Relapse

Looking for answers. 9 yrs ago I was diagnosed with ITP. I had 1 treatment of HDD and have been in remission until a few months ago. I did 2 rounds do HDD, with response after the first treatment. Things were going well until I was placed on Ibuprofen for an injury. After 2 weeks, the plts dropped. Doing a round of HDD now. The side effects are brutal. What have others experienced with HDD? Is it normal for 2 wks of Ibuprofen cause a sudden drop? ITP wrecked havoc on my life 9 yrs ago and I'd like to get my life back again.

Hi Gail,

Ibuprofen can cause drug-induced thrombocytopenia (DITP) in a small number of people, and the effect can be short-lived or long lasting. One question I have not heard answered is whether other NSAIDS can be safely substituted for someone who reacts to ibuprofen.

There is an extremely wide range of reactions to high-dose dexamethasone, from minimal side effects to psychosis, and many here would report "brutal" as pretty accurate for them. Some say that prednisone is easier to tolerate, while for others the opposite is the case.

How low did your platelets go? Are you considering doing just one round of HDD this time?

I hope you recover quickly from the side effects.

Thanks for the response Rob. I really don't know what the plan is. For 9 yrs, I've had puts over 150k. In December I had excessive bruising, that's all and my pmts were 28. I did a round of HDD and they responded. My dr wanted me to do this for 4 months. We agreed on 2. In Feb my plts were 184 and I hurt my back. I took ibuprofen 400mg 3xd for a week and gradually weaned back to 200mg/d. The pain was severe, so I didn't have much choice, but then I started bleeding and my plts were 41. So I did another HDD to bring them up and stop the bleeding. I realize 41 is not that low but with the ibuprofen I needed the bleeding to stop and it did. I'm getting my plts checked tomorrow. Then I don't know what, other then I will not take any Ibuprofen again. Taking the Dex, the side effects seem to be more severe after each course. I have the extreme fatigue, muscle/joint pains, the painful skin acne, severe heartburn (despite taking something), nausea and hunger, terrible mood swings and depression. I loose time from work bc I can't get out of bed, I'm so weak.

I am interested in talking more with my Dr about h.pylori. Any thoughts on that? When pregnant I hade severe Hyperemesis, which studies are just beginning to suggest there could be a link with h.pylori.

It doesn't hurt to get tested for H Pylori, but studies have shown that treating it rarely does much for ITP. If you have it, it should be treated anyway.

ITP wreaks havoc for everyone, so you are not alone. Eventually, most can get it under control but it can take time. If HDD doesn't do it for you this time, you could look into other options..

The Ibuprofen may well have had nothing to do with the platelet drop. Far more likely that the count fell after the dex wore off. That's the way it usually works.

The side effects sound pretty normal! I tried dex once and won't use it again.

Ann wrote: The Ibuprofen may well have had nothing to do with the platelet drop. Far more likely that the count fell after the dex wore off. That's the way it usually works.

Agree.

I agree with Ann and Sandi. For clarity, let me add that ibuprofen affects platelets two ways. The unlikely way is to lower one's platelet count. However, it is generally true that ibuprofen makes your platelets less sticky, causing bruising at counts that would otherwise not be a problem. Here is a study that shows that the effect of ibuprofen on platelet clotting is less than 24 hours, with a median time of less than 40 minutes.
annals.org/article.aspx?articleid=718327

Unlike other NSAIDs, aspirin affects platelet function for the life of the platelet.

Thanks guys. I find it hard to believe the ibuprofen is the sole cause, but my last Dex was Jan 1 (with counts in the 200's) and the end of Feb it was 184. A few days after that reading I started the ibuprofen and a week later the counts were 41. I see the Dr again in April before I do the next round of HDD. I'm just I terested in the h.pylori, bc I find it ineresting that it could be linked to 2 separate rare diseases that I have.

Has anyone made any diet changes that have been helpful? Honestly, my diet Is not the healthiest, so even if it doesn't help in one way, I'm sure I could benefit in others!!

Many people drop like that after a Dex pulse. Some drop even faster. I hope you have better luck this time.

I have been told never to take any NSAIDs .My itp started when I was taking Diclofenac and Gabapentin for a slipped disc. Stopping these did not improve my condition which is now chronic.The link has not been proven but my count did dip when I took a little ibuprofen once some time later.
Currently I am very low, at 10, for no apparent reason, after being at 30-50 for some time.
Here in Scotland with a very low count I am seen in my hospital clinic almost weekly and am prescribed a high dose of eltrombopag.

PS. What is HDD?

HDD = High dose Dexamentasone

I always read it as Hard Disk Drive.. and then have to stop and think.

:laugh: LOL Ann!

Well it's been over a year since my last episode of low platelets, they have remained in the normal range since my last HDD in March 2015. I have not taken any NSAIDs since then despite my contuinued back pain. I had Surgery May 2015 for my back, no prob with plts, I just recently underwent a larger back surgery and plts have been fine (although I believe I was give IV Dex during surgery. I vaguely remember the anesthesiologist saying something about maybe giving some for good measure) Currently my plts are great 3 weeks out. And I will continue to avoid all NSAIDs. I also changed my diet slightly. After some research I found where eating spinach regularly could help, so I try to eat it as often as I can. Either in a smoothie, salad or in with my meals.

Hello, I am really glad to have come across this website. I was diagnosed with ITP at age 17 after a few years of declining platelet counts. I was treated with prednisone for several months and didn't think about it again for many years. Over the past few years, I've had reasons to occasionally monitor platelets (through pregnancy, leading up to a surgery this year). They've typically been 70-110. Suddenly in July of this year (I'm 41 years old now), I started getting terrible bruises, so I went for a test and platelets were at 33. I went on prednisone (I have an emergency supply) and then saw the hematologist a few days later and platelets were up to 241 (definitely the highest I've ever known them to be). I went off after 5 days of prednisone and platelets were at 73 on Aug 20 and now down to 36 as of today. So they are really going back down. I feel terrified. Why would this come back after almost 20 years? The doctor really doesn't seem concerned, but I feel so worried. I have a beautiful 3 year old daughter and I all I keep thinking is that she needs me and I have to be ok so I can be here to take care of her (I'm trying not to be overly dramatic or morbid, I'm just very scared)... has anyone else had a relapse after many years?

Hi Kelly, my relapse was after 10 yrs. and during those 10 yrs I had surgery and took a lot of ibuprofen without any problems. My relapse seemed to be out of the blue, I was healthy and exercising almost daily by jogging. I hadn't been sick or overly stressed at work. I wasn't taking any medications (prescribed or otc). I know this is scary, but it is manageable. Talk with your Dr about other treatment options. High Dose Dex works for me, even though I hate it. There's IV treatments and injections. Research your options. I've also changed my diet some, eating more of certain foods and cutting some all together. Not sure how much diet plays into this, but I figured it could only help, not hurt. Stay positive!!

Hi Kelly,

It is really hard not to be scared by ITP, but the more you know the less scared you become. Platelet counts in the 30s are really not that low. Many hematologists don't treat over 30, and many patients choose not to treat until much lower. My wife has gone below 20 without treating, only to have them return to the 50s and 60s where they mostly stay. Actually, I don't know what they are any more because she only checks them if she has heavy bruising.

We have seen many relapses here. Often they disappear as mysteriously as they appeared. If this one doesn't, you will be fine, and you won't be alone.

Edit: Let me add I was glad to read your Dr. is not overly concerned. Often doctors tend to overreact and over-treat.

Thank you so much Rob and Gail! It is really comforting to know I'm not alone. I've never known anyone else with ITP!

Yes, when I saw the hematologist in July he mentioned that he doesn't treat unless they go below 20. So I will go for weekly tests for the next while and see where they land. It's funny - at age 17 I really had no fear around any of this. I remember my parents being worried. Now that I'm older (and I have a little one), my reaction has been completely different!

Again - thank you so much for replying to me. I will sleep better tonight