New to forum. Advice please!!!

[Milly17]

Just looking for some advice really.
I was diagnosed in 2013 after 2 years of misdiagnosis with the GP. Was put on pred and azathioprine, developed bad side effects which I knew was the aza but was told by consultant to continue taking it. Had to retake this 3 tines before they realised I was allergic to it. Was then put on 6MP and 4 weekly infusions of infliximab. Things were starting to look better and then my body decided it was time to develop antibodies to the infliximab! Was then changed to Humira and this was the best thing ever! It was like I had my old life back. After a year on I was finally in remission (2016) so the obvious solution was to take me off it to save the government money! Since then things have gone down hill again, my inflammation levels are through the roof and body is now not doing what it is supposed to with the 6MP. Was then told that they wanted me to go on weekly methotrexate injections. I did all my research and was hesitant about taking it but was willing to give anything a go. Anyway the day after the injection I felt like I was dead (luckily it was in half term-I teach so didn’t miss work) but I lost my entire holiday vomiting and feeling dizzy. I told my consultant that I didn’t want to take the next injection as I’m certain it is that which made me poorly. She wanted me to try another but I had to refuse as I know my body and I know what doesn’t work for me. After the 4 year history, let’s get to the point. I am now currently on no medication and have been for the last week. I am waiting for them to rethink my medication but I am anxious about what they are going to suggest next. Has anybody else had this similar kind of medication?

 

[ronroush7]

I hope they get you on some medication. Your body could be experiencing damage you are not aware of

 

[Jabee]

Did your doctors prescribe folic acid along with the methotrexate? It’s really important to take folic acid along with it. Have your doctors suggested prednisone as a stopgap until they decide what to give you as a maintenance medication? I don’t know why the NHS policy is to take patients off biologics as if the crohn’s has been cured, when it is a chronic illness.

 

[Lady Organic]

Hi and welcome.
Im am sorry about your issues. The decision your dr took to take you off Humira is beyond my comprehension I am sorry to say. Humira is a medication that is intended to be used to maintain remission, not only to be used short term. May i ask what country you are from for a dr to say this is too expensive for government to pay for you?
it is also important to be in harmony with our medical team. if you feel in recurrent battles with them, this is no good. For all those facts, i would encourage you to look a for a second opinon.
After Aza, 6-mp and methotraxe, the medications left in store are all very expensive medications such as Infliximab and Humira. if you cant tolerate methotrexate, the dr wont have the choice to propose Humira or another medication of this category again.
How about trying a half-injection of methotrexate to test it again? It is a possibilty you caught a bad virus or a food poisoning at the same time of your first injection...

 

[ronroush7]

I agree

 

[cmack]

Hi Milly17,

I'm not familiar with those drugs personally, but I offer you my moral support. I hope things improve.

 

[Milly17]

Hi
Thank you for the replies.
I was prescribed folic acid although not sure how it helped. I live in the UK and was taken off humira after my annual colonoscopy, my consultant said that the government won’t fund the drug if you are in remission as it is too expensive. They haven’t suggested any medication to take in the meantime.

 

[eleanor_rigby]

Hi Milly, I am so sorry this has happened to you. It is so frustrating that Humira was working and could have helped you all this time and possibly for many many years to come but instead they took you off it. There are drugs available to you but they are of similar expense to Humira.
I contacted Crohn’s and colitis UK about this very issue on Facebook. Maybe you should consider messaging them about it too considering they should be lobbying for us and should have our best interests at heart. Cost should not prioritise above our quality of life, wellbeing, etc. Plus there are so many risks associated with stopping and starting biological like Humira. Please read my correspondence with them here and consider private messaging them to share your experience too.

http://www.crohnsforum.com/showthread.php?t=82301

 

[Milly17]

Hi
This was an interesting read with no answer actually being reached!
After being taken off the mercaptopurine 6 weeks ago as it wasn’t working (inflammation levels were going up and very low levels were showing in blood) just heard back today that consultant wants me to restart it. Do you think I should question this as it didn’t work before?

 

[eleanor_rigby]

Hi
This was an interesting read with no answer actually being reached!
After being taken off the mercaptopurine 6 weeks ago as it wasn’t working (inflammation levels were going up and very low levels were showing in blood) just heard back today that consultant wants me to restart it. Do you think I should question this as it didn’t work before?

Hi Milly, how long were you on mercaptopurine for? There is a reason your doctor wants to put you back on this medication and that is because it is very cheap to prescribe. However, this drug comes with some rare but very serious side effects, such as cancer. There is a consensus among us with Crohn’s that the benefits of this drug outweigh the risk in that the risk of cancer and infections etc is small, and the risks of not treating Crohn’s is big (such as needing surgery). However, that only applies if the drug is actually working!! If the drug isn’t working you are getting all the risks from the drug, and all the risks of not properly treating Crohn’s. There are no benefits!

Have you been on Remicade before? I suspect that will work well for you given your success with Humira. I have heard of people being in remission for a decade or more on it. But it is just as expensive as Humira to prescribe. And if you stop and start it there is a risk you could become allergic so it is better not to start it unless you are allowed to continue it indefinitely.

I would fight for your access to Biologics. NICE state you should be prescribed Biologics such as Humira/remicade when you fail medication like mercaptopurine. If you get prescribed Biologics again and they help you I would not let the NHS stop your access to them without a fight.

 

[Milly17]

Hi
I have been taking mercaptopurine for around 2 years now. This was initially alongside infliximab (I had this every 4 weeks as my body was using it up too quickly then developed antibodies to it so was removed)
I was then put on the humira and kept on the mercaptopurine. After 1 year I was taken off humira and just left on mercaptopurine until around 8 weeks ago when I was told it wasn’t working so needed to go on methotrexate and to stop taking it which I did. Since then I have had 1 injection of methotrexate and no other meds. Just concerned of going back on it if it didn’t work the first time-what’s saying it will work this time?

 

[eleanor_rigby]

It sounds like on its own it isn’t enough to keep you in remission.

 

[Jabee]

Could your GI prescribe the Mercaptopurine with a steroid in the short term since it takes a while to take effect? How absurd to be back in this situation after finding a medication that works for you. In the long run preventive care is much cheaper than acute care. What a foolish NHS policy to discontinue biologics when they are working and risk patients suffering a serious flare.

 

[Deleted member 431298]

Hi Milly17, welcome to the forum.
I am sorry you are having such a rough time. I'd like to offer my 50 cents, based on experience (ie. please don't take this as general medical advice, it's just what I have found).
I went through a situation some years back where the biologics suddently were no longer an option. It wasn't due to the govt not wanting to pay, but due a pretty serious extraintestinal manifestation that could be caused by them.

Bottom line, I had to stop, and do with methotrexate (MTX) 15mg orally once a week, and folic acid. It took a long time to work, and I felt pretty bad. But eventually things started to improve. I had to be on prednisolone as a bridge drug, but was able to get off it, which was such a relief.
So, my current experience with MTX is that it works, but when I took it for the first time, or if I take a break from it and start again, I feel absolutely horrible for the first three or four weeks, then things get better.

Based on what I have researched, the way MTX works is different from biologics. Some docs call the effect from biologics "the parking lot effect" referring to patients getting better almost as soon as they leave the hospital after infusions. Remicade and Humira suppress the inflammatory response right away, and therefore symptoms. Commonly the mechanism of MTX is indeed also described as suppressing inflammation, but because it " reduces the production of pro-inflammatory cytokines by an unknown mechanism".

Some researchers, however, have been suggesting that MTX works differently:
by targeting a certain type of pathogenic bacteria, MAP that has been a suspect as a CD creating bug since the 1930's (and also cause "Crohn's disease" in cattle).
As I understand it, the researchers propose MTX cuts off the supply of folic acid to these bacteria, and that kills them.
In other words, MTX could work somewhat like an antibiotics.

If that is the case, then the initial worsening of symptoms could maybe be explained - and this is my hypothesis at the moment - by a die-off reaction (Jerisch-Herxheimer reaction). This phenomenon is well established in litterature about treatments of other types of infections.

Could it also explain why taking folic acid for a couple of days after the MTX helps - it slows / stops the killing, because now more folic acid is available to the remaining bacteria, allowing them to survive?? I'm just thinking out loud here.

When I take the MTX, though, and push through the bad days they seem to fade after a while on the treatment and I end up in remission. I speculate that it happens because after a certain number of doses the MTX has killed off most of the extracellular / active bacteria, and only the sleeping (dormant) ones are left, and they do not aggrevate the immune system (as much at least). By then the weekly dose only targets the few adventureous fellows who have awoken from their slumber during the past week, and that is fewer than would be present during months or years without therapy.

It could be, of course, that feeling sick from MTX comes from some sort of toxicity response, and the sickness fades because the system gets used to MTX after a while. Could maybe be a combination?

Before someone calls me an out-of-bounds pseudo doctor I'd like to stress this is only my hypothesis (based on NCBI published research, though). I am not recommending to press on if there is evidence the MTX is toxic or in other way harmful.
For starters I'd make sure to have the GI do bloodwork checking for any liver problems that MTX is known to be able to cause.

I recently tried to go without MTX for two month, got CD symptoms, re-started MTX three weeks ago. I've been miserable so far everytime I took the MTX, but my CD symptoms are significantly less.
(By the way, I tested positive for MAP or similar infection this spring).

Don't know it this helps, feel free to ask for more references (or read through the anti-MAP support group in this forum).

 

[David]

Hi Milly and welcome. I don't have much to add to the above but did want to take the time to welcome you to the community.

I hope to see you around