TOPIC:

Following my major (stress related) crash down to a count of 8 in April last year numbers recovered slowly but surely over the next 6 months to 71.
Routine monthly FBC in November showed count had dropped to 32 which didn't surprise me as I was starting with a cold. The next week my count was down to 7 but a quick steroid boost took it to 193 in a week. A fortnight later it was down to 18. Both myself and haemo felt once I was over the cold my count would start climbing. It always has in the past so no change to medications, 9mg Pred a week, 50mg Eltrombopag daily, and retest in a month prior to today's clinic visit.

I still have the wretched cold and cannot shake it off. I started taking Vitamin C supplements at the weekend to see if they will do any good.

Just returned from clinic. Swabs from nose and mouth sent for virology screening. Platelet count is now 15 so Eltrombopag increased to 75mg. Haemo does not want to increase Pred. She's querying if 5.5 years of it is now having a detrimental effect on my immune system. Immunology screen booked for Friday along with repeat FBC.
Back to clinic in a fortnight. Grrr.

mrsb I'm sorry you are still having that darn cold - hope the vitamin C is helping and that maybe the swabs from nose/mouth will shed some light on why you can't shake it and what to do about it. How long till you get those results?

I started prednisone back in 1989 for ITP & got off of it in 1992 - I know someone who started the same year I did but for a different auto-immune disorder [PMR] and has not been able to get off of it [got rid of the PMR but got a side effect, temporal ateritis]. She has osteoarthritis and very thin skin on arms and legs thanks to the prednisone but hasn't been sicker than normal.

Let us know what the immunology screening was like and those results. I was sent to an immunologist because of my low IgG

Take care!

You don't like my theory that long term steroid use can lead to higher Promacta doses?
pdsa.org/discussion-group/5-newly-diagnosed-a-frequently-asked-questions/30480-symptoms-of-a-platelet-crash-seem-to-have-disappeared-whilst-taking-eltrombopag.html#68132

Hal
I was screened for CMV and EBV on initial diagnosis, both were negative. To my knowledge I have never had EBV although my son had horrendous glandular fever in his late teens and was living at home. I've suffered with cold sores all my life. It maybe that steroids have weakened my immune system and I have CMV. I will await test results and discuss with haemo at next visit.
Mel
I'll update you once I have results.

Count 69 today so back to 50mg Eltrombopag and retest on Friday. Immunology results not in yet.

Good numbers! That must feel better to get back to 50mg. Hope the counts stay up. Is your cold better? Sometimes viruses are hard to shake even for people who have never taken prednisone. Hope you are feeling better!
I have been steady with platelets 30K on Nplate weekly- but now today my counts are 14K? I feel cold, tired, achey, scratchy throat and have been under too much stress. So may be getting sick and thats causing low counts. I took a tiny bit of prednisone today 2.5mg, not probably enough to bring my numbers up but I'm thinking it might make me feel better if my adrenals are low from stress. I need more sleep! and deeper sleep.

Thank you poseymint. My cold has finally gone. I started taking a Vitamin C supplement 200mg twice a day a fortnight ago. I eat plenty anyway but thought I'd boost. Within about 4 days I started to feel better.

Glad to hear you are better mrsb - that was a good platelet count!

I take 500mg of Ester C daily - try to eat well but figure it isn't going to hurt to take the 500. If I feel I'm coming down with something I'll increase it to 500mg 2x a day.

Hope you hear something soon - but I do recall it took a while to get the test results from my immunologist.

poseymint I'd love to have more sleep & deep sleep - but I think that just won't happen again. I'm just shy of hypothyroid and still not sleeping, just exhausted. Trying not to mess with the Synthroid dose but we are headed that way.

Anne, right. EBV virus may not be a factor but, as I understand, CMV could have been there but not detectable on diagnosis.

Question. Do you know if those tests at diagnosis were IgG or IgM based tests? Isn't it IgM that is elevated only on first exposure or on major re-exposure? While IgG is the long lasting one? If those tests were IgM tests, then a negative EBV screen result would be expected.

Just to chime in on vitamin C. I take 500x3 mg per day. I've heard that it is an effective anti-viral but not universally so for the flu. Works for some strains but not others. Perhaps where I heard that from was full of it, I dunno.

Just back from clinic.
Didn't see my haemo today. After an hour of waiting it transpired she was stuck in a major traffic jam. Opted to see the new ST3 (I think this is the USA equivalent of a first year resident). Count is 70 on Eltrombopag 50mg/day. He suggested I dropped to 25mg/day. I declined having only dropped from 75mg/day four days prior to testing. The only reason I had a test so soon after dropping is it's a pre clinic visit requirement. I will retest on Friday.
Cortisol sample 'lost in the lab..please repeat' was not the result I was hoping for. Re retest on Friday.
Viral swabs completely negative.
IgA & IgG normal IgM level minimally elevated which is hardly surprising after the state I've been in. CD Markers all normal too.
I'm now convinced I was so worn out by the time I retired in mid October that my adrenals were struggling. I feel so much better, I'm sure the vitamin C has something to do with this. I'm stopping at 200mg twice daily, it seems to be working and I value my kidneys.
I added in 7.5mg Zinc a day at lunchtime too a couple of days ago.
Back to clinic in a month.

Your count was good mrsb - and great your IgA and IgG was normal!
How are you liking the zinc? I just don't like it at all.

Can't say I've noticed any difference to be honest Mel. If it helps ward off colds that will do me.

Know one should take it when they start to feel a cold coming on - I just don't like it though, I do like the Elderberry Syrup and use it instead if feel like a cold is coming on.

Mel
Yes I will boost both VitC and Zinc doses if I feel another cold coming on
I am convinced that pred has affected my adrenals, hopefully not permanently. In August I went from 1mg/2mg alternate days to 2mg on Mondays and Fridays and 1mg the other days and felt fine so dropped to 1mg/day in September but I just could't handle even that tiny drop in dose without having withdrawal symptoms so GP made me go back to to the 9mg/week.
I have no idea if it was adding in the VitaminC or the tiny pred dose dose increase but I started feeling more human within a few days. I added in zinc after spending ages reading up on adrenal insufficiency.
Last Monday I had a positive discussion with a forward thinking junior registrar (resident I think is US equivalent) who felt the supplements were a good idea and I should try taper again so I've gone down to 1mg/day again. Am having my cortisol levels rechecked in a couple of weeks.

Mrsb- Good you are feeling better. I take Vit C 1000mg when I have a virus and didn't know that it was hard on the kidneys. After what you wrote, I looked it up and its very interesting. Thank you for that! Along with ITP, I have Sjogrens syndrome which like Lupus, is an auto-immune disorder that can attack the kidneys, so I'm always kind of watching out for my kidneys, watching creatinine levels on my blood tests. Anyway, I won't be taking high doses of Vit C anymore.

When I tapered after being on prednisone for over a year, I used 1mg tablets cut in half. Like you, that slow slow taper was when I got below 5mg pred daily. If I had to work long hours or didn't get enough sleep, I would feel the adrenal exhaustion-myalgia, joint pain, dog-tired, and I'd take a pinch more prednisone.
Good that you know more about dosing Eltrombopag than your ST3. That would be too fast a dose drop. As we know, it takes a few weeks to know what a TPO dose will do.

Mel- regarding hypothyroid: When I have been low thyroid, I sleep but don't feel refreshed. So kind of like never getting enough sleep. Also hair loss, weakness.

2 weeks ago I wrote "Count is 70 on Eltrombopag 50mg/day. He suggested I dropped to 25mg/day. I declined having only dropped from 75mg/day four days prior to testing"..
Message from consultant last week on Wednesday:-did I know my count the previous Friday (11 days on 50mg) had dropped to 31? No because I am completely asymptomatic and not contacted by anyone so assumed it was ok . Asked me to go back up to 75mg and retest on Friday. Totally against protocol to retest 36 hours after a dose increase but as I had some bruises I decided I would. Count came back at 20 which raises several questions
1) Has dropping pred by 2mg/week had any effect? I very much doubt it and am not increasing it. I feel fine on 1mg/day.
2) Am I doing something wrong dietary wise? Not to my knowledge.
3) Am I losing my response to Eltrombopag? I hope not.
4) Is the zinc supplement to blame? I don't know, has anyone out there any thoughts? I was taking 7.5mg a day at approx 11am as I take eltrombopag at approx 11pm. I am going to stop taking it.
I am seeing my consultant 2 weeks today so will have to have a blood test a week on Friday. I have told her I am stopping zinc forthwith and not having a count taken this week.

Just my guess from experience because my counts have crashed down to 3K when I've lowered Nplate, then they've bounced back after 2 weeks on the lowered dose.
The way I read it: your count was 69/70 on 75mg then you dropped to 50mg. Your count stayed for a few days at 70K so your body was still responding to the 75mg. The counts of 31 and 20 were possibly a reaction to lowering the dose to 50mg- it sometimes takes a couple weeks to see the full effect of a dose change. I think your counts will slowly go back up. I agree with you to keep the prednisone dose consistent so you won't have two variables.

So you went back up to 75mg- you'll see soon if you are losing response or if its just a reaction to lowering the dose. But it might take a couple weeks to see the full effect of the dose increase, and sometimes with Promacta counts will creep up very slowly. My guess is that you are not losing response. I hope not. My response to Nplate has changed over the years so we've had to adjust the dose, that can happen. Good you quit taking zinc to eliminate any possible interference. Wonder if you might need more Promacta during the winter cold/flu season? take care