8 Weeks Without Medication; what happened?

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Feature image from REFINERY29

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.

ITP on Capitol Hill, by Rare Candace

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People with itp, famous people with itp, living with itp, celebrities with itp. A Guest Post by CANDACE

from RARECANDACE

This past February, I had the opportunity to advocate on behalf of ITP patients during Rare Disease Week. I traveled to Washington DC to learn about the 21st Century Cures Initiative, now House Bill 6. The legislation provides a lot of groundbreaking developments for the rare disease community, especially for those of us with Immune Thrombocytopenia. I’m a firm believer that certain things in our lives occur to inspire us to embark on great journeys. This trip was my wakeup call. I learned about a bill that would eventually be included into 21st Century Cures.

It was called the OPEN Act or Orphan Product Extensions Now Accelerating Cures and Treatments. The goal of the bill was to allow FDA-approved drugs to be repurposed for rare disease patients. This struck me, since I used Rituxan to control ITP. It worked and I have been in remission since December. Using Rituxan has saved my life and allowed me to build my “new normal” as a rare disease patient.

The OPEN Act would end “off-label” use of Rituxan for ITP patients in the US and allow more people to have access to the drug. I have met many ITP patients who were denied Rituxan by their insurance company because it was off-label and thus very, very expensive. I met with the Congressman Bilirakis who is from my home state of Florida. He introduced the OPEN Act in the Energy and Commerce Subcommittee and is a wonderful friend of the ITP community.

I told him I was living proof his bill could save and improve the lives of ITP and rare disease patients. The Congressman and his amazing staff have used my experience to push Congress to include the OPEN Act into 21st Century Cures, and were successful. None of this would have been possible without their help.

After the July 4th holiday, it is anticipated that the House of Representatives will vote on the 21st Century Cures bill. We believe it will pass with tremendous support from both parties. Our next challenge is encouraging the Senate to act with the same urgency. Time is running out and ITP patients need to have access to every treatment option available. Orrin Hatch and Amy Klobuchar furthering bi-partisan support of our efforts introduced the OPEN Act in the Senate at the end of May.

I am in contact with legislatives aides that are working diligently to get the Senate on a fast track. There is a lot of work that goes on behind the scenes and the Congressional staffers don’t receive a lot of credit. So far, I have had nothing but positive experiences working and advocating with them. They are interested in seeing that the ITP community benefits from this legislation.

Many ITP patients in other nations are probably shocked by this, and rightfully so. It is unfathomable to think that the United States would prevent rare disease patients with a life threatening blood disorder from obtaining a medication that may put their disease into a temporary remission. While Rituxan doesn’t work for all ITP patients, and doctors don’t know everything about the disease, every ITP patient has the right to try.

This is why I fight for the ITP community, I believe every ITP patient and rare disease warrior deserves the same chance I had. I also hope to have this legislation on President Obama’s desk before I need to use Rituxan again. My safe zone of 9 months is rapidly approaching, right around the time I begin law school. I am terrified to think of what will happen to me if my platelets start to fall again and I cannot have the same treatment. That’s why there is no time to waste in pushing our leaders to get this bill passed.

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

Breastfeeding on Prednisone

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Below is a collection of Information I have gathered from Blog posts, person comments and Medical articles from online.  While there seems to be no definitive Yes or No answer, as with many things to do with ITP, I did think this offered a great platform to begin your own research and make up your own mind about what is right for you and your baby. Continue reading

Robert

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My name is Robert, I am 54 years old and live in Northern Sydney. My story starts at the beginning of February 2014 when I started to notice some strange changes on my body. I have been fortunate in life as I have had very few illnesses and enjoyed good health by having a sensible diet and exercising each morning to try and remain fit. I have had my own consultancy business for over 25 years now which has always been busy but in the latter quarter of 2013 and into 2014 had become extremely busy.

Robert’s Diagnoses

It was on the first Sunday in February that my wife noticed a large bruise on my thigh. I had no idea why this was there as I had no recollection of bumping it and thought that I must have unknowingly done so whilst mowing the lawns and put it down to that. I had also noticed that there were small amounts of blood whenever I blew my nose, even just lightly, and there seemed to be small red dots on my lower legs but I convinced myself that maybe I was just imagining these as I felt perfectly normal.

Over the course of the week I noticed that I was getting more of these large bruises which I kept these hidden from my wife as she was concerned with the ill health of her Grandmother and also one of my children was not well and so I didn’t want to worry her. Continue reading