My Prednisone Warrior Story

Hello! I am Megan, a 30-something year old pharmacist and mother in the southwest United States diagnosed with ITP in October 2017.

*This was originally published on ITP & Me as a guest post.

Shivering in 5 layers of clothes and 3 blankets, I could not get warm even though I had a 104-degree fever, my body infected by mastitis. I ached, moaned, was burning hot one moment, then even the blazing fireplace and more blankets couldn’t get me warm the next. I called my nurse midwife for a prescription of antibiotics for this 6^th round of mastitis I had endured after giving birth to four children. Slowly the fever and pain went away.

As I neared the end of the course of antibiotic, the unfathomable happened: I got mastitis again, but on the other side! I was feverish and miserable again and confused as to how the antibiotic failed to protect me from the next bout of misery, my 7^th case of mastitis. My prescriber sent a new antibiotic to the pharmacy. This time near the end of the course of antibiotics, something even more surprising happened. I noticed while readying for bed that my skin started to change. Having learned about lethal skin rashes caused by antibiotics while I was earning my Doctor of Pharmacy degree to become a pharmacist, I was immediately concerned.

Mysterious Rash

First my neck looked like a million red dots suddenly appeared. You know those little red dots that are often on people’s chests? Those are called cherry angiomas and are harmless, and I had a few of those. But now I had so many I could not count them. I googled and consulted UpToDate, a high quality medical reference, and determined that I didn’t have cherry angiomas, but something else: I had petechiae.

By morning when I made the appointment with the dermatologist, the red dot rash had spread all the way down my trunk, and onto my thighs. Two hours later at their office, the red dots had spread to my feet, and now my thighs had some oddly-shaped bruises that didn’t come from trauma.

I even had a purpura lesion on my arm I remembered studying in school. My medical training told me I was bleeding inside.

The dermatology physician’s assistant asked his supervising medical doctor to check out the rash because it puzzled him. None of us could find a medical drug reference to show that my antibiotic had caused this rash, but they told me to stop taking it (which I had already done in my concern). I asked them to order a lab draw of blood clotting factors and they looked at me like I was crazy. Finally, they consented to order a CBC (complete blood count) to make sure my blood was okay. I knew it wasn’t. I dutifully took the order and succumbed to the needle in my elbow to check my blood.

Two hours after that, their office assistant frantically tracked me down to tell me my platelets were super low (12, with a normal range of 150-400) and I needed to be seen by my general doctor. But as soon as the general doctor heard why, he said there was nothing he could do for me anyway, and I needed to get to the emergency room (ER) as soon as possible.

Hospitalized

When they drew my blood in the ER, my platelet level had dropped to 3, almost undetectably low. I was admitted into the hospital and told I had ITP and that I needed to stay for about a week – a week! I thought, how can I stay a week as a mother of four small children, one of whom relied on me for nourishment through breastmilk?

Receiving urgent care, the medical team gave me donor platelets, 60 mg of prednisone, and sleeping pills to deal with the imminent insomnia caused by the prednisone. Having been on the caregiving side in medical situations, it was foreign to be the powerless patient in a hospital.

My platelets responded to the super high dose steroids, and thankfully they discharged me home from the hospital after 4 days, in time to dress my children for Halloween. I thought my ITP journey was over. But it had just begun.

Journey Just Begun

Little did I know that weekly CBC blood draws, more rounds of high dose steroids followed by prolonged tapers, and the consequent miserable side effects of prednisone were in my future. My week revolved around when my CBC would be drawn since the lab is so far away.

I felt like how my friend with infertility described her monthly mourning cycle when, yet again, her hopes were crushed as she found out she was not pregnant because her period started. My weekly blood draw, the rollercoaster of emotions from hoping my platelets stayed high, to the devastation that again they had crashed, and my doctor needed to raise the horrid prednisone dose again.

When the bandage on my elbow after my CBC blood draw started dripping blood onto the floor several minutes after it should have stopped bleeding, I guessed my platelets had crashed again, and told my doctor I bet the platelet level was 22. I was close—this time it was down to 27.

My doctor said I was no longer responding to steroids and needed to try another therapy. I submitted to four courses of rituximab (Rituxan) infusions, chemotherapy designed for blood cancers, and miraculously my body responded.

Miracle

For now.

I hope it persists, but chances are that the ITP will probably revert around a year after the $40,000 treatment. I recently graduated to once-a-month blood draws and hope to someday graduate to once-a-year.

Watch Dr. Megan share this story on the Prednisone Warriors with Dr. Megan YouTube channel:

Alternatives to Prednisone for ITP

ITP alternatives to prednisone include:

• Dexamethasone
• Nplate
• IVIG if less than 30
• Splenectomy

Natural Prednisone Alternatives for Thrombocytopenia:

Many people take prednisone for ITP (immune thromobocytopenia), like me, and want support for platelets. Some natural herbs and supplements have evidence to support platelet production. I created a Platelet Protocol with my favorite supplements for people with ITP.

For people with ITP, the following supplements have been shown to boost platelets, with the scientific study article linked to each ingredient:

• Melatonin: up to 20 mg every night. This is a pretty large dose, so you can start lower and work your way up to 20 mg as tolerated.
• Berberine: 5 mg to 500 mg taken two to three times per day
• Papaya Leaf Extract

You can use my Nutranize Zone supplement at which contains both berberine and melatonin. I created Nutranize Zone to support me if I ever needed to be on prednisone again and if my ITP came out of remission. It replenishes the nutrients prednisone steals and helps my platelet production.

How it Feels to Take Prednisone for ITP

I personally suffered many side effects to prednisone while I was taking it for ITP. This is what I went through:

After seeing this image, a Prednisone Warrior who recently started taking prednisone for ITP described it well:

Thank you especially for the picture at the beginning of your material, it is so life-like and about me, except for my glucose level, everything seems to be fine with it. I am now forced to take prednisone, but fortunately the course will end soon, and now I am already reducing the dosage. I am very surprised by the side effects that plague me – pain and swelling in the knees, swollen face and eyelids so much that it is difficult to open my eyes, palpitations, weakness in the leg muscles, weakness in the joints. Mental functions, frankly speaking, also suffer and it is difficult to control nutrition.

I always thought that I was a very stable and resilient person, but now, taking prednisone, I feel how fragile my life is and how easy it is to disrupt it. However, I try to approach the situation with humor and patience, and rather observe with interest from within what other surprises my body and prednisone will present to me.

Prednisone Warrior Idiopathic Thrombocytopenic Purpura Story

I am taking prednisone for an acute condition in February – idiopathic thrombocytopenic purpura. I have been seeing a doctor for this disease for about two years now, and usually my condition is of moderate or mild severity, but February ruined everything.

Thank you very much for your list and for your YouTube channel. This is really very valuable information, and it is actually very valuable to know that I am not alone in this problem and that there are people who are doing this.

Now I am trying to introduce more activity into my life, walking more, doing yoga, however, due to the high workload, this is not very successful. I have a suspicion that the condition for which I am forced to take prednisone is caused by chronic stress at work, since December and January were even busier and a lot of nerves were spent, and accordingly, such unpleasant side effects can come from here.

My doctor told me that the dosage at which I started taking the drug – 60 mg for a weight of 70 kg – this may be a gentle dose, but the amount of negative consequences for me seems like too much of a dose.

I would like to know your opinion, can this be true? I would also like to understand if I start “wasting” prednisone by doing physical exercise (as much as I can do), will this affect the effectiveness of the therapy, why was it prescribed to me? Will its effectiveness decrease? I am very interested in this being the only course of prednisone in my life, so as not to repeat it, since I don’t like the use and the side effects at all.

Generally anything over 20 mg is considered to be a high dose. I personally went on dexamethasone 40 mg/day for 4 days, which is the equivalent of 250 mg of prednisone, and that was extremely high. But with that said, my doctors did start me on prednisone 60 mg a day when my ITP started. The goal is to get you to as low of a dose as possible that’s still keeping your platelets up. You can exercise while on prednisone but I don’t recommend extreme sports.

Prednisone Warrior Cautionary Thrombocytopenia Story

After reading this article, another Prednisone Warrior wrote in to share a cautionary tale about ruling out potential causes of thrombocytopenia. Be sure your care team has tested you for all possible thrombocytopenia causes, because then they can treat those causes instead of intense platelet treatments for ITP. This is what she said:

While wandering around the internet I came across your prednisone page and saw that you suffered from ITP. My family member spent over a month in the hospital with ITP. His lowest platelet count was 1,000 and none of the treatments helped. We spent nearly 3 weeks asking/begging the specialists to test him for h. pylori (Helicobacter pylori). He was positive and a couple days after he started treatment for h. pylori, his platelet count started moving up. They gave him risky meds that he didn’t need, and it affected his lungs, etc. His platelet count climbed back to normal after h. pylori was eliminated. Just wanted to share his story, hoping it may be helpful.

According to UpToDate, these are potential causes of ITP that should be ruled out:

No One Likes Being Tested

Many on prednisone also have to be tested for other things.

When I was on prednisone, I had to have my blood tested at least once a week.

I didn’t look forward to driving all the way across town to get my blood drawn.

It’s possible I could have gone to a lab a little closer to home, but it was in an urgent care. I didn’t want to expose myself and my children to that many sick people every. single. week.

It seemed like I had to plan my entire life around this one weekly event.

Having enough time to drag my children into car seats, drive there, park, unload and build the stroller, load the baby’s car seat into the stroller, sit and wait in the waiting room while making sure the children didn’t bother anyone else, struggling to read them stories while not bothering others around with “moo! baa!” noises, having enough snacks to keep them happy, and getting back home in time for the older siblings…

Then trying to keep them from making other embarrassing comments about the process of getting my arm pricked.

Having the tight rubber tourniquet, the acrid smell of alcohol wipes, and a jab in the arm is unpleasant enough, but add in a small child saying, “Ow! Doesn’t that hurt, Mommy?” just adds to the unpleasantness.

I always tried to “go to my happy place” with deep breathing and visualization techniques, but the children somehow found a way to bring me right back to the present.

Needle Phobia

I know many other people cannot tolerate needles.

I was frankly surprised the number of times I read in chart notes for my day job, “patient has extreme needle phobia” so cannot use the injectable kind of medication, and must have the pill form instead.

Prednisone might be extremely unpleasant with over 150 side effects, but at least it’s a pill.

At least we don’t have to inject it!

Many complain about the nasty taste of the pill…

But it truly does save lives.

Driving across town to get my blood drawn, and taking the prednisone every day, truly saved my life.

I just wish there had been something that made the whole process a lot more pleasant.

Make Prednisone Pleasant

That’s why I invented Nutranize® Zone.

It won’t help with needle phobia…

But it sure can help you feel so much better while taking prednisone.