescue'. But I have not used any since February of 2013.
Note: The psychedelic side effects from 40mg Dex pulses can be quite entertaining. You just have bear in mind that it is the Dex, not reality. Just remember what Zeks said while flying a spaceship zoned-out on Nyborg (Heavy Metal, 1981).

I have also gone a few months with no treatment and counts around 4k. Ive been in the 4k range so often over 12 years that it has ceased to generate any excitement now. Serious ho-hum ....

My hematologist doesn't force anything on me. We both know generic Cellcept will never get me above the 9k-20k range....in fact it is usually in the 8k-13k range. We also figure it will simply stop working at some point and then I'll try something else.
I went through that process with Cyclosporine already. Worked well for two years, then just stopped.

It is really no big deal for me. Life continues.

Everyone is different though.


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I can't imagine my doctor forcing steroids on me. I am just questioning the wisdom of not using them. I had 3 win-rhos, including a double one, which did nothing at all. I had 5 ivigs--nada. My doctor said he thought my platelets dropped precipitously and that my body was not ready to begin replacing them for ten days. Then it realized what was needed and went crazy. Assuming that an ITP event was caused by a virus, it rather stands to reason that until the virus causing it was gone, the ITP would stay.

How long did you stay on 60 mg/day? How did your body react at lower levels of pred? How long have you been prednisone-free?

When I have dropped to single digits, I've started at 20mg/day. I have been very lucky in my reactions (so far--since 2000) to pred, but I am almost never on high doses--and a high dose for me would be 30 mg/day.

RHofm50129 wrote: I was in the 300's where I have stayed for the past 13 months. I was tested again last week and was holding at 333.

Personally if I had counts of 300+k for over a year I wouldn't even be thinking about if I should or shouldn't take prednisone when/if my count ever goes down again. I had about 9 years of 85k-125k and was only having a count done at yearly physical.

When my count did tank after a tetanus booster my hematologist's office found my records in their basement and had me in the next day - when she got out her prescription pad I said I would not take prednisone.

But with your count I'd be jumping for joy and enjoying life to the fullest not thinking about prednisone. Good luck!

When I took prednisone I went from a size 8-10 to a 15-16 in a month. I was talking to spiders and scaring the heck out of my children. When I broke out in hives is when I said enough is enough and have refused to take them ever since.

Because I refused Pred after that I did spend many a time walking around with single digits. Waiting until the bruising/ bleeding got to bad. Than I would go to emergency and get something else. (IVIG)now I use Rhogam (winrho).


The question here shouldn't be what if you don't take steriods?

The question should be: Why do you not want them? What are my treatment options? What are the side effects? Which treatment works best for me? What is my lifestyle? what is my count? what are my symptoms?