2 weeks with itp

Hi all,
My husband is newly diagnosed ITP (2 weeks ago), and after reading almost everything on web, we found this site and especially forum as a most informative place . (+ it seems that great people writhing here )
So, my husband is 35, started few month s ago with bruises, and then 2 weeks ago after routine blood check his platelet level was 7. (no other symptoms)
Hospitalised for 4 days, and docs started with high dose of Prednisone (128mg).
After first dose his platelets went to 20, then day after to 43, then 143 and hi was released with 176 and on 64mg of Pred.
This Monday (one week after release form hospital) platelets were on 143. Doc continues to taper Pred – one day on 48 and then two days on 32.
And todays result little bit shocking for us – 80.
Doc already starting to talk about splenectomy as a next step, but ha also said we can think about Rituximab and that he will support if we decide to try it.(already from next week)
Next blood check is scheduled for the next week Tue., he will continue on 32 till than.
We are little bit shocked that only after two weeks we are in place talking about surgery and heavy treatments. On the other side, this hemo is expert in our country (we are in Europe) and it would be hard to find someone more experienced.
We would definitely like to try some alternative approaches (vitaminc, waiting one ayuewerda expert to come back in July to try that approach), but on the other side how to treat this significant drop in only 3 days with still quiet high dose of Pred?
We would be grateful for any advice and experience.
And also, does vitamin c treatment works while on Pred?
Thank you.

Galaxy:

Sorry about the diagnosis. The most important things to know are: 1) ITP is rarely fatal and 2), once you get past the shock and fear, you will find that you can still have a perfectly normal life.

Having a Hemo who is experienced with ITP is important. There are many treatment options and splenectomy is slowly falling out of those options as time goes on. I'm surprised it was suggested so soon, especially since you are in the UK where it is not performed nearly as often as it is in the US. It is up to you and your husband to educate yourselves so that you can be part of the decisions.

My advice would be to learn as much as you can. Here is a start.

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/8344-excellent-advice-for-newly-diagnosed.html

Vitamin C is not known to raise counts, but can help with symptoms of bruising and bleeding. You can take it with Prednisone. Counts fall often as the dose is tapered, sometimes it is tapered too fast which seems to be the case here. It can take time to find the treatment that will work to keep counts up. Hang in there, you have many options ahead of you. Counts do not have to be 'normal'; having a safe range of 30k+ is fine for most daily living.

It can be daunting at first, but knowledge and time tend to bring a different perspective. Look around at treatment options.
Yanking one's spleen was cutting edge ITP treatment in 1914, not so much 100 years later.

Keep in mind that many of us live just fine with low counts. My most recent was 11k (usually around 9k-16k).
As your husband learns his own symptom/count/treatment parameters, it gets easier to relax with it.
12 years and counting....my head has yet to explode.



.

Where are you Galaxy? I'm not sure you are in the UK. People in the UK don't tend to say that they are in Europe.

Don't let yourself get talked into a splenectomy this early on if at all. Plenty of things to try first.

There was an ITPer here [unfortunately it's been a long time since we all got together] and if I remember right his count stayed around 5,000-10,000 - he was leading a full life and he & his wife even adopted a daughter.

My family and I moved to Japan a couple months after my ITP diagnosis with my count not steady yet.

Galaxy I tried looking up ayeuwerda since I know nothing about it but that spelling did not come up - is this what you are talking about?
nccam.nih.gov/health/ayurveda/introduction.htm

Have you checked out the treatment section
pdsa.org/treatments.html

Hope all goes well for your husband - read up on everything you can!

Where did I come up with UK? I wouldn't have assumed that from the word 'Europe'. Hmmmm.

Galaxy, if I have read your post right your husband count went from 7 upto 176 by just taking prednisolone?

Also he went from 128mg of preds to 32mg in just 2 weeks because damn that is one hell of a taper, I thought my taper down was quick.

To be honest I would expect a big drop with such a step down.

I have to admit I would question your hemotologist if only after 2 weeks of being diagnosed and the only treatment he has tried is prednisolone to which he had responded well to, he is already talking about a splenectomy.

Crazy.

Have to admit Sandy I was wondering that came from lol.

Thought maybe I had missed something lol

Swore I saw UK!

LOL@Sandi!

Dear all,
Thank you for your replies and advices.
First to clear up location – it is not UK, it is one small country south Europe.
And to apologise about my English as well as misspelling (it is ayurveda ).
And one more correction – it is not Prednisone buth Medrol (latter on i've realised that in hurry i've wright Preds as a most common word connected to itp)
As I said, we already read lots ‘of about itp (and of course, we will continue with this self education)
We are aware that it can go up and down, that there several treatments to consider, that with time it can/ will be better.. We also set up target on 30.
And I would dare to say that (at least for now) we are dealing with this quiet well – we really don’t think it is death sentence , and are positive we will find the treatment that works for him (we agree to try first self-healing and natural approach after off from medrol, and to leave 2nd line treatments for latter on if needed).
My husband currently doesn't have any other problems, we have healthy life style and we are fully positive about outcome of this journey
But yesterday’s sentence from hemo („it is not god, medrol doesn't work although it is huge dose, i propose surgery…“) really shake us up..
Regarding corticosteroids, when they started the treatment, my husband was considered about the side effects and he asked hemo to go with fast tapering.
So in 2 weeks period he went from 128 (3days) to 64 (7 days), than to 48(one day) and then to 32.
But hemo newer said that this (too) fast tapering could lead to high/ huge drops in only few days. (thanks sandy and Ghost for mentioning this).
We would definitely ask for 2nd and 3dh opinion, and search for new hemo, although i'm not sure where to find one (only few experts in our country, and this one is stated as a best one..)
In a meantime would also appreciate if some of you „drugs experts“ have advice how to proceed with this dose of medrol? To continue with 32, or to go back 48 and go with slower tapering?
What would be optimal schedule for tapering in order to avoid total crash (<10)but also not to stay to long on drugs?
Thank you all, it was really helpful to find this place

And one more thing – after my husband refused splecetonomy, hemo poropsed to start with Rituximab from next week - we found this also to early and would like to see how Medrol will perform during at least few more weeks..what you think?

If you do not mind me asking which country are you from? I am Cypriot by origin but live in the UK.

From what I can find out Medrol (Methylprednisolone) is a form of Prednisone, it is a corticosteroid medication.

A fast taper down is never a good idea with any corticosteroid based medication. Compared to other people on this forum I am currently on a fast taper down but no where the levels of your husband.

A fast taper down can be a lot more harmful and dangerous then then the side effects of taking a corticosteroid based medication.

My personal feeling is, or how I would react if it was me, if the corticosteroid based meds are working, i.e counts are at a safe level and I was having no ITP related symptoms then I would not consider taking any other meds.

I would only start to consider other meds if after a slow taper down my count reduced.

So for example if your husband stays at 32mg for 7 days and his count stabilizes and is ata safe level, then you take a small reduction, to say 28mg and then give it another 7 days and see what the count is. Again if the count is at a safe level, take another small reduction and so on.

In time 2 things will happen, either your husband goes into remission and he comes of the meds and all is well or as the dose decreases his count will also decrease. This is why it is best to take things nice and slow.

I am the kind of person who really does not like being on meds and I am by nature impatient. However with my Hemo and with the help of people here on this forum I have learn't it is best to take thing nice and slow and to give both the meds and my body time to react.

Please tell your husband to take thing nice and slow in regards to tapering off. He needs to give both the meds and his body time to react.

By taking things slow and by having small reductions in his meds you greatly reduce the risk of having big drops in your count and by having the what can be quite dangerous side effects of a taper down.

As for other drugs, I have never used Rituximab. I have had Ivig in the past and I am currently on Promacta.

For now, if your husband count is at a safe level, and he is not showing any symptoms, or very very few, then yes, I would continue on the Medrol, taking things nice and slow, and see what happens.

Ghost , thank you so much, I really appreciated a lot..
If only our current hemo say it and explain it like this..
My husband intention was not to go out of meds no matter what, but as quick as possible as long as it is safe and reasonable (hemo created this shedule..)
Tmrw he will do another blood check and he will stay on current dose (at the end yesterday he took 48) at least for a week.
We have also scheduled a meeting with new hemo for next week– I really hope it will be more informed and experienced with ITP.
I will post about development..
And, we are in Croatia

It would be best to discuss a slower taper with the doctor. We can't tell you what to do in that regard. Luckily, time is on your side and there is no reason to rush into any decisions.

Hi..short update about development: todays count 120 (for the last few days on 48mg of Medrol.)
(current) Hemo proposed to go with 8mg/every 3dh day tapering – he said it is his best practice.
On the other side, we really think that Ghosts “nice and easy” advice make sense -it is logical that body needs time to adjust to the changes..Therefore we were thinking to go with 40 mg for next 7 days..
Or, does it make sense to do new count by the end of this week (after 3 days on 40 mgMedrol) and based on that decide which schedule to follow: hemos or our?
(I know you can’t give me official answer but really appreciate your thoughts and experience)
(This week will get 2nd opinion from another hemo. )
Btw, my husband is doing really fine – for now no (visible) side effects of Medrol.
Healthy food, moderate exercise (jogging), mega doses of vitamin C (6g/day) and positive thinking seems to do the trick
Hope it will last

Great news that your husband is doing well

Is you Hemo saying wants you to drop 8mg every 3rd day, if so I have to admit it does sound quick.

I would never advise anybody to go against medical advice however if it was me, personally I would want to go a bit slower.

The way I look at it, your husband is currently not having visible side effects, his count is good, he is doing good, so why run the risk of tapering off too fast.

The other thing, is your hemo going to be testing your husband every 3rd day as well?

I can only talk about my own experiences but each time my does has been lowered, it was after a 2 week period and it was only after a blood test.

Thank you Ghost for answering.
Hemo ‘s plan is to drop 8mg every 3rd day and he planned to do the blood test next week (so after 16 mg in total is going to be tapered).As from yesterday he is on 40mg.
We are planning to check counts on our own by the end of this week and based on that to decide should we continue with 40 or decrease.
I’m just not sure that 3-4 days on a dose is enough to fully see impact on the count level.
Unfortunately, we are not confident in our hemos expertise and that is the reason to question his proposals.(and somehow we don’t see that slowing down could do the harm; of course would never decide to speed up against hemos advice).
One more question – does it make sense to look for some answers from an Immunologist?
Since itp is in most cases caused with autoimmune system, maybe they can help a bit more with finding cause/defining optimal treatment (in cooperation with hemo of course)?

An Immunologist probably won't be able to tell you the cause. If that were possible, everyone would see one and get answers. Determining the cause or trigger usually doesn't fix the ITP because the damage is done. A few people have had luck with diet changes and having their houses checked for mold, etc. Very few ever determine the actual cause. It usually begins with a genetic predisposition.

In regards to talking to a Immunologist Sandi is right, whilst they might know something about ITP they will most likely not have an in depth knowledge or experience on the subject.

As for the trigger, well we are all different

For myself, being under a period of major prolong stress definitely plays it part. I was diagnosed when I was 17 and I am now 34 and I have only ever had to be treated twice and both times it was after a period of major prolonged stress.

For others it could something completely different.

Hi all,
Short update from our side:
-we went for 2nd opinion – that hemo prefers really slow tapering from pred - based on his schedule it should go from 44 to 0 in period of 5 months…
So we decided to take middle solution: 8mg/week with weekly blood check.
For now it works great, counts are even increasing (today they are at 146 after 6 days on 24 mg..)
In parallel we continue with positive attitude, healthy food+ vit C and exercising .
Also we get in touch with one natural healing expert and started some herbs treatments.
My husband overall condition is great, still no side effects from pred (when they are usually showing)?
Today we have received result for helicobacter pylori test – it is positive and he will start with antibiotics. (this test was done based on our request, our hemo doesn't believe that there is link between h.poly and itp).
We are wondering are there any issues with having antibiotics and pred on the same time?

Good news- great counts! Sounds like you are doing a very sensible taper. Not too fast or slow.

Just my opinion but I would be careful with herbs. Some herbs "strengthen" the immune system. Your husbands immune system is already working overtime so you don't necessarily want it "strengthened". My hemo said to specifically avoid herbs salix, willow, salicylic acid as its where aspirin comes from.

My advice from experience: don't over-treat ITP. Just my opinion, from what I've read here most hemos would disagree.

Good for you to go ahead with the H-pylori test. My hemo didn't want to test for it either. He just said it was rare and I didn't likely have it. I tested negative but gotta try everything!

Hi Galaxy,

Often on this site you will read of the importance of slowing the taper as you get to lower doses. When your husband went from 40 to 32 that was a 20% decrease. If he goes from 24 to 16 that will be a 33% decrease, and from 16 to 8 will be a 50% decrease. Going from 8 mg to zero could be dangerous.

Normal adrenal glands produce the equivalent of 6 mg of methylprednisone daily, but your husband's adrenal glands have atrophied by now, and are unable to produce enough cortisol. They will recover slowly starting when his dosage drops below 6mg. Complete recovery can take as long as 6 to 9 months! so don't be afraid of tapering too slowly.

Medrol tablets come as small as 2mg, and are scored to be split into 1 mg doses, so it is easy to taper 1 mg at a time, especially at lower doses, and can even be taken 1 mg every other day.

As his dosage decreases, he needs to slow his taper... much slower. What does the 2nd hemo recommend from his current dose down to zero? I would trust him. What is the hurry, if your husband is not having bad side effects from the Medrol? Adrenal insufficiency could result in a trip to the emergency room, and short of that can make him feel pretty crummy.

Here is an excellent article on steroid tapering. It is written for post-cushings, but the principles are the same.
csrf.net/doctors-answers/steroid-replacement-qa/tapering-steroid-replacement/

Before trying any herbal treatments, be sure to get advice from others on this site. Some herbals treatments can be harmful to platelets.

I wonder if there are any interactions between the herbal treatments and the pred and/or the antibiotics?
Erica

There aren't usually any issues being on antibiotics and Prednisone at the same time, but some antibiotics have been known to lower platelets. Sometimes they can also raise them or cause no changes at all, so you never know which way it will go. It is important to treat H. Pylori though regardless of whether or not it helps or hurts platelets, so I'd stick with the antibiotic protocol.

Rob is right about slowing the taper. Especially when it gets below 20mg. I've noticed a slower taper has helped prevent my platelets numbers from dropping. I do agree with how you are tapering by 8mg per week when above 20mg.

Your husband has only been on pred for 3-4wks if I'm reading this right. Thats a fairly brief time. I was on it the first time for 2 months and had no problem tapering off of it. I tapered by 10mg each week from 80mg-20mg, then 5mg each week after I got to 20mg.

Now I've been on it for over a year and have to taper super-slowly. I started at 5mg and am tapering less than 1mg per week. How long you've been on it makes a huge difference. My current symptom of tapering is fatigue- feel like I can't get up in the morning.

As you are noticing, there are many different opinions on how to take and manage prednisone! :laugh:
My hemo likes the every other day method- in my case 5mg one day, then 4.5 the next day, then 5mg. After a week or so I'd take only 4.5 for another week. Then third week is 4.5, next day 4mg, then 4.5 and on. good luck!

My wife had h.pillory and has itp.

She took anti biotics twice to kill h.pillory, did not matter to itp.. Stayed the same. She was not on any itp treatment though.

Thank you all for your answers and feedbacks, it is really great to get first hands experiences and advices :kiss: ..
In previous post I wasn't clear enough – we are aware that after cca 20mg tapering should go slower and with smaller doses.
We plan to stay on 24mn for one more week, to see how antibiotics will influence, and then to go with 4 mg decrease every 2nd week, and at 8 mg to go with 2mg decrease every2-3 weeks.. What do you think about this schedule?
2nd hemo schedule was to stay on every dose for 3 weeks, with decreasing of 8mg (so 3weeks40, 3 weeks 32, etc..); when reaching 8 mg/day decreasing 2mg every 6th week .
It is not that my housband wants to tapper asap no matter consequences, but he would defiantly want to avoid staying on preds any week longer than necessary. (but indeed It is really confusing to see how much different options and procedures is around this tapering.)
Today we will see 3dh hemo – hope this one will give us more confidence and trust in expertise and approach.
(2nd hemo we have visit had more knowledge about itp then the 1st one, but also thinks that spleen is not important organ, doesn't worry at all about side effects of preds…)
Regarding the herbs – we are sure they are not harmful for the platelets, on contrary (it is a really great and proven helping specialist with experience with itp).
But, now with treatment for h.poly we believe it is going to be too much substances for him to taking at the same time, so we will put the herbs treatment aside (and this advice from poseymint to not over treat itp also make sense).
And one question regarding the h.poly – how contagious it is ? Should I and the children being tested for it?
Doc (off course) said not because we don’t have any symptoms....

Your tapering schedule sounds very reasonable to me. Its good to have a plan in place- he can always adjust depending on how he feels. I predict your husband will taper a bit faster than staying on a dose 3weeks- :lol: no advice, just my prediction.

The tapering schedule of your second hemo makes no sense to me. 6wks? Seems that would make a person more dependent rather than less dependent. just my opinion, I don't really know whats right, just what has worked for me. Will be interesting to hear what 3rd hemo says.

Of course it all depends on how tapering is affecting your counts- hopefully his will stay up as the pred goes down! I don't know about h-pylori so won't comment-- good luck!

New info from us: todays count 243

Not sure is this influence of antibiotics (as such or them influencing on h.poly) or his body is kicking off in general, but it is a great number
We went to 3dh hemo and he is fine with our schedule of tapering, he even thinks we can make „jump“ from 24 to 16 and then go with smaller doses of 4 and 2mg/every 2nd-3dh week..
As from today he will go down to 16 and we will see status after two weeks.
He stopped with herbal treatment, but introduce probiotics (to minimize side effects of antibiotics).

My husband( still)feels great, except some shades of moon face , everything else is really good, both mentally and physically.

I know it is too early to make any mid/long term prognosis (he is now 8 weeks with itp), but we are very optimistic and positive about outcome of this journey…
Also, we really believe that our healthy life style especially food habits (mainly mediterranean diet) has lots of influence on him going through all of this without almost any (visible) side effects…
So, that’s all for now, will keep you posted about further development…
(Maybe our status/story will help someone new with ITP – for us it was extremely beneficial to found this place. This forum and stories we read here are one of the drivers for managing our attitude and feelings about this condition in positive direction– thank you all who are writting here for that :kiss: )

Just small remark: my husband is actually using Medrol which dosage is 4:5 against prednisone . So 16mg of his current dose correspond to the 20 mg of preds.