Before I start guys make a cuppa or a coffee as this is going to be a long post.
I had a kidney transplant just over 20 years ago because I got food poisoning (compylerbactor).
Since January 2015 I started to feel pain when going to the loo, go thought it was piles. I went back as it didn't go away and was sent for tests including a scope at my local hospital in Essex, England.
They weren't sure what I had and as I was on immunosupresents alteady for my transplant so they referred me to the gastro team at the royal London hospital as this is where I get looked after for my kidneys.
After more tests I was eventually diagnosed with CD which surprised my renal consultants as I am already on things like prednisolone, cyslosporine and azathioprine but yet I still managed to get CD which although rare in transplant patients it is not unheard of.
For the past year nearly now my gastro team have concluded that I have been undertreated but as I can't increase my immunosupresents due to the effect it would have on my kidney my next option they said was to have infusions of vedolizumab.
I didn't like this option as the remmision rates were like 30/40% and after a while it wasn't uncommon for the drugs to stop working something the doctors never told me about and also I did not like the side affects associated with it. However the deal breaker was they wanted to take away my cyclosporine away from me. They had already done it with a few transplant patients and they are apparently fine kidney wise but nothing online about my predicament so I thought no I'm not being a guinea pig and risking my kidney.
So that's how it was left with me being stubborn as one renal consultant said to me but at the time my CD was bearable to a degree and I wanted to find another way out.
I soldiered on until last October before I started to flare up. Just before Christmas I found out all I could about MAP and it's involvement in CD.
In January I had my usual 3 monthly check up appointment with my gastro consultant. I wanted to tell him all about amat but I was worried he would either not know about amat or would be dismissive of it. So I decided literally the night before to email one of the experts here in the UK a Professor Jeremy Sanderson to give him a heads up that I wanted amat from my consultant and that my consultant may want to contact him about it.
I was lucky as professor Sanderson saw my email almost straightaway. He replied and emailed my gasto consultant too saying he was happy to help by sending any protocol over my consultant needed to start treatment. You are probably wondering why would he randomly email my consultant like that? Luckily he had already taught my consultant for about 3 years so that made the conversation I had with my consultant very easy the next day as he knew what was already going on.
Although not keen on AMAT my consultant was happy for me to go and speak to professor Sanderson and make a decision after speaking to him.
I booked a private appointment to see him at the Shard building in London beginning of February. I saw him a few days later and he was top dollar! He was very knowledgeable about my CD and he also seemed to know a fair bit about the kidney which I was a bit surprised about. His bedside manner is also excellent.
He looked at all my reports and blood tests and he said that if I had Vedolizmab that there was a 30% remission rate but he said that it was a viable option. He also could tell I was keen on amat and I asked him based on my CD which is colonic I think? That it would work better in my case with a possible 50% chance of remmision rates.
He said it doesn't hurt to try amat as you have nothing to lose and I know from my research the side affects are not as harsh as Vedolizmab! So he is a very positive chap.
He said the NHS will only fund the treatment up to 2 years but he currently had a patient wanting to stay on it past the 2 year mark so I don't know if that's a good thing to do to stop if it's working or are you stopping due to the costs? If it's the latter it doesn't make sense considering amat costs the NHS £3200 a year Vs Vedolizmab which costs thousands for every infusion!
Even though it cost £300 to see him it definitely gave me the confidence to go ahead with the AMAT.
He suggested as I was already with the royal London to stick with them. He wrote my gastro and renal doctor a letter and gave my gastro consultant the protocol.
My gastro consultant then applied for NHS funding which took a long time, about 2 months. In hindsight I should of got a private prescription for a couple of months while waiting for the funding instead of suffering from the pain of the flare up. A private prescription plus cost of meds costs about £200 a month.
I finally got the green light almost 2 weeks ago. Then after alot of hospital red tape my blood forms and pooh pot were sent out in the post and finally arrived a week later last Thursday. Last Friday I had my bloods done at the royal London and dropped off my pooh sample. I also collected 3 months supply of amat from the hospital pharmacist (I will put dosage info at the end). Got my results back last Saturday and my white cell count was fine so I started last night my amat which I will explain how I'm doing in the next post (just so I can break up this long post).
Rifabutin 150mg - 1 capsule once a day for 7 days. 1 capsule twice a day for 7 days and then take 3 capsules once a day (does that mean 3 in one go rather then morning afternoon and night?)
Clarithromycin 250mg - Take 1 tablet once every morning. Take 2 tablets once at night for 3 months.
Clofazimine 100mg - Take one capsule once a day.
I had a kidney transplant just over 20 years ago because I got food poisoning (compylerbactor).
Since January 2015 I started to feel pain when going to the loo, go thought it was piles. I went back as it didn't go away and was sent for tests including a scope at my local hospital in Essex, England.
They weren't sure what I had and as I was on immunosupresents alteady for my transplant so they referred me to the gastro team at the royal London hospital as this is where I get looked after for my kidneys.
After more tests I was eventually diagnosed with CD which surprised my renal consultants as I am already on things like prednisolone, cyslosporine and azathioprine but yet I still managed to get CD which although rare in transplant patients it is not unheard of.
For the past year nearly now my gastro team have concluded that I have been undertreated but as I can't increase my immunosupresents due to the effect it would have on my kidney my next option they said was to have infusions of vedolizumab.
I didn't like this option as the remmision rates were like 30/40% and after a while it wasn't uncommon for the drugs to stop working something the doctors never told me about and also I did not like the side affects associated with it. However the deal breaker was they wanted to take away my cyclosporine away from me. They had already done it with a few transplant patients and they are apparently fine kidney wise but nothing online about my predicament so I thought no I'm not being a guinea pig and risking my kidney.
So that's how it was left with me being stubborn as one renal consultant said to me but at the time my CD was bearable to a degree and I wanted to find another way out.
I soldiered on until last October before I started to flare up. Just before Christmas I found out all I could about MAP and it's involvement in CD.
In January I had my usual 3 monthly check up appointment with my gastro consultant. I wanted to tell him all about amat but I was worried he would either not know about amat or would be dismissive of it. So I decided literally the night before to email one of the experts here in the UK a Professor Jeremy Sanderson to give him a heads up that I wanted amat from my consultant and that my consultant may want to contact him about it.
I was lucky as professor Sanderson saw my email almost straightaway. He replied and emailed my gasto consultant too saying he was happy to help by sending any protocol over my consultant needed to start treatment. You are probably wondering why would he randomly email my consultant like that? Luckily he had already taught my consultant for about 3 years so that made the conversation I had with my consultant very easy the next day as he knew what was already going on.
Although not keen on AMAT my consultant was happy for me to go and speak to professor Sanderson and make a decision after speaking to him.
I booked a private appointment to see him at the Shard building in London beginning of February. I saw him a few days later and he was top dollar! He was very knowledgeable about my CD and he also seemed to know a fair bit about the kidney which I was a bit surprised about. His bedside manner is also excellent.
He looked at all my reports and blood tests and he said that if I had Vedolizmab that there was a 30% remission rate but he said that it was a viable option. He also could tell I was keen on amat and I asked him based on my CD which is colonic I think? That it would work better in my case with a possible 50% chance of remmision rates.
He said it doesn't hurt to try amat as you have nothing to lose and I know from my research the side affects are not as harsh as Vedolizmab! So he is a very positive chap.
He said the NHS will only fund the treatment up to 2 years but he currently had a patient wanting to stay on it past the 2 year mark so I don't know if that's a good thing to do to stop if it's working or are you stopping due to the costs? If it's the latter it doesn't make sense considering amat costs the NHS £3200 a year Vs Vedolizmab which costs thousands for every infusion!
Even though it cost £300 to see him it definitely gave me the confidence to go ahead with the AMAT.
He suggested as I was already with the royal London to stick with them. He wrote my gastro and renal doctor a letter and gave my gastro consultant the protocol.
My gastro consultant then applied for NHS funding which took a long time, about 2 months. In hindsight I should of got a private prescription for a couple of months while waiting for the funding instead of suffering from the pain of the flare up. A private prescription plus cost of meds costs about £200 a month.
I finally got the green light almost 2 weeks ago. Then after alot of hospital red tape my blood forms and pooh pot were sent out in the post and finally arrived a week later last Thursday. Last Friday I had my bloods done at the royal London and dropped off my pooh sample. I also collected 3 months supply of amat from the hospital pharmacist (I will put dosage info at the end). Got my results back last Saturday and my white cell count was fine so I started last night my amat which I will explain how I'm doing in the next post (just so I can break up this long post).
Rifabutin 150mg - 1 capsule once a day for 7 days. 1 capsule twice a day for 7 days and then take 3 capsules once a day (does that mean 3 in one go rather then morning afternoon and night?)
Clarithromycin 250mg - Take 1 tablet once every morning. Take 2 tablets once at night for 3 months.
Clofazimine 100mg - Take one capsule once a day.
. 
