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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Remicade stopped & replaced for Rensima in UK by NICE.


08-18-2016, 11:45 AM   #1
Jomar_uk
 
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Remicade stopped & replaced for Rensima in UK by NICE.

Hi

NICE in the UK decided to switch to the cheaper Remsima in tge BHS. After 3 years on Remicade without any problems. Maybe a coincidence but I was one of the 1st if not the first to be switched over. Although it is a "similar bioligical" whose active ingredient is still infliximab I am informed, it didn't seem to have the same "oomph" for me. I have had 2 infusions so far.

It may be a coincidence, but whilst my wife and I were celebrating our 49th wedding anniversary, yes, you have guessed it. I have my first major "flare up" that hospitalisation and ct scan showed small bowel obstructions where my strictures are (near the terminal ileum). This is the first time in just over 3 years this has happened so just a tiny bit down & concerned. Seems too much a coincidence.

I see my GI Consultant this Monday and gave my 3rd infusion of Remsima the day after and will be really asking why this has happened if the new drug is all but "biological identical"!

Comments welcome.

Shalom john

08-18-2016, 12:35 PM   #2
ronroush7
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Hi. It sounds like you might need another biologic. I would ask your doctor. I am truly sorry this happened to you.
08-18-2016, 05:28 PM   #3
Scipio
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Like you said, it may just be a coincidence, or your flare may be due to the switch to Remsima. Remsima and Remciade are not "biological identical." They are only "biological similar." Both drugs are too large and complex to ever prove they are identical.

I don't know the British national health system, but maybe your doc can switch you back if medical necessity can be demonstrated. Failing that, perhaps you can improve with just a higher dose of Remsima. Or a switch to Humira. There must be some maneuver here that can be made to work.
08-19-2016, 08:17 AM   #4
Jomar_uk
 
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Thank you both. Here in the UK we have only what is supplied. My case exactly! It is similar not identical. There is no other option at present I am afraid so staying on Rensima (I react badly to azathioprine, mecaptapurine & methotrexate).
However He is still watching over me so "All will be well".

I do not like being away from my beloved wife especially during wedding anniversary celebrations

Shalom my friends, john

08-22-2016, 01:35 PM   #5
Jomar_uk
 
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Update:

Saw consultant today and period being reduced from every 8 weeks to every 6 weeks. Plus as the bad reaction I get on day 2 or 3 *maybe* due to new biological, if it happens again, he will switch me back to Remicade, how's that for an answer to prayer ?

Shalom my friends, john
08-22-2016, 02:44 PM   #6
Tesscorm
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You might find this of interest...

http://gabionline.net/Biosimilars/Ne...lar-infliximab
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
08-22-2016, 06:00 PM   #7
Scipio
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Update:

Saw consultant today and period being reduced from every 8 weeks to every 6 weeks. Plus as the bad reaction I get on day 2 or 3 *maybe* due to new biological, if it happens again, he will switch me back to Remicade, how's that for an answer to prayer ?

Shalom my friends, john
Yay! I thought there must be some sort of "medical necessity" exception available.
08-25-2016, 10:33 AM   #8
Jomar_uk
 
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Further update (you will not believe this possibly

Saw GI Consultant Monday who suggested 6 weekly infusion may be better for me as about week 5/6 I feel as if a plug has been pulled.
Had my 8 weekly infusion Tuesday.

Just had phone call, the additional funding been approved in just 2 days (applied Tuesday morning, notification through late yesterday afternoon it's go for 3 sessions of 6 weekly infusions. The original I weekly has been approved & is secure.

They now need Remsima levels 2 days before (special blood test by Remsima manufacturers) at no cost to NHS Also so far, thank God, no adverse reactions like I fusions #1 & #2.

Being closely monitored though because of "history of reactions, cause not definitely known).

I truly believe it is prayers being answered.

Shalom my friends, a very happy, wondering, john
08-25-2016, 12:38 PM   #9
Scipio
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Excellent!
08-25-2016, 12:40 PM   #10
ronroush7
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Excellent!
Agree

09-04-2016, 05:29 AM   #11
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Interesting to hear this as I've had a few doses of inflectra after being switched from infliximab and I get to the 4 week mark and it too feels like "the plug has been pulled"....I'm not sure if it's down to the switch or I was already starting to wane but doctors and nurses have all given me a flat "No" when mentioning the possibility of changing to a bio similar as the cause
09-04-2016, 08:06 AM   #12
Jomar_uk
 
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Interesting to hear this as I've had a few doses of inflectra after being switched from infliximab and I get to the 4 week mark and it too feels like "the plug has been pulled"....I'm not sure if it's down to the switch or I was already starting to wane but doctors and nurses have all given me a flat "No" when mentioning the possibility of changing to a bio similar as the cause
Greetings from Essex!

Regularly on Remicade by weeks 5-6 had the "plug pulled" feeling with lethargy & fatigue. Others with me having infusion felt exactly the same.

Since switching over to Remsima my consultant has now secured additional funding for 3 trial sessions every 6 weeks to see if that helps with reduced gaps between infusions. (I've been on infusions just over 3.5 years now and "plug pulled feeling" almost since infusion 1).

I personally know my body does not react identically to Remsima as to Remicade *but* after reading horror stories in here about others spending a fortune on these drugs am eternally grateful I live in the UK and our wonderful NHS!

Trust you see improvements, I'll keep you in my prayers,

Shalom my friend, john

09-04-2016, 08:33 AM   #13
Tesscorm
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Curious, any possibility that someone will develop antibodies to remicade while trying a bio-similar like rensima? I'm assuming not as your GI has said that you will be moved back to remicade if necessary but I'm wondering if your GI mentioned this as a concern at all??

In any case, I hope the shortened schedule does the trick for you!
09-04-2016, 08:56 AM   #14
Jomar_uk
 
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Curious, any possibility that someone will develop antibodies to remicade while trying a bio-similar like rensima? I'm assuming not as your GI has said that you will be moved back to remicade if necessary but I'm wondering if your GI mentioned this as a concern at all??

In any case, I hope the shortened schedule does the trick for you!
Well been just over 3 1/2 years so far

My consultant is one of those guys you have an appointment at 14:00 say & you actually see him at 15:00 He is simply a genuine compassionate caring man. He believes in treating the whole person & takes time with each one.

I should not be taking naproxene for example with my crohns but he said bearing in mind my other health problems to continue taking it (spinal cord injured with musculoskeletal problems) as he didn't want me to be in pain unnecessary. He is a major reason I am comparatively so well. (I have 5 strictures the shortest being 5.5 inches in my small bowel), there want to avoid surgery for me. I am simply trusting him as I know he (and my designated general consultant surgeon) will act in my best interest, I cannot praise them enough to be honest.

The possibility of antibodies is there I understand, however I major on what is good going on (I am a firm believer in prayer *not* a fatalist . When/if it happens I know they will act accordingly & for be best interests. I really do not worry about my health to be honest although I am fastidious about my diet I am on (low fibre low fat with daily 2 x fresubin 2K energy drinks via prescription also).

Since diagnosis I have found it easier knowing what was causing the previously unexplained episodes of severe pain that ended up in hospital for 6-10 days at a time.

Really grateful for these forums to see how others are coping with this condition.

Shalom my friend, john

09-04-2016, 11:01 AM   #15
ronroush7
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Well been just over 3 1/2 years so far

My consultant is one of those guys you have an appointment at 14:00 say & you actually see him at 15:00 He is simply a genuine compassionate caring man. He believes in treating the whole person & takes time with each one.

I should not be taking naproxene for example with my crohns but he said bearing in mind my other health problems to continue taking it (spinal cord injured with musculoskeletal problems) as he didn't want me to be in pain unnecessary. He is a major reason I am comparatively so well. (I have 5 strictures the shortest being 5.5 inches in my small bowel), there want to avoid surgery for me. I am simply trusting him as I know he (and my designated general consultant surgeon) will act in my best interest, I cannot praise them enough to be honest.

The possibility of antibodies is there I understand, however I major on what is good going on (I am a firm believer in prayer *not* a fatalist . When/if it happens I know they will act accordingly & for be best interests. I really do not worry about my health to be honest although I am fastidious about my diet I am on (low fibre low fat with daily 2 x fresubin 2K energy drinks via prescription also).

Since diagnosis I have found it easier knowing what was causing the previously unexplained episodes of severe pain that ended up in hospital for 6-10 days at a time.

Really grateful for these forums to see how others are coping with this condition.

Shalom my friend, john
Amen

01-27-2017, 07:09 PM   #16
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I had been on Remicade for 3 years and have recently moved over Rensima. Now suddenly have had a flare up during my last infusion, I only started Rensima back in October.

I really don't think this version of the drug works for me especially since I have always considered my case of Crohns a fairly mild. I like others have been experiencing fatigue and skin problems while taking this.

Hopefully it is a case of adjusting my dosage. Fingers crossed.
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