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My 1st day on AMAT and how I got my funded treatment

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.
 
Ok guys onto my experiences of the AMAT.

I started last night (Sunday) and after about 20 minutes I felt a bit funny in the head, maybe drowsy or maybe just paranoia about all the side affects all the leaflets warn about?

I had some weird vivid screwed up dreams last night. I had the same thing happen while I was on Metronidazole (flagyl) for 2 weeks at the start of February which btw put me in temporary remission until I had to stop them.

Woke up this morning and had my first bowel movement which although came out a bit bloody I didn't have any of that dreaded Crohn's type diahorea which I get even with solid bowel movements normally also the pain I've had in my stomach from going too much to the toilet since Friday has gone (although it was disapating yesterday before the AMAT was started).

So far that's my only bowel movement today however once or twice today I did fleetingly think about going again but the moment passed quickly.

It's now almost 5pm here in the UK so to go once today for me is actually pretty good so far Vs the 6-12 times I normally go when flaring.

I have stayed in bed all day today as a precaution as I'm preparing myself for flu like symptoms. Does everyone get this? Otherwise I've felt fine although I feel almost a bit too chilled and relaxed especially in the head. I guess that is the body getting used to the meds?

Anyway I will keep you guys posted and answer any questions you have.

I also want others outside the forum to know that amat is an option even if they decide it's not for them. Anyone have any suggestions particularly for patients in UK?

Keep your fingers crossed for me :)
 
D

Deleted member 431298

Guest
Hi Nyk24
Thank you for sharing your story with us here. Firstly the details on how you got the referral in order and your GI onboard are very interesting.
Secondly it is very interesting to follow how your body reacts to the amat protocol from day one. One question: Did you ever have blood testing done for the presence of mycobacteria in your blood?
cheers
 
Hi Nyk24
Thank you for sharing your story with us here. Firstly the details on how you got the referral in order and your GI onboard are very interesting.
Secondly it is very interesting to follow how your body reacts to the amat protocol from day one. One question: Did you ever have blood testing done for the presence of mycobacteria in your blood?
cheers
I didn't have any blood test for mycobacteria. Professor Sanderson said it was likely I already had this/map and I personally have taken metronidazole in the past and on both occasions my symptoms improved alot.
 
Ok guys I'm on day 4 of amat and so far I haven't noticed any significant side affects.

My bowel movements have gone from little or no stools accompanied with diahorea/cloudy discharge to regular formed stools about 75% of the time so far.

Monday I had 3 BMs, Tuesday not so good had 6 BMs, Today I've had 2 so far probably will have at least a couple before bed lol. Which I guess is alot better than the significant BMs I was having right up to Sunday.

I have a bit more of an appetite today.

I have the odd aches/stiffness in my thighs and one of my arms but it doesn't really bother me.

Lastly I have started to have a dry throat on one side of my mouth but that's nothing to do with the AMAT just something I think I've caught from the missus.

So that's where I am so far just resting, taking every day as it comes and trying to note every little change I get in my condition. I think it's a good start and I am hopeful I will keep improving but I still can't help worrying because so many folks on here have had such unlucky experiences but whatever will be will be and I can only hope, pray and try to achieve remission.
 
I forgot to add that my fistula has shrunk and the carbuncle I've had for about 3 weeks has now started to shrink and leakage from it has reduced. Also I am hardly passing wind after a meal anymore and I've had no small random leakages since starting AMAT.
 
I forgot to add that my fistula has shrunk and the carbuncle I've had for about 3 weeks has now started to shrink and leakage from it has reduced. Also I am hardly passing wind after a meal anymore and I've had no small random leakages since starting AMAT.
That sounds great.
 
Seem to be averaging 4 or 5 BMs a day at the mo. I don't get any huge urgency or pain that causes me to go straight away. I can hold it if I want if that makes any sense meaning I will finally be able to get out of my house lol.

My throat infection seems to have almost cleared but I'm feeling tired all over and achy which is probably a bit of amat and a bit of the infection?

My mood has also improved along with my symptoms.

Im just thinking out loud here. Amat isn't suitable for everyone and doesn't work for everyone. I decided on AMAT due to the information found on here and elsewhere. Lastly I also thought it might suit me because I felt so much better when given metronidazole on 2 separate occasions. So my thought is this is......should folks try metronidazole for a week or two and see how it affects them before amat is taken? I only ask this because of what happened to me and Irishgal on it. I wonder if there is any research or strong anecdotal evidence to back up my assumption?

Obviously what I have said above is only the opinion of a layman and not a doctor so do your own research on this rather than just taking my word for it.
 
Hi Nyk24, thanks for posting. Seems like your treatment dosage was based on this document:



I wish you good luck with your journey.
 
Thanks for posting your journey, very interesting!

I'm also out of options and my specialist is recommending surgery so I might ask about this.
Is there anything else I should know about this treatment?
I've been on all kinds of antibiotics over the years, especially when I was young, for ear infections etc. Can't remember if my bowel liked them, I suspect not, but I really can't remember for sure. I do remember you weren't allowed to drink alcohol while on antibiotics, I assume it's the same for these? Can't remember any other restrictions, are there any?
 
Hi Nyk24, thanks for posting. Seems like your treatment dosage was based on this document:



I wish you good luck with your journey.
Thanks Crohn2357, yes that's correct it is based on that document my treatment. I sent my GI this same document in the hope it would help with getting the funding.
 
Thanks for posting your journey, very interesting!

I'm also out of options and my specialist is recommending surgery so I might ask about this.
Is there anything else I should know about this treatment?
I've been on all kinds of antibiotics over the years, especially when I was young, for ear infections etc. Can't remember if my bowel liked them, I suspect not, but I really can't remember for sure. I do remember you weren't allowed to drink alcohol while on antibiotics, I assume it's the same for these? Can't remember any other restrictions, are there any?
Hi Layla sorry to hear you are running out of options but please don't lose hope.

Yes you can drink on these Antibiotics except for metronidazole but I think I read somewhere that Antibiotics coupled with alcohol can reduce its affectiveness. I haven't had a drink so far (might have one tonight) but that's because I'm not a big drinker but I will have the odd one with these meds but won't get drunk as I think that might be playing with fire especially in the early days while the body is still getting used to the meds but that's my personal decision, only you can decide to drink or not.

There aren't any restrictions on these meds regarding food or drink.

The meds work differently on different people. You may have little or no side affects like me or you may get flu like symptoms, red urine (this is normal in a small amount of patients), aches and generally feeling tired and wiped out like when you get a cold. I've also heard you can be fine on the meds and then a year or so down the line find it hard to tolerate the meds but personally I think it's worth the gamble so to speak. Professor Sanderson said to me that I have nothing to lose trying AMAT so that's what probably swung it for me when deciding whether to go for amat or not.

If you are keen to avoid surgery then this may well be option to explore further. Speaking with a GI expert may be your first option before you make any final decision.

Lastly Professor Sanderson told me a patient of his was one week away from surgery until amat put her into remission so there definitely is hope no matter how bad your Crohn's is right now.

I wish you well on this :)
 
Yesterday was my best day ever (it's been a week so far on AMAT) I had 3 BMs. I managed to get up and around the house and enjoyed the sunshine outside in my garden.

It's the first time in 6 months I've felt almost normal since my flare got really bad 6 months ago.

Most of the minor side affects have gone like feeling achey and feeling a bit drowsy and being run down.

Today I feel just as good. I'm not taking anything for granted right now but I am more optimistic now more than ever. One of my meds got increased today as per the instructions on the dispensing label so I don't know if that will have any affect either way? We shall see.
 
D

Deleted member 431298

Guest
Nyk24, that's great news.
I wonder - Have you experienced similar sudden shifts for the better during the last six month, or would you say the last turn for the better is a unique event?
 
Thanks Ole, during the last 6 months I have just felt worse gradually. The only period in which I felt good was when I took metronidazole for 2 weeks at the beginning of February when that finished the Crohn's came back with a vengeance.
 
Nyk24, if you get GI disturbances like nausea, drinking ginger tea or eating ginger might help. I always drink ginger tea when I am on antibiotics for this effect.

Ginger is a 5-HT3 antagonist, like Ondansetron. It's a natural antiemetic. In addition to this effect, it also helps with mood and inflammation.
 
Thanks Crohn2357, I don't know why I didn't think about using ginger before. Ginger and slices of green apple are apparently good for sea sickness so can't see why your suggestion for me wouldn't work. Luckily I already have plenty of ginger biscuits at home already so will have some the next time I'm feeling sick.
 
D

Deleted member 431298

Guest
I am also thinking about you Nyk24 - how are things? I hope you are still going strong!
 
Hi Nyk24, thanks so much for posting, I have been looking into this treatment and interested in other's experiences with it. Glad to hear you are doing good so far. Keep us updated on how it's going :)
 
Hi everyone I have a long overdue update.

That slight nauseous feeling I was getting has virtually gone. When I did have it crohn2357's suggestion of ginger made an instant difference - I had one small ginger biscuit (cookie).

My appetite is now back to normal. I go about 3 times a day for a bm which are normal and don't hurt. My fistula and carbuncle are slowly but surely still healing up slowly.

I still get tired but nowhere near as much as I used to.

The only downside so far has been that the cyclosporine I take for my transplant has been now cut in half as it has made my creatine levels go up which I knew could be a possibility as cyclosporine interacts with a couple of the Antibiotics I take for the AMAT. Therefore my renal consultant has decided to monitor my bloods every 2 weeks for the next few weeks.

My next bloods are tommorow, so I will just have to wait and see if I stay on the same dose of cyclosporine, go down again or go off it completely.

So all in all life is good. I am trying to enjoy this remission as I know I'm not cured and I am one of the lucky ones to (a) have this working for me and (b) have had the opportunity to get this treatment funded for me.
 
D

Deleted member 431298

Guest
Great news Nyk24. Especially that your fistula and carbuncle are healing. I hope for you it will continue this way.
 
Maybe a dumb question....but just curious Nyk24, Do your doctors encourage or discourage taking any probiotics with this treatment?
Thanks guys.

I have not asked my doctors about probiotics. I have tried probiotics drinks in the past and they didn't do anything for me.

From my limited knowledge most probiotics never manage to get the good bacteria to the gut alive? I have though heard some good things about inulin? You can get this in powder form or get it from Jerusalem artichoke.

Not the same but I do take tumeric supplements which Professor Sanderson said to keep on taking them. I almost got the Impression that he thought this was a good idea?

I don't think tumeric has ever helped my Crohn's but am convinced it has reduced the amount of colds I normally get and when I do catch something I do get over it alot quicker than before
 

Lynda Lynda

Senior Member
Location
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Nyk24 : I did not need a cup of coffee before reading your first post 😄.
Thanks for sharing your experiences with AMAT.
I read posts even if I am not in a similar situation because someday this knowledge may become useful for me.
Take Care. 🌻
 
Thank you from the bottom of my heart for sharing all these...all the best to you,i'll be waiting for even better news,greetings to all from Greece!!!
 
Nyk24 : I did not need a cup of coffee before reading your first post 😄.
Thanks for sharing your experiences with AMAT.
I read posts even if I am not in a similar situation because someday this knowledge may become useful for me.
Take Care. 🌻
Thanks Lynda 😉
 
Okay guys another update for you all. my skin the last couple of days has become really dry around my eyes, it feels similar to how you get whenyou feel very tired but just in the eyes if you know what I mean. I also noticed yesterday that I have a touch of psoriasis in both my hands. Have been using child's farm moisturizer for my hands and it seems to help a bit. Don't know what to put around my eye lids and below my eyes though as I don't want moisturizer to get in my eyes which is bound to happen now the weather here in England is alot warmer.

On some brighter news my blood results came back today and my creatine has gone down from 356 to 257. Which is good. It's now almost at the level it was before my Crohn's emerged nearly 3 and a half years ago. I think a combination of better hydration and a reduction in cyclosporine dosage has helped with the improvement in blood results. 😉
 
Hi everyone. My psoriasis is clearing up on my hands thanks to the child's farm moisturiser. The dry skin around my eyes is almost gone now thanks to some anti aging roll on eye cream I found lurking in the bottom of a box full of toiletries people keep giving me at Christmas (no I don't smell guys hehe).

The hospital rang to increase my cyclosporine from 50mg twice a day to 75mg twice a day. It was 100mg twice a day before I started AMAT but AMAT interacts with cyclosporine a bit so I guess they are tweaking my dosage til they get the right levels for me.

I saw my gastro consultant in London. He was very pleased about my progress. He said I was like the 2nd or third person on this (he has 3000 patients).

I forget the name of the test but I had to give a stool sample today. Think it's called a faecal something test???

If that comes back better than the one I had last month then that coupled with the crp or is it cpr blood test will tell them if things are working or not inflammatory wise.

I see my consultant again in 2 months time for bloods.

I am disappointed that I am in the lucky minority to have AMAT and for it to be working. I know it doesn't work for everyone and it isn't suitable for everyone but it disappoints me to hear that my hospital isn't able to offer it as a treatment option just because of all the extra funding needed coupled with the sufficient trial data they need in order to say to a decision making body like NICE that this treatment is a viable option for some Crohn's sufferers. I just wish there was something I could do on a practical level that could help people in the same or very similar situation to me.
 
D

Deleted member 431298

Guest
Nyk24, great to hear about your good progress. Congratulations mate!
I think the test you did is called fecal calcprotectin (FCP). It measures a certain protein in the stool that is elevated if IBD related inflammation is present. Normal range is <50 mg/kg, but with CD it can get really high, over 1000mg/kg.
I would suggest you write down the values and keep an eye on the trend, it is a very precise marker.
Actually FCP is used to diagnose intestinal TB, and I also read other NCBI sources that indicate FCP is a marker of (mycobacterial) infection.
Here's a link to the intestinal TB article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4212497/

In short I think elevated FCP in CD is yet another indication that MAP is a factor.
 
Nyk24, great to hear about your good progress. Congratulations mate!
I think the test you did is called fecal calcprotectin (FCP). It measures a certain protein in the stool that is elevated if IBD related inflammation is present. Normal range is <50 mg/kg, but with CD it can get really high, over 1000mg/kg.
I would suggest you write down the values and keep an eye on the trend, it is a very precise marker.
Actually FCP is used to diagnose intestinal TB, and I also read other NCBI sources that indicate FCP is a marker of (mycobacterial) infection.
Here's a link to the intestinal TB article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4212497/

In short I think elevated FCP in CD is yet another indication that MAP is a factor.
Hi everyone, sorry it's been awhile since my last update.

I saw my consultant last Thursday and the FCP test olej mentioned (thanks for the info olej) that I had last time was back and it was 150 which my consultant was very pleased about as anything below 200 is remission despite normal people having only about 50 which is an improvement on my previous FCP which was like 4000 or something really high like that. My consultant was almost surprised as he wasn't sure til then that the lack of symptoms I was reporting would bear out on all the tests I have had.

Generally speaking I'm well still noticing every now and then very small improvements i.e my bowel movements have been regularly 3 times a day but the last week or so ago have managed to go only twice on 2 separate days! Also the spacing between my 3 BMs has spaced out move evenly throughout the day. My fistula/skin tags around my bum are still slowly shrinking.

The only bad thing that I have experienced the last 3 months is the affect amat has had on my creatine levels and my cyclosporine levels which has meant my cyclosporine dosages has been adjusted about 3 times now (once down and twice up). My cyclosporine level finally is in an acceptable range however my last blood test a few days ago showed my creatine had shot up to 369, the highest it's ever been, it's usually around 300 or less. I suspect this is the interaction of the clarithromycin and the cyclosporine I take. So that's another riddle I have to solve as I doubt my renal clinicians have the knowledge or experience to help me in this regard. Tbh I am tempted to stop my cyclosporine after being on it for 20 years as this is what was going to happen when my renal and gastro team wanted me to take vedolzimab so question is do I put down my creatine levels to the extreme heatwave even though I was drinking plenty or should I be concerned about the interaction that clarithromycin is causing. Wish I knew what to do but no answers so far online :(
 
D

Deleted member 431298

Guest
Hi Nyk24.
Thank you so much for sharing. Your report is not wyhat I had hoped for you, but I really wish for you that your riddle finds a solution.
I remember when my creatinine stsrted to rise, my GI said: your main concern is no longer CD. You should worry more about your kidneys. I hope you will get some qualified specialist advice on this one to stabilize things again and preserve your kidneys!

It is interesting to hear that your CP is down to 150, that is really low compared to 4000!

One question: what is the cyclosporine for? To avoid transplant rejection or CD (or both?)

I hope you will keep us posted on how you do going forward.
By the way, Redhill’s antibiotic regimen for CD phase III study conclusions will be out in a matter of weeks. I hope that will give us all additional knowledge.
 
Hi everyone.

Apologies for the delay in updating you all.

Since the last update a couple of months ago nothing much has changed.

My bowel moments are 2 - 3 times a day which is a slight improvement, I don't think it will get any better than this which I am fine with as I feel like I'm in remission.

I saw my gastro doctor last month. I was actually feeling really dodgy like the Crohn's had come back, ouch!

I explained all this to my consultant. He didn't know if it was the Crohn's or something else. He said he wasn't going to give me an FCP test as he didn't want a high result to come back which might have meant stopping the AMAT.

Like me my consultant was concerned about my kidney function had gone down since starting AMAT so he reduced by half my rifabutin and clarithromycin as they are interfering with my Cyclosporine which I take for my transplant (not for Crohn's).

After seeing my consultant I actually started to feel better and within 24/48 I was back to normal.

I told my consultant that I had a night out in London and drank a bit too much (I wasnt drunk). I thought how could one night do this and then it twigged! I had drank the previous 2 days, again not alot but obviously enough over 72 hours to interfere with my AMAT. So the takeaway from this mini episode is I can have a few too many as a one off which I did a couple of weeks later but never should I drink alcohol on consecutive days as it interferes with AMAT and if you think about it any normal person may experience diahorea symptoms if they were to drink a few days on the trot.

On better news my consultant said my FCP had dropped further from 150 to 49 or something like that, apparently a rate you would expect to see in someone who never had Crohn's!

After seeing my consultant a couple of days later my bloods came back, they weren't great! My PCR I think it's called that measures inflammation in the blood went up from >1 to 4 which explains my brief relapse! My creatine remains high it's gone up from 369 to 385 a minor increase bit still higher than the 250 to 300 range I'm used to getting. I looked into it and I'm convinced it's the AMAT treatment combined with cycloserine affecting my creatine levels. My other levels that they measure for my kidney function remain steady and combine with the research I've done I know it's this interaction that's affecting my creatine levels.

My Cyclosporine levels are steady according to the last blood test but I believe I'm still taking too much cycloserine because my feet in particular my right foot periodically has a cold type pain in it. I got this at the start of amat and surprisingly it disappeared for a while when my Cyclosporine dosage was reduced. I'm hoping now that I'm on a lowered dose of rifabutin and clarithromycin that my creatine will improve and if my hunch is right the cycloserine levels in my blood should rise enough that my Cyclosporine dosage will be reduced.

I see my renal consultant on Friday. I hope they see the logic of my argument about AMAT and cyclosporine but unfortunately in the past any anecdotal evidence I have given about my symptoms has been dismissed and I'm usually pretty spot on with my observations about my body.

So to sum up I'm hoping to sort out a combination of amat and cyclosporine that doesn't interfere with my creatine levels as I want to preserve what kidney function I have left but still keep the Crohn's at bay!

PS. Anyone thinks of trying AMAT but not too sure I will say this - forget the research on whether it's likely to work for you or not just try it - unless you are allergic to antibiotics what have you got to lose? Those you talk about antibiotic resistance may well take comfort in new research that says using several antibiotics at once doesn't create resistance. I know it's just one study but if it helps you take the leap of faith.

PPS wish me luck with my bloods and my consultant on Friday. I will try and update you all when I get the results next week.
 
I forgot to mention that I managed to greatly improve the circulation issue in my feet that has been giving me on and off discomfort - probably linked to the amat and cyclosporine combo.

Last Saturday I had 2 glasses of wine and noticed my feet didn't hurt so on Monday I had just one glass of wine (I measured out 150ml) and that worked almost instantly. I have read since that alcohol improves the blood circulation and improves blood pressure but the affect is negative if you have more than one small glass of wine or equivalent in say spirits, so from now I am going to have a glass every day or other day until my meds get sorted once and for all.
 
D

Deleted member 431298

Guest
Nick,
Thank you for your report. I read it with great interest, I wish I was as brave as you and just jumped onboard. At the moment though I don't have the stamina to start to convince my GI to play along. Although I guess a new argument would be that the recently completed Redhill study concludes that the remission rate on AMAT is comparable to the biologics. I wish you luck on friday!
 
Nick,
Thank you for your report. I read it with great interest, I wish I was as brave as you and just jumped onboard. At the moment though I don't have the stamina to start to convince my GI to play along. Although I guess a new argument would be that the recently completed Redhill study concludes that the remission rate on AMAT is comparable to the biologics. I wish you luck on friday!
Nick,
Thank you for your report. I read it with great interest, I wish I was as brave as you and just jumped onboard. At the moment though I don't have the stamina to start to convince my GI to play along. Although I guess a new argument would be that the recently completed Redhill study concludes that the remission rate on AMAT is comparable to the biologics. I wish you luck on friday!
Thanks OleJ I wish I was brave too, I just got to a point of desperation where the pain was too much and AMAT seemed like the best answer.

Your GI if they know anything about AMAT will quote the Selby et al study which if you read the results for amat would have been better if the dosage was higher I think but as one group had a low dose it screwed up the results which ment many consultants thought it was no good. You can also mention professor Sanderson has a decent remission rate in clinic for amat for those who have Crohn's in the colonic area. And like you said the Redhill study. Even if your GI doesn't agree with you he should respect you for your well reasoned argument. Have you tried metronidazole before? Your GI may not agree with you like mine didn't but he respected professor Sanderson and he also could tell how keen I was and how clued up I was. So what I'm saying is if you don't ask you don't get - remember you aren't just a normal patient who happened to Google cure for Crohn's and came up with AMAT.
 
D

Deleted member 431298

Guest
All true arguments- add to that I tested positive for MAP by culture (Otakaro). Twice.
 
Hi guys

So went up to London to see my renal consultant. As I expected not great news. My consultant wants me to consider getting ready for another transplant by getting anyone I know tested, fortunely I have already had some very kind offers.

If my creatine continues to rise my current kidney won't work by this time next year but that was just a guess by my consultant based on my last 2 or so creatine readings.

However I still remain hopeful that the inevitable can be delayed a bit longer.

My creatine levels have almost certainly risen sharply due to the interaction of cyclosporine with clarithromycin. I just hope and pray that the dosage reduction I have had in clarithromycin recently migh t
make today's blood results not as bad as last time.

The trouble is with only about 50 or so people in the UK being on AMAT and me probably being the only one that has had a kidney transplant too then I am truly a gueaine pig.

My renal consultant doesn't know much about the antibiotics I am on and their affect on my kidneys but she said she would look into it. However I still feel it's all on me to try and find a solution.

When my Crohn's started about 3 years ago that's when it started to affect my kidney function. Now that I am in remission one would assume that my kidney function would improve which it initially did - considerably but now it's gone the other way and I can only think that combining clarithromycin with cyclosporine has done this. Now how do I fix it? Do I stop Cyclosporine which is supposed to stop kidney rejection or do I stop clarithromycin which is helping keep the Crohn's at bay? I'm hoping my new reduced dosage of clarithromycin and rifabutin will show in my blood results tommorow but if they don't do I have a 3rd option like replacing the clarithromycin for another antibiotic like metronidazole???

I wish I could leave the decision to my doctors but they just follow protocol as they say which probably means something stupid like oh let's just carry on as we arer til youu need a transplant instead of using a bit of commonsense and thinking outside of the box.

It really does suck that I can't think of anythin medically or even in the same boat as me that has an idea of what to do and I am dammed if I'm going to give up on this kidney without a fight.

Sorry for the rant just needed to get things off my chest
 
However I still feel it's all on me to try and find a solution.

I wish I could leave the decision to my doctors but they just follow protocol as they say which probably means something stupid like oh let's just carry on as we arer til youu need a transplant instead of using a bit of commonsense and thinking outside of the box.
I feel you Nyk24....frustrating
 
I finally plucked up the courage to check my blood tests today.

My creatine went down from 385 to 371 and before that it was 369 so still not out of the woods so to speak.

All my other kidney function tests went down too. My white blood cell count went up and so did my CPR a little bit - both indicators that the body is fighting an infection and at the time I had a stinking cold!

Now usually when I have a cold my creatine goes up but not this time! I suspect my creatine would have been lowered if I hadn't had a cold, by how much I don't know. I'm hoping my blood tests in 5 weeks time bear out my guess work here

Also my right foot the last couple of days seems better - the pain has really subsided.

I still can't feeling worried about the whole situation but I have hope now something we all need from time to time to keep going. Unfortunately I just don't have any confidence in my renal team even though my consultant is a very nice lady I feel with my situation I should have the best consultant on my side if you know what I mean?
 
Its been almost two years since my last update (I know real bad huh).

I am still in remission after 2 years. Kidney function stil worsening. How I am not on dialysis yet I don't know. I have been on the list for a new kidney for a year now.

If I do end up on dialysis which is looking that way now the last thing I want is another flare up as you cannot just get up and go to the loo while you are tied to a machine 3 days a week for four hours each time lol.

Has anyone got their NHS funding extended or gone private? I am.worried because relapses xan happen weeks later or of lucky you can go 20 years without any relapses.

Hope.everyone is staying well and safe while.this awful.corona virua ravishes our world.
 
Thanks for the update. It’s great to hear success stories with Amat as it keeps it as an option.
I was wondering if it was worth getting back in touch with Dr Sanderson to see if he knew which drug most likely to be causing problems and suggest an alternative? On the human para website it looks like there are a few different antibiotic combinations - just a thought.

Good luck to you
 
Thanks Delta for your kind words and the suggestions

TBH I am probably a bit of an odd case for my gastro team. None of know if any of rhe AMAT drugs are having an issue with my declining kidney fumction.

If I stop AMAT I could at worst have a few weeks more of remission or twenty plus years!

If I stop AMAT maybe my kidney function might stop declining as it has less crap to filter but my kidney started declining as soon as I started suffering with CD and there is some speculation that CD can affect kidney function.

Okay my consultant just rang me for a telephone consultation and said we should stop the AMAT and get a stool test cannot rememeber the exact term but we all have had one lol. Then have one again in three months and hopefully but not guaranteed that if I do start to relapse then they will be able to tell before I can and I can go back on AMAT before it starts affecting me again. Which is encouraging news as when I first enquired about AMAT in February 2018 Professor Jeremy Sanderson said people were begging to get their two year NHS funding extended but it was proving difficult to do. Now we know people who have relapsed have gone back into remission after restarting AMAT and with AMAT there are many different antibiotics you can switch out if you have some antibiotic resistance the second time around?

So there is a lifeline now for folks on AMAT who do not want to come off it for fear of relapse.

P.S. Asked my consultant about helping my gut flora rerurn to normal after all the antibiotica I have been pumping into it and vivo mixx was suggested. Anyone heard of of it?
 
Yes I take it basically the same as vsl#3 but slightly cheaper is what my consultant said
Has to be kept in the fridge so if you buy online make sure they have thought about that for delivery (can cope outside fridge for certain length of time up to a max temperature)
 
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