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Methotrexate

soupdragon69

ele mental leprechaun
Ok guys here we go again,

My liver function is deteriorating on the increased dose of imuran. My GI increased it to 250mg a month ago in two stages from 200mg to 225mg then 250mg every two weeks.

Have been at 250mg for two weeks. Had my bloods done yesterday before my remicade infusion and got the results today...

My gastro nurse and my GP tonight want me to drop my imuran to 200mg and a further drop to 150mg next monday if things are no better.

My GP has said I may need methotrexate instead as I still havent reached the goal of a white cell count below 4 which my GI wants.

Anyone had any experience with Methotrexate?? Thoughts appreciated on this one.
 

Kev

Senior Member
Hey soup.. sorry to hear of your problems. I have 0 info on metho, I'm trying to avoid it myself (so I won't comment, as I've a feeling that I'm biased against it). Anyway, I'm assuming that your dr's are going the imuran taper route AS they'd prefer to keep you on imuran.. if your liver will tolerate it AND your white count reaches goal. Is it just my bias talking, or do their methods clearly indicate that metho is a second choice?

Anyway, fingers crossed. All the best. Keep us posted on how you make out...
 

soupdragon69

ele mental leprechaun
Hey Kev,

Its fine, thanks for the thoughts though I do appreciate it! From what I have read of the metho it may give me grief on the asthma front as it can cause inflammation in the lungs and I have recently stopped my Pentasa for that reason and my GP thinks I may be an aspirin sensitive asthmatic on top of everything else lol

Am not keen on the metho so thought I would post here and see if anyone had some thoughts... Time will tell eh?
 

Kev

Senior Member
Well, maybe I'm being crazy (yeah, like that's not a definite) but personally I'm trying for the LDN, with my 2nd choice being metho. Why? I like the positive info I've seen on the LDN, and the low dosage risks associated with it. Tally it all up, and those 2 pros more than make up for it being relatively new to IBD. I might not be so fool hardy if the drug itself were new... but its been around. If both metho and LDN had the same history in treatment of IBD, my guess is that most GI's would consider the LDN choice a no braoner.
 

soupdragon69

ele mental leprechaun
I havent read up much on the LDN yet but will soon. What I have read there are issues on the peripheral neuropathy front?? Anything else??

But I think what you are saying is fair comment. Can feel some heavy reading coming on!!

We seem to be playing leapfrog on several fronts tonight - having fun? lol
 

Kev

Senior Member
Now see, there's a game that one plays as a child.. but society frowns when we play it as adults... Don't mind me, still pouting cause I wasn't up to going to a Halloween costume party last nite. How often does one get a chance to party with Marilyn Munroe or Cher? Or the big bad wolf dressed as grandma? Besides, I only had 70 trick or treaters show up last nite, despite the 'great' weather AND that I'd planned on twice that number. Now I've a ton of sweets sitting next to the front door just calling to me, and I dare not touch them in my condition.. SIGH! Nor give them to the dog.. Maybe I could use them to bribe my gastro... she is a woman ;-)
 
I have a friend who has RA (rheumtide arithritis) and he has been taking Methotrexate for 8 years; and he said he didn't have any bad issues with it. the only thing is not to get pregnant with it (male and female). His wife got preganant while he was on it, and she had to terminate the baby :(
 

Kev

Senior Member
Good point Mazen. I'd also heard that it is advisable to wear a surgical mask if dealing with crowds or people who are ill. Even if its' a partner who is sick.

That's one of the things that makes me a little leery of metho.. among others. I'm not crazy about becoming an erzatz bubble boy at my age...
 

soupdragon69

ele mental leprechaun
Yes I agree with you Mazen about the pregnancy aspects. I have already gone down the road of an implant in my arm rather than the pill as am not convinced I would absorb it well otherwise and I am warey of ending up pregnant on the imuran and remicade already. So shouldnt have a problem with metho... I also have concerns about the genetic aspects of passing Crohn's on because I have such difficulty getting into remission so will take ALL precautions necessary.

Feel enough of a bubble girl now as it is, all my colleagues at work and friends run a mile from me if they have colds etc - but guess who only ever gets a cold once in a couple of years anyway!! arrrrggghhh
 
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Kev

Senior Member
Well, implants will avoid pregnancy, but the other aspect of metho therapy is that, aside from catching a 'bug' from someone while taking it.. the drug can also pass from the patient to their partner during intimacy... requiring more than an implant as a precaution. Condoms, dental dams, what have you. Its another aspect of this treatment that makes me reluctant to opt for it, and adds to the 'bubble boy' mentality. I mean, give me a break...
 

soupdragon69

ele mental leprechaun
Yes I agree Kev, that's why I said ALL precautions necessary. Can't win sometimes can we?

I am hoping in all honesty that I wont have to go down the metho route but am just trying to get my head round it at the mo as I always need time to think things through so I can ask the dopey questions and others of my docs if that makes sense?
 

Kev

Senior Member
Years back, there were a series of farcical comedy films called 'Naked Gun' It starred Leslie Neilson (a Canadian) and Priscilla Presly (Elvis's ex). In one slap stick scene, these two were in the bedroom, draped in full length condoms. It was pretty funny at the time, altho not mensa type humour. It ain't so funny anymore. I've lost a lot to this disease, I'm digging my heels in at this one...
 

soupdragon69

ele mental leprechaun
I remember the scene well Kev! Can understand why you feel as you do though. I have been going through the mill in recent weeks, feeling the strain of having several chronic diseases and just wanting it all to stop so I can have some stability and a break from it all...

I know at the end of the day there will be some light at the end of the tunnel but it has just galled me recently how much I have had to adapt and fight to get where I am and then I get kicked yet again by one or other condition and work are on my back constantly because of the time I have had off this year - with another 2 weeks off for asthma at the end of October so have concerns they are gearing up for medical retirement or something similar.

I am on the upturn again but am tired of the battle at the mo - its keeping a balance mentally and emotionally to cope with the physical rollercoaster isnt it? Other aspects like we have mentioned already on this thread are just the thorn in the flesh! ;-)
 
M

MarkyB

Guest
Well Kev here's something to add: I am under a Crohn's Specialist and a Rheumatologist (for Arthritis). My Crohn's guy swears by Azathioprine, my Rheumatologist swears by Metho. At present I am taking the Azathioprine. I was told by my Crohn's Specialist that Metho is far more damaging to your Liver than Azathioprine, and it had to be given by injection on a weekly basis!! It's hard to know which "Specialist" has it right???!!!
 
This is the kind of obvious contradictions that most any of us run into. It seems the medical community can get caught up in favorites without using a logical thought process. I would hope that they have thoroughly investigated all medications that are used. I would hope that was the case, but I would not assume that is true.

The answer as to which is best, is the one with the least risk that works for you, whichever one that would be. There can be other factors to consider also, but the same principle applies.

How is the Azathioprine working for your Crohn's Marky? Is it helping the Arthritis also?

Soupdragon has had liver issues with Azathioprine (Imuran), and is being told the opposite .

Time to do your own research, something stinks here.

Hope you both get something effective soon.

Dan Bergman
 

soupdragon69

ele mental leprechaun
Hi Dan,

Not quite being told the opposite as I see it... Metho is used as an alternative when azathioprine doesnt work and its seen (the azathioprine) as the better of the two drugs in relation to Crohn's.

From an other diseases perspective however Metho may work better for them systemically.

For me the bigger issue with metho will be breathing problems because it is a known side effect and I am already a brittle asthmatic. Aza also carries a risk of breathing probs but sometimes you rob peter to pay paul dont you?

I have my bloods repeated tomorrow and get the results tues so we will see if the drop back to 200mg has helped my liver settle down any. If not then the next move will be back to 150mg according to my GP and gastro nurse.

I am due to see my gastro cons soon and just waiting for the appointment so will be grilling him over everything too!
 
If that is correct, then Marky is taking the right course of action.

Thank you for setting the record straight Soup Dragon.

Dan Bergman
 
I also had liver problems with Imuran till I lowered the dose to 50 mg, and I once asked the doctor about metho, and he said it's not proven very effective for Crohn's. The best option if Imuran doesn't work he said, is Remicade....
 

soupdragon69

ele mental leprechaun
Hi Mazen,

Yes I agree with you on the remicade aspects and I have just had my 5th infusion on Tues last week.

My liver test results came back today and a GP at the surgery was trying to contact me all day apparently. The results are still climbing upwards. Was called to go and see the GP this evening as my usual GP is off this week. I have to drop my imuran from 200mg to 150mg tonight. She is also going to contact my gastro team as they have said I cannot be seen by my consultant til January and she thinks this is too far away and also asked me if I had considered surgery - groan.

We will see what happens eh?
 
I have had no experience with Metho or Immuran but my GI said Immuran was a possibility, following my resection. Sorry to hear it's not working out for you. What a rollercoaster you have been through lately. What kind of surgery were they talking about? Shouldn't they give Remicade more time to work before thinking about surgery?
 

soupdragon69

ele mental leprechaun
Hi Sojourn,

Good to see you around again!

On the surgery front its the same old argument as to whether I have strictures or not and if I do what is the remicade doing for them if they are not inflammatory based? I am also aware that remicade is not good for structural/fibrous strictures... When I was in hospital in July they argued that I could have between 1 and 4 in my ileum above my terminal ileum and couldnt be seen by the scope. They took my case to a "team" meeting at the time so the surgeons would be aware of me but they decided not to do anthing at that time.

I think the Remicade is working but I have been so ill for so long it isnt working as fast as they think it should. Whether I have strictures or not will only be proven with time in relation to whether things get bad enough for action to be taken or I obstruct at some point..

My gastro told me 5 weeks ago when I saw him that he thought I had the potential to deteriorate very quickly and that my crohns was of a grumbling difficult to control type and he wanted me monitored more closely. He booked me for the gastro nurse 2wks after I saw him and also said he wanted to see me after my last infusion tues week ago. Since that the gastro nurse has come back to me and said he cant see me til January unless I have any major problems.

Thing is she knows my liver function is deteriorating and also that we stopped the Pentasa about 3wks ago because it was impacting on my asthma and blood clotting. So how bad do I have to get for him to see me?

Time will tell wont it..
 

Kev

Senior Member
Hey soup.. just a hunch, and I could be way off the mark, but my experience has taught me that sometimes nurses will take it upon themselves to 'juggle' a doctors schedule w/o being privy to all the details. i'm not knocking the nurse role in health care provision, but sometimes.. when they are working for the doctor, they'll place the doctors position above the patients.. it's a natural thing. Now, when working for a clinic or a hospital, just the opposite seems to occur.. nurses will go to bat, and more often put the patient ahead of the physician. I don't think i'm saying anything you haven't experienced first hand.. just may be that being in a similar role in the past, your'e too close to the situation.. may feel kinship to this nurse so you don't feel comfortable making waves, putting yourself first... Problem is, you HAVE to put yourself first, regardless of the nurse, the doctor, or the doctors other patients or workload. It's ok to be selfish at times like this... What do they say? The squeaky wheel gets the grease... Maybe it's time to start squeaking more, and a bit louder.. Just my 2 cents... or is that tuppence? worth. Take it for what its worth..
 

soupdragon69

ele mental leprechaun
Hi Kev,

I have never put doctors first in my job - yes I respect their knowledge base etc but have always been a patient advocate. Its because of the heavy workload I know goes on in ALL disciplines I hate adding to the problem....

However! I spent the day playing email pingpong with my gastro nurse. The final agreement is I decrease my imuran to 100mg tonight. She has faxed info through to my GP for first thing in the morning that I am to change over to 6MP. But I questioned whether the fact that just taking the 6MP rather than my body having to convert to it from imuran would do anything for my liver function tests!

She then came up with another trial that another cons is doing (and I said no) in relation to T cells but know no other details about it.

She then said I might need metho. I said prove to me why and tell me about the impact.

She then said you need to come into clinic to discuss it further. She also said I could be one of those folk that just dont respond to aza etc and thats why the high doses dont work and why my White Cell Count has never got below 4 as my cons wanted. Funny that I thought... So I got what I wanted in the end.

Am not feeling too great at the mo because of the liver probs but cannot afford to take time off work now because work officially served me with a capability procedure this afternoon in relation to my time off sick this year.

Am meeting my union rep tomorrow morning to discuss our plan of action. She has already told me if my employers win this I will lose my career too because they will notify my registration body that I am unfit to practice even though all my medics say I am!
 
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Kev

Senior Member
Hey Soup.. See? Your own words stated much better than mine the position you are putting yourself in. Paraphrasing... knowing the heavy workload.. you hate adding to the problem. Thing of it is, that's their problem, not yours. It would be a different matter if you were gaining ground.. not slipping, right? OK

As for the career... jeeze, never rains but it pours. I hope it all works out the way you want it.. Failing that, that it works out for the best for you. I know that may sound a trifle trite.. it isn't. when my career that I'd worked on for the past twenty + years went by the wayside, it literally tore me up inside far worse than any surgeons scapel. Like the disease and the world I knew was conspiring against me... Well, the career is gone now, and I've survived. Even thrived a little. Think I knew in my heart that it just wasn't to be, but I never anticipated the relief I was eventually able to feel knowing the workload, the pressure, the battle I was waging to keep it, was suddenly gone. mind you, I miss the people I worked with, and the great paycheques, and those marvelous medical insurance benefits. But the reality is that I was able to come up with something, something I can work my disease around, and vice versa. Financially its' not the same, and career wise it's admittedly (sp?) less satisfying.. but physically it's sooooo much easier on my health, and it's satisfying in having a job that my disease (so far at least) hasn't been able to prevent me from doing. You know what I mean? It may be childish to some degree, but I get a certain satisfaction of being able to work and thumb my nose at IBD for a change.
 

soupdragon69

ele mental leprechaun
Yeah Kev I know what you are saying and sometimes we are all good at cutting our noses off our faces by driving ourselves on past the time we should have stopped. I just dont feel ready yet to call it a day... and dont want work making the decision for me either.

This week they have said I must not have any more sick leave in the next 4wks and they will review me on 11th Dec. I also have to take a days annual leave every week so I only work a 4 day week as they think by giving me an extra day to rest I wont end up sick again! The union and also Occ Health Cons have helped immensely. Not out of the woods yet but will see what happens.

Gastro have caused me loads of grief too and it ended up I finally caught up with my GP today and he used to work with my Cons so said he would ring him and let me know later today. The upshot is my app is now next Tues at 1pm before my cons commences his clinic normally. They stopped my imuran last Thurs by sending a fax to my GP surgery after the surgery had phoned to tell me I was changing to 6MP instead. It was such a whooha!

My asthma cons and GP are both really concerned that I am now down 2 out of 3 of my Crohns drugs with just remicade to sort me out and I didnt respond as well after the last IV.

Both have mentioned surgery again to me grrrr.

Will see what my gastro guy says on Tues re metho, surgery or going back on imuran.

One thing is for sure I dont do things by halves!
 
S

Shane

Guest
This nasty drug has caused inflammation in my liver. I'll never go near it again.
 
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