New to ITP needs to know whether I need to go ER

Hi, everyone.

I have been reading your postings last 3 to 4 weeks since i got diagnosed with ITP this August.

I noticed 6 to 7 big bruises on my leg in July and finally made a visit to my family doctor in August. And the blood test came back with 19,000 platelets counts. I was sent to the hematologist right away. My Hemo recommended steroids saying it is the first line of treatment. I did not like it so I asked alternative and he suggested IVIG. long story short, my insurance companies (I have two, one from my work and one from my husband) denied IVIG. So I wanted to give it a try with steroids so started taking prednisone 60 mg per day. Wow. I realized that I can not function. No sleep shaking heart palpitation, you name it. I think I experienced every possible side effects. I teach. And school just started but I was certain that I can not do my job with the steroids in me. I stopped taking it (without telling my doctor) and suffered few days of withdrawal but it was not as bad as being on steroids. Got a new blood test after few days of Prednisone and got 24,000 and stopped taking Prednisone and got 31,000 count. This 31,000 might have been from the residual steroids.

Two weeks passed without steroids and today I got 10,000. My Hemo is talking to the insurance company for IVIG and Nplate treatment (this decision was made by mostly me---you guys educated me too much). He is going to call me as soon as the insurance approves it. My guess is that approval or denial whichever, it may happen on Monday if it goes through the review quick. I was going to wait but I just noticed that there are 4 little red spots in my mouth (I do no know the names of these) that I did not notice this morning.

I did get only one new bruise in August and none after that and I thought I was heading to symptom free situation. I had only one big bruise that started 2 weeks ago this morning when I got the blood test done. I was surprised so this evening, I started checking my body for symptoms of ITP and found those spots in my mouth.

Do I need to go to ER now (with red spots in mouth and platelets probably less than 10,000 since the red spots are noticed after dinner) and ask for IVIG instead of waiting till Monday? I like to wait till Monday if it is not too dangerous not to do anything.

Any advice will be appreciated. Thanks.

Hello Forever 21

You should go to ER if you have active bleeding that you can not stop, if you have a REALLY bad headache, or if you have blood in your stool.

A lot of ER's have never dealt with ITP and may just give you steroids and send you home.

You could try this website. It is an ASk a Nurse phone number. Or maybe your insurance company has such a number: (I have never used this website so I can't vouch for it)

www.absolutetotalcare.com/for-members/health-services/nurse-on-call/

When in doubt check it out - a good quote to observe.

By the way, my count hit the gutter and I had not 1 symptom - also I have had ITP since 1989 and never had a blood blister in my mouth.

If you've got a count of 10 or under you can expect petechiae in the mouth. In fact I'm surprised that you aren't covered in petechiae, but everyone is different.

If you are uncomfortable with counts that low then you should get immediate treatment but nobody can help you with that. It's just what you are comfortable with.

By the way be careful with stopping high dose steroids suddenly as it can be dangerous, not because of ITP but because the adrenal glands need time to start making their own steroid again.

If you are new to ITP I would go to the ER. You need to know how your body handles low counts and what your personal signs are for a potential bleed. Most find their own personal comfort level. Mine is changing but it's due to dosage changes on the drugs I take..just making it a little harder for me to judge my own bleed risk right now.

Keep us posted.

The reality of living with ITP is that ER trips may be part of your world.

My advice would be if you are really worried or uncomfortable then go, however I more follow the guidelines ananta gives: severe headaches, bleeding that you cannot stop, pronounced bleeding in the urine or stool. I would also add that if you have head or abdominal trauma I would take it more seriously with low counts, that might warrant an ER trip for evaluation. I would be concerned that an ER might not have experience with the low counts and might not use the best treatment protocols.

I agree...ER's are not usually familiar with ITP and either totally panic and admit or just give steroids and send you home. If symptoms do not increase, you could probably wait until Monday. The numbers are not as important as the symptoms. Counts under 10 do not mean that you will bleed to death.

Thank you all for your valuable advice. I checked my mouth this morning and saw most of petechiae are gone. Just one spot visible. But noticed that there are many many pinpoint size petechiae on my right hand and wrist. I may have not noticed it yesterday. I am not sure if my symptoms are getting worse or better but I will keep my eyes open to the symptoms and stay ready to go ER without panicking.

I WILL KEEP YOU GUYS UPDATED. Thanks.

You sound like my situation. I have waited it out, sometimes the drugs are worse than just seeing dots.

Also, do not go to ER, waste of time and money. Rather, contact your hematologist instead.

This is just me... Take it for what it's worth.
I've never been to the ER for ITP and would only go if I had signs of serious bleeding... Severe worsening headache, stroke-like symptoms, severe abdominal pain, rectal or urinary bleeding, heavy nosebleed that won't stop, etc. It's a good place to go when you need to stop a hemorrhage, but no great shakes at treating ITP per se. I've luckily never had any dire bleeding; the majority of ITP patients never do, even though it can be our worst fear.

On the occasions when my count was in the single digits, my hema's nurse instructed me about the above symptoms and said to go immediately to the ER for any of them. Otherwise, it's not an emergent situation. The ER is a pretty expensive place to go just for a count. IMO.

For less ominous signs of bleeding - heavy petechiae, oozy nosebleed that will stop with pressure, blood blisters in the mouth - I call my hema and ask for a count.

Forever:

When my counts were down, I found that I was getting petechiae on my hand because I slept on it. Do you know if you do that? If so, that could cause it because you sort of cut off the circulation a bit.

Hi, Sandy. I agree with you about the petechiaes on my hand and wrist. And my mouth got clear of blood blisters by this evening. Good sign!

Hi, Midwest. Thanks for the clear guidelines. That helps a lot. I do not have any of those except the petechiae that might have been caused from my sleepin on it as Sandy suspects. By the way, I live in Missouri too. Do you have any good ITP specialist's names in St. Louis? Or in Columbia? Both places are in the same distance from where I live.

I would call your hemo's office before the ER. (unless you are having active bleeding/stroke as others have advised) Perhaps talk to a doctor on call if you are concerned.

I had to learn the hard way about going to the ER. I was new to ITP- went to ER with a count of 6,000. I sat in ER for 4 hours waiting for them to finally tell me I'm fine, no need to be here and sent me home with prednisone saying "call your doctor on Monday". That little visit cost me $2500. which took 2 years to pay off.

I am on Nplate now, it was hard to get approval but the billing office kept the pressure on the insurance co and they finally agreed. I always keep low doses of prednisone on hand- 1mg tabs and 2.5mg tablets. I cannot and will not tolerate high doses like 60mg, but if my counts are low, 5-7mg prednisone will bump the numbers up temporarily with only mild side effects.

As Ann said, its not safe to stop prednisone abruptly- it can have serious consequences. That said, great that you made it off pred and are moving on to other treatments!

I once went to the ER for something unrelated to ITP, but mentioned to the ER doctor that my count had been 6,000 a few days before. He did a CBC and came back into the room smiling. He said, "Your count is 44k and there is no way it was 6k a few days ago. You would never have been permitted to walk around like that without being admitted to the hospital". I told him that I had started Prednisone which brought my count up. He just shook his head and didn't believe me. Most ER docs don't have a clue.

I was born and raised in MO. Doesn't Washington U have a medical school and/or St.Louis University? If so I'd check with them.

Sorry I missed the question about good specialists.
There is an ITP specialist at Washington University's Siteman Center who I saw last year. It was a disappointing encounter for me, as I found him way too splenectomy happy; but maybe you'd have better luck.
I returned to my original hematologist who I would not consider to be that "good" at ITP. It's more a matter of him being flexible and non-dictatorial.

Dictatorial? LOL! I would not like him either if he is so arrogant. My current hemo may not have much experience with ITP but he is listening to my opinion and try to work with me. I will look for the one like my current one just with more experience in ITP. If I find one, I will share the information with you, Janet.

I did not go to ER over the weekend. There were no signs of worsening. Blood blisters in mouth were all gone completely and no new bruises. I will stop by the lab tomorrow morning and get the quick reading before work. Am I too optimistic if I think my counts are going up now? I now have peace knowing I am ok as long as there is no visible signs. Thank you every single of you for responding to my questions. And also thank you everyone who ever posted on this site, which really helped me in learning about ITP. I am still going through all the postings. All my computers, iPhone, iPad have this site open so I can see it whenever possible.

Sue

Update

Last Monday count: 15,000
Friday (today): 10,000 without any visible ITP symptoms (no petechia, no bruises, no blood blisters in mouth, none, nada....smile).

I feel like that I may not need any treatment at the moment. What do you guys think? Can I wait and see if my count bounces back without any treatment?

Insurance finally approved Nplate so the plan is to start injection next week.

That has to be your decision. However, I will say that there are people who choose not to treat and do okay. Be sure to continue to watch the symptoms as you are doing and if anything develops, get help.

Thanks, Sandi, for your advice. I am starting Nplate tomorrow. I am very happy to be able to start it alone (without any other medication) so I can tell the exact effect of Nplate. Thank you all for educating me to make educated decisions. I will update my progress once it starts showing up any effect (4 to 6 weeks from now, I guess).

Sue.

Good luck! I'm glad you were able to make a decision that you are comfortable with.

Thanks, Sandi. I am in the doctors office waiting for my shot. Got a new count at 14,000 today as a base count before Nplate. It will be interesting to see if Nplate alone can increase and maintain the count. Will keep you updated. Thanks.

It should. It's best if N-Plate is used alone and it usually is. It has a pretty good success rate but it can take some time to get stable.

I hope that NPlate works for you Sue.
It was a fantastic success for me so I am keen to follow your progress.
My suggestion is to keep a record of your platelet counts and your dosage amounts as it may help you and your doctor determine the next dose and when to have it as you may develop a pattern. It initially took 5 weeks of increasing doses (up to 8mcg/kg) before it had any effect and finally my count went above 3. I could then sometimes only have 1 dose a month as my count jumped up and then progressively fell back down again and I ended up being on it for only 5 months before my immune system reset itself and I went into remission.
The only side effect I experienced was a mild headache but it didn't warrant taking any pain killers and it is far, far better than the side effects of prednisone or dexamethasone.
Don't get too frustrated if you go on a roller coaster of results while they try and balance the amount of NPlate to administer and if your are react like me, be mindful that the full effect of a dose may happen 2 weeks after the injection as you really want to avoid overdosing on this drug.
I wish you all the best.

Thank you, Robert, for sharing your experience. I need to hear more of those good endings to stay positive.

I got the first blood work done today after 7 days of first Nplate shot. My platelet came out 37,000. Hooray!! I will get another Nplate shot on Friday. I am wondering if I need to stay at the current dose.

I have not seen the complete blood count of today's blood work yet but one thing that worries me is the MPV (median platelet volume). It was 12.9 last wednesday right before Nplate shot (which is in the higher range meaning that I have more mega size platelet--putting the cause of my low platelet count on the increased destruction of platelet rather than the reduced production of platelets). I asked my doctor what he thinks about the high MPV before the first Nplate and he seems to be ok with it. So I got the first shot.

I will be seeing a doctor this Friday to get the second shot and hear what he will do on the dose. I will keep posting my progress.

Thank you all. Sue

Thank you indeed Robert. I have just started on N Plate so found your comment very useful.

Sue:

Don't worry about the MPV. It's not a concern. Most people have both destruction and production problems and as long as a treatment works, you don't really have to worry about any of that.

As for the dose, I'd stay at the current dose unless your counts shoot up or are far below the 50k target. You're doing good after only one injection. Hang in there!

The MPV is not a concern. Just to warn you that what happened to me was that the count would go up but then crash again so a higher dose was needed, that would then send the count up only to crash again. This went on for a few weeks until suddenly the count went way high and I had to reduce the dose back down again. It all ended up in a remission after a couple of years. It all takes time so don't worry if things aren't resolved immediately.

Thanks, Sandi and Ann, for the comforting information.

I am still on 1 microgram/Kg dose. After the 2nd shot last Friday, my plate came out 40,000 today (I will be getting the blood test and the Nplate shot done on every Fridays). We decided to stay at the current dose few more weeks (until the counts drop) and I got the 3rd shot today.

While I was getting the shot, I asked the nurse whether they can store the unused Nplate solution for later. The nurse said no.

I am getting only 46 microgram (yes that I am petite) each time and the bottle comes in 250 microgram unit therefore 204 microgram is being wasted each week. I thought Nplate is sort of protein (or rather peptide?) and the peptide solution should be quite stable for several weeks in the refrigerator (according to my research experience) as long as it's been handled aseptically.

I have not looked up on the information yet. Anyone has any information on the shelf life of the Nplate in solution? Should I contact the company and ask?

Sue.

---

14,000
-->1 mcg/kg Nplate
37,000
--> 1 mcg/kg Nplate
40,000
--> 1 mcg/kg Nplate

You're doing well. The company will tell you that it's a once only thing and to discard any unused solution. They obviously don't want you to make any savings! I doubt also that the clinic would keep it either, as if anything did go wrong they'd be held liable as they didn't follow the manufacturer's instructions. In the self-injecting instructions for the UK, it goes on and on about not reusing the solution and to use immediately it's prepared.