Prednisolone tapering schedule

Hi, just wanted to get some general feedback and if anyone has had any experience with Prednisolone tapering after a first time diagnoses i've been setup with a long tapering schedule which i'm really not happy about and starting to feel some subtle strange effects of Prednisolone + Omeprazole. I want to return my body chemistry to the natural state as early as possible and i've decided not to proceed with any drug treatments and go for alternative methods. (during this time i've had two platelets count checks 1 was at 249, and second one was at 110) the 249 was shortly after a vitamin D dose, and 110 with about a week of no vitamin D.

haematologist setup schedule as follows:

20mg prednisolone + 20mg omeprazole -> 2 weeks
10mg prednisolone + 20mg omeprazole -> 2 weeks
5mg prednisolone + 20mg omeprazole -> 2 weeks

i've asked about changing it but have not got a response as of yet, but has anyone had a more progessive tapering schedule? maybe something like this, and is Omeprazole even required with lower dose of Prednisolone?:

20mg prednisolone + 20mg omeprazole -> 1 weeks
10mg prednisolone + 20mg omeprazole -> 1 weeks
5mg prednisolone + 20mg omeprazole -> 1 weeks

How long have you been on Prednisolone and at what doses?

Tapering schedules depend on the length of time you have been taking it.

Hi, i've been started with prednisolone at below schedule:
JAN 23 -> JAN 26 - 60MG
JAN 27 -> FEB 02, 40MG
FEB 03 -> NOW 20mg

From personal experience I think that is too fast a taper. I would suggest slower than the standard UK Guidelines of which I have listed the abridged edition below.

Gradual withdrawal should be considered for people whose disease is unlikely to relapse and who have:
Received more than 3 weeks of corticosteroid treatment.
Received more than 40 mg prednisolone daily or equivalent for more than 1 week. Which is where you fit in

During withdrawal, the dose of oral corticosteroids may be reduced rapidly down to physiological doses (about 7.5 mg of prednisolone or equivalent) and reduced more slowly thereafter.
Suggested method of withdrawing prednisolone

The problem has resolved and treatment has been given for only a few weeks.
Reduce by 2.5 mg every 3–4 days, down to 7.5 mg per day, then reduce more slowly, for example by 2.5 mg every week, fortnight, or month.
There is uncertainty about disease resolution and/or therapy has been given for many weeks.
Reduce by 2.5 mg every fortnight or month down to 7.5 mg per day, then reduce by 1 mg every month.
Symptoms of the disease are likely to recur on withdrawal.
Reduce by 1 mg every month.

It's normal to want to be off of Prednisone quickly....we've all been there. However, tapering too fast can actually cause side effects to get worse due to withdrawal. Slower is better. Also, since your counts seem to be dropping, you might end up experiencing a platelet crash if you go too fast.

I'd say that the Omeprazole is optional at this point. My first few times on steroids, I didn't take any acid reducers. I've been on 10 to 15 mg's for twelve years and don't take any. I have horrible reflux, but find that diet works better than the pills anyway.

Thanks for the feedback really appreciated, so that recommending to reduce by 2.5mg every 3/4 days, which would be 5mg per week.

so maybe more conservative, going from:
20mg -> 15mg -> 10mg -> 5mg ( each week )

There really isn't a way to tell if the disorder is likely to recur, too many environmental factors to consider. Although possible but it seems to me unlikely that a chronic condition has suddenly been triggered without any known reason.

Thanks sandi,,, so yeah the omeprazole is less needed at lower doses of say 10mg or less that case when i get to those levels ill happily skip out on that.

Qwerty - ITP seemed to appear out of no where for most of us. I was diagnosed after a bad cold and had a lot of stress going on, but I can't prove that caused it. Illnesses, antibiotics, vaccines and herbal supplements can all trigger ITP, as well as environmental factors. At this point, you are not in remission yet, so ITP can't 'recur' because you still have it. As long as a person is on treatment, it's not remission. Remission means no treatment for at least six months and able to maintain counts in the normal range. Tapering too fast can cause counts to drop quickly.

Hi Sandi, interesting point about remissions, I guess thats just what i want to find out as soon and as safely as possible, getting off the drugs and seeing what the counts are. They said only about 20% of people have total remission after the first level of treatment, but I wonder did they also treat the other possible issues not having right balance of vitamins, nutrition to have given the body the things it needs to repair itself vs drugs alone.

You won't get that from traditional medicine. They don't look at nutrition as a possible causative factor in illness. They treat the symptoms and that's it.

qwerty wrote: ... They said only about 20% of people have total remission after the first level of treatment, but I wonder did they also treat the other possible issues not having right balance of vitamins, nutrition to have given the body the things it needs to repair itself vs drugs alone.

I think if you were to take a poll everyone would say they've tried those things, and more. Wouldn't it be foolish not to?

Here is a copy of an earlier post I put up It may be of use. Avoiding withdraw symptoms and an adrenal crisis are paramount

mrsb04 replied the topic:Is Promacta not effective if I crash after I am on it?
Is Promacta not effective if I crash after I am on it?
Category: Treatment - General

Cindy
I'm in the UK it was about 9am. Now it is almost 5pm and nearly dark.
I have to say, from personal experience, don't come down too quickly. Below 10mg I'd say at least a week on each dose coming down to 7.5 mg a day.
The fun starts as you get below you own physiological dose, (approx 7.5mg a day) because your adrenals need to kick in to compensate for the shortfall.

This is the very tiring bit. Protocol is 1mg/month drop in dose. I would suggest 0.5 mg/ fortnight { copy of a post below explains}

I've attempted 3 tapers so far. The first time I followed my Haemo's advice, ended up in my GP's surgery a wreck, 6 months off work to get over it.
2nd time, I took it much more slowly. N Plate stopping working put paid to that taper.
I have been on my 3rd attempt since last Christmas when I was on 20mg and made it down to 3mg/day by the beginning of September. I am staying on this dose for 3 months. Giving my adrenals a bit of a break. Constantly having to adjust to more work, they deserve a little respite.

I remain eternally grateful to Poseymint, who offered this invaluable advice, on my Topic

When I was tapering I had fatigue and achy joints- I had to sleep a lot to get through it. I couldn't over-work or stay up late. Stress and work pressure really made me tired. I tried to exercise at the gym but my muscles felt so weak and shakey after riding the bicycle- I had to be gentle on myself and take it easy. I knew I was getting my adrenals back when I could go all day without taking a nap. good luck!

I tapered even slower than 0.5mg per week because I alternated days to weave the new dose in. Example: 3mg for a week, then alternating days with 2.5mg for a week. Then 2.5mg for a week. Sometimes I even stayed on a dose for longer than a week if I felt too tired to lower it.
After I got completely off pred I was sensitive to stress for quite a while, 3-6mos. Just as in the article that Rob posted about adrenal insufficiency. If I stayed up too late or worked long hours I would really feel it! It would be hard to recover. Also emotional stress made me tired. BUT overall I felt so much better! Just so much calmer, relaxed and easy-going. that was nice. Plus so great to lose the weight that I had gained and lose the moon face, double chin. I had so much fat around my neck I think it was giving me sleep apnea- ugh. I am sleeping and breathing much better since off pred.

If you get a nasty infection take up to 20mg a day for 3 days then go back to where you were on your taper. I failed to do this s in June and regretted it for about 3 months.
I hope this has been of use.

Hal9000 wrote:

qwerty wrote: ... They said only about 20% of people have total remission after the first level of treatment, but I wonder did they also treat the other possible issues not having right balance of vitamins, nutrition to have given the body the things it needs to repair itself vs drugs alone.

I think if you were to take a poll everyone would say they've tried those things, and more. Wouldn't it be foolish not to?

Totally agreed, but then again with such little understanding about this condition finding the right balance might not be as straight forward, everyone likely has many different factors to consider and needs to find a solution that works for them.

Sandi wrote: You won't get that from traditional medicine. They don't look at nutrition as a possible causative factor in illness. They treat the symptoms and that's it.

Yeah exactly, I think for emergency situations there is the need for western medicines, but for life-long health and wellness you need to look at lifestyle, diet, and other various environmental factors.

If you get a nasty infection take up to 20mg a day for 3 days then go back to where you were on your taper. I failed to do this s in June and regretted it for about 3 months.
I hope this has been of use.

Hi mrsb04, thanks for the post,, yeah very interesting read. So today I decided to go with the more conservative route to taper down, at 15mg today for next 4 days then going to try 10mg and see how it goes. Generally speaking the symptoms should be quite clear if there is an issue with the bruising with platelets levels dropping extremely low can just up the dose back up if needed.

Mrsb, there is a lot of detail and nuance to steroid tapering. If you want to make a web page out of this info your accumulating, I can post it on my website.

Beyond my technological abilities I'm afraid Hal

I think its safe to say that the collected knowledge here at PDSA about steroid tapering is exceptionally useful! better than what most doctors can tell you. Not to knock doctors, its just that you learn so much from experience.

qwerty - I think you've got a good plan with the 20>15 >10. Then you could go 7.5 or try 5mg and see how you feel. My withdrawal symptoms have been- fluish feeling, achey all over, joint pain, fatigue, tired muscles, sleepy, depression. It doesn't pay to tough it out, its better to just take a bit more pred and taper more slowly. That said, you haven't been on it very long so likely you'll do just fine.

My first hematologist also wanted me on Prilosec- gosh I had forgotten that. I didn't even have acid problems so I didn't take it. I thought it would get my system more imbalanced than it already was. Later on I did take Pepcid but it began to give me migraines.
Yes, very well put, as you said, for health and wellness we need to look at lifestyle and diet. I have gone (mostly) vegetarian, quit sugar, added swimming/gym, lost 40 pounds since my journey with ITP began. Blood pressure, cholesterol, A1c have all come down. It hasn't affected my platelets though, I would still be at zero if I quit treatment, but my overall mobility, vitality, feeling of good health and well-being is much improved!
Good luck on your taper- hope your counts stay up!

Hi Poseymint, thanks for the feedback.

Tomorrow will be first day of 10mg, and going to skip out on Omeprazole so should be interesting.

Interesting, so pretty much all your vitamin levels are at optimal levels, and you're system is still killing platelets? All types of allergies have been rooted out (food/environmental/pets)?

Oh I didn't mean to suggest that I am anywhere near perfect regarding diet, checking vitamin levels, allergens, environmental toxins, etc. Heck no. I was simply sharing that in the 9 years that I've had ITP, I had made some changes which had improved some aspects of my blood work. And I'm very pleased with that and feel overall better-- but my platelets have not been affected. Because I'm on Nplate weekly injections, I have had my counts checked every week for the past 4 years and I've noticed my platelets go up because of drug treatment and they go up when I have a viral cold/flu.

Some people absolutely do improve their ITP and other auto-immune issues with diet and lifestyle changes. that is great! I love reading those stories and totally believe that is possible and certainly preferable to drugs. I also have been diagnosed with Lupus and Sjogrens, these two auto-immune disorders sometimes go together along with ITP. So interestingly, diet and meditation does affect my Lupus/Sjogrens symptoms. They will flare up if I eat the wrong foods or am under certain kinds of stress- overwork, lack of sleep, dealing with difficult people. And likewise the symptoms will calm down when I meditate, get good sleep, eat right. But I have never noticed my platelet count to be affected by any of that.

I am still working on getting the food right. hah I probably should go gluten free or at least try it. I was tested by an Immunologist for food allergies, gluten, everything and was negative on all foods tested. It was the pin prick test of 70 foods which is supposed to be very accurate. That said, I clearly have inflammation (stiff joints esp hands) after I eat potatoes, pasta- plus have some mouth itching after eating nuts, avocados. So the testing doesn't match my experience. I have had Vitamin D and B12 tested and was normal but not other vitamins.

Good luck, qwerty! hope dropping to 10mg goes well. You should feel better as the pred is lowered. I always began to feel normal again at about 5mg.

Hi Poseymint,

Oh wow, I would defeinatly try as much as you can. Since this happened to me i've been reading non stop about it, and have decided on drug-free approach (apart from medical emergencies), with aryuvedic lifestyle to start with.

Hope you have some joy with some additional diet changes, I have no idea of Lupus or Sjogrens,, but I think with auto-immune in general people dont have a grasp on this.

Here is a link for someone inspirational for me and i'm following some of his guidelines :
www.drjohnbergman.com/disease/autoimmune-disease/

Here's the thing that I've found about gluten. You don't have to have a proven gluten allergy to have a problem with gluten. Some people have a sensitivity that doesn't show on any tests. I've read that it's not the gluten per se that causes the problem, it's the glyphosate (herbicide added to it) that causes the problems (leaky gut). When I went gluten free for three months, I was feeling much better (I also have Lupus). It's hard to stick to and can be expensive because to do it right, you also have to go organic.

In order to get your body on track, you have to do more than just have vitamin levels tested. You need to go to an alternative medicine doctor; they do tests that most people never heard of, and they tell you what your body is lacking. My sister went and paid $3,500. She got about 10 bottles of supplements, but was afraid to take any of them. She has a real fear of medications, even real ones. It's to the point of a real phobia. Anyway, I would totally do that if I could afford it.

Hi Sandi, interesting point about gluten,, i'm not sure about my case but i've been limiting this out and yeah you're right it can be challenging but every single thing you put into your body is what makes up the chemistry, so now i'm even more careful about what im putting inside me avoiding any food-like products and consuming real food and i'd vote for organic everything when given the chance. (which i pretty much follow already).

Are you based in US? that sounds quite expensive for tests + supplements, hopefully she could get over the phobia,, seems like a wasted effort, is she dealing with something similar to ITP/Lupus ?

Yes, I'm in the US. She was diagnosed with POTS a few months ago.

AHh ok, so that explains why you have to pay for medical care

Not sure what POTS is but ,, sounds like she was on the right track looking at alternative healings.

So today i had platelets count at 142, and this is now 3 days at taking 5MG prednisolone and no omeprazole. so hopefully will be able to stop altogether soon.

So i went in yesterday and platelets were 147, and this is 3 days of no Prednisolone.

Hemo still wanted me to take 2 weeks of 5mg, but i lied and said ok, and i didnt tell her that i stopped taking them 3 days prior to the test.

Okay, we won't tell, but you were supposed to go slow!

Good news about your count. I hope your HPA axis is in tip top condition to cope with an abrupt cessation of Pred.

Fingers crossed, I feeling actually better than ever now, it's been officially 1 week of no pred.

@mrsb04, I thought I had gradually stopped the prednisone? I lowered the dosage 5 mg every 5 days, and feeling good, no signs of ITP or bleeding that doesnt stop, bruises etc.
I've made quite a few changes to diet,
-stopped coffee
-daily spoon of cod liver oil
-daily multi-vitamin
-daily aloe vera juice
-no processed foods or snacks

Good for you Qwerty! If you aren't having withdrawal symptoms then you did fine with your pred taper. You would know it if your adrenals were low- fatigue, aches and pains, fluish muscles aches- dog-tired. I am trying to go off caffeine also- its hard! I love my coffee. I saw a neurologist who thinks I'm having migraine activity without the headache- visual disturbances, dizzyiness. He said that the caffeine has got to go. wah Good luck to you- your platelets are at a great number!