Tapering on Prednisolone

Hi everybody, quick question, I started on 90mg in July when I had a count of 2 ( this is my second time on Prednisolone....

So tapered this time more slowly and my counts remained stable even shot up to 229. My doc has tapered me from 5mg to 4 mg and I have been on 4 mg for 2 weeks now, but my counts dropped a lot in 2 weeks, which I was suprised by, so it was 183 down to 109 yesterday. I guess it was rather a shock as I have been having good counts with little drops nothing too big.... so he is keeping me for another week on 4 mg.
Eventually he says we will go down to 1mg then stop.

Wondering - do you think your body knows the difference between 5mg and 4mg and then doesnt like the 4mg or your body has a certain mg of pred it can work with and anything lower it just drops...as it doesnt work anymore?

I was trying to work out on Sunday if I had taken my prednisolone ( I am very good at taking it and I even have a plastic pill dispenser), but for some reason I thought I didnt, so could that cause a big drop, or I thought or feel I was getting a cold/flu lately.....I know everyone says platelets go up and down a lot.....

Fiona:

4 mg's probably doesn't do a lot for platelets. Going down slowly is more for the sake of the adrenal glands than the counts. The adrenals produce about 7.5 mg's of cortisol a day and when Prednisone is added, they stop production because the cortisol has been replaced. When you taper, the adrenals have to begin producing cortisol again and it can take time for them to recognize that and start up again.

Counts can go down during a taper, but they can also go up. Many people have been surprised by that because the assumption is that a drop will continue. Wait and see what happens next. If you keep dropping, you'll have to discuss options with your doctor. Trying to figure out what is causing a drop will drive you crazy. Try not to focus on that....you will probably never know and even if you did, there isn't much you can do to stop it unless you keep going back up in dose. That isn't a very good idea long-term.

I started my taper a month ago so far so good went to doc today platelets are 177 and went to 20mg of pred. I am wondering what comes after the pred is gone tho. I go back in 2 weeks my blood pressure spiked today for me I am always 120/80 have been my whole life it was 155/96 today they gave me a low does of bp meds to take he thinks its from the pred.

Hi yes I also had some times like fast heartbeats but they went away didnt have to take BP medication thankfully, and I also told the doctors that everytime I went for a blood count or see them my heart would race, so they told me to buy a good BP monitor and do readings at home and bring them in, and it was fine.

I am also wondering what comes next after the tappering, as last time I tapered and then I went from 128 to 2 in 2 weeks and they started me quickly again on steroids, this time they dont want to do that as I have had enough of steroids. I guess all doctors hope that your body will rectify itself and sort itself out after steroids like re-starting a computer, I dont have that much faith, tho as I have dropped a bit coming down so I think I may need a 2nd intervention soon, but according to the Doc there is a plan I just need to ride it out and see whats next... so I guess they will tell you the same, of course why take tablets if you dont have to so I guess they see if you can remain stable.

Thanks Sandi, I think as this is my second run on prednisolone and when they told me I dropped 74 in 2 weeks I just had the thought of 'oh no' not again, and of course I thought here we go again, down down down and back into hospital again, I have tried SO hard to get used to this 'condition' but not sure I ever will.
It was lovely when I had counts of 229 and 183 I kind of forgot about it for a while but now I am 109 I start to look for signs etc again, as I know when I drop I can drop very quickly and right down to nothing, I know I cant look for reasons why I drop - lets face it there are none, its just the body isnt it.
But I just wish I could stop the worry all the time thats what I want.... I know and I knew that tappering the second time would be touch and go, and the doctor did warn me and say to me, it could happen again a drastic drop, but they are monitoring it and there are plans in place so I have to trust them, its just SO hard not to worry.

I remember the last time I was 128 and off steroids and supposed to travel to France on holiday the next week, and the doctors said yes go you should be fine, everyone said live your life, which I thought, easier said than done - I never went as I was not comfortable going, and the next thing I knew I was in hospital, now I am again planning a trip to France and sitting at 109 but on 4mg, (only difference is I am on 4mg - but as you say probably doesnt do much for platlets) and the question comes up again, do I go in 2 weeks time, its just little things like this I guess that I battle with, but then I guess we have not yet worked out what the plan is and I am not stable, so perhaps I shelve travel until next year and just write this year off and file it away under 'crappy year' -

Fiona:

It sounds like you have white coat syndrome.

www.whitecoatsyndrome.org/

I think a big part of trying to get over the fear is identifying exactly what you are afraid of. If you can figure that out, post it here and we can try to help you.

You could always just take extra prednisone along on your trip. Then if you thought your counts were falling you could bump it up and get your counts up. I think it would be OK now, especially because you've had the ITP for a while and know what your symptoms are like and how you respond to treatment.

For me, 4 mg would be enough to keep my platelets in the safe zone. I was on doses of 2.5 to 5 mg for almost 10 years. During this time I tried to get off many times, but my platelets always quickly fell below 10. On the prednisone, they were around 30 to 50. Then, about a year and half ago, I was taking 2.5 mg of prednisone and my platelets were 130, so I stopped it. Since then they've bounced around between 20 to 170 without treatment. Of course, everyone is different, and what works for one person doesn't work for the next, but for me low dose prednisone works. Even at those doses it is not the nicest treatment (understatement of the year), so you may be better off with something else.

Hey Fiona,
I have a similar story with travel. I have had ITP for 9 years, with 2 remissions that lasted a total of 8 years, from Rituxan. I was in remission last week when I booked tickets for a 3 month trip overseas. I am leaving on Tuesday! A real last minute trip! The next day I woke up with blood in my mouth, which is how my first remission ended. :S

I couldn't get a CBC for a couple of days, but when I finally did, yep I was at 11k. Sigh. Talked to my Dr. and we worked out a plan. I started on 60 mg Prednisone immediately with a 9 week taper. (sigh, hate pred.) I will have a CBC before I leave, and have CBC's while away. We will keep in contact thru email, and he will advice me if my numbers drop below the safe number of 30k. I have 200 pills of 20 mg of pred to keep me well supplied. I hope not use them all HA HA.

Of course since I have had ITP so long, my Dr and I are comfortable about this plan. We know how my body will react, (well, probably) and what to if I crash. And of course there ARE hospitals in India. lol

I intend to give a separate "Topic" on all this, when I have time. But just there is so much to do when you are leaving for so long!

Bottom line, yes you can travel, if you know your body and you are comfortable with it. (Otherwise the anxiety is enough to keep you from healing.)

We all just need to do what we feel is best for us.

We moved to Tokyo shortly after my diagnosis and while on 60mg of prednisone - I didn't know my body then [in fact do I now?], I didn't even know who would be my doctor once I got there or how long it would take to get one - all I knew was we had this fantastic opportunity to move to and live in Japan, how could I refuse that because of platelets?! After that we moved to Hong Kong. We went on various trips, it was super! That would have been opportunity lost forever!

Fiona no one can tell you what you should do - you have to do what you are comfortable with.

Ananta have a wonderful trip - enjoy it and life! Where else are you going besides India?

So still on 4mg and had another blood count today, its gone from 109 to 87 in a week. Doc says to stay on 4mg and back next week.

When do they decide its time for 2nd line treatment? what is the magic number is it 50 or below that they then say ok its time for another treatment... or can I actually say to them I now want 2nd line treatment as my past history on steroids etc, was that I got to 128 stopped steroids but in 2 weeks plummeted to 2 and was hospitalised, I dont want to go down to single figures again.....

There is no magic number, most people play it by ear. I waited until I hit 10k or 20k because I always wanted to avoid treatment as much as possible. Over time, they can end up causing damage. The next time you see your doctor, you need to ask him when he thinks you should treat and what he would suggest as treatment.

Thanks Sandi, yes I will I just dont want to have to go down to 2 again and then spend 7 days in hospital trying to get the count up again.... He did mention that before we start treatment and if I need urgent help it would be IVIG - I think he called it and then I said to him I was keen on not an auto immune supressant but a drug which produced platlets like nplate etc... as I thought that was the least evasive drug, the Haematologist kind of agreed but said they were pricey on the NHS so depends...... I just think they like to wait and see if you become stable dont they before these harsh drugs are used, but I think I can see where its going surely.... SOUTH!!!!

I hope one day I will get used to all this... as for now... lots of tears, scared to death and fustration!

Fiona:

No, they don't wait until you are stable before using the harsher drugs. If you are stable, then you don't need treatment.

When I was first diagnosed, I went through two rounds of Prednisone like you. I actually had good counts for a while after that, and when I dropped, we went back to Prednisone. I did a lower dose (30 mg's) on and off a few times, just to bump me up and keep counts in a safe zone, then got tired of the side effects and went to Rituxan. It was new at the time (2003) and I was his first patient to use it for ITP. We didn't have the TPO's available then. Win-Rho didn't work for me and I did not want a splenectomy, so options were limited back then.

I actually think if you had a different doctor, you might be a bit calmer about all of this. I believe that doctors set the tone for the patient. If your doctor hospitalizes and scares you when your counts drop, you're going to experience more fear. My doctor always just told me to go about normal living, so I worked with counts under 5k. Symptoms are important. I had bruises and petechiae, but no real bleeding (other than a nasty period).

IVIG is good in a pinch, but it is so temporary. Usually, it lasts about a week. It takes so long to infuse and can have horrible side effects (aseptic meningitis). Most people who have gone through that have said IVIG is not worth it. IVIG is not an immunosuppressant.

I think the TPO's would be a good option for you because the side effects are fewer than a lot of the other treatments and they usually work. If I'd had that option, I would have used a TPO and skipped Rituxan. But here's the thing....it can take time to get stabilized on N-Plate. It takes time to find the right dose....a few weeks or months. In the meantime, counts can drop to single digits in between treatments. You'd have to be willing to ride that out if it happens. Also, when a person uses N-Plate or Promacta properly, the goal is to dose it so that you maintain counts of around 50k. Counts should not be maintained in the normal range. You'd have to be prepared to live with counts that are between 35k and 70k because once the dose is adjusted to what works for you, counts vary from week to week. That works great for many people and most have said that their lives became normal again once they began that drug. Also, people have gone into remission with the TPO's, but it can take time and patience.

There are pitfalls to every treatment and the decision is tough sometimes. It might be a good idea to read through some of the posts about N-Plate. You can see what others have gone through. Here's one to get you started.

pdsa.org/forum-sp-534/7-treatment-general/28395-started-nplate-today.html#44977

I'll echo what Sandi said regarding the tone your hematologist uses and how it can effect you. That was one of the two reasons I eventually had to make a switch of doctors a month or so ago - that and my first hemo didn't want to follow MY plans for treatment.

I found it interesting that I learned to stop 'freaking out' about having this condition long before those around me did. I actually had to tell a few people to calm down, because it caused me to stress out more.

I found the more I educated myself and could better read what my body was telling me, it was easier to accept what was going on, advocate for my care on my terms, and more easily, calmly deal with everything. It's not to say I don't have moments of frustration or other emotions - because believe me I do - but I have learned how to manage it all better.

Related to that, I'll add this: you can live out in the 'real world' with single digit counts. It's not ideal, but can be done as long as you don't have major symptoms. I know, because I did it for almost three months. I wouldn't let them stick me back in a hospital again with single digit counts unless I had a major issue. Not worth it.

Fiona, you have gotten some good responses. Let me add this:

Doctors are often accustomed to patients having expectations of "normal" counts, and being unsatisfied until the problem is "fixed". The platelet counts your doctor is comfortable with depend a lot on what YOU are comfortable with. Ellen's hematologist was pushing treatment at 50k until Ellen said she was fine down to 20k or even lower. The hematologist immediately went along with that with no argument.

Like Sandi said, there is no magic number. You need to pay attention to your own body, educate yourself as much as possible, and find your own comfort zone. Remember that the treatment is often worse than the "cure", and balancing the plusses against the minuses requires you to make value judgments only you can make. Define your comfort zone, then communicate it to your doctor. If your doctor won't agree, then you need a different doctor.

Fiona:

I agree with Rob and MatthewR. I recently had a drop to 14K (from values around 30K - I am not taking any drugs since about one year) with no signs of bleeding. I said to my hematologist that I preferred to wait and see. We also agreed that in the case of bleeding I would have contacted him. After one week I was back at 27K.

As we are dealing with a chronical disease, we have to learn from the signs of our own body. Keep calm and stay positive, there is much worse than ITP around. Try to go on treatment when it is really necessary. I am glad that my doctor always agrees with my suggestions.

Carl

Thanks everyone.... I think its ME that panics (well dont think they are), but I get SO stressed with this whole thing and I find it very emotional, the nurse was saying it can be down to being on steroids and tapering off them as you do feel very emotional. I am a very nervous patient as Sandi said of course its white coat syndrome had it since I was little..... I know I need to try for my own sake remember that there is worse conditions out there - that I know - and I have been down to 2 before and nothing happened except for rashes and bruising and mouth blisters, and I lived, I know ALL this and I have read loads on the websites but still I have panic in me. So I dont think its the doctors fault its all ME.
I have only had this since March so I guess its only been just over 8 months....

I really do think everyone on here is so brave when they have low counts and I DO understand that the treatment can be worse than the condition, I understand ALL this, but still I panic and stress... a worry pot if you will.

And what makes it worse is my mother has it aswell, and copes with it without treatment, she is around the 80 mark but stable most months, and only goes for blood checks now every 3 months... even she cannot reassure me.

Tried even Reiki and Meditation to try and help me through so will stick with those, it doesnt help that I have also recently given up taking anti depressants as I want to be rid of tablets in my system, so thought oh well lets give those up aswell..... :ohmy:

Anyway it is so good to read everyones responses and findings, it does help in some way.

Stopping antidepressants during this time is probably not a wise choice. I understand the reason, but that will also only make things worse, especially if you stopped cold turkey.

Fiona - you'll be okay. You just have to remember to breathe. Keep trying the meditation.