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Crohn's Disease
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Posted 6/29/2014 3:54 PM (GMT 0)
Sorry new to this site - so apologies if I'm going over old ground.

In summary having had this disease for 16 years (diagnosed 14 years ago) I have recently had a major flare up and moved onto Remicade. I believe that this has been licensed in the US signigicantly longer than the UK, I'd welcome any feedback on side effects. I seem to be experiencing a wide range... from minor such as hair loss... through to severe joint pain, muscle weakness (particularly hips and thighs), swollen feet, swollen face, severe exhaustion ... most of which when mentioned to the medical team they seem to shrug off. Having only just come off my fourth dose of steriods in 12 months... I feel I am declining rapidly .... and that Remicade is having no obvious benefit. One thought is drug induced lupus... does anyone have experience of this? Other experiences of this drug welcomed :-)

My added complication is despite having the disease so long I was blissfully unaware of the link between flare ups and DVTs. So after my recent flare up I was subsquently diagnosed (by a very on the ball GP who I believe saved my life) with bi lateral pulmonary emboli. With a long haul flight booked I would have almost certainly have not survived it. So now I'm on blood thinning drugs too (which helps no end with bleeding as you can imagine!).

Final question... (not sure if I'm permitted to ask this under the rules so realise it may be deleted) anyone have any experience of FMT and whether it worked? Unlike the US and Canada this is currently unregulated in the UK so information is limited.

Many thanks
Posted 6/29/2014 5:56 PM (GMT 0)
Duffle, Welcome to HealingWell. You've found a safe, secure, and reliable support community for people battling a range of health issues. We have many   fellow members here who will be glad to lend an ear, offer information, and provide support for when you need it. We are not professionals but peers just like you so if your topic requires a professional we may refer you to your Doctor. I do not have Crohn's but my husband does.  This topic, like many other topics, is one I have no experience with but I know it has been discussed on HW in the past and I suspect one of the members of this forum will be along who has knowledge of the topic. I did find some older links that discuss the topic and will post the links here FYI only.There does seem to be more discussion in the UC Forum re this topic. https://www.healingwell.com/community/default.aspx?f=17&m=2976478 https://www.healingwell.com/community/default.aspx?f=38&m=3035235   Again, welcome aboard
Posted 6/30/2014 12:26 AM (GMT 0)
How many Remicade doses have you had?

I started Remicade in Nov 2011, 6 months after being diagnosed. I didn't really notice how well I felt until I finally weaned off prednisone in April 2012. I had been on varying doses of Pred for 9 months, and ironically most of the pain and trouble I had during that time was from the Pred.

It sounds like you've had to deal with steroids a lot longer than me, as well as having the disease itself substantially longer so I'm sure that's going to factor into things.

As for side effects from the Remicade I can't say that I've had many. I tend to feel weak and have some joint pain about 5 weeks after an infusion as it wears off the past few times. I just had my first double dose (10mg/kg) June 10th after a colonoscopy showed only modest improvement, and had an anxiety overload a week later that made me think it was the Remicade but I'm doing a lot better and my GI believed it was the stress and not the Remicade.

Drug induced lupus is certainly a possibility, though I do not know how rare it is. I know there are blood tests that can determine if the Remicade is causing such a reaction. You'd have to bring it up with your Doctor.
Posted 6/30/2014 12:50 AM (GMT 0)
Is Remicade actually working for you? As in, putting your Crohn's into remission?

Me, I was on Remicade for a year from 2011-12; 3 months of that on a double dose. I had no side-effects from it, but it also did sweet FA for my Crohn's. A month after the first infusion, I was in hospital with the worst flare-up of my life. The surgeons actually wanted to operate on me then, but my GI argued for giving Remicade more time to work.

Long story short: it didn't. Over the next 18 months, I proceeded to be hospitalised a few more times and ended up being on steroids almost continuously. I finally got so fed up, I elected for a colectomy with permanent ileostomy, something I most categorically did not want to have. Which reminds me: for god's sake find out what your surgery options are sooner rather than later. I'm in the UK too, and if your docs are anything like mine have been, they'd rather commit hari-kiri than voluntarily bring up surgery with the patient. You can even ask for a referral to a colorectal surgeon: that doesn't commit you in any way to having surgery.

Going back to the side-effects, I was either completely intolerant to meds or pretty much had no side-effects at all. But some people have had side-effects so bad, they've had to switch to a different biologic. Not sure how long you've been on Remicade for, but if it's been a few months, I would ask about switching to Humira.

Re FMT: Honestly, my first instinct is to say don't bother. I take it you have Crohn's colitis rather than small bowel Crohn's? If so, meh, maybe it's worth a go, but I can't help you on that. Sorry.
Posted 6/30/2014 4:39 AM (GMT 0)
I had a FMT not for my CD, but because I got c diff 8 times in 3 years. It's worked great so far (only been about a month and a half). I'm also on Remicade, 10 mg/kg every 6 weeks. I feel crummy for a day or two after each infusion, but no other side effects. Between these two, my Crohn's has been doing better this last month and a half than in a long time! Lol, now for the rest of me, that's another story.
Posted 6/30/2014 1:10 PM (GMT 0)
NICECUPOFTEA:
I'm unfamiliar with the surgical options. Do you have a bag attached (ostomy?)?
Posted 6/30/2014 1:16 PM (GMT 0)
Scifigal2K:
I've had c-diff twice. Will you please keep us posted over the long term about the success of the fecal transplant?
Posted 6/30/2014 2:17 PM (GMT 0)
Sorry to hear of all your struggles, Duffle. I was on Remicade for a year. It worked initially for about 2 months and then became less and less effective as time went on. Thankfully I had no side effects. As far as the joint pain, I know you can get that from tapering off prednisone, at least I've had that. I believe you can also get hair loss from it too, but of course those may also be related to the Remicade. Also it could just be the disease itself, I get joint pain and swelling from my Crohn's. How long have you been on Remicade?

I had FMT done for my Crohn's colitis. Unfortunately it didn't work for me. I had it done via colonoscope for the first one and the "supplemented". There is a thread about Dr. Borody's paper on FMT for Crohn's, you should look at that. It discusses why it may or may not work. For Crohn's it doesn't seem to be that successful, for UC it seems to be more so, but most likely you'll have to do repeat therapy to continue the benefits. You also may have to have a "compatible" donor, whatever that may be. Unfortunately we are still figuring a lot out as far as the micro biome and how it affects Crohn's. I have read of a few cases of people with Crohn's who got into remission from FMT, but it was after repeated FMTs. Dr. Borody's paper suggests it may have to be repeated for a very long time.
Posted 6/30/2014 2:37 PM (GMT 0)
Duffle,
Sorry to hear about all you have been through. I wish you relief!
Posted 7/1/2014 1:22 AM (GMT 0)
My Gi and rheumy are pretty certain I had drug induced lupus from Remicade. I only had two doses, but experienced fatigue and worsening joint paint. I saw relief after stopping it. Speak up and make sure your doctor knows how much it is affecting your quality of life. I wound up switching GIs because the one prescribing the Remicade was unresponsive/indifferent to the side effects I experienced.

Good luck!
Posted 7/1/2014 5:16 PM (GMT 0)
Thank you all so much ... More than anything it is great to know you're not alone (on those dark days). Family are great but always feel guilty about 'going on' so others who understand are so welcome.

Only on remicade (infliximab) since April and, no I don't think it is working. But sometime it's scary to admit that when options are limited.

Nicecupoftea ... Earl grey personally :-)... I'm unable to get my head around the surgery options. Long story ... But I admire your pragmatic approach and hope if I need to go there, I'll be able to have a balanced view. Not there yet.

Thanks also for the FMT responses ... Over the years there have been so many 'odd ideas' that have come and gone quickly that I wondered whether this is the latest (many years ago I was offered a place on a thalidomide trial which as I was still of child bearing age I declined ... That never amounted to anything!). Octobergirl ... Thanks for the heads up on the FMT thread.

Wish you all well x
Posted 7/1/2014 7:24 PM (GMT 0)

ScienceGeek1234 said...
NICECUPOFTEA:
I'm unfamiliar with the surgical options. Do you have a bag attached (ostomy?)?

Yes I do, but unless the entire colon is affected (which mine was), you are very unlikely to need a permanent ostomy. Most people have a resection, but in my case there was no healthy tissue anywhere in the colon to attach the small bowel to.

Duffle said...
Nicecupoftea ... Earl grey personally :-)... I'm unable to get my head around the surgery options. Long story ... But I admire your pragmatic approach and hope if I need to go there, I'll be able to have a balanced view. Not there yet.

English breakfast >_>.

No need to rush to have surgery, particularly if it's been discussed already. I just didn't want surgery to come as an unpleasant shock to you as it did with me.
Posted 7/26/2014 7:30 AM (GMT 0)
In case it's helpful, please see thread on the UC forum - I had severe joint pain, stopped remicade, dealing with lots of troubling side effects & test results still on process. Rheumatologist has been much more helpful than GI, at this point.

Duffle I hope you feel better soon. Hang in there.
Posted 7/26/2014 3:46 PM (GMT 0)
Hi Everyone,

I am also new to this forum. Remicade worked wonders for me for 3 years until I developed pustular psoriasis from the use of the drug. I was unaware when starting Remicade that this could happen. It took months to get the pustular psoriasis under control and was extremely painful and embarrassing. It covered the bottoms of my feet so walking was difficult. A year and a half later the psoriasis is finally under control, although not gone. I do not experience the pain or pustules that I initially was for the first 9 months or so. I am now taking humira & imuran and doing fine. I keep my fingers crossed that this drug combo continues to work for me.
Posted 7/26/2014 7:19 PM (GMT 0)
Side Effects they didn't want to hear or believe what I was experiencing. Forget the muscle and joint pain, there are drugs for that. Remicade screwed my memory up pretty good. Two years later, I'm still not right.Tried Cimzia ,what a waste of money and time. Just went for the surgery. Been 14 months since the surgery, starting to feel the Crohns again.

T
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