8 Weeks Without Medication; what happened?

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It’s been 8 weeks!

If you haven’t heard what I’ve been up to, catch up with the beginning of the story here ‘I’VE DONE SOMETHING BAD‘ first.

I have been taking prednisone every day* for the last 8 years. And for the last 8 weeks, I haven’t had any… Boom. Cold turkey.

Boom! Cold turkey! I just stopped!

I didn’t mean to stop, but once I realised I hadn’t had anything for a week, I decided to take it a little further. I felt excited. I felt excited to be able to try something new with my body, to see what happened. I was seduced by the hope of everything being ok. I felt like something exciting is about to happen.

I had a few bruises on my legs but I didn’t really think about them. I was a little scared but mostly I believed that this would secretly be the end. I believed that I would just suddenly stop taking my medication and nothing bad would happen and everyone would tell me I was a medical miracle and I would be interviewed for the next edition of SPONTANEOUS REMISSION.

Here is what really happened.

My platelets slowly fell. In the first few weeks, I was certain that I was going to be fine. My platelets slipped but only by a couple. I thought I might have magically cured myself. I had heard that pregnancy can reek havoc on your hormones and I thought ‘wow, maybe being pregnant actually rebooted my immune system, amazing.’

In the first few weeks, I was certain that I was going to be fine. My platelets slipped but only by a couple. I thought I might have magically cured myself. I had heard that pregnancy can reek havoc on your hormones and I thought ‘wow, maybe being pregnant actually rebooted my immune system, amazing.’

Then they crashed hard.

My platelets fell quickly, down below 20. My ankles started to ache, my hands were stiff and sore, my neck felt sore all the time, and I was bruising everywhere. I feel sad and lacked energy. I ate too much food because all I wanted to do was lay around and feel sorry for myself.

I was struggling to manage the physical symptoms of an ITP inflammation as well as the emotional disappointment of having failed to magically cure myself.

I became rundown. I was sad all the time. I was tired and moody and kept hurting myself. I was stressed and anxious as my adrenal glands were flipping out and withdrawing from the drug. I was a mess.

I am so sad to say that it did not work. I wanted it so badly, but it all ended in nothing.

I’m back on Prednisone. After a high dose initially and rest to get over bronchitis, I am back to taking a moderate amount.

I feel like I failed.

*barring the occasional hangover vomit and forgetful weekend.

 

I’ve Done Something Bad…

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Feature image SEANMUNDY

I’ve done something really bad.

But it is done, so I may as well tell you what I did.

It all started two weeks ago when I dropped my son off at daycare. I left him in the capable arms of a kind woman.This kind woman cares for my son every Wednesday, and every Wednesday when I go to pick him up, I’m reassured he had the happiest, most wonderful day ever.

But two weeks ago, when I picked him up from daycare, my son was sick.

In what could only be described as a Poonami (Thank you Mander!) I spent the next week cleaning sheets, changing nappies, wiping up vomit and holding him close as he struggled with a tummy bug. He was sad, a little clingy and lost weight.

What I didn’t do, however, was take any of my medication.

A whole week. I just forgot.

I’ve been taking it every day for more than 8 years, and then suddenly I forgot. My body is addicted to it. My doctors are petrified about what would happen if I were to stop suddenly.

And then I did.

When I realized what I’d done I rushed to my medication and grabbed a glass of water, ready to take the tablet. Then something stopped me. What if I didn’t take it? What if I went just a little longer?

I had come this far, what was the harm in pushing it out a little longer?

I felt ok, I hadn’t had any terrible bruising. I wasn’t bleeding. I didn’t seem to be in adrenal failure. I was doing ok. I held the little tablet in my hand and wondered…

I knew my body needed a break from the medication, everyone agreed with that. But everyone was concerned about what would happen. It was too risky, my doctors told me. I also knew pregnancy and hormonal changes can have a huge effect on autoimmune disorders.

I decided I would wait another week. I needed a blood test and a plan. I went to the blood test centre (What are they called? Collection place?) to check my platelets.

In two weeks, without taking anything, my platelets have fallen from 52 to 41. Not bad really…

Tomorrow I have an appointment with my doctor to confess what I’ve done and have another platelet count. I’ll let you know how it goes.

Sameena

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THE UNSUCCESSFUL SUCCESS STORY OF AN ITP PATIENT

I tried to stay away from regular use of steroids as much as possible. But like with any chronic disorder, medication is inevitable. And to think that 8 months ago, I was going about my normal life thinking I was healthy as a horse and all the while my immune system was planning an attack on my own platelets.

Although it is not like it sprang on me all of a sudden. Come to think of it, there were some signs of platelet disorder way early.

low Platelets, platelets low, platelet count, what is itp, low platelet counts, itp blood, itp platelets, itp blood disease, itp autoimmune disease, itp blogs, blogs about itp, bleeding disorderI guess it all started with the bruises. For 5 years, I thought they were just bruises. Random. I mean, you get a little round purple bruise on your leg every month or so, you don’t really worry about it. You give some lame explanation like: “maybe it’s the hormones from my menstrual cycle” or “maybe I just bumped into something and did not realise”.

About a year and a half ago, I noticed that the bruises were getting bigger and more frequent, which scared me a little but the bruises sort of faded away in a few days. Continue reading

Book Review; Heartaches and Miracles

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Feature image from ITPANDME and COVER

HEARTACHES AND MIRACLES is a recount of Greta Burroughs’s journey with ITP.  It begins with her initial diagnoses of ITP and takes the reader through each of her remissions, each of her treatments and each of her surgeries.  This is not your typical ITP story.

Many of you are probably already familiar with Greta Burroughs.  She is the founder of ITP…IN OUR WORDS, a blog for ITP patients.  This book is her story.  It’s honest and personal, it’s also punctuated with interviews and quotes from other ITP patients which make for a refreshing change of pace between the chapters.

There is a welcome comradery in HEARTACHES AND MIRACLES that I have not often experienced having a rare disease.  I felt like I had actually found somewhere I belonged.

The book gets off to a slow start, beginning with a dedication, a foreward, an introduction and then acknowledgments.  By this time, I was keen to get into the action and wondered if these might not have been better placed at the end of the book. Continue reading

Cheryl

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I would like to add to Robert’s story if I may, and tell you about my experience with ITP.

I lived in Australia at the time but was on holiday in New Zealand when I was diagnosed. That was two years ago in December 2012. I was 57 and had a platelet level of 4,000. Before this time I had previously been fit and healthy, although recently under a lot of stress. Over the course of the first year I was on the same roller coaster Robert describes. I had all the tests and infusions. My platelets went up and down, and the dose of Prednisone increased or decreased to try and manage it.

After being on high doses of prednisone for so long the side effects were awful. I didn’t recognise the big moon face staring back at me from the mirror, and my brain was in a fog. Because of this fog I went along with what the doctors were telling me. They had said at the beginning my best option was to have my spleen removed. I resisted for as long as I could, but in October 2013 I finally gave in because I had to get off the prednisone. After the operation my platelets went from 6,000 to 665,000. Things looked promising and I started to reduce the dose of prednisone very slowly. But less than four weeks later they had plunged to 9,000. The splenectomy was a failure and I had to increase the prednisone again.

I didn’t want to accept what everyone says about ITP; that there is no known cause and no known cure. With my platelets hovering between 13,000 and 73,000, over the next two months I wracked my brains to try and think what might have happened in my body to cause my immune system to go haywire. It took all of that time to realise it was actually a chain of events that triggered it. I believe it started with my overuse of Nurofen which I was taking for chronic back pain. Nurofen contains the analgesic ibuprofen, an NSAID. Nurofen is known to damage the intestinal lining if overused, causing a permeable gut. I only discovered this after I had a bleed. I stopped taking it immediately but by then the damage had been done.

With toxins now leaking from my gut into my body, my immune system went into overdrive. This led to an acute sensitivity to salicylates, a naturally occurring chemical found in most foods which I’d had in a mild form all my life without realising it. Now I had IBS in a big way but still didn’t know it was salicylate intolerance. It started very suddenly and at first I thought it was gastro. But it kept happening after nearly everything I ate. I was losing weight fast. My doctor sent me for lots of tests which all came back negative. He didn’t know about salicylates so just said to take antacid when I needed it. Continue reading

Breastfeeding While Taking Immune Suppresants

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Are you pregnant or trying to get pregnant while taking the immune suppressant steroid Prednisone? There is so much you need to be thinking about right now, wondering if you will able to breastfeed after the baby is born is just another consideration that needs to be investigated.

Question

Is it safe to breastfeed my baby while I am taking Prednisone?

1. The Quick Answer – Yes.

2. The Real Answer – There is a very big difference between a drug being ‘SAFE’ and and drug being ‘GOOD’ for you and your baby.  Just because a drug is classified as safe, should I still take it?  There is a very big difference between something being proven to be good for you and scientists not being able to prove it’s bad for you.

Just because it is ‘safe’ should I do it? – 

Though many drugs are quite safe for a mother to take while nursing her child there are several agents for which ‘safety’ during breast-feeding is not well-defined and may be a risk to the infant.  What is safe for one person may not be safe for another.  Prednisone, according to every medical doctor I have talked to, is safe to consume while pregnant and breast feeding.  There is evidence that a small amount of the drug can pass through the breast milk and into the blood stream of the feeding child, an amount small enough for doctors to consider the drug safe.  However, I found the contributions of MotherRisk.org quite relevant to this discussion.  ‘Even if only a small amount of the drug were to be excreted into the milk, the inherently toxic nature of these medications warrants caution with their use.’

Continue reading