Relapse

Hello,

I am not new to this useful site... just haven't been here for a while. I was in remission for 3 yrs after successful treatment with N-plate.

I was diagnosed in 2007 with a count of 7. Unresponsive to all the usual treatments: steroids, IViG, Winroh. "Lived" a few exhausting years with counts under 20 and sporadic treatments. No major incidents except nasty bruising and debilitating fatigue.

Then N-plate came along and changed my life! My counts steadily climbed to 100+. I administered weekly injections at home, which was a pain, but so worth it. No side effects except the periodic "optical" migraine. I took up running and enjoy half-marathon and marathon training. (High-intensity training is the best way for me to beat the fatigue.) After 10+ months of low doses of N-plate (sorry, I don't remember the exact dose offhand) I tapered off, maintained levels in a the mid 200's and left ITP behind!!

Fast-forward 3 yrs. I hadn't been feeling quite right the past few weeks. I live in Canada and the winters can be pretty awful. After a yoga session last Sunday, I noticed petechia on my eyelids and under my eyes....small bruises started appearing on my legs. I went for a blood test on Thursday and count was 46:( It also showed I had high eosinophils (0.6) which I had never heard of and really scared me after a google search.

I am gutted to say the least. Haven't spoken to my hemo yet, so not sure what this all means other than a return to constant blood tests and exhausting medical appointments.

I have been obsessing about possible triggers (lack of sun, taking saw palmetto, melatonin, eating salad with blue cheese, weight training??)

I feel somewhat safer at 46 (assuming I stay in that range) than I did under 20. I guess my question for all of you (experts really;) is wether I can continue running and doing yoga? (Please say yes) Also, I am a bit out of the loop, so I don't know what the threshold for N-plate treatment is nowadays...

I should know better than this, but is it too hopeful to think I may just bounce back without treatment??

Apologies for the long post. Thanks for your precious time and support!!

Hi! I'm sorry to hear about your relapse. The thing is, you know that you can do this! You know what works and other than being a pain in the butt, it is do-able.
I would think that Yoga is okay as long as it is light stretching. As for weight training, you might want to limit that to counts over 50k.

Thank you, Sandi. We are fortunate to have access to your sound counsel on this forum. (I remember you, Audi and Tamar from 2007. You were great help while confrontring what seemed like a very mysterious and scary diagnosis at the time)

Did you know that Audi passed away? Tamar is still around from time to time.

Yes, I was sorry to learn that. The scholarship is a lovely way to honour her. Wise soul! I hope you all know what a positive impact you have, especially on those newly diagnosed.

Caro, four years ago, what made you choose NPlate over Promacta?

Hello Caro,

I cannot tell you what you need to do but I do weight training for 30 minutes and 30 minutes of running\cardio no matter what my platlet count is.
My platlets after nplate can go to 280k and drop to 15k by the end of 3rd week.

My theory is since thrombocytosis (too much platlets ) is caused by exercise, so I believe exercise helps with Interleukin 6 secretion which in turn helps thrombopoetin.
But in practice nplate helps me more than exercise.

Interesting. Besides exercise, can just leaving the light on at night help one's count too?

www.ncbi.nlm.nih.gov/pubmed/25573725

Fours years ago, these were pretty novel therapies. N-plate was the option offered by hemo. I think it was more accessible with their patient assistance program.

Also, I remember being alarmed by some of the potential side effects of Promacta, which differed from N-plate...malignancies and liver problems in particular. in fairness, the list of potential side effects of many drugs, even the most common, can be a scary read.

I had a great experience with N-plate. I don't miss storing and preparing it though...major pain. Promacta would be tempting for the convenience.

Hmm, I'll have to read about Interleukin 6. I credit running with sustaining the remission achieved through N-plate. I don't have the science to back the claim. At the very least, it alleviated sleep issues and lack of energy, which were my most troublesome symptoms. I feel them coming back now that I am low. Such an icky feeling:(

Will keep running for as long as I can!! Would go back on N-plate if I had to.

Caro, might want to look through this - towards the end. Sounds like one, or just a few, shots can put you back in remission.

"Feasibility of Romiplostim Discontinuation in Adult Thrombopoietin-Receptor Agonist Responsive Patients with Primary Immune Thrombocytopenia: An Observational Retrospective Report in Real Life Clinical Practice"
www.ncbi.nlm.nih.gov/pmc/articles/PMC4378205/

Thank you - that is quite encouraging! I will bring this up with my hemo when I meet with him.

I have some catching up to do on the ITP research front. The beauty about being in remission is that you can forget all about bloody platelets.

I was on Nplate for a couple of years before getting into a sort of remission. Was not treating for 4 years and relapsed just before Christmas with a count of 1. Went back on Nplate injections and after 7 weeks stopped because my count was over 100. Am waiting for it to go below 100 before doing another injection but after 4 weeks I'm still waiting. Count this week 124 so it looks like those few doses have put me back into my partial remission although I think my relapse was due to a virus and I may well have bounced back on my own but didn't wait to find out.

Caro9 wrote: Thank you - that is quite encouraging! I will bring this up with my hemo when I meet with him.

I have some catching up to do on the ITP research front. The beauty about being in remission is that you can forget all about bloody platelets.

That sounds awesome! I'm glad that you had a nice stretch of remission. I felt the same way a year or two ago when my old standards for treatment weren't working anymore and I had to start learning again. All of these new ITP drugs, fun!

Good luck getting back into remission again. I hope you can bump back up with a very short N-plate detour!

I had my hemo appointment today. Platelets are at 23. Will get the process rolling to start on eltrombopag. I had a great experience and response with N-plate, but want to try the pill form for convenience. Still fearful of side-effects...

Feeling really bone tired! Hemo said fatigue wasn't a symptom of itp. I dread to think what else could be causing it. This may be naive of me to think, but I wish I could see an immunologist or someone who has some insight into what is going awry with my immune system.

In my desperation, I've picked up some supplements for fatigue: N-acetyl-l-carnitine and alpha lipoid acid. May post on this separately on "alternative" treatment section to see if any one else has had luck with these.

Thanks for listening and providing such useful input!

Caro
Obviously your Haemo has never had ITP. Fatigue is the most irritating factor as far as I am concerned.
www.ncbi.nlm.nih.gov/pubmed/25823426

Abstract
Fatigue is an important aspect of health-related quality of life from the patient perspective and can have significant socio-economic consequences. It is a common feature of chronic illnesses and a significant number of both adults and children with immune thrombocytopenia (ITP) suffer from fatigue. Reliable, validated fatigue scales have been developed for use in ITP. These will facilitate future investigation of its pathogenesis and the effectiveness of intervention. Acute inflammation acts on neural and endocrine systems resulting in 'sickness behaviour', an adaptive response to infection and injury. Inflammation is also thought to cause fatigue in chronic disease and immune dysregulation in ITP appears to have a number of pro-inflammatory components. Clinicians should consider fatigue when assessing the burden of disease. Although effective ITP-directed therapy can improve fatigue, a number of fatigue-directed strategies may also need to be considered.

I have a pdf of the full article if you cannot manage to get one.
Anne

Hello Caro,
Just wanted to share my experience, in my case promacta just did not work for me.
There was a study posted here by me which shows nplate works for some and does not work for others.

Also I get a shot only when my counts go below 50, so was taking shots only every three weeks, this time I am already 5 weeks in and no shots. But will be going in tomorrow expect to have a shot because was suffering from viral fever\severe cold last 2 weeks.

Jay, I am torn between n-plate and Promacta. Had such a positive experience with the former... resulting in the all elusive remission. Dr. says I can switch if I don't respond.

Will look up the study you posted. I asked hemo if my response to N-plate shed any light on what is faulty with my immune system and he really didn't have anything to offer.

I like the idea of a longer timeframe between injections. I am just wondering, thinking out loud really, wether that is sufficient to boost our system into remission.

Anne, thanks for the article. It is the first thing I pulled up after I dragged myself home from hemo appointment.