I was back at the hospital on Tuesday for an out patient appointment at the Hematology department. My platelets were at 380, so up very slightly from the previous week.
This is the high end of normal so the hope - and the expectation - is that once I'm off the Prednisone my platelets will drop a bit. Apparently it is not uncommon for them to be high-ish and then drop off somewhat as the Prednisone is tapered off.
What we don't want is for the platelets to continue to rise because then we are looking at the opposite problem thrombocytosis, the risk of blood clots. However, according to Wikipedia platelet counts over 750 are "cause for investigation" and I'm are a good way off this.
Ideally we want to be sitting somewhere in the normal range of 150-300 (though some websites put the top end of normal around 400-450).
The plan is that on Sunday I'll drop the Prednisone to 5mg and the following week take 5mg every other day (unless I begin to feel unwell as a result), ceasing to take it all together the following week. I image it will take a few weeks to get the steroids out of my system all together.
It seems incredible that after six months I'll finally be off the Prednisone and free of it's side effects: the sweats, the hot flushes, my hair falling out, the indigestion, the tingling in my feet, my "buffalo hump" and my "moon face," the facial hair, being tired in the middle of the day and wide awake at bedtime.
As of today I'm cutting down the amount of codeine I'm taking so I've been a bit more uncomfortable today, the nerve has been pinching a bit off and on, but over all it has been tolerable.
The sleeping pills have been working wonders at night, but I've decided to try to cut back on this as well. We'll see how I go. Tonight will be my first night on 1/2 a tablet.
Showing posts with label side effects. Show all posts
Showing posts with label side effects. Show all posts
Thursday, April 14, 2011
Wednesday, February 23, 2011
Toughing it out
After my trip to hospital for a transfusion of antibodies in the middle of February and my unfortunate reaction to it, I came away better but with a sore shoulder. The pain in my shoulder initially receded, but on the Tuesday night following my discharge it returned with force.
Over the next few days it continued to flare and extend into the side and back of my neck. By Friday I was taking Panadol and Codeine which helped but I still suffered break through pain, especially at night.
On Saturday night as I was getting ready for bed I noticed my shoulder and the back of my neck had begun to swell. On Sunday I noted that the swelling on the back of my neck had traveled around to the front, destroying the definition at the base of my throat, and it was spreading up my neck giving me a double chin and swelling my jawline.
The pain was continuing. I had been experiencing tingling in my right foot which had become continuous. I had occasional tingling and burning sensations in my palm. On the Sunday my face began to tingle and I experienced a patch of numbness in the area of my left cheekbone which came and went. I began to worry that whatever was causing the swelling in my neck was causing pressure to my nerves or something.
On the Monday I visited a GP. She thought that some of my symptoms could be caused by the stress of my illness and upcoming surgery and speculated that the swelling I was experiencing might be due to an allergic reaction to a medication. However, since I was taking no new medications she decided to send me in to ED to rule out any other potential issues.
So, on Monday afternoon I was back in ED. They took full bloods and x-rays of my chest and neck.
The bloods came back clear. My platelets had risen to 70!!! The x-rays were fine. After some discussion with my Hematologist they concluded that the most likely cause of the swollen collar around my shoulders, my "buffalo hump" as the doctor called it, was a reaction to the high dose of Prednisone I'm on.
Obviously my body has decided to protest the sudden jump in dosage. But I was otherwise responding well to the Prednisone, as evidenced by my blood results. My platelets had jumped from 18 to 70 in a week and my doctors are reluctant to mess about with the dosage and risk another drop in my levels. They advised that I keep up the panadol and codeine for now and they'll review the Prednisone dosage next week.
So I'm sucking it up. I'm taking painkillers when the pain flares ... and trying to avoid any and all mirrors.
Over the next few days it continued to flare and extend into the side and back of my neck. By Friday I was taking Panadol and Codeine which helped but I still suffered break through pain, especially at night.
On Saturday night as I was getting ready for bed I noticed my shoulder and the back of my neck had begun to swell. On Sunday I noted that the swelling on the back of my neck had traveled around to the front, destroying the definition at the base of my throat, and it was spreading up my neck giving me a double chin and swelling my jawline.
The pain was continuing. I had been experiencing tingling in my right foot which had become continuous. I had occasional tingling and burning sensations in my palm. On the Sunday my face began to tingle and I experienced a patch of numbness in the area of my left cheekbone which came and went. I began to worry that whatever was causing the swelling in my neck was causing pressure to my nerves or something.
On the Monday I visited a GP. She thought that some of my symptoms could be caused by the stress of my illness and upcoming surgery and speculated that the swelling I was experiencing might be due to an allergic reaction to a medication. However, since I was taking no new medications she decided to send me in to ED to rule out any other potential issues.
So, on Monday afternoon I was back in ED. They took full bloods and x-rays of my chest and neck.
The bloods came back clear. My platelets had risen to 70!!! The x-rays were fine. After some discussion with my Hematologist they concluded that the most likely cause of the swollen collar around my shoulders, my "buffalo hump" as the doctor called it, was a reaction to the high dose of Prednisone I'm on.
Obviously my body has decided to protest the sudden jump in dosage. But I was otherwise responding well to the Prednisone, as evidenced by my blood results. My platelets had jumped from 18 to 70 in a week and my doctors are reluctant to mess about with the dosage and risk another drop in my levels. They advised that I keep up the panadol and codeine for now and they'll review the Prednisone dosage next week.
So I'm sucking it up. I'm taking painkillers when the pain flares ... and trying to avoid any and all mirrors.
Sunday, February 13, 2011
Home again...
Once I came home from hospistal, rattling like a small chemist, I was off work for a few weeks.
I was exhausted, felt weak and crying and my Dr insisted I take more time to recuperate before going back to my physically demanding job and provided me with another medical certificate. I was also trying to adjust to the side effects of the Prednisone, which made me tired, emotional and hyped all at once.
A strange pressure on my diaphragm continued to cause me discomfort, a bit like having a rock sitting at the top of my stomach, and I began notice a tight sensation at my throat, like someone had their hands around my neck or were pressing at the base of my throat. I wasn't having trouble swallowing or breathing so the discomfort was thought to be due to gastric reflux, which can be a symptom of Prednisone. The hematologist advised me to take a low dose of Mylanta 4x a day and I was too take an other Omeprazole tablet before tea.
My bloods were monitored by a weekly blood test. My platelets steadily increased and had jumped as high as 211 by the 23rd of November.
Over the next few months my Dr began to wean me off the Prednisone. My platelets fluctuated slightly but held steady, usually sitting around 100.
As the dosage dropped the side effects of the drug eased and once I was taking only 10mg the pressure in my throat had disappeared completely. However, as the dosage reduced so did my platelet levels until they were hovering more around the 70 mark. My Drs weren't overly concerned though and we settled on a plan to continue to reduce the prednisone with the view to wean me off it completely, though it was going to take a while. Now that I was on 10ml the dosage would only be reduced by 1mg every four weeks.
Still, it looked like I was stable and, all things going well, I'd be able to manage living with ITP without drugs or medical intervention, for the most part.
But it wasn't to be...
The dosage of Prednisone prescribed by the hospital was 80ml, the highest recommended dose. My body was trying to recover from the shock of everything, I was struggling to get my head around the fact they my body was attacking itself (for someone who is almost never unwell this has been difficult) and to adjust to the side effects of the Prednisone.
I was tired, physically weak, emotional and hyped all at once.
My GP prescribed some sleeping tablets to be taken as needed as the Prednisone had been making it difficult for me to sleep. She also advised me to increase the Omeprazole to two tablets (80mg) due to the increasing and persistent pressure I was feeling in my diaphragm and advised me to take Mylanta when needed.
I was exhausted, felt weak and crying and my Dr insisted I take more time to recuperate before going back to my physically demanding job and provided me with another medical certificate. I was also trying to adjust to the side effects of the Prednisone, which made me tired, emotional and hyped all at once.
A strange pressure on my diaphragm continued to cause me discomfort, a bit like having a rock sitting at the top of my stomach, and I began notice a tight sensation at my throat, like someone had their hands around my neck or were pressing at the base of my throat. I wasn't having trouble swallowing or breathing so the discomfort was thought to be due to gastric reflux, which can be a symptom of Prednisone. The hematologist advised me to take a low dose of Mylanta 4x a day and I was too take an other Omeprazole tablet before tea.
My bloods were monitored by a weekly blood test. My platelets steadily increased and had jumped as high as 211 by the 23rd of November.
Over the next few months my Dr began to wean me off the Prednisone. My platelets fluctuated slightly but held steady, usually sitting around 100.
As the dosage dropped the side effects of the drug eased and once I was taking only 10mg the pressure in my throat had disappeared completely. However, as the dosage reduced so did my platelet levels until they were hovering more around the 70 mark. My Drs weren't overly concerned though and we settled on a plan to continue to reduce the prednisone with the view to wean me off it completely, though it was going to take a while. Now that I was on 10ml the dosage would only be reduced by 1mg every four weeks.
Still, it looked like I was stable and, all things going well, I'd be able to manage living with ITP without drugs or medical intervention, for the most part.
But it wasn't to be...
Subscribe to:
Posts (Atom)