Hmm... Where to start, where to start.
Well three days after my last post I went in for my 6 weekly Infliximab infusion. As I have had a mild reaction to this drug in the past I was given an injection of Hydrocortisone in an attempt to prevent a recurrence. Unfortunately this didn't work as well as they had hoped, and I had a mild reaction within the first 10 minutes of commencing the Infliximab infusion. I was given another Hydrocortisone injection as well as some oral Phenergan and the infusion continued without further problems to it's conclusion.
The next few weeks were relatively uneventful.Mostly pottering about the house, painting the new patio area and repairing any niggling little problems which arose from time to time.
About two weeks ago things took a little turn for the worse. The joint pain began to flare and I began taking more Oxycodone to get by. As I was limited to 3 tablets a day and these were wearing off within 2-3 hours, I found that I was having to pace intake as much as possible or suffer the possibility an evening in agony. Still, we managed...
Which brings us to today and yet another Infliximab infusion date.
Today's started differently. For a start I was weighed and discovered I have been loosing weight again. Down to 52.1kg from 59 a month ago. I was given a pre-medication infusion of 500 ml of Methylprednisolone which has prevented any negative reactions to the Infliximab in the past. (It also explains why it is now 1am in the morning and I am unable to sleep!). The Infliximab infusion was started and things went normally until about 45 minutes in. Kerry was the first to notice that I had turned a bright red colour and my eyes were bulging. When she asked me if I felt alright, I suggested that she should probably get the clinic nurse, QUICKLY. This was without a doubt the strongest reaction I have ever had to the Infliximab; along with my attractive new ruddy complexion and bug eyes, my blood pressure dropped to 63 / 35 and my pulse increased to 212 bpm. Not good form...
Peter was called and instructed the remainder of the Infliximab not be Infused, then headed off to consider our options. When he returned, it was decided that I would be swapped over to Rituximab for future infusions.
As a result of my little hissy fit, I have only managed to get a quarter of my Immunosuppressant therapy and I am not scheduled to begin Rituximab until the second week of January. I do however, have a clinic appointment with Peter in the middle of this period, so we will be monitoring any possible flares.
In terms of pain management, Peter has lifted my daily limit of Oxycodone to one every 3 hours (as needed) to a maximum of 8 a day. Hopefully I shall not reach that number...
Oh, I also spoke to Peter about Cellcept and learnt that the two drugs are interchangeable, the only advantage of Cellcept being a lower chance of Renal dysfunction which to date (this time) I have not had a problem with...
Well, that's pretty much news for the time being, I'm off to have a mug of hot cocoa and a Tamazepam. Hopefully sleep won't be far behind.
Cheers,
Jason.
Friday, November 19, 2010
Monday, October 4, 2010
I know, I know...
I know I said I was going to post almost two months ago, but I've been kind of busy with the house and stuff...
Kerry and I decided that we were sick of the colour the interior of the house has been since we purchased it in '99 and wanted a facelift. To this end we have spent the last three weeks redecorating. I have removed all of the photos from the walls and filled in all of the holes where they used to hang. Kerry then sugar soaped them and together we got stuck into the painting. I have done the majority of the climbing ladders, which has proven not to be a good thing, but anyway, we are almost done now, and the results are very pleasing...
Medically...
Well, 6 weeks ago I presented for my scheduled Infliximab infusion and was instructed to resume my Cyclosporin. I was also given a 300mg infusion of Methylprednisolone. Apparently all of the tests they had been performing since I was in hospital came back negative and it was concluded that I didn't have an infection and that the disease was active again. Funny that, I did try to tell them, I think I know my body and it's disease pretty well by now... My oral Prednisolone dose was also raised from 5mg per day to 50!!! With that, it was good-bye to sleeping properly and hello to constant bouts of insomnia...
I must mention at this point that my regular specialist Professor Peter Keary, had been off work during the entire time of my admission as he had surgery of his own and returned two days after I was instructed to resume my immuno-suppressants.
Speaking of Peter, I presented for a clinic appointment two weeks ago and had to relay to him what had happened in his absence. The records taken during my last admission are missing from my file for some reason. Needless to say, Peter was not in the least bit impressed, however he did admit that none of the other specialists had ever likely seen or had any experience with Anti-Synthetase Syndrome and were flying blind in regards to treatment. I wish they had listened to me a little more...
As far as the disease is concerned, the drugs don't seem to be keeping it in check much any-more. Muscle mass is still decreasing which is making it difficult to get accurate readings of the diseases progression. One of the main blood indicators is Creatine Kinase (CK) which indicates the decay of muscular tissue, and I am now presenting normal CK readings due to the small amount of muscle tissue left. Shortness of breath on exertion has increased, which was to be expected as there has been an increase of scar tissue on my latest CT scan. Severe muscular pain is also a pretty constant part of life, so Oxycodone has become my best friend. Peter informs me that we are approaching the final stages of the disease...
A quick education on Oxycodone for anyone interested...
Oxycodone is an Opioid Analgesic. It is in the same family as Codine, Vicodin and Morphine. In terms of strength and effectiveness, Oxycodone is roughly twice as strong as Vicodin, but half the strength of Morphine. It is also addictive if abused and along with relieving severe pain, gives a feeling of euphoria and general all over relaxation.
Well, that's about it for this update. I have another infusion this Thursday and will post again if there is any news...
Cheers,
Jason
Kerry and I decided that we were sick of the colour the interior of the house has been since we purchased it in '99 and wanted a facelift. To this end we have spent the last three weeks redecorating. I have removed all of the photos from the walls and filled in all of the holes where they used to hang. Kerry then sugar soaped them and together we got stuck into the painting. I have done the majority of the climbing ladders, which has proven not to be a good thing, but anyway, we are almost done now, and the results are very pleasing...
Medically...
Well, 6 weeks ago I presented for my scheduled Infliximab infusion and was instructed to resume my Cyclosporin. I was also given a 300mg infusion of Methylprednisolone. Apparently all of the tests they had been performing since I was in hospital came back negative and it was concluded that I didn't have an infection and that the disease was active again. Funny that, I did try to tell them, I think I know my body and it's disease pretty well by now... My oral Prednisolone dose was also raised from 5mg per day to 50!!! With that, it was good-bye to sleeping properly and hello to constant bouts of insomnia...
I must mention at this point that my regular specialist Professor Peter Keary, had been off work during the entire time of my admission as he had surgery of his own and returned two days after I was instructed to resume my immuno-suppressants.
Speaking of Peter, I presented for a clinic appointment two weeks ago and had to relay to him what had happened in his absence. The records taken during my last admission are missing from my file for some reason. Needless to say, Peter was not in the least bit impressed, however he did admit that none of the other specialists had ever likely seen or had any experience with Anti-Synthetase Syndrome and were flying blind in regards to treatment. I wish they had listened to me a little more...
As far as the disease is concerned, the drugs don't seem to be keeping it in check much any-more. Muscle mass is still decreasing which is making it difficult to get accurate readings of the diseases progression. One of the main blood indicators is Creatine Kinase (CK) which indicates the decay of muscular tissue, and I am now presenting normal CK readings due to the small amount of muscle tissue left. Shortness of breath on exertion has increased, which was to be expected as there has been an increase of scar tissue on my latest CT scan. Severe muscular pain is also a pretty constant part of life, so Oxycodone has become my best friend. Peter informs me that we are approaching the final stages of the disease...
A quick education on Oxycodone for anyone interested...
Oxycodone is an Opioid Analgesic. It is in the same family as Codine, Vicodin and Morphine. In terms of strength and effectiveness, Oxycodone is roughly twice as strong as Vicodin, but half the strength of Morphine. It is also addictive if abused and along with relieving severe pain, gives a feeling of euphoria and general all over relaxation.
Well, that's about it for this update. I have another infusion this Thursday and will post again if there is any news...
Cheers,
Jason
Friday, August 13, 2010
This is getting rediculous...
Seriously, I go to Townsville for my regularly scheduled Infliximab infusion and what happens? I wind up in hospital again; this time for two weeks... Arrrrrrrrrrrrgh...
I had been feeling pretty run down and febrile again in the couple of weeks leading up to the appointment, so when I presented, Dr. Michelle decided that it was best to admit me straight up. It's probably a good thing that I sort of had a bag packed. I had been in Townsville for a couple of days leading up to the appointment to be a case study in the Royal Australian College of Physicians candidates exams.
Anyway, as soon as the bed assignment was made, I was put on in intravenous infusion of broad spectrum antibiotics. Apparently the thought was that I may have an infection which was causing the high temperatures I was experiencing. I on the other hand, was entirely convinced that the lower doses of Prednisilone and Cyclosporin that I had been taking for the last 6 weeks were simply not keeping the disease in check.
Blood tests for CRP, ESR and CK levels, as well as Blood Cultures were about to become a daily part of life...
Day two of the admission found me in Medical Imaging getting ultrasound scans of my chest cavity and my thyroid. It was discovered that there were some nodules growing on the thyroid which were of an unknown origin.
Day three saw a Chest X-Ray done, as well as a high resolution CT dye scan of my neck and stomach. Not sure why that one was done, Hmm... I was also taken OFF my immuno-suppressants just in case my body was indeed fighting an infection.
Day four came and it was off to Nuclear Medicine to have a keyhole dye scan of my Thyroid. This showed that the nodes on my thyroid were not actually productive cells and may be tumorous. As if I don't have enough problems...
Not much happened for a few days after that. Hospital can be a very boring place to be if you are feeling reasonably well and are mobile. I'm just glad that I had my Laptop and a wireless broadband connection to stop me from going over the edge.
Kerry and the girls came up over the first weekend to visit. It was pretty much the highlight of my week to see my family. When home time arrived on Sunday, it was quite upsetting for all involved.
The following Monday and Tuesday came and went without any movement on the medical front. The muscle pains had increased significantly to the point that Tramadol was not having any effect, so I was moved on to Oxycodone which works much better thank goodness.
During week two I had visits from the Haematology and Infectious Diseases people who wanted to look for Lymphoma and HIV among other things. I can now clearly say that I am HIV negative. (As if there was ever a doubt, pfft...) They also managed to cram in a Gallium scan looking for the possible Lymphoma and other infections. Yes, apparently after over a week of blood cultures where nothing had grown, we were STILL looking for the ever elusive infection; Hmm, go figure...
Anyway, after all of this I was discharged on Monday, only to have to return on Tuesday for a biopsy on my thyroid. We still don't have any results from the Gallium scan or the biopsy, however it is my suspicion that neither will show whatever they are looking for, and FINALLY the conclusion can be made that the disease is in fact active again.
So, here I am back home. My Prednisolone and Cyclosporin are being withheld until the results of the tests turn up, and it's now been nearly nine weeks since I have had an Infliximab infusion. My condition seems to be deteriorating little by little each day (I'm feeling shades of '07 again) however the Endone (Oxycodone) is making it bearable. Hopefully this time next week, I'll be back on my regular drugs again, will have had my Infliximab and will be on the road to what passes as a normal life for me.
Will let you know next week...
Cheers,
Jason
I had been feeling pretty run down and febrile again in the couple of weeks leading up to the appointment, so when I presented, Dr. Michelle decided that it was best to admit me straight up. It's probably a good thing that I sort of had a bag packed. I had been in Townsville for a couple of days leading up to the appointment to be a case study in the Royal Australian College of Physicians candidates exams.
Anyway, as soon as the bed assignment was made, I was put on in intravenous infusion of broad spectrum antibiotics. Apparently the thought was that I may have an infection which was causing the high temperatures I was experiencing. I on the other hand, was entirely convinced that the lower doses of Prednisilone and Cyclosporin that I had been taking for the last 6 weeks were simply not keeping the disease in check.
Blood tests for CRP, ESR and CK levels, as well as Blood Cultures were about to become a daily part of life...
Day two of the admission found me in Medical Imaging getting ultrasound scans of my chest cavity and my thyroid. It was discovered that there were some nodules growing on the thyroid which were of an unknown origin.
Day three saw a Chest X-Ray done, as well as a high resolution CT dye scan of my neck and stomach. Not sure why that one was done, Hmm... I was also taken OFF my immuno-suppressants just in case my body was indeed fighting an infection.
Day four came and it was off to Nuclear Medicine to have a keyhole dye scan of my Thyroid. This showed that the nodes on my thyroid were not actually productive cells and may be tumorous. As if I don't have enough problems...
Not much happened for a few days after that. Hospital can be a very boring place to be if you are feeling reasonably well and are mobile. I'm just glad that I had my Laptop and a wireless broadband connection to stop me from going over the edge.
Kerry and the girls came up over the first weekend to visit. It was pretty much the highlight of my week to see my family. When home time arrived on Sunday, it was quite upsetting for all involved.
The following Monday and Tuesday came and went without any movement on the medical front. The muscle pains had increased significantly to the point that Tramadol was not having any effect, so I was moved on to Oxycodone which works much better thank goodness.
During week two I had visits from the Haematology and Infectious Diseases people who wanted to look for Lymphoma and HIV among other things. I can now clearly say that I am HIV negative. (As if there was ever a doubt, pfft...) They also managed to cram in a Gallium scan looking for the possible Lymphoma and other infections. Yes, apparently after over a week of blood cultures where nothing had grown, we were STILL looking for the ever elusive infection; Hmm, go figure...
Anyway, after all of this I was discharged on Monday, only to have to return on Tuesday for a biopsy on my thyroid. We still don't have any results from the Gallium scan or the biopsy, however it is my suspicion that neither will show whatever they are looking for, and FINALLY the conclusion can be made that the disease is in fact active again.
So, here I am back home. My Prednisolone and Cyclosporin are being withheld until the results of the tests turn up, and it's now been nearly nine weeks since I have had an Infliximab infusion. My condition seems to be deteriorating little by little each day (I'm feeling shades of '07 again) however the Endone (Oxycodone) is making it bearable. Hopefully this time next week, I'll be back on my regular drugs again, will have had my Infliximab and will be on the road to what passes as a normal life for me.
Will let you know next week...
Cheers,
Jason
Thursday, June 17, 2010
Another week, another...
Four days spent in The Townsville Hospital. Seriously, it's becoming like a second home to me of late...
The cause of this admission was mostly due to questions I was asked by the new Rheumatology Registrar (Michelle) while I was getting my monthly dose of Intragam. I mentioned that I had been feeling a little weaker of late and that I had not had a follow up appointment for over four months. This seemed to concern her and she immediately decided to get Professor Peter Keary (my treating specialist) involved. As you can probably guess, this resulted in my having to return the following week for a little holiday (ugh)...
The admission consisted of a battery of tests, including a Chest X-Ray, a Chest CT, a Full Body CT using fluorescent dye, Gas exchange respiratory tests, etcetera, etcetera, etcetera... I will also be having other tests performed as an outpatient over the next few weeks such as an Endoscopy, a Gastric Endoscopy, a Muscle Conductivity Test, another Respiratory Gas exchange test, concluding with yet another infusion. Oh, my infusions have been changed back to Infliximab again, and although I have a reaction to this drug, I am being administered a drug to counteract it prior to infusion now...
At the end of my time, it was concluded that the disease is active yet again; most likely due to the fact that I have been engaging in some pretty harsh (for me) physical activity over few weeks prior and that I had been going to Physiotherapy prior to that. Apparently (according to Peter) Physiotherapy, while helping to build up the bodies of normal people, only makes my situation worse by causing the muscles to produce more of the enzyme that the Jo-1 antibodies attack which in turn stimulates the production of more Jo-1. It's a bit of a vicious circle really...
Perhaps I should just stay in bed!!!
Well, it's almost time for me to start tea, so I'll keep you all posted...
Cheers,
Jason...
The cause of this admission was mostly due to questions I was asked by the new Rheumatology Registrar (Michelle) while I was getting my monthly dose of Intragam. I mentioned that I had been feeling a little weaker of late and that I had not had a follow up appointment for over four months. This seemed to concern her and she immediately decided to get Professor Peter Keary (my treating specialist) involved. As you can probably guess, this resulted in my having to return the following week for a little holiday (ugh)...
The admission consisted of a battery of tests, including a Chest X-Ray, a Chest CT, a Full Body CT using fluorescent dye, Gas exchange respiratory tests, etcetera, etcetera, etcetera... I will also be having other tests performed as an outpatient over the next few weeks such as an Endoscopy, a Gastric Endoscopy, a Muscle Conductivity Test, another Respiratory Gas exchange test, concluding with yet another infusion. Oh, my infusions have been changed back to Infliximab again, and although I have a reaction to this drug, I am being administered a drug to counteract it prior to infusion now...
At the end of my time, it was concluded that the disease is active yet again; most likely due to the fact that I have been engaging in some pretty harsh (for me) physical activity over few weeks prior and that I had been going to Physiotherapy prior to that. Apparently (according to Peter) Physiotherapy, while helping to build up the bodies of normal people, only makes my situation worse by causing the muscles to produce more of the enzyme that the Jo-1 antibodies attack which in turn stimulates the production of more Jo-1. It's a bit of a vicious circle really...
Perhaps I should just stay in bed!!!
Well, it's almost time for me to start tea, so I'll keep you all posted...
Cheers,
Jason...
Wednesday, May 26, 2010
And I thought...
It was a long time between the last two posts...
For those of you who don't know, I have been been paid out and am now on a Disability Support Pension. The first order of business after receiving my payout was to pay off our house. I actually did this the day the money arrived...
Next on the agenda was another mode of transport. Getting to and from my appointments in Townsville was proving to be a pain; with only one vehicle in the family picking the girls up from school required help from other people as I would have the car... This simply would not do of course and to this end I purchased a 2010 model Honda VTR250. Sure, I'm the only one who can ride it so it's my primary mode of transport when it comes to medical appointments. It also has the added bonus, according to Kerry of cheering me up when I ride it (apparently).
The spending sort of quietened down a little after that, until recently. We are now getting a full length patio (screened of course), installed on the back of the house at ground level. This is starting in two weeks and should be completed by mid-July. It will be a nice addition to our home and will give us a cool retreat in the summer months.
Medically, nothing much is happening. I was supposed to have a review last month, however apparently the clinics are being split and I so have fallen through the cracks. The hospital are hoping to have this rectified within the next few weeks. It will be interesting to see, as I am starting to feel weaker and even Kerry has commented that I am losing muscle mass from my thighs again...
I am still receiving monthly infusions of Intragam (freaking wonderful) with three more to go before the next infusion review. It would be nice if this came to an end, however I am not expecting it. Instead I am sort of expecting Dr. Keary to put me back on Infliximab which I am definitely not looking forward to. It is a significantly form of chemotherapy, and one which I have had an adverse reaction to in the past. Oh well, that which does not kill us...
Well, I had better sign of for now and will hopefully update a little more regularly in the future...
Cheers,
Jason...
For those of you who don't know, I have been been paid out and am now on a Disability Support Pension. The first order of business after receiving my payout was to pay off our house. I actually did this the day the money arrived...
Next on the agenda was another mode of transport. Getting to and from my appointments in Townsville was proving to be a pain; with only one vehicle in the family picking the girls up from school required help from other people as I would have the car... This simply would not do of course and to this end I purchased a 2010 model Honda VTR250. Sure, I'm the only one who can ride it so it's my primary mode of transport when it comes to medical appointments. It also has the added bonus, according to Kerry of cheering me up when I ride it (apparently).
The spending sort of quietened down a little after that, until recently. We are now getting a full length patio (screened of course), installed on the back of the house at ground level. This is starting in two weeks and should be completed by mid-July. It will be a nice addition to our home and will give us a cool retreat in the summer months.
Medically, nothing much is happening. I was supposed to have a review last month, however apparently the clinics are being split and I so have fallen through the cracks. The hospital are hoping to have this rectified within the next few weeks. It will be interesting to see, as I am starting to feel weaker and even Kerry has commented that I am losing muscle mass from my thighs again...
I am still receiving monthly infusions of Intragam (freaking wonderful) with three more to go before the next infusion review. It would be nice if this came to an end, however I am not expecting it. Instead I am sort of expecting Dr. Keary to put me back on Infliximab which I am definitely not looking forward to. It is a significantly form of chemotherapy, and one which I have had an adverse reaction to in the past. Oh well, that which does not kill us...
Well, I had better sign of for now and will hopefully update a little more regularly in the future...
Cheers,
Jason...
Friday, January 15, 2010
I'm still here...
Sorry, I know it's been a while, but we've been quite busy. (Read: I've been quite slack)
Physio is going well, well I suppose... I'm as sore as heck by the end of it, but I suppose their job is to try to stop the muscle degradation as much as possible so there is no use in complaining.
We had Christmas Day here. My Dad and Half-Brother Darren came up from Proserpine; Megan (half-sister even though you wouldn't know) and her Partner Jayson came down from Townsville and Kerry's parents came over from Ayr. A lovely meal was had by all and at the end of the day, Megan and Jayson decided to take Madison and Charlotte back to Townsville with them as I had an infusion on the following Wednesday and we could collect them then...
On the medical front, I am now experiencing constant neck pain, which means that that the flexors have decided to join the rest. Oh well, that's what happens I suppose.
Also went to see my GP today for a check-up. Not much change there. He seems a little concerned that my bruising from the last infusion a few weeks ago is still visible though...
Family wise though, it's been great... The girls got a bucket load of games for the Wii from Santa; Band Hero has been a favourite with the whole family getting into the spirit of playing instruments. Charlotte especially seems to enjoy it as she jumps and grooves down while singing or playing the guitar. I however seem to get relegated to the drums as apparently it is 'too hard daddy'...
Madison spent a few days in Proserpine with Granddad Vic last week. She had a fantastic time, and we will be returning there as a family early next week to celebrate the holiday season with Jody and family now that they have returned from the US...
Again with the Medical I suppose...
I have to see Dr. Keary in Townsville for another check on the 28th. After that I have a Respiratory test on the 2nd and another infusion on the 3rd... It will be interesting to see how things go with Peter, as he never agreed with me being given Intragam infusions and would have rathered Infliximab. The change may occur now however as his registrar (Louise, who I had been seeing the most) has returned to Brisbane and been replaced. Infliximab is apparently what pulled me out of trouble in 2007, so I suppose it's not a bad thing; It's just that it is a 'hot' drug that I know I have had reactions to in the past...
Anyhoo, I will be staying at Megan's during the weeks surrounding the next group of appointments. She is going to the 'Great South East' (yup lovely place that...) for a wedding and I am babysitting her cats... Sort of worked out well there for all concerned I suppose; I will post something from there to let you all know what is happening...
Cheers,
Jason...
Physio is going well, well I suppose... I'm as sore as heck by the end of it, but I suppose their job is to try to stop the muscle degradation as much as possible so there is no use in complaining.
We had Christmas Day here. My Dad and Half-Brother Darren came up from Proserpine; Megan (half-sister even though you wouldn't know) and her Partner Jayson came down from Townsville and Kerry's parents came over from Ayr. A lovely meal was had by all and at the end of the day, Megan and Jayson decided to take Madison and Charlotte back to Townsville with them as I had an infusion on the following Wednesday and we could collect them then...
On the medical front, I am now experiencing constant neck pain, which means that that the flexors have decided to join the rest. Oh well, that's what happens I suppose.
Also went to see my GP today for a check-up. Not much change there. He seems a little concerned that my bruising from the last infusion a few weeks ago is still visible though...
Family wise though, it's been great... The girls got a bucket load of games for the Wii from Santa; Band Hero has been a favourite with the whole family getting into the spirit of playing instruments. Charlotte especially seems to enjoy it as she jumps and grooves down while singing or playing the guitar. I however seem to get relegated to the drums as apparently it is 'too hard daddy'...
Madison spent a few days in Proserpine with Granddad Vic last week. She had a fantastic time, and we will be returning there as a family early next week to celebrate the holiday season with Jody and family now that they have returned from the US...
Again with the Medical I suppose...
I have to see Dr. Keary in Townsville for another check on the 28th. After that I have a Respiratory test on the 2nd and another infusion on the 3rd... It will be interesting to see how things go with Peter, as he never agreed with me being given Intragam infusions and would have rathered Infliximab. The change may occur now however as his registrar (Louise, who I had been seeing the most) has returned to Brisbane and been replaced. Infliximab is apparently what pulled me out of trouble in 2007, so I suppose it's not a bad thing; It's just that it is a 'hot' drug that I know I have had reactions to in the past...
Anyhoo, I will be staying at Megan's during the weeks surrounding the next group of appointments. She is going to the 'Great South East' (yup lovely place that...) for a wedding and I am babysitting her cats... Sort of worked out well there for all concerned I suppose; I will post something from there to let you all know what is happening...
Cheers,
Jason...
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