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.

I was travelling a lot by plane at the moment and every time, I came down with nosebleeds. I assumed it was the pressure and the cold air in the plane. Maybe the blood vessels in my nose burst because of the pressure or something.

When I got back home, there were more bruises and my gums bled when I brushed my teeth. I had my wisdom tooth taken out a few years back and I thought it was because of that. That’s typically me. I had a rational explanation for everything.

After 2 weeks, I was back in university and one morning as I was wiping my poo, I noticed blood. Not blood mixed with poo or old brown blood, but fresh bright red blood and that continued for a few days. All this time, I had a bruise like spot in my leg, but it was all hard and red and dotty and itchy. I thought it was a bug or something, Australia is known for all its bugs! Then it all passed and I went ahead with my life again.

Then one weekend, when I was at work, I noticed bruises on my arms. Now, this was the first actual warning sign for me.  There was a normal purple bruise in my forearm and another one in the back of my palm. Now this one was different to the rest.

It was a small dark purple bruise but it radiated shades of red around it. This really concerned me as I have never had bruises in my arms before. The day after, as I was changing in front of the mirror, I noticed a bruise the size of a biscuit on my muffin top and another one on my upper thigh. I was finally starting to get concerned about all the bruises. And to add on top of that, the constant feeling of exhaustion had me worried. I mean, no matter how much I slept, the first feeling when I woke up was to go back to bed.

So, after 5 years of bruising and unexplained exhaustion, I finally decided to have my blood tests done. And thank goodness for that because the same night, my doctor called and she told me to go to the nearest emergency ward and get a blood transfusion. She said that my platelet counts were really low, 6.

I headed to the nearest hospital, where my doctor had called in informing them of my arrival all the while hoping that there must have been some kind of mistake with the lab results. I went into the ER where they ran more tests confirming that my platelets were indeed way below the average range.

The doctors present there ruled out haemophilia as a cause of the low platelets but they still had not quite figured out what was up, so they told me that they were going to keep me overnight to monitor my platelet count. They gave me prednisone. I was in the hospital for 3 days. They had diagnosed me with ITP and stuck to a treatment plan and discharged me.

The treatment: 40mg of DEXAMETHASONE for 4 days. For those of you who have not experienced “dexamethasone” or “the wrath of dex” as I like to call it, be glad because it is a very powerful corticosteroid. 40 mg of dexamethasone is equivalent to 200 mg of prednisone. Despite all the side effects like the feeling of time lapse, exhaustion and swollen lymph nodes, I took the medicine that suppressed my immune system.

I did another blood test when I finished my 4 days of dex and when the results came out, I almost did a double flip (except I did not know how to do a double flip!). My platelet count had soared from a mere 6 to a whopping 112 in 7 days so the treatment worked alright. 

Bruise, bruising, itp, itp bruises, bruising easily, hide a bruise, bruises, bruises cover up, makeup bruises, low platelet count bruise, I had a consult with my haematologist (yes, I had a haematologist by now) and he told me that there was a 50% chance that I will relapse and I will have to go on the treatment again or work out some other method of treatment.

I was to do a blood test every other week or two weeks so my doctor could keep track of my platelet count. This experience made me embrace healthy living habits.

As a typical 21 year old living in Australia all by myself, I was into the fast life: fast and easy food, runs to the train station, power naps instead of sleeping. Now, I slept for good 9 hours, slow walked to the station as I didn’t want to fall and hurt myself and the best part, I started adopting good food habits: big breakfast with lots of grains, nuts and good fats like avocado and COCONUT OIL.

I started doing a YOGA routine every day since intense exercise was out of the question, given the slow healing of my muscles. I quit my morning coffee. Actually, I quit coffee altogether although I drank tea (I have quit caffeine completely now! Yay!). I quit alcohol, even though I was only a social drinker. I had hoped that it was enough to save me from relapsing, but with every blood test, my heart sank as my platelet count depleted.

By the end of June, my count had gone down to 12 again and my doctor started me on another round of 4 days of 40 mg dexamethasone.

I responded well to the dex like last time as my count shot up to 114 and it actually stayed above 100 for a few weeks. I was ecstatic! What more could I want? I had a more-or-less stable platelet count and it seemed like it was going to be that way for now and on top of that I was flying to the States to live with my mom. But a week after I landed in California, when I went for a blood test, my platelet had dropped down to 40.

I assumed it was because I wasn’t eating properly as I was living off junk food at the hotel that I was staying in. I was sad and upset and angry. I decided that I did not want to take steroids anymore because I did not feel like myself when I was on the dex.

Someone suggested that I try Chinese herbal medicine so I went on a journey from Santa Clara to Oakland and got a bag full of herbs that I was supposed to take 3 days a week for 4 weeks. The struggle of drinking herbs boiled for 3 hours with a whole “black” chicken cannot be defined. It tasted horrible, bitter and oily, but I was determined because I wanted to get better so I drank it for as long as was required. I was getting a blood test done every two weeks and at the end of the herbs, my platelet count had actually dropped down to 12 again.

I got referred to a haematologist in San Jose, who said that my ITP was incurable. I had figured that much by now. He also said that the dex treatment was probably not a good idea anymore now that we had established the chronic side of my ITP so he suggested that I start on the regular use of prednisone.

I did not have a choice but to comply. After all, I did not want to die from a brain bleed if I hit my head or something like that. Actually, I did not want to die. Period!

He also started me on multivitamins to compensate for the nutrients that my body requires to fight the battle within, slow-release iron tablets as my haemoglobin levels were low as well and CALCIUM and vitamin D tablets to counteract the effects of the steroids on bone density. For the PREDNISONE treatment itself, I was to take 30 mg for 7 days, 20 mg for 3 days and then 10 mg for 3 days to bring my platelet count out of the danger zone.

After that I was to take 5 mg every other day so I could keep my platelet count at a safe level. This was to continue for life, along with the multivitamins and the calcium. The iron I could ditch once I started menopause, but that is a long way from now. So in this tug of war going on inside my body between my rogue immune system and my platelets, my immune system sort of won.

Steroids are not something I want to have in my system even one day, let alone a lifetime. All the countless and annoying side effects make it anything but fun. The overheating of my body even though its 15 degrees outside or the growing appetite that never seems to go away or the fact that my mood changes faster than a bullet is not something I want to put up with. But sometimes you have to make exceptions when it is the question of life or death.

ITP has already lowered my life expectancy by 20 years so there was no way I wanted to add more years to that by being reckless. And yes, sure ITP restricts me from participating in contact sports and getting piercings or tattoos and I have to consult my haematologist before I take any otc medications or get any medical procedure done that puts me at a risk of bleeding to death (so, pretty much everything) but, it is not entirely bad.

I am living an almost healthy life with the help of the steroids that I loathed so much, eating good food, limiting my workout to yoga, sleeping good 8 hours and reading, heaps of reading. To be honest, I think this is the healthiest I have ever been, mentally and emotionally, though the same cannot be said of my “always exhausted” physical self.

I guess I cannot really call this a success story because steroids won, even though I didn’t want it to. But I am alive and living a good life so I shouldn’t really be complaining. Moreover, from my very first diagnosis, I have had tremendous support from my family and my friends. What more could I ask for? Thank you to everyone who stuck with me through it all.

(I hope some of you readers could relate to my experiences. Surely, it is not a fun journey when you have a disorder that no one can see, but if you want to share your story or of someone you know who has ITP, you know I will understand. Please feel free to contact me : sameenakayastha@yahoo.com)

Sameena K.

by Meg

Meghan Brewster is a writer and blogger. She is an ITP patient and launched ITP&Me in 2011. She is a coffee lover and a try hard dancer. @meghan_brewster

4 thoughts on “Sameena

  1. rashmilaps@gmail.com'
    Rashmila says:

    Dear Sameena, shocked to read about you. While going through your story, i just wished this to be mere a story, but it is real. It’s been ages we have seen but still you are my little daughter who has grown into brave determined woman. So proud of you ‘Nanu’ and all the prayers from your ‘Aani’. God bless you.

  2. bmkayastha@gmail.com'
    Thulo Papa says:

    Dear Sameena,
    I am amazed at how you could tell your story so beautifully and express your sorrows and inner fears so vividly.I can very much understand your inner sufferings and helplessness. You have become a very brave girl fighting this not-so-dreadful illness all alone in Australia and now at San Jose with the support of your Mom and younger sis. I understand how you long to meet your Papa sooner than the circumstances permit it.
    There are so many auto immune conditions that are more crippling and more refractory to treatment. By this time You might have read about the SLE (systemic lupus erythematosus), systemic sclerosis and many other conditions which need more potent medications and still continue to manifest various complications related to the disease and therapy. In a dermatological condition called pemphigus vulgaris, where one suffers from widespread flaccid blisters involving whole body including the oral and genital mucous membranes, prednisolone at the dose range as high as 120-180 mg per day is some times prescribed not for a day or two but for several weeks’ duration; then again the dose is very slowly reduced- at the rate of 5 mg/week, such that a minimum maintenance dose is achieved only after several months of high dose prednisolone. Now the dermatologists have come up with a novel therapeutic approach called the Dexamethasone Cyclophosphamide Pulse therapy (DCP Therapy)where they prescribe a very high dose of Dexamethasone along with cyclophosphamide in several pulses that lasts for several months.
    I just want to emphasize that the condition you are suffering from and the therapy you are currently being subjected to is not so dreadful that you need a “Period !” (of silent weeping) to complete your story of fight against ITP. I know you are a brave girl and you surely are going to win the battle against ITP. There are so many treatment options available at least in the US, that will benefit you and many others with ITP.
    With luv and blessings.
    Thulo Papa

    • Meg says:

      Thulo Papa, While we appreciate your reading and engaging with this website, perhaps we have not been clear enough about what this website is about. This is not a place where we make judgement calls on what another person is going through. This is not a place where we compare one person’s illness to another’s to rate and compare suffering. This is a website for people with ITP to discuss openly about this very serious and yes ‘dreadful’ condition.
      Please in the future if you wish to read and comment on more articles from ITP & me, we ask that you refrain from defining and dictating to others how they are meant to feel and what their response to ITP is meant to look like. Kind regards, Meg

  3. saskiatomkins@hotmail.com'
    Saskia says:

    Hi Sameena, Thankyou for writing about your experience – it’s the first one I’ve read on this site. I was diagnosed last month aged 42 and had very similar beginning to you, mega bruises that I ignored and unbelievable exhaustion with really achy joints. I got tested for rheumatoid arthritis (because I’m a musician and that would be really bad!), and a whole whack of other stuff. I’m currently on my 2nd round of the wrath of dex ( I love that!), though I persuaded my Haematologist to try 1/2 dose so I can still function – vaguely. I find your story really helpful and inspiring that there is life after diagnosis. Keep on trucking!

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