TOPIC:

I have a very stressful job with a less than understanding boss. I work in an elementary school and when i was first diagnosed with ITP, I was coping with the death of a student (due to DIPG) it was a terrible event for the entire community. I started passing out that weekend and thought it was due to stress but it was really due to a low hemoglobin level (4 units). Since then, i have noticed that stressful times result in major lows. In December, my doctor determined that i needed another 4 rounds of rituxan. I am off work because of the risk of illness and noticed that even though we started fostering 4 kids and that caused a lot of stress, my platelets have been ckming up on their own. In fact, any time i am not working, my platelets rebound nicely even before rituxan. Am i crazy? Has anyone else experienced this?
Looking for insight...i am not one to just quit a job...i have worked here for 15 years but on the other hand, no job is worth my health.

I have not noticed that my ITP is triggered by stress, but absolutely possible. If thats what you are noticing then I would say, trust your instincts. Along with ITP, I have another auto-immune disorder, Sjogrens syndrome which is like Lupus. That disorder clearly is triggered by stress. When it flares up I get aches and pains, fatigued, prickly neuropathy- a whole list of complaints. And it flares up when I don't get enough sleep, too busy/too much pressure, not eating right, and too many demands on me. In 2017 I cut back on my work hours from 40-50hrs, down to 30 hours and have been overall much healthier. (tho platelets stayed the same). Good luck with whatever you decide!

It's probably just stress, nevertheless, let me try barking up the wrong tree. LOL, you steroid responders are a strange lot - so worth asking about since one never knows what will turn up.
How about diet? Would you say you eat better/healthier when not working? Taking supplements when not working?

That is a great question. Although I live close to my work so I typically come home for lunch and have what I would have if I were home. Although being off work does allow me to eat slower and put more time into dinner. Although, I tend to eat like a raccoon regardless, sometimes healthy sometimes not! I take all the same meds/supplements daily so that isn't it. I feel like I am in a completely different mindset when I am home. I am a small business owner and have stress from that daily but it is a different kind of stress...better if that makes sense. I just had my last round of Rituxan today and I dropped on Sunday. My dr. Informed me that if I drop again heis recommendation will be to have my spleen out. It just makes my head spin that this could be all related to my work and now I am pumping myself full of meds and altering my body to make a paycheck.

Ok, sounds like diet and supplements aren't it. Still, if you don't mind me asking, what supplements do you take?

Did Rituxan work its magic?

After my initial diagnosis and a weekend in the hospital with my count at 6000, my Hematologist started my on NPlate. My count rose as my dosage was increased from 1 to 2 to 3mcg. At 3mcg my count held above 200,000 for two weeks and my dosage was reduced to 2mcg and I again stayed above 200,000 for two weeks and went down to 1mcg. After a dip to 105,000 and then 113,000, I have been extremely lucky over the last 5 months with my counts ranging between 161,000 and 267,000. Three weeks ago I hit 205,000 followed by 267,000 two weeks ago and I thought I might end up with no injection last week but I dropped to 189,000 so I received a 1mcg injection. This week I dropped to 117,000 down 150,000 from two weeks ago and received a 1mcg injection. It made me thankful that i wasn't above 200,000 last week.
I have been wracking my brain today looking back at the last two weeks for something I did differently. I had a dentist appointment and received novocaine injections. I also switched to a flouride based toothpaste. Can't believe either of those caused the major drop. I have been under stress due to some family related issues and the dentist visit which I hate. My Hemotologist said stress is known to be an immune system trigger and since he believes my ITP is immune system based, the stress could be a factor. I am scheduled for another CBC Tuesday to see where I am headed. Hopefully, the recent trend will reverse itself.
Has anyone experienced platelet effect from dental work or stress in general?

Thanks for anything you can share.

I never liked Romiplostim, my count swung about all over the place.
Personally I am convinced that stress plays a part in affecting my counts but not dental work.

Two hematologists I went to recently said stress can trigger but not cause ITP. I got other health problems that were definitely from stress. The first time my blood platelets dropped really low was in a very stressful situation, but it's only 3 months ago, so it's too early to see a pattern, might be a coincidence (I think it's not).

Thanks for sharing your thoughts.
I really believe stress is a trigger for a number of issues including immune system/platelet count. That said, I think the drop in my count may be due to a stomach virus. In the lat 36 hours I developed pretty severe gastrointestinal issues along with headache/neckache and bit of virtago. Also, some joint pain in various areas. I am hoping I will get past it and my count will show improvement on Tuesday.

Carducci, outstanding counts on such a low dose.

Something you might be interested in. Might want to look through user 'tacmom' posts. Her daughter had ITP. As I recall, she went down to a 1 dose and stayed there for a year or two. One day, they decided to just not treat one week and see what would happen. Turned out she remained stable and they discontinued Nplate. I think counts hover around 100 or so. Might look through her posts for more info. Listed as: most recent first.

pdsa.org/discussion-group/search.html?searchuser=tacmom&exactname=1&searchdate=all&order=dec&childforums=1&limit=30&start=0

Thanks Hal. I am happy with the counts to say the least. My Hemotologist and I discussed getting off NPLate and then my counts dropped the next week so we backed off. I will probably take a shot at skipping a shot in the near future.
Thanks as always.

Carducci, I was looking through old posts. I notice I had you pegged as row 2 in my treatments table from the get-go, and that I've mentioned 'tacmom' to you twice, LOL. For those in your situation, I don't think you are alone when it comes to fear about skipping a weekly Nplate shot and crashing. The customer/patient is always right.

Hal
Counts went back up to 137,000 by Tuesday after the 117,000 previous Friday and 189,000 by following Friday then dropped to 151,000 a week later and 188,000 today. Roller coaster as always but numbers back in what has become my normal range. I guess the stomach virus and simultaneous stress were the cause for the drop? With the corona virus situation, my Hemotologist would not even consider trying me with no injection when i saw him earlier today and I agree. Maybe in a few months when things calm down,
Thanks as always

I'm brand new to this forum, and was just diagnosed the end of last year. I've been reading this thread to see if anyone else finds stress to be a factor. I find it is, and I have a hard time really relaxing and de-stressing. Has anyone tried meditation?
I also have a question, what is NPlate? I've never heard of this, but it seems to have had some great effects. My doctor has suggested a splenectomy or Rituximab.

My experience has been that stress is a factor. In my case, my Hemotologist feels my ITP is related to immune system issues in turn related to 40 plus years suffering from arthritis. Stress can definitely activate an arthritis flare up and when that happens my platelet count drops.
My wife believes in meditation and yoga to relieve stress.
My Hemotologist feels splenectomy is a last resort because it is reported to have a 60% success rate and comes with the reduced ability to fight infections. Rituximab is given intravenously with 4 treatments over 4 weeks each of which can take hours depending on your reaction to the drugs. There can be side effects. I had the four treatments and it had no positive effect on my platelet count. Everyone is different and it has put some people in remission.
N Plate is a weekly injection that helps your body manufacture platelets. N Plate has a web site that provides a lot of information about treatment protocols, side effects, etc.
I would encourage you to log in to the website PDSA.org. It is a support site for individuals with ITP and provides information and insights including the ability to enter chat rooms to talk to people who have extensive experience with ITP.
Good luck!

Hi Cheryl, I meditate, I also have hypnosis tracks I listen to regularly, went to Yoga classes (specifically Yoga Nidra), tried acupuncture and other things. I'm sure it has an effect on my health in general, but I didn't notice a difference in my platelet count in relation to how much of it I do. I stick to what my doctors prescribe for itp at least. NPlate worked for me, but I couldn't stand the side effects. Seems a lot of people are just fine on it though.

I definitely see a relationship between lows and stress. I had tried yoga and it helped me calm down a little but I am still trying to find a way to destress and it has been 3 years for me. I have had 2 treatments of Rituxan and had success with the first one but the second go has not given that result. I learned today that I am facing a spleenectomy.

My experience was that Rituxan is four treatments over four weeks and it take son average 5/6 weeks to show results. Not sure why you have only had two? My Hemotologist feels splenectomy is a last resort since it has a 60% success rate and reduces your ability to fight infections, etc. Have you exhausted other options like N Plate?

Can you change the thing that is stressing you? I'm crossing my fingers that you don't need splenectomy or that it works well for you at least. I read a few books about stress and health by Bruce Lipton, Gabor Mate, Bessel v.d. Kolk, Alice Miller etc.- if anybody is interested. But it's not directly related to itp.

And then there is the stress and Epstein Barr virus connection.
"Stress-related Epstein-Barr virus reactivation."
www.ncbi.nlm.nih.gov/pubmed/19779966

I wonder if this is what I have Hal, I have elevated EBNA1 IgG, VCA IgG and Early Antigen IgG. I thought that means it's reactivated or does it only mean I've had it before? That would make sense to me since I had all kinds of chronic symptoms shortly after some bad things happened 2015/16, when I realized I'm stuck with the consequences. It's also the first time my thrombo count was slightly low, but I didn't think anything of it, until last year when it got very low.

I meant 2 goes of 4 rounds...sorry!

Your IgG results show that you have definitely had the EBV virus at some time. The EA result says that you may have the infection now but not necessarily. For some it stays positive and means nothing. Did you get IgM VCA measured too? That would be useful.

Hi JJ, yes I did, it was below 10, so normal. I thought that was only elevated in a recent new infection. The hematologist doesn't see anything except ITP in relation to my thrombocytes being low. But I'm having rashes again that look and feel like burns, I feel like poisoned, it seems to me like it could have something to do with my thrombocytes, because it started at the same time.

Exactly so, so maybe not a reactivation, just your results showing that you had the disease in the past.

Oh now I understand it, I thought IgM is in a PRIMARY infection only, but that's not the case. It's in a new infection whether it's primary or reactivated. And the other results don't clearly say whether it's still active/ chronic or not active. Ok... I guess more doctor visits to find out what these other symptoms I have are.

JJ wrote:

Your IgG results show that you have definitely had the EBV virus at some time.

I was trying to find why you said this JJ - could you tell me please, thanks.

I had it, because I have high levels of EBV nuclear antigen and viral capsid antigen, right? And early antigens usually disappear a few months after the infection, so high levels might mean it's active, but in a minority of patients they stay, so it doesn't mean it's active for sure... that's what I understood now.

Impatient- have you gotten the burning rash checked out by a doctor/dermatologist? If you think it might be connected with the low platelets, I just wanted to mention that there are a number of auto-immune disorders that present as a rash. And other auto-immune disorders can go along with ITP.

I have been diagnosed with ITP for 10 years, and 3 years ago was diagnosed another auto-immune disorder, Sjogrens syndrome. Its similar to Lupus in that it affects mostly women and some symptoms overlap. In many cases they would target treatments for the Sjogrens/lupus and that brings the platelet count up. In my case it didn't work. I take a drug for Sjogrens and Nplate for ITP.

ImPatient
Atopic Dermatitis is associated with several auto immune conditions. I agree with Poseymint you need to get this checked out.