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29 Sep 2019 16:37
  • Carcamoc10
  • Carcamoc10
Hal: thank you so much, I definitely am grateful to be where I am even though we haven’t landed on a definite conclusion. It’ll be unsurprising to start the 25mg and have to stop again due to high platelets. Obviously, I really don’t want to get ahead of myself but I just have a feeling. Until then I’m still on weekly labs, really supposed to be twice a week at the moment but it’s been crazy here lately :(

And thanks for the info on the probiotics, I’ll look into it!
29 Sep 2019 18:32
  • Dutton1888
  • Dutton1888
Hi, my 16year old son has chronic ITP . I have just purchased a hot tub for our garden . Is it safe for him to go in ? His platelet count is very unstable and goes between 10 and 60. Please advise
29 Sep 2019 19:05
  • b2h
  • b2h
30 Sep 2019 03:28
  • jhonmiller
  • jhonmiller
Thanks for such healthy discussion on the topic of Grills. It really help me out in getting the valueable insight.
Category: Man Cave
30 Sep 2019 13:41
  • MelA
  • MelA
Personally I'm not a fan of hot tubs so I don't know
Have you asked his hematologist?
30 Sep 2019 14:13
  • running4cake
  • running4cake
Hi Everyone,
I’m not really a social media/forum guru so hang with me here. I’m a bit out of my comfort zone.

I’ve (34 M) been recently diagnosed with ITP. It started with a trip to the ER in the middle of the night due to strange bleeding in my mouth (early August 2019) and it has been a whirlwind of a few months ever since. I feel like my life has been turned on its head and I’m completely powerless. I went from a healthy thirty-something one day to having this strange, largely unknown disorder in the blink of an eye. I have a family with young kids at home who now constantly worry about me and I can’t do anything to help them.

I went into the hospital that first night where they found my platelet count to be 0.

After a round of IVIG and dexamethasone I was released a few days later with a count of 50.

A week later I was at 167 and things were looking up!

Until I went in for another draw and was back down to 38 a week and a half later. A few days later I was at 43. Then a few days later, 16 and was started on 100 mg/day of prednisone.

From there I went up again! A week later I was up to 147 and things were looking good again! I was cut to 50 mg/day of prednisone to start the taper.

Untill today I went back and was back down to 80… I’ll go back in another week where I just can’t figure I’ll be anything but low again.

It’s only been a month and a half, but the cycle of joy (ecstasy!) and depression is starting to wear thin on me and my family. So many questions and unknowns with no answers. My hematologist tells me that “steroids work on most people” so does that mean I’m in real trouble? If steroids can’t do it like they do on “most people” is anything going to work? His next step is Rituximab, followed by a removal of my spleen. Then if that doesn’t work, “it’s a very serious situation that may not end well.”

Do people die from this?

The more I read about ITP the more unknown it seems to be and the harder it is getting.

Thanks for letting me vent. I don’t really have anyone to talk to that isn’t already in stitches worrying about me and I don’t want to make them worse.

Have a great day.

Edit: I don't know if it's relevant but I guess I should add, for a few years my baseline platelet level at my annual physicals has been around 130-150, but stable and has never been low enough to concern anyone. And about two weeks before I first went to the hospital in early August, I had some sort of flu-like virus that I got over but the doctors initially said they believe is what caused the ITP in the first place. Who knows if that's true or not, but I figured I would add it.
30 Sep 2019 18:28
  • MelA
  • MelA
I was surprised to see they cut your prednisone dose in 1/2 - that is drastic! That was done to me back in 1989 as they wanted me off pred before moving overseas and my count hit the gutter fast! [Did you see that it was 1989 when I was diagnosed? We moved to Tokyo shortly after diagnosis!] Steroids worked for me - I was on them a few years because I didn't want my spleen removed in Hong Kong where we moved after Tokyo. Because of that I did a very very slow taper and once we got back to the States I tapered off - I still have my spleen since it wasn't a guaranteed cure. Now my count isn't in the normal range 99.9% of the time - but prednisone did put me in a "remission", didn't need treatment and had a decent count. Most of us do not strive for a count in the normal range, but a decent livable count.

Quit reading about ITP unless you are reading good legit sites! I'm not dead yet so that should be a positive sign for you ;) This was new to all of us believe me. The virus you had could have triggered your ITP - and before that your count was in the normal range, don't forget that a platelet count isn't a steady number as it does go up and goes down.

Stress isn't good - try not to stress! I'll bet you are going to do just fine - do read all you can, I suggest checking out the tabs at the top of this page - get to know your body and remember you have a say in what is going on with it [that's why I refused to go on prednisone 13 yrs after diagnosis when my count tanked & our son was getting married - didn't want pred face for the wedding pictures, had WinRho instead and that did the trick giving me a decent count again].

Others more knowledgeable will chime in with better responses than mine - in the meantime try not to worry and stress out! Keep us posted & good luck to you!!
30 Sep 2019 19:50
  • poseymint
  • poseymint
Some of the things your doctor said like "it may not end well" is absolute nonsense! Really an insensitive thing to tell a patient along with it being totally not true! Most people can live fine with low platelets, You didn't die from having ZERO platelet count, right? Just remember that, you are okay. Its just something you need to manage. There are many more treatment options. If he didn't mention Nplate and Promacta, I would say your doctor is not up to date. These are drugs that are very effective and designed for ITP. My advice is you should take caution with this doctor's advice.

And educate yourself. Read the Mayo Clinic website and the PDSA "Disease Information"- very important to read all about the treatments. ITP is not a big deal as far as chronic diseases go, I know its hard to be healthy and then be diagnosed, but ITP for most people is very manageable. Many people go into remission esp. in the first year. I would never consider having a splenectomy in the first year and without trying some treatments. I have had ITP for 12 years, my counts have been below 10 many times, without any issues. I still have my spleen because its working just fine. I'm on Nplate which is a weekly injection. I have not gone into remission but honestly many people have. I do fine with counts above 20 and try to keep my counts around 50 which is a safe number- your counts don't have to be in the normal range to be safe. They can do open heart surgery with a count of 50, my doctor told me.

The old protocol was to try Rituxin as a second line treatment, but there is some new thinking that Nplate and Promacta might work well as second line to put people into remission. I don't know- I tried Rituxin and it didn't do much for me. But the important thing is that you can make your own decisions. I am on my third hematologist and he is the best. I had to change doctors to get someone I felt was very knowledgeable and up to date, plus easy to talk to. ITP is rare and for that reason many doctors have little to no experience with it.

Re: steroids- yes most people respond to them but very few can sustain higher counts. Counts go up and down with the dose. So you are totally NORMAL in having falling counts as you taper off of prednisone. But its good to know that you respond to them, you can then use prednisone as a rescue remedy. Its not a good drug for long term use but good to bump up your counts when you need it. As Mel said, that is a fast taper. Good luck- try not to worry, ask questions- theres a lot of good information on this forum, and thanks for sharing your story.

PS. I would get a second opinion, see if you could find a doctor that wasn't trying to scare you to death, and was more up to date on treatments.
30 Sep 2019 22:35
  • b2h
  • b2h
Welcome. Yes, it certainly can be a roller coaster that can cause a great deal of anxiety in the beginning and even later on, depending.

IVIg and steroids is the standard emergency treatment and being released at 50 sounds typical as well. 167 is great. Glad you had such a good response. How did you feel on those medications? Any side effects? With the drops, have you had more bleeding in your mouth or other symptoms?

Steroids certainly can be a long-term treatment. It has been for many. Personally, I think steroids are over used and trying something else would be better in the long run. It is interesting to me that recently a few newly diagnosed people have written that their hematologists went straight to Rituximab as a first line treatment. I would think Nplate or Promacta would be more first-line, but perhaps they are trying to put an end to the ITP first, in the hopes that it won’t become a chronic condition.

I realize right now you just need to get stable, but you may want to look for a different hematologist. Being told, “it’s a very serious situation that may not end well” shouldn’t happen, especially since you are so newly diagnosed. You still have many treatment options, so don’t lose hope.

As with many diseases, there is much that isn’t understood, but lately there seems to be more ITP research being done and there are a few fairly new drugs/treatments that are very good.

I don’t know about the flu causing ITP, but have heard that thought from others. If it did, perhaps the ITP will be short lived.

Are there any ITP support groups near where you live? Even if you don’t want to attend a group, the leader of the group may be able to recommend a hematologist or two.

For the stress and anxiety, I’d say it’s a process and you and your family will get to know how the ITP experience is for you. You will get to know how various treatments and all aspects of life affect ITP and you. It’s totally normal to feel all over the place emotionally. It’s tough and there is definitely a mourning for the life one once had. However, you are by no means in a hopeless situation. Glad you posted.
01 Oct 2019 01:48
  • JJ
  • JJ
I can't imagine why not. What are you thinking the harm might be?
01 Oct 2019 05:58
  • mrsb04
  • mrsb04
1. Try not to panic or get stressed. Most people live perfectly normal lives with a low platelet count.

2. Get a different haematologist. This has to be a 2 way process. Read up as much as you can but make sure there are medical references to support what you are reading. Try accessing this www.ebmt.org/ebmt/documents/itp-guide-en . It is written by ITP nurses for nurses who know nothing about ITP (me 5 years ago). It's quite an easy read and not too technical. It is 8 years old but should answer a lot of your questions. If you can't access it message me and I'll send you a pdf copy. You need to make informed choices. Question everything. Haemo must have an evidence base to work from.

3. Keep your spleen. Splenectomy is rare these days and not recommended as an option this early. There are many medical treatments that you could try before sucummbing to anything so drastic as surgery. Promacta suits me.

4. Steroids are bad news. Yes they work but the long term side effects are horrendous. Make sure who ever is treating you sorts out a proper tapering schedule. Dangerous to come off them too fast. There is loads on this site about that.

5. Keep reading on here and posting your questions.
01 Oct 2019 11:58
  • Hal9000
  • Hal9000
Yes, stable at a lower number seems likely. Only risk that comes to mind would be trying no injection around Flu season time.
01 Oct 2019 12:16
  • Hal9000
  • Hal9000
gpT2, take a look through these. This is a search on this forum for the word 'neutropenia'. Just off hand I see 'Evans Syndrome' mentioned in one case. Don't know if it is similar or not.
pdsa.org/discussion-group/search.html?query=neutropenia&searchdate=all&order=inc&childforums=1&start=0&limit=50

As for injections. It can take awhile. Just because there is no immediate platelet response doesn't necessarily mean the immune system is not reacting. As you may already know, a dose is a integer number and ranges from '1' to '10'. The higher the dose the more likely a response. Do you know what dose they are up to?

You mention two concurrent common viruses. Is that like the Flu and something else, or ?
01 Oct 2019 12:20
  • Hal9000
  • Hal9000
My brother has kidney stones. I guess it depends on where it is as to whether one can be broken up with ultrasonics.
01 Oct 2019 18:40
  • gpT2
  • gpT2
Thanks for your response. I was incorrect about dosage. He is at the max dose. Has now had 3 injections at the maximum dosage. NPlates website boasts an effective response for most people at 1-3 doses. So far, he has not had that hoped for response. His bruising remains impressive.
I have heard a little about Evans but not much.
The viruses were common respiratory type viruses, not flu. Specific names escapes me.
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