Prednisone Taper

I've had primary ITP for almost 3 years...Rituxan and Dex pulse did not work. IViG every 8 weeks along with prednisone has kept me in 20s-50s.I was once up to 60, then down to 40 and 20mg.
I've been on 5mg of prednisone daily for over a year and am trying to taper off completely.. Last time (about a year and a half ago, doc started me tapering by 1mg/ every 2 weeks, but by the time I got down to 1, my platelets plummeted to 4 so he took me back up to 5 where I've been until this taper).

I'm determined this time..but hope for input. A month ago, Going from 4-3mg my count was steady, but for the first 3-4 weeks, I had manageable but bad upper arm and shoulderblade pains and fatigue which went away after the first month, so I assumed my adrenals kicked back in.

A month ago, we decided to drop by 1/2mg every month just to be safe, and at 2.5mg I've have had the same side effects but a bit milder. I'm supposed to drop to 2mg tomorrow, but wonder if I'm better waiting until the symptoms subside completely of I should keep going. I can handle these side effects, but am just afraid of having the platelets drop again. Next count is in a month, so any input welcome, thanks!

Hi,

I'm wondering if you had side effects at low dosage over a long period of time on prednisone?

Aubrey

I've been on between 5 mg's and 15 mg's of Prednisone for 10 years (not for ITP). I have not had any short-term side effects, but the long-term side effects are all catching up to me. Eventually, they will.

I had no side effects at 5mg for several years...it's just the lower taper that's bringing them out -- total time on prednisone is just under 3 years.

Hi,

I took low-dose prednisone for 8-9 years. 5 mg usually kept my platelets well into safe counts, with occasional dips. During that time, I tried to get off many times, but they usually fell after a month or two. This was usually as the withdrawal symptoms started to clear up. Towards the end of that time, my counts were slowly increasing and I was able to drop the dose to 2.5 mg. My counts continued to increase and I was able to drop the prednisone completely. At that point I didn't bother to taper and just stopped.

Since then my platelets hover around 50 K with no treatment. I have to take the prednisone once or twice for dental procedures and my counts have been down in the 20's once or twice, but I've managed t avoid the prednisone otherwise.

I hope that you can get off of it soon. It's an awful drug.

It sure is an annoying drug. I got down to 2mg/2mg/3mg but then platelets dropped so now back on 5mg a day

Hello Judy,

I started a post regarding the same issue three years ago. Maybe you can read it to get some info from our experience. I have since been in the range of 80-150 after completely off steroids.

www.pdsa.org/forum-sp-534/7-treatment-general/27107-steroid-tapering-experience-advice-please.html?limitstart=0

According to my understanding with my past experience, we need to be very careful when the tapering is below 10mg to avoid crash (though the count always crashes for some people). The tapering speed for each individual should base on the count monitored closely (weekly if possible). Some may need very slow tapering like me, some may not.

On the safe side, my feeling is that it might be safer if tapering slowly instead of off completely from 5mg. The decision on when and whether or not to taper depend on the counts during the process.

The main reason for a slow taper is to allow the adrenal glands to function properly. Theoretically, very low doses shouldn't do much for counts at all, although I've heard people claim otherwise.

My understanding is that there are two separate phenomena that occur when tapering prednisone or other corticosteroids [aka glucocorticoids]

Cortisol is a natural hormone produced by the adrenal glands and regulated by the hypothalamus and pituitary feedback system. In its many roles, cortisol acts at the cellular level throughout the body to help regulate many important body functions. It influences glucose metabolism to help control blood sugar levels; helps maintain normal blood pressure, supports healthy immune system function and helps moderate the inflammatory response. Cortisol also functions as a stress hormone, helping to regulate our fight-or-flight response.

Glucocorticoids are substances which mimic the action of cortisol. When one takes prednisone, the pituitary stops telling the adrenal glands to produce cortisol, and over time, the adrenals will atrophy, and lose their ability to produce cortisol. It can take a surprisingly long time to recover from this atrophy, and adrenal insufficiency can ensue:

"Treatment with corticosteroids for more than 2–3 weeks can result in suppression of the HPA axis for up to 9 months and a reduced responsiveness of the adrenal gland for up to 16 months. Most patients are presumed to have some degree of adrenal insufficiency for up to 1 year after discontinuation of corticosteroid therapy."
onlinelibrary.wiley.com/doi/10.1046/j.1365-2036.2001.01060.x/full

Cortisol is normally produced in quantities equating to 5-10 mg of prednisone per day, so one might think that adrenal insufficiency should not be a factor until doses of prednisone are tapered past that level, and indeed this is where slow tapering becomes most critical.

However, when tapering from higher doses of prednisone, another effect is important. As doses were increased, the body at a cellular level became less responsive to steroids. The cellular glucocorticoid receptors became less responsive. Thus the body became dependent on higher than normal doses of prednisone. When reversing this process, tapering from higher levels needs to be slow to allow the glucocorticoid receptors to resume their normal responsiveness.

The importance of slow tapering cannot be overemphasized. Many on this website have seen their platelets plummet from tapering prednisone too quickly. Others have experienced the unpleasant effects of withdrawal, including "depression, anorexia, malaise, weight loss, nausea, desquamation, headache, fever, arthralgias, and/or myalgias." - ibid

I was diagnosed with ITP 35 years ago and after treatment with Prednisone I went into remission until August 2015 when I was bruising all over anf after a blood test I was told to get to an ER with a 2k count. I was given 120mg of prednisone and put in ICU for several days and released 6 days later with a 120k count. I was given an IV gamma treatment for a few days also. When I was released I was put on 60mg of prednisone daily and started weekly visits to a hematologist. As the weeks went on and my counts stayed in reasonable levels my Prednisone was tapered. In December when I went to 15mgs. the pains started. My sciatica in legs and back worsened. I was given oxycodone for the pain. I started feeling weak. Down to 10 mgs and the weakness worsened. Going up a flight of stairs was difficult. Walking was a chore. I felt breathless and strained. 5mgs made everything worse and now I'nn off of it totally and feel like I want to die. The doc feels that prednisone is no longer an option for me and has me on Nplate for several weeks now which seems to me keeping my levels at around 125k.

That seems a very rapid taper. In the UK from 5mg down would take about 4 months.

A low sugar diet will help mitigate many prednisone side effects. You won't feel so much like you are on it, especially helpful when taking high dose levels. You have to be vigilant because there is sugar in almost everything. Been there and done that. I'd like to see an MD comment on that.

cheers,
john

I suffered a great deal of side effects from being on and tapering off prednisone -- my highest dosage was 100mg. My taper took five months and was very gradual. I had several different issues at various drops. Muscle spasms to intense pain, severe fatigue, blinding headaches, menorrhagia, hair loss to name a few. Good luck!

I'm so sorry Rreyerson! I've been there... It sucks, but it gets better. I wish I had a magic formula... But I don't. Sleep as much as you can. Try to take a walk everyday to keep your muscles moving a bit -- I know this feels impossible right now, but it will make a difference in a couple of weeks. Hot baths helped me with the aches. Netflix helped distract me from how horrible I felt. At one point I even asked my hematologist if I could have an Rx for speed (which was turned down) because I felt as though I was trapped in quicksand moving was a major effort. I had no energy or strength to make it up a flight of stairs and folding laundry felt like an Olympic event. It slowly and gradually got better... But took me a while to bounce back. Patience, I know is hard when you feel this crappy.... Hang in there!

I've tapered prednisone several times and it works for me to go very slowly. At the first sign of debilitating fatigue, body aches, joint pain or all over fluish feeling I stop tapering and stay on that dose until I feel better- usually a week. I dropped by .5mg the last time. I alternate doses each day then stay on the new dose for a week- then alternate doses at the new level. I also SLEEP A LOT when tapering. A doctor told me once the only way to heal the adrenals is to sleep- it works. I work a split shift- mornings 4 hours, then evenings 4 hrs. So I slept each afternoon. There came a point when I could make it through a 12 hr day without a nap- thats when I knew my adrenals had kicked back in.

I agree with John about sugar. Pred raises the blood sugar and blood pressure, causes weight gain, water retention plus many other problems. I have been off sugar and and back on pred for 8mos. I have felt better this time than when I was on pred in the past (and eating every sugary thing in sight). Also I have not gained any weight this time- a minor miracle as pred makes me crave comfort foods. Gained 30 lbs on pred in earlier years. Losing weight while on pred is impossible for me, so trying to be patient with extra pounds.

I started back on Nplate end of Jan, it hasn't brought my counts up yet. I'm taking 3mcg with 10mg pred, counts are at 5-8K. I used to be more responsive to Nplate- arggh!! Trying not to worry yet-- give it time right? Also I used to be more responsive to pred. Last August 10mg would shoot my counts to over 70K. For me pred loses its effectiveness the longer I'm on it. Side effects go up, counts go down. I find that doctors don't really understand prednisone, so I've had to take care of myself and make my own decisions while on it and tapering. good luck

Rryerson, You mentioned leg pain and trouble with stairs when tapering. That is common. Prednisone I had to take at 40 mg for short term four days for gout did wonders for my non-gout joint pain. Left hip is worst. It is anti-inflamatory. So lowering the dose you need to add a replacement non-steriod anti-inflamttory or NSAID to have the same pain relief. I hate taking Pred. Am in 80 MG. Count today was 2. Had ten years remission no treatement and wham counts fell off the cliff.

Cindy