6mp ? Humira ? Confused. Terrified.

[worriedboy]

Hello Team - I need your advice ... :sign0085:

Recently I had been to my GI and GP And I have to begin a steroid-sparing treatment
The GI more or less let me choose between immunosuppressants and biologics..l being conservative I went for 6mp. So there I go with a round of doctors and blood work etc...

And here is the deal : My LYM count baseline (i.e. has been so for years now) is 0.6-0.7 k/ul . So I started wondering :

- If with Crohns there are too much white blood cells - how is it that my LYM count is low ?

- If I take 6mp, I guess it will lower my LYM count even more - what is the limit ? I am really worried about that !

- Should I prefer a biologic, which targets the TNF-a, thus to my understanding wont effect my WBC count ? And also, maybe has a better chance to work for me ?

I am trying to consider the gain vs risk of each of the meds but I guess I just lack the medical knowledge. Basically my GI didnt mind me starting 6mp and he said that if it wont work well we will add up Humira on top of it.


I am so confused and terrified by starting those meds
On the other hand I feel that if I would like to lead a normal life (or something close to that) without keep on steroids than I really got no choice...


Any help is much appreciated, both practically and emotionally.

Thanks guys,

Worriedboy

 

[alex_chris]

It is debatable whether 6mp is the more conservative drug compared to biologics such as Humira or remicade. Both have side effects, thankfully severe side effects are rare for both categories of drugs. All unlike corticosteroids where short, medium and especially long term side effects are actually common rather than rare.

In any event, anything is better than constant inflammation. Just looking at statistics of north of 70% of Crohn's patients needing surgery at some point... While many such patients could have avoided getting worse by long term treatment from the start.

It is a bit odd that your doc did not give you an overview of both choices. One fact is, biologics are just more effective in every way compared to azathioprine. The latest AGA guidelines http://campaigns.gastro.org/algorithms/IBDCarePathway/ look at whether you are a high or low risk patient and treat people based on that assessment.

As to a low lymphocyte count, the real question is where your leucozytes are. And if they really are low from the outset, don't worry, you already start with a low dosage and do regular blood tests from the outset.

Having said all that, if I had never used azathioprine and had problems now and would have to decide, I would go for humira, just because it is much more likely to help with getting to and keeping in remission. 6mp can be added if required.

 

[worriedboy]

Thanks Alex_Chris for the quick reply.
Actually both my GP and GI tend to Humira, I just thought that maybe 6mp would be "enough".
My GP then said, well alright lets start 6mp since sometimes he gives it anyway during the first year of biologic treatment in order to reduce the chance of developing antibodies...

So much data and I feel so lost

By the way - why you being on Aza in the past made you pick it up again ?
Is it because it has proven itself for you in the past ?

Thanks again and all the best.

 

[alex_chris]

If both said humira, quite honestly I would follow their advise. And adding 6mp as part of combination theory can make sense too, depending on how severe your symptoms are.

I started azathioprine back in 2003 when the only biologic around was remicade and at least in Europe they were reluctant to use it except for the top 5 percent "worst" cases, which I believe had more to do with costs than anything else...

I phased out azathioprine on the advice of my then GI in 2008 although it had worked modestly well (I have to say modestly, as I had used less than the effective 2mg per kg dosage for those 5 years...). I went nnearly 2 years without it and did ok initially but pretty bad in 2010. I went back on it and improved, but slowly initially, getting worse in between and thought about going for Humira in 2011. But then in 2012 I also added various other long term management strategies and especially targeted my irom deficiency I had had since 2007 and have been in good remission since then pretty much, although when I tried to phase out aza again a few months ago, I got into troubles again - so phased it in again and am fine once more.

 

[SupportiveMom]

I agree with alex I'd follow doc's advice and do Humira with a 6mp. Humira can take up to 6 months to kick in. You can always look at taking away the 6mp if things improve. Most docs won't take away the biologic though unless there are other reasons so expect to stay on it. Humira isnt that bad. Stings a bit but look in the kids area or search Humira for tips on how we have given it to our kids to minimize pain.

 

[lilac]

I was on 6mp for nine years and it done wonders for me. I got fatigue but you learn to manage that. I also got a few warts (apparantly this is a RARE side effect) but consultant reduced the dose and they went away pretty quick.

I'm on humira just now. I have a "good" week and a "bad" week (I take it fortnightly). No side effects for me with this one. The loading dose made me feel amazing but you get a quarter of that to maintain you if it works. It cacn be increased from there if it doesn't.

Maybe not a lot of info there, but hopefully it provides some insight for you

 

[worriedboy]

I was on 6mp for nine years and it done wonders for me. I got fatigue but you learn to manage that. I also got a few warts (apparantly this is a RARE side effect) but consultant reduced the dose and they went away pretty quick.

I'm on humira just now. I have a "good" week and a "bad" week (I take it fortnightly). No side effects for me with this one. The loading dose made me feel amazing but you get a quarter of that to maintain you if it works. It cacn be increased from there if it doesn't.

Maybe not a lot of info there, but hopefully it provides some insight for you

Hi and thanks for your reply. wow ! 9 years is a good run alright ... why switch to Humira than ? had the 6mp stopped working ?

 

[worriedboy]

Thank you for your prompt replies.
My doc advice was to start the 6mp, and if that one doesnt do the work we should add Humira on top of that.

I was completely satisfied once we agreed upon this strategy; however, since then:

1) I had the complete blood work and saw my low LYM count and it has jumped to my mind that 6mp effects the WBC count; if I understand corretly this is not the case for anti-tnf-a drugs which target tnf-a cytokin and thus isnt supposed to effect the WBC count.
-- So maybe this make Humira a better choice for me in the sense of safety ?? --

2) Being on a long run pred., I'd like to taper it off already. I read here that Humira tends to kick in pretty fast most times, sometimes even after 1st or 2nd dose, whereas 6mp takes 3 months on average in order to build up ...
-- Maybe going "straight" to Humira I could benefit 3 months off of pred ? --


Please forgive me if I am repeating myself. I am in this dilemma and it just wont let go, day or night - it is in my mind.
I sometimes tell myself to start already with the 6mp and the other times that maybe I should talk to my doc that I'd rather go for Humira straight forward.

Any further insights regarding the above are hugely appreciated.

Many thanks guys. It's wonderful to be a part of this forum; I'd feel so much lonelier without it.

 

[alex_chris]

Please forgive me if I am repeating myself. I am in this dilemma and it just wont let go, day or night - it is in my mind.
I sometimes tell myself to start already with the 6mp and the other times that maybe I should talk to my doc that I'd rather go for Humira straight forward.

I would reiterate that going for Humira straight ahead makes more sense in your situation. As you rightly say, you want to get off the corticosteroids and unfortunately 6mp will not get you into remission, it will just help you stay there - in contrast humira can help to get you in remission. It is also more effective in the long run. On the lymphocyte count, personally I would not be that concerned (as is your GI as far as I understand), but if it is a concern for you, then just don't start 6mp. It is debatable whether combination theory (e.g. humira and 6mp) is really the way to go, except for severe cases of Crohn's. In other words, I would start Humira, taper down the pred and see how it goes. If it doesn't go well at all, you can revisit the 6mp question (to be added to humira).

 

[lilac]

Hi and thanks for your reply. wow ! 9 years is a good run alright ... why switch to Humira than ? had the 6mp stopped working ?

The 6mp just stopped working. Got started on Humira with limited success but my consultant believes methotrexate and humira are a winning combination. I've yet to feel it but to be fair I've only been on humira 4 months and MTX 2 months - both take about 6 months to work I believe.

On a side note NICE (not sure if you live in the UK or not) have issued an update to the clinical guidelines which is worth a read

 

[Polaris]

I've been on Humira for a year now and haven't had amazing success (still have notable inflammation in my terminal ileum, but it hasn't spread), so my GI just started me on 6mp a few weeks ago. Like you, I'm also scared to be on these meds, but I don't know that I have any other choice. It's hard because you feel like you're walking blind into this. We don't know what will work.

 

[Desperatemom]

Any decision you make is scarry at this point. Its like getting to a fork on the road and having to pick. Im going thru this with my daughter right now. She just started Remicade but had a rare side effect about 24 hrs after infusion. Waiting for antidoby blood work to see if she can continue with Remicade. Like others said, you have to pick what will make you feel well. Good luck!

 

[M West]

I understand your hesitancy to AZA with the Humira.

I have been on Humira (40 per week) and AZA (100 mg per day) since 6-1-2014. The combination has just begun to work as of 2 weeks ago. Very little pain and noticeable drop in BM per day.

I am 63 years old and have had CD since I was 19. Surgery is no longer an option for me as I have short bowel. Had these new drugs been available at the onset, my CD probably would have taken a different path. (shoulda, woulda, coulda)

Please keep your bloods checked regularly. Should you decide to go this route, be patient for the drugs to kick in.

You have my best wishes.

Miles