Drug Therapy
After 4-6 months of Cyclophosphamide injections every month, and a pretty high starting dose of Prednisolone oral steroids, the blood markers showed treatment had a very big impact in bringing the disease under control. I seemed to tolerate the treatments well, and they didn't really interfere with my activity - I was cycling to work (about half an hour each way) and training in Tae Kwon Do, and rock climbing occasionally at weekends, so really I was trying to lead a normal life (for me!). I have no memories of ever feeling very wiped out by the treatment, maybe a bit tired a few days after but nothing too bad.
I was then switched to taking daily doses of oral cyclophosphamide and continuing oral steroids, then a range of heart medications were introduced ultimately ending up on 50mg Atenolol, 75mg Aspirin and 2.5mg Ramipril for many years.
At first the novelty of taking these pills every day made me feel a bit special - just being different from the norm I suppose. Then I got fed up with them pretty quickly, occasionally forgetting to take a dose or just annoyed at having to keep getting scripts from my GP. I was not very organised and so to have to arrange my daily routine around remembering all this was a new and unwelcome thing.
Finally acceptance arrived: that this was part of my life and it was all working to keep me healthy and enabling me to live the life I wanted.
To summarise the drug therapy I underwent over the years, here is a basic list.
1997 - IV Cyclophosphamide and oral Prednisolone (can't remember doses sorry)
1997 / 98 - Oral cyclophosphamide, oral prednisolone daily
1998 - Above plus beta blocker (50mg Atenolol), ACE inhibitor (2.5mg Ramipril), Aspirin 75mg daily
Overview of what these drugs do:
Cyclophosphamide - at high doses this drug is "cytotoxic" i.e. it kills cells in the body. This makes it good in cancer where it is used to kill the tumour cells. Unfortunately it is not very specific in it's action, so other cells in the body may be killed off - this causes many of the side effects of chemotherapy (nausea, vomiting, generally feeling awful). At doses I was receiving, the drug is an "immunosuppressant" - this means it suppresses the body's immune system. The reason this helps in Takayasu's arteritis, and many other autoimmune conditions is the disease results from the body's immune system, attacking the body's own, healthy tissue. In Takayasu's arteritis, white blood cells infiltrate tissues of the aorta and other vessels, causing inflammation and damage to these cells. By taking an immunosuppressant you stop this out-of-control defence system from attacking your body. The down side to this is that by reducing your immune system, you are potentially more at risk from infection, as you do not have the normal ability to defend against foreign bacteria, viruses etc.
Other immunosuppressants I was moved onto over my life were Azathioprine and Methotrexate - both with potentially unpleasant side effects but not as nasty as Cyclophosphamide.
Prednisolone - a corticosteroid which also reduces the body's immune system
Beta blockers e.g. Atenolol - These reduce the overall heart rate thus reducing strain on the heart
ACE inhibitors e.g. Rampipril - These help reduce blood pressure - again trying to protect the heart and blood vessels from the dangers of high blood pressure.
Aspirin - This is an anti-platelet agent. Platelets are a key part of the clotting process. In blood vessels such as arteries which have been damaged, by inflammation (in my case) or smoking, cholesterol build up etc. there is an increased chance of the blood clotting and forming a thrombus - a clot which blocks the artery. If this happens it is possible to cause a stroke (if the clot lodges in a carotid artery), heart attack (in the coronary artery) or other serious complications.
In layman's terms aspirin is a "blood thinner".
Timescale of Drug Therapy
Given the toxic side effects of cyclophosphamide - Dr J was keen to move me onto something less nasty as soon as my disease was stable. I don't remember the exact timescale, but within a year of starting therapy I think I was moved to azathioprine instead.
Over the course of a couple of years this had a less successful disease control outcome, so I was switched to methotrexate.
I remained on this for a number of years, during which I was weaned off the steroids. And in about 2007, ten years after first diagnosis, I finally came off the methotrexate. Regular blood tests showed no inflammation, so I remained on the heart drugs only.
In 2012, after blood tests showed a higher level of inflammation than normal. I had a checkup including a PET scan - a technique where you drink some mildly radioactive glucose. The glucose is taken up most rapidly in areas of inflammation - so those areas show brightly on the scan image. My scan showed some inflammation around the aorta and so Dr J cautiously recommended I restarted the methotrexate, which I am still currently taking in 2014.
I was then switched to taking daily doses of oral cyclophosphamide and continuing oral steroids, then a range of heart medications were introduced ultimately ending up on 50mg Atenolol, 75mg Aspirin and 2.5mg Ramipril for many years.
At first the novelty of taking these pills every day made me feel a bit special - just being different from the norm I suppose. Then I got fed up with them pretty quickly, occasionally forgetting to take a dose or just annoyed at having to keep getting scripts from my GP. I was not very organised and so to have to arrange my daily routine around remembering all this was a new and unwelcome thing.
Finally acceptance arrived: that this was part of my life and it was all working to keep me healthy and enabling me to live the life I wanted.
To summarise the drug therapy I underwent over the years, here is a basic list.
1997 - IV Cyclophosphamide and oral Prednisolone (can't remember doses sorry)
1997 / 98 - Oral cyclophosphamide, oral prednisolone daily
1998 - Above plus beta blocker (50mg Atenolol), ACE inhibitor (2.5mg Ramipril), Aspirin 75mg daily
Overview of what these drugs do:
Cyclophosphamide - at high doses this drug is "cytotoxic" i.e. it kills cells in the body. This makes it good in cancer where it is used to kill the tumour cells. Unfortunately it is not very specific in it's action, so other cells in the body may be killed off - this causes many of the side effects of chemotherapy (nausea, vomiting, generally feeling awful). At doses I was receiving, the drug is an "immunosuppressant" - this means it suppresses the body's immune system. The reason this helps in Takayasu's arteritis, and many other autoimmune conditions is the disease results from the body's immune system, attacking the body's own, healthy tissue. In Takayasu's arteritis, white blood cells infiltrate tissues of the aorta and other vessels, causing inflammation and damage to these cells. By taking an immunosuppressant you stop this out-of-control defence system from attacking your body. The down side to this is that by reducing your immune system, you are potentially more at risk from infection, as you do not have the normal ability to defend against foreign bacteria, viruses etc.
Other immunosuppressants I was moved onto over my life were Azathioprine and Methotrexate - both with potentially unpleasant side effects but not as nasty as Cyclophosphamide.
Prednisolone - a corticosteroid which also reduces the body's immune system
Beta blockers e.g. Atenolol - These reduce the overall heart rate thus reducing strain on the heart
ACE inhibitors e.g. Rampipril - These help reduce blood pressure - again trying to protect the heart and blood vessels from the dangers of high blood pressure.
Aspirin - This is an anti-platelet agent. Platelets are a key part of the clotting process. In blood vessels such as arteries which have been damaged, by inflammation (in my case) or smoking, cholesterol build up etc. there is an increased chance of the blood clotting and forming a thrombus - a clot which blocks the artery. If this happens it is possible to cause a stroke (if the clot lodges in a carotid artery), heart attack (in the coronary artery) or other serious complications.
In layman's terms aspirin is a "blood thinner".
Timescale of Drug Therapy
Given the toxic side effects of cyclophosphamide - Dr J was keen to move me onto something less nasty as soon as my disease was stable. I don't remember the exact timescale, but within a year of starting therapy I think I was moved to azathioprine instead.
Over the course of a couple of years this had a less successful disease control outcome, so I was switched to methotrexate.
I remained on this for a number of years, during which I was weaned off the steroids. And in about 2007, ten years after first diagnosis, I finally came off the methotrexate. Regular blood tests showed no inflammation, so I remained on the heart drugs only.
In 2012, after blood tests showed a higher level of inflammation than normal. I had a checkup including a PET scan - a technique where you drink some mildly radioactive glucose. The glucose is taken up most rapidly in areas of inflammation - so those areas show brightly on the scan image. My scan showed some inflammation around the aorta and so Dr J cautiously recommended I restarted the methotrexate, which I am still currently taking in 2014.
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