Annoyed about ITP diagnosis!

Hello everyone! I'm so glad there are websites like this which provide information and allow people of the same "group" to talk about things together!

I'm a "newly diagnosed" 26-year old female ITP patient. I put newly diagnosed in quotation marks because we have not done a bone marrow biopsy, and to me that would be the gold standard, but I'm glad that we haven't needed to go down that road yet. The thought of a bone marrow biopsy really gives me the chills!

Before I went to a hematologist for the first time I really didn't know too much about ITP. In nursing school (I'm a registered nurse), we didn't even cover this disease! I went to a primary care physician for my annual check-up, and my blood results came back with low platelets. At that time they were 122- low, but not really that low. Re-checked again and the platelets came back at 117. So, off to the hematologist I went. They've continued to get lower- 94, 84, and most recently 72. I have to go back next week and have it checked again. All of my other blood work is normal (he took like 6 vials the first time and ran a bunch of tests on them), my spleen isn't enlarged, and my blood smear was normal except for larger than normal platelets, which my hematologist said was something seen in ITP.

The next step is Prednisone if the platelets continue to drop. Has anyone been on long-term Prednisone for ITP? This doesn't really thrill me because of all of the nasty side effects of Prednisone over the long-term. I'm also not supposed to take Advil or Excedrin anymore for menstrual relief, which doesn't make me too excited because Tylenol really does nothing (for me) for pain.

I guess I'm just annoyed because no one seems to know what causes ITP. It's just some mystery as to why your body just chooses to attack your platelets.

Hi Melanie,

An ITP diagnosis can be overwhelming but I think that it's good you are staying on top of your health and going to see the appropriate doctors. I'm a 25 year old female - I was diagnosed back in March with a count of 4,000. I went through the same emotion of being frustrated with the unknowns of ITP. I will tell you it took me a decent amount of time to accept that I will probably never know why it happened. I was on Prednisone for two and half months and did five days of IVIG. The combo of the two got my count back to normal and I have held a count over 150k since April. I also have heavy menstrual cycles now; my GYN just had me adjust taking my birth control to continuously so now I only get my period 4 times a year.

You are fortunate that you have a medical background and probably have an easier time understanding the medical terminology! It is also great that you found the PDSA. This is a wonderful forum to discuss questions and share updates. Keep us updated on your progress!

Amy

Hi Melanie, welcome to the "family". You don't need a bone marrow biopsy to be diagnosed with ITP. I've never had one, and I've had ITP since 2004. I did ask my hema about it early on, but he said it wasn't necessary.

Hello Melaine - welcome. I'm glad you found us.

About the bone marrow biopsy, it's really only recommended for those over 60 or for those considering a splenectomy. Other than that, it's not necessary for an ITP diagnosis according to protocol. Some doctors do recommend it though. I had one and it's really not that bad. 20 minutes in the doctor's office and I left with a band-aid. Nothing to be afraid of, although the fear of it was worse than the procedure for me.

Most of us have been on Prednisone long term. It's not fun at all, I won't lie about that, but you do get through it. Hopefully, your counts won't keep going down. If so, we're here to talk you through it! Some of have been here for years (me, since 1998) so we have a lot of experience between us.

Thank you guys for the responses! It really means a lot!

I think I'm worried right now about being on Prednisone for a longer period of time. The only steroid I've ever been on has been those Medrol Dose Packs where you take tablets which you taper for 6 days and then stop. I'm also one of those people who is extremely sensitive when it comes to medications- I tend to get every side effect under the sun.

How has the Prednisone therapy been for you guys? A lot of side effects? What happens when you go off the Prednisone?

Also, do you know if fatigue is a symptom of ITP?

Hi Melanie,
Some of us have a lot of fatigue with ITP and some of us don't. I had a lot of fatigue when my counts were low. In fact, now that I've been in remission for a couple of years I feel like for the first time in a really long time I have a normal amount of energy.

I was on prednisone for two years, average of about 30 mg dose. At one point I took a trip with my parents and I told them 'you should know, I'm taking a medication the side effects of which are rage and hunger'.
Erica

Prednisone is never fun but it's always the first line because a) it's cheap and b) it sometimes works to trigger remission. It's never fun and like any medication the side effects can be interesting to deal with especially while your Dr plays with the does to find out what works best. Most of us try to stay off of it for long term as we get fed up with the side effects pretty quickly (took 2 months for me to finally go to my Dr and yell STOP!) Usually the taper has it's own side effects, and they will be worse the longer you have been on prednisone. There is an entire book about long term prednisone therepy if you decide that is what's best for you. Amazon link: www.amazon.com/Coping-Prednisone-Other-Cortisone-Related-Medicines/dp/0312195702

ITP and Fatigue have been linked, infact at last years PDSA conference there was a breakout session titles "Why am I so tired all the time?" or something similar that talked about how the two are just now being linked (this is a symptom patients have been complaining about for years, with most Dr's claiming no link).

The best thing is you found this place. I truely don't know what I would do without PDSA.

My experience with prednisone wasn't bad, but the largest dose I ever took was only 20 mgs. Many, if not most, MDs start you out at 60 or more. Mine knew I'd never comply with taking that much, so he was extremely conservative. Turns out, that 20 mgs raised my count from 4 to 121 within days. Tried dropping to 10 mgs at that point, but the count crashed hard. Restoration of the 20 mgs and tapering excruciatingly slowly over the next 8 months kept the count in the 60-90 range. I couldn't even tell I was taking the prednisone at that low dose. I kept expecting it to do something bad, but it didn't.

So my advice would be: First... Don't feel a need to treat at all if you stay above 30. (I was routinely running in the 20s and still didn't treat, although Dr. Hema wanted to treat <30. When it fell to 4, he wouldn't allow me to refuse.)
Second, don't just accept high-dose pred without questioning whether you might try a much lower dose first. It just might work for you as well as it did for me.

I did have a bone marrow biopsy, but probably mostly because I was age 58 at diagnosis... Close to that risky "gotta biopsy" age. The wise folks here will tell you it isn't always necessary at your age.

Good luck with it all.

Melanie:

I thought the experience was horrible. I was started at 60 mg's. The worst thing on the high doses was feeling like I was going to snap like a rubber band. Add that to the fact that I was working a full time stressful job and had three kids at home who were in a zillion after school activities...I never stopped. I shook constantly and didn't have a coherent thought in my head. The taper was even worse - it caused fatigue and aches that were hard to function with. That was about 10 to 12 years ago.

I have been on Prednisone though for the past five years at varying doses non-stop, and I actually do okay. I normally take between 10 and 30 mg's a day and I couldn't function without it....tried that. I take it now for Lupus though, not ITP.

Thank you for the replies everyone! I really appreciate it! I go back in on Monday for another blood platelet count, so maybe instead of the count dropping, it's now going to start heading up and surprise me!

Hello Melanie Glad you found us. It's disappointing that your numbers are going down, but it's good they are still in a safe range. I took prednisone. 100mg a day! It did nothing for me. The side effects from the taper were the worst for me. Not going there again! I also had a BMB. It was worse for my husband to watch then for me to have! I only had mine to rule out other problems because of low platelets. I think being in the medical field would be an advantage. Do you find that the case?

Hi Melanie,

I've been on prednisone for most of the past 10 years. I'm one of the lucky ones--so far (fingers crossed), I've not had unpleasant side effects other than some trouble sleeping when I've been on higher doses. (Taking it all in the morning helps that somewhat.) I know that for many it causes Cushing's Syndrome, irritability, weight problems, depression, bone and joint damage, cataracts--there's a long list. I've spent a lot of time on about 10 mg/day--but past month I've needed 20 mg to keep my platelets in the 20s.

Since you have a medical background, you're probably going to be more able to judge your doctor. I have found it very important to have what I call a non-alarmist hematologist, one who doesn't feel the need for very high doses of pred if I don't have troubling symptoms (lots of bleeding, bruising, etc.). He has never considered hospitalizing me or giving me IVG when my platelets have really tumbled. He is calm--and, I think, as a result, I'm pretty calm.

We all hope that you'll be able to maintain what look to most of us like very safe counts--and even see a rise to make you feel more confident. But even most of us who don't have very safe counts cope pretty well.

Being in the medical field, and knowing the medical lingo is sometimes nice, but it really makes you paranoid! In nursing school, while we were studying different diseases, all of us in the classroom thought we had every disease we studied. It turned us all into hypochondriacs! :woohoo:

So, when I found out my platelets were low, I immediately thought the worst. Leukemia, lymphoma, another bone marrow cancer. ITP was a disease we mainly studied in terms of children, not adults, so I didn't even think about ITP at first.

The worst thing about any autoimmune disease is knowing that your body is attacking itself for no known reason. I've always had horrible allergies and allergic reactions to things, chronic sinus infections, then asthma developed within the last 5 years, so maybe it developed in part to the allergies/asthma. Who knows.

It's just annoying (the ITP thing) because it's not black and white like a lot of diagnoses. Not as much is known about ITP.

And, this Prednisone therapy does not sound very good! My poor husband if I need to go on it! :blink:

Ha - my husband suffered too. I remember one evening we were going grocery shopping. I insisted! On the way there, I started to cry for some stupid reason...steroid moods. He told me we shouldn't go if I wasn't up to it and turned the car around. I cried harder, because in my Pred head, shopping had to be done! I told him to turn around. He did and I still didn't stop crying. The poor man turned that car around 5 or 6 times not knowing what to do. We did end up going and I pulled myself together in the parking lot.

Another time I made a complete fool of myself in 7-11. That's another story.

I'll tell you what - my first time on Prednisone was a total nightmare because I took everything too seriously. After that, I learned to laugh at my odd behavior and everyone else laughed with me. I have the funniest stories and although it is not a good experience, you can make the best of it.

Melanie37 wrote:

So, when I found out my platelets were low, I immediately thought the worst. Leukemia, lymphoma, another bone marrow cancer. ITP was a disease we mainly studied in terms of children, not adults, so I didn't even think about ITP at first.

Hi Melanie,

I'm new here too.
Can understand how you feel. When I was told I have low platelet, all wild thoughts filled my mind & I frozed at the doctor's office for quite awhile. One of the reason for this is my mother suffered & died from leukemia. I am still far from being calm.

I trying to learn as much as possible about ITP from this forum.

Wish you the best.

Lindy

@Sandi, you've got great support from hubby!
My husband is even more nervous type than me! That's not helpful. :ohmy:

Oh, my husband is the nervous type too...he just wanted to get the heck out of that car! Whatever it took....

Hi,
I am also in the medical field. Sometimes it's good but I have also noticed that some questions I ask are met with annoyance, mostly because the docs don't know the answers. I am wondering if anyone is researching causes of ITP.

How long were you both on Prednisone? I am on 40mg now and have been for about 4 weeks. I want to drop but my platelets have been decreasing. Then again, they decreased and went back up when I was on 60 mg and 100 mg so. I was just wondering how long others have been on prednisone.

Hi,

I have been recently diagnosed as well. I finished a 4 day Decadron pulse after two months of waiting for my platelets to either come up or fall low enough for treatment. At 36,000 is when i was treated. I hated the steroids, I actually lost 5 lbs when I was on them as nothing tasted "right", not even water. The rage was fantastic, they just stink. Coming off of them took me another 5 days before I felt back to myself. The good news is that my count went up to 187,000! I have another apt next week and am really hoping it sticks.

I am annoyed as well. For many of the same reasons you are. It is frustrating for me to have to accept something without a cause. I want to know why and for me there is no why. It just is. I do have a hypothyroid which is autoimmune as well as antiphospholipid antibodies and anticardiolipin antibodies. My body apparently enjoys making antibodies againt itself. And I have experienced more fatigue as of this diagnosis. More so than just from my thyroid condition. I am new to this thing as well, but am happy to help you in any way I can. Isay do the steroids first, they are worth a shot. Some people here have had long remissions with them.

Best,
Carla

First of all, Carla what great news! Congrats on the high count! Now, Melanie! I'm glad that you found this site/sad that you had to find this site! Like you, I am young (24) and have been at this crap for 2 years now. I noticed, that you have a pretty good count, though (in terms of ITP!) and that if you keep numbers like that, consider yourself lucky! Many people on here have very low counts, some even between 0-10. I know exactly how you felt upon diagnosis. I FREAKED, convinced myself I was dying. I even had a bone marrow biopsy done (everything was fine) and I STILL didn't believe my hematologist! I have since, chilled out (a little bit) and looked into my options. I treated with prednisone as a first line treatment (or booster). My counts went from 17 to 185, but as soon as the taper started, so did the platelets. Back down to 32. So, we decided to look at other options. I know it isn't fun, but sometimes, "ya gotta do what ya gotta do." About 2 years ago I had my first round of Rituxan infusions. I have been ITP free ever since. My last count was yesterday and it was a whopping 272. So, my advice for you is
a.) don't freak out like I did.
b.) come on here for advice/2nd opinions- you will find these people are like your other family
c.) look on the bright side- it could be worse (but isn't!)
d.) you have options when/if that time comes (which it may never get to that point)

Also, I find it so uncanny that SO many on here are around our age/female. It's an odd coincidence. If you ever need to talk, just send me a message!
Good luck!

Thank you everyone for the nice, kind, supportive messages on here! It's nice to know that there are other people in the world who are dealing with the same medical issues (ITP) as you! Especially all of the females in my age range. What a strange disease ITP is. No one seems to know what it is, and not a lot of research has been done on it. Kind of sad, actually.

I went to the hematologist this past Monday, and my platelet counts were up to 88! Yay! I don't really know what caused the increase (I didn't change anything in my diet, vitamin supplements, etc), but I'm happy for it. I thought for sure it was going to keep going down. I go back a few days after Christmas for another blood check. We'll see what happens then.

It's weird to know you have no control over your platelets. Red blood cells low? Take an iron supplement. Low folate and B12? Take a supplement. You know?

:huh:

I hear you girlie. It sucks and then all of a sudden BAM! This crap starts and you're like, "wait...there's no instant fix for this? No vitamin, supplement or pill to fix it?" It just doesn't seem like that would be the case in this day and age. But...88! Wow! That's a good number! I'm glad your counts are being stable! You may just need routine checks and not have to deal further with it all! I hope that is the case! In the meantime, relax and enjoy your holidays! My hema always tells me that a sunny disposition will help anything...even raise platelets!!!! She is probably pulling my chain, but she always tells me that stress only perpetuates the problem and makes your platelets drop (ha!). So...DON'T STRESS and take it easy! Have a fantastic holiday!

Natalie