Dexamethasone question

I was recently diagnosed with ITP and my hematologist decided the best way for us to diagnosed my low platelets as ITP was to have me take 40mg dexamethasone for 4 days. My platelets rose 25,000 after taking dexamethasone, so she said it was safe to say that I have ITP.

While on dexamethasone, I felt pretty good. I had a lot of energy but I couldn't sleep. The worst part is now! After stoping dex. I feel sick, kind of like a hungover feeling and I have an awful headache. I am day 5 of not taking dex anymore, and I am wondering when all of the side effects will end?

I have never heard of using Dex as a diagnostic tool. What were your counts when you started it?

The withdrawal can be wicked and many people hate the drug for that reason. It should get better after about a week or so. It can knock you off of your feet.

I recently got them checked and they were 80. We waited a few weeks and checked again and my counts were 105. My DR. suggested starting Dex and if they went up we would confirm that it was ITP. They went up to 130 after Dex. I know these are not crazy low counts, and after reading I am wondering why I even had to do the Dex. I know I have had low platelets for at least three years because we ran into issue during delivery with both of my children. How is ITP usually diagnosed?

bocats10 wrote: How is ITP usually diagnosed?

Ha, not that way! :huh: Usually, if a patient presents with low platelets and no other symptoms such as fevers, weight loss, swollen glands, etc....it is assumed to be ITP. They also look at the blood smear and if all other cells are normal, ITP is likely.

I'm wondering why you had to take the Dex too. No doctor that I have ever seen has recommended treatment at 80. At that point, occasional monitoring is the only thing necessary.

Dex usually results in a much higher platelet response followed by a very fast drop. Hopefully your counts won't do that.

We did the blood smear and everything looked normal. I think my hematologist is leaning on the very cautious side. What do platelets usually jump to after dex? I'm 4 days off of Dex.

It depends on the individual. Some get no response, some get a minimal response, but most get a jump that can go into the hundred thousands. The problem is that they usually fall right back down pretty fast.

Prednisolone is used in a way, as a test for ITP in that it's usually the first treatment to try and if the count doesn't rise then more tests may be done, bone marrow and so on, whereas if the count rises then it confirms the diagnosis.

When I was diagnosed I tried IVIG and then anti-D, neither of which had any effect and there was some talk about the diagnosis until I had a good result with prednisolone and that did confirm it.

bocats10:

I would question why your doctor felt the need to put you through any sort of treatment. Especially if everything else came back normal and your count was that high. Were you having symptoms? Do you lead a lifestyle that very risky (high wire act? knife juggler?)


I am not telling you to go against your doctor but please research this as much as you can. Use the PDSA web site it is very up to date on information. Use this beginning as a stepping stone for further conversation with your doctor.

Open a dialog with your doctor to discuss what will be your treatment protocol if any? Decide will you treat at a specific number or symptoms? have a discussion about what happens if your count stays in this range? Will you do a watch and wait? How often will you be getting your platelets checked?


Remember to look at the entire picture: lifestyle, counts, symptoms, treatment options, side effects, insurance cost/ coverage. That way you have a plan in place a head of time. Be your own Advocate!!!!!

Ann, I've heard it said that a response to Prednisone can indicate an ITP diagnosis, but over the years there have been many, many people who do not respond and still have ITP, so that's not very reliable. I thought that was an older way of thinking and I would hope that doctors wouldn't do a BMB biopsy based solely on lack of Prednisone response. If a doctor were to use that as a test, a lower dose of Prednisone would be better than 40 mg's of Dex! Torture for nothing.

My doctor did sort of the same thing initially....Win-Rho and Danazol. I had no response but he didn't question the ITP diagnosis. We moved on to Prednisone and that worked.

Odd that you didn't respond to IVIG. Most do. I'd be happy about that because it is a very time consuming treatment!

When is this headache going up end? It's here everyday. I keep taking Tylenol and it helps but my goodness. Everyday this past week I have had such a strange headache with vertigo here and there. This will stop right? I'm at day 7 off of dex.

Of course in this case the doctor had no need to do anything at all as the count is fine. It was a strange thing to do. And I agree Sandi, that a lack of reaction to steroids shows nothing but a reaction to it does show something. My haematologist in Canterbury at that time was concerned when I hadn't responded to two treatments and was beginning to think it might be something else especially considering I had cancer in my past history. When I responded to the steroids the relief was enormous not just for me but for the doctor too.

Bocats, I too had vertigo and a sort of drunk feeling after dex. It lasted for me for a week but I only had half the dose that you had so yours may last longer, but you should feel better soon. Let us know how you go.

I remember when they diagnosed me.

They sent me for test because I had a knee operation and bleed for about 4 days afterwards (nothing serious but way too much considering the op)

Had various blood test.. they did the finger prick test to see how long it took for the bleeding to stop (it was about 15 years ago) and did a bone marrow test.

I remember the specialist at the time telling me most of tests are to rule things out and to be on the safe side.

I remember when my platelets crashed a few years back, I can't even start to tell you how much blood they took and how many tests they ran, only that it took 2 weeks for all the results to come back.

Again my Hemo said she was just being sure and that even thou she knew some of the tests would be negative, since they only required blood being taken, better safe then sorry.

Never ever heard anybody being given drugs to test for ITP.. ever.

I, too, took the 40 Dex pills. They worked great as far as a "temporary" boost for ITP. However, along with them came excruciating abdominal pain, even with taking Prilosec every morning for the 4 days. In 4 weeks it was all a dream. The Dex rose my platelets to 128. Last Tuesday - 4 weeks later - they were down to 37 - right back to square one. The only thing they really raised was my glucose - from 90 to 128! I sure don't need diabetes! I will not take them ever again. I read that guava can help. I've been drinking guava juice with pulp. Have you heard about that - have you tried it??? My next labs are this coming Tuesday. We'll see if guava helps!