Infliximab

[soupdragon69]

Hi everyone,

Had my Infliximab/Remicade yesterday and the gastro specialist nurse came to see me.

She is now talking about my starting something like Methotrexate (keeps being raised I know) but not just for my Crohn's but for my muscle, joint and nerve pain to try and manage it more effectively. She also thinks I need to go and see someone in Rheumatology too. Time will tell.

What WAS interesting though was she went to an IBD conference in Belgium a couple of weeks ago. She did a poster presentation on pain levels and management of it. She said it was welcomed right across the board in relation to pain suffered by IBD patients not being acknowledged. That there are three groups from what she can see. First, have pain that stops once in remission. Second, have pain that is intermittent once into remission. Third group have pain whether in remission or not. Whether its of IBS type, IBD type or other pain. She says not enough is done to provide adequate opportunities like relaxation and alternative therapies rather than just medication routes. We had a long discussion about my own pain levels from that and how there are days its the pain that wears me down not always running to the loo. Felt tons better after telling how I really have felt and how I end up in tears at night before sleep or waking in tears because of severe joint, muscle and nerve pain on top of abdo pain.

Another thing she raised was it may be possible to decrease my Infusions from SIX weeks to FOUR weeks. Anyone heard of this?? She said the National Institute of Clinical Excellence (NICE) here in the UK have also changed their guidelines in that patients can now have up to 10mg/kg rather than the current 5mg/kg. I was totally stunned at this one. She also said that if I am optimised on the Remicade then they may swap me over to Humira soon.

She wants me to email her easter week after the hols to let her know how I am after my infusion yesterday and since it then she will speak to my GI cons.

Just thought this was worth flagging up about the pain management aspects and also the changes in number of weeks for Remicade if needed. It has certainly got me pondering...

 

[Kev]

Well, pardon me for being a bit 'muddled', but in reality isn't she talking about increasing your remicade (think I'll use that term as it seems more widely known) instead of only every 6 weeks, you might be getting it every 4, and possibly at a higher (double) dosage? So, the interval is descreasing, but the meds are given MORE frequently,,, and possibly at 10 mg per kg of patient mass.. I wonder how those periods and dosages are in comparison to someone taking it for leukemia, or other chemo treated ailments? And, has anyone done any long term studies on the effects at those dosages/intervals? and, just to complicate those questions, they ARE considering adding metho into the medicinal 'stew'. I'd say the really shocking news is that understanding, separating the associated pain from the disease FROM the disease itself is just recently being acknowledged or considered by the medical community... ah, better late than never I guess.

Anyway, all the best. Let's hope that sometime in the near future things do a turn around for you... At least if it doesn't, then its comforting to know that your team is thinking ahead, and outside the traditional 'box'.. Take care

 

[butt-eze]

Well Jan...

I don't really know how to respond. My next choice medications are methotrexate or humira. I'm not thrilled to do either but mostly because it just means I am one medication closer to trying them all. I'm afraid of running out of options.
So, I guess I would support trying more frequent infusions of remicade first.

I feel that Crohn's patients are all guinea pigs to determine what medications/doses will work well for others? I suppose this happens with other diseases but when it's happening to you/us it stinks!

Please let us know what you decide and if your doctor encouraged you one way or the other.

Amy

 

[TammySue62]

Hi Jan
I was on Remicade for yrs at the 10mg dose but could only receive it every 8 wks. It just stopped working for me. So the Dr. suggested that I try Humira which I did. But now have stopped that also just after 4 mtns of that My hair was falling out in gobs and gobs I had trouble breathing too . All in all I just wasnt getting any better . So my question has been can I go back on Remicade. The jury is still out on that question. Meaning I have not herd back from my Dr as of yet.
I also asked my Gi about LDN that was outa the question. He has never herd of it so I proceeded to tell him and his answer was still no.

 

[soupdragon69]

Kev, Yes they are looking at increasing both dose and frequency. As for the metho I havent been offered it yet as it is being bounced about for more than just my crohn's....

Amy, Thanks for your comments I really appreciate them. I will let you know as you ask. Would also like to know how you get on too with your choices once you have all the info if thats ok?

Tammy, Hi There! The aspect of my hair falling out isnt one I had thought of with the Humira. Its very much swings and roundabouts with all the drugs we take isnt it? My hair has fallen out and gone from really thick to really fine over the years and I keep it short purposely because any longer it looks awful as it wont hold any style no matter what products I use.

 

[Kev]

Hey Soup... I would have suggested trying to get your doctors response to LDN as a trial.... but considering all of the issues going on, I don't know if that approach would be satisfactory, let alone even considered by you, he/she... IF you did want to take a chance on it, then printout the page from the American Journal of Gastroenterology... think it would carry more weight. I don't even know if this would be a good fit... I just hate the idea of you running short of options... And you know how I feel personally about metho... But, then again, apparently my GI feels that LDN is safer a risk than metho... Not sure what that says for our 'approved' drug options.

 

[saidinstouch]

I was on 10mg/kg every 4 weeks for about a year. It worked great for 3-3.5 weeks at a time then it slowly trailed to 2.5-3 weeks and I switched to humira.

 

[soupdragon69]

Hi Kev, I think it is time I looked closer at the LDN aspects. I know what you mean bout the metho too... I was researching it again today and it makes me cringe but then again there are so many side effects with the meds we take its figuring out what is the lesser of the evils for each of us isnt it - as in what works with the least impact on our quality of life side effect wise.

Hi Saidinstouch, Its interesting that both you and Tammy had the 10mg/kg as it seems its only being introduced here at that level. I also found it interesting when you mentioned the time span decreasing. I realised going from 8 to 6wks that my 2wks of sliding are now starting at 3.5-4 instead of wk 6 if that makes sense. Will keep an eye on that aspect.

Thanks everyone for your response its nice to know am not on my own on this one..

 

[Kev]

Hey, don't get me wrong with my 'blanket' statements regarding metho. If the LDN doesn't work, then it's my next step.. I wouldn't be jumping for joy at the thought.... unless it worked. Even then, I would continue to worry about the side effects.. but I think that's a natural reaction, and as long as one got any required bloodwork, etc., done; kept monitoring for adverse reactions; its something one could live with.. slowly work to the back of the mind.

 

[Digits]

I was on remicade every 6 weeks, 5mg per Kilo, for about 4 years, then to humira (2 shots every othe rweek) then back to remicade, now at 10mg per kilo every 4 weeks. so it is possible, and is being done. Ive noticed that Alaska GI's refer more to canadian and UK procedures, than the rest of the USA, which is odd.

just talk it over and whatnot.

 

[soupdragon69]

Kev, there was me thinking you wouldnt have it no matter what! ;-) Don't worry I knew what you meant all along..

Digits, thanks for your thoughts I really appreciate your input as it was something I hadn't heard of yet.

 

[Kev]

Yeah, I would resort to it... not my 'last' resort, but definitely not my 1st choice either. Here's a question, thrown out to anyone on the Forum who might know; or perhaps one you can run by your doctors/consults. Metho is available in pill form as well; but most dr's opt for injection. I wonder why.. I'm assuming there must be a sound rationale behind the preference, but it would seem that; just for the sake of ease of use, or proper storage, that a pill form would be 1st choice. Perhaps the pill version is less suited for the treatment of IBD; or perhaps there are potential stomach issues. I dunno... the 'vagueries' of modern medicine overwhelm me at times...

 

[soupdragon69]

During my research I discovered they will opt for injection into muscle as it then avoids the nausea/vomiting that some suffer.

May be other reasons I haven't seen, but it's one thought Kev.