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11-08-2017, 11:26 AM   #1
valleysangel92
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Flaring again - Frustrated

Hi guys.

So, many of you will know my back story and know how long I've been struggling to get this beast of an illness under control. After a promising start on Vedolizumab, it appears the wheels have once again began to fall off the wagon.

Initially, I experienced a decrease in pain, my weight started going up and for the first time since my early teens I was actually maintaining a healthy weight. I began to get a better appetite and the nausea that's plagued me for years seemed to be starting to disappear. Alas, it seems it was not to last.

At the start, it just seemed like my infusions had just been wearing off, as we all know this is fairly common with biologics, so it didn't alarm me and was more of an inconvenience than anything else. Recently though, I haven't been picking back up after the infusions the way I was before, and I've been in really severe pain much more often. I'm loosing weight again, I have little to no appetite and my vitamins, especially folate, are starting to tank.

I saw my IBD nurse last week and shes done some blood tests and we did a stool sample to check for information. The stool sample takes 2-4 weeks to come back so it'll be a little while before we know if it shows anything. In the mean time, shes worried enough to put me back on steroids, something we've been really trying to avoid for ages because I struggle so much coming off them and I've already got osteopenia. Thankfully though it is budesonide so at least the side effects won't be quite so bad, although the trade off is they are much slower to work.

If there are signs of inflammation in the testing, then it looks like we may need to do more imaging (although MRIs have been distinctly unreliable for me) or another colonoscopy.

Depending on the results, we may be able to increase my infusions to every 4-6 weeks but this needs approval from a multi-disciplinary team which is pretty hard to get because the infusions cost so much.

If they decide to take me off the vedo, then the only other option currently available is stelera, which is incredibly difficult to get onto at the moment because its over £2000 a dose and they're concerned about some of the side effects that the few patients that are taking it have been showing.

This is all getting pretty frustrating now. I was diagnosed 5 years ago and its been a constant fight ever since ( I've had symptoms for almost 10 years now). I've had to prove how sick I am at every turn, and to be honest that could well be happening again if my IBD nurse can't convince the other clinicians that I need help.

I feel incredibly isolated because people around me really don't understand this illness, its not that they don't care, they just apparently can't get their heads around the different treatments and potential complications. Its almost as if they think I can pop a pill and be fine in a few days.. they still don't really comprehend that this is not going to go away. I spend most of my time at home alone because everyone works, and when they get home they're too tired to look at information or even really talk about things properly and then on the weekends they're always out seeing other family members (often without inviting me) or shopping etc. I constantly hide how lonely and left out I am because when I do speak up its taken as an insult rather than me reaching out for help. I don't think theres anyone that actually understands how much pain I'm in at the moment, with the exception of my fiance who unfortunately lives too far away to come help all the time (not through his choice).
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
11-08-2017, 11:39 AM   #2
ronroush7
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Hi guys.

So, many of you will know my back story and know how long I've been struggling to get this beast of an illness under control. After a promising start on Vedolizumab, it appears the wheels have once again began to fall off the wagon.

Initially, I experienced a decrease in pain, my weight started going up and for the first time since my early teens I was actually maintaining a healthy weight. I began to get a better appetite and the nausea that's plagued me for years seemed to be starting to disappear. Alas, it seems it was not to last.

At the start, it just seemed like my infusions had just been wearing off, as we all know this is fairly common with biologics, so it didn't alarm me and was more of an inconvenience than anything else. Recently though, I haven't been picking back up after the infusions the way I was before, and I've been in really severe pain much more often. I'm loosing weight again, I have little to no appetite and my vitamins, especially folate, are starting to tank.

I saw my IBD nurse last week and shes done some blood tests and we did a stool sample to check for information. The stool sample takes 2-4 weeks to come back so it'll be a little while before we know if it shows anything. In the mean time, shes worried enough to put me back on steroids, something we've been really trying to avoid for ages because I struggle so much coming off them and I've already got osteopenia. Thankfully though it is budesonide so at least the side effects won't be quite so bad, although the trade off is they are much slower to work.

If there are signs of inflammation in the testing, then it looks like we may need to do more imaging (although MRIs have been distinctly unreliable for me) or another colonoscopy.

Depending on the results, we may be able to increase my infusions to every 4-6 weeks but this needs approval from a multi-disciplinary team which is pretty hard to get because the infusions cost so much.

If they decide to take me off the vedo, then the only other option currently available is stelera, which is incredibly difficult to get onto at the moment because its over £2000 a dose and they're concerned about some of the side effects that the few patients that are taking it have been showing.

This is all getting pretty frustrating now. I was diagnosed 5 years ago and its been a constant fight ever since ( I've had symptoms for almost 10 years now). I've had to prove how sick I am at every turn, and to be honest that could well be happening again if my IBD nurse can't convince the other clinicians that I need help.

I feel incredibly isolated because people around me really don't understand this illness, its not that they don't care, they just apparently can't get their heads around the different treatments and potential complications. Its almost as if they think I can pop a pill and be fine in a few days.. they still don't really comprehend that this is not going to go away. I spend most of my time at home alone because everyone works, and when they get home they're too tired to look at information or even really talk about things properly and then on the weekends they're always out seeing other family members (often without inviting me) or shopping etc. I constantly hide how lonely and left out I am because when I do speak up its taken as an insult rather than me reaching out for help. I don't think theres anyone that actually understands how much pain I'm in at the moment, with the exception of my fiance who unfortunately lives too far away to come help all the time (not through his choice).
I am sorry you are going through this. You can always come here for support. I hope the doctor can help you soon.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
11-08-2017, 11:43 AM   #3
my little penguin
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Can I ask what side effects from Stelara?
Ds started Stelara in August
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DS - -Crohn's -Stelara -mtx-IVIG
11-08-2017, 11:45 AM   #4
valleysangel92
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I'm not sure exactly hun, my IBD nurse just said it can come with some nasty side effects, but from my understanding of the drug I didn't think they were any worse than the other biologics. She did say though that the recovery people are getting with it is amazing if they can stick it out.

I'm seeing my GI in a few weeks so i'll see if he can give me some more detail and let you know what he says.
11-08-2017, 11:47 AM   #5
my little penguin
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Thanks a bunch

Hope entivyio can be bumped up

Stelara can take up to six months to work
We are bridging with ivig and low dose steriods now
11-08-2017, 01:52 PM   #6
ronroush7
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I was on Stelara at one time and there weren't any particular side effects that stood out.

11-08-2017, 04:45 PM   #7
Maya142
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I'm really sorry to hear you are flaring. As far as I know, our GI has not seen anything unusual with Stelara either - it's just like other biologics. They are using it on kids here, even though it is not approved for pediatric use yet. It is my daughter's next option and we have talked about it many times and have never been told that it has particularly nasty side effects or anything like that.

I think in terms of infection rate, it is actually a bit safer than anti-TNFs.

If you do need to switch, I would ask if another anti-TNF is possible. I know you reacted to Remicade, but it is pretty standard to be put on Humira after that and reactions to Humira are very rare. I can't think of a single person I know who has actually had an allergic reaction to Humira, even after reacting to Remicade. And we know LOTS of kids, teens and young adults with juvenile idiopathic arthritis/AS/SpA on anti-TNFs.

I just think something like Humira may be easier to get (if you can get your doctor on board with it) because it's likely to be cheaper than Stelara.

Was the stool test they did do, Fecal Calprotectin? That is usually pretty accurate - perhaps if that is high, that might be enough to get your Vedolizumab dose bumped up? My worry is that budesonide will mask the inflammation if you do have to have scopes or an MRE, so your best bet might be the FC test.

I wish I had more or better advice but it's a tough situation, especially since everything is based on funding . Sending hugs.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
11-08-2017, 05:07 PM   #8
Jabee
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Iím very sorry to hear things are going downhill. I think many people have a very hard time understanding a chronic illness because theyíve never been sick for an extended period. Iíve had chronic migraines for almost 20 years (they started at the same time as my celiac disease and crohnís, although those werenít diagnosed until later), and my children (19, 21, and 23) only understand what itís like because they all get migraines as well. My ex-husband never understood how debilitating they are; more importantly when you have one everyday the effect is cumulative. Crohnís, of course, is worse because it is systemic. Of course you are exhausted. Pain is exhausting. And with the malabsorption that comes with crohnís you feel even worse. I hope your doctors can figure something out for you without too many NHS hassles.
11-08-2017, 05:32 PM   #9
valleysangel92
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I'm really sorry to hear you are flaring. As far as I know, our GI has not seen anything unusual with Stelara either - it's just like other biologics. They are using it on kids here, even though it is not approved for pediatric use yet. It is my daughter's next option and we have talked about it many times and have never been told that it has particularly nasty side effects or anything like that.

I think in terms of infection rate, it is actually a bit safer than anti-TNFs.

If you do need to switch, I would ask if another anti-TNF is possible. I know you reacted to Remicade, but it is pretty standard to be put on Humira after that and reactions to Humira are very rare. I can't think of a single person I know who has actually had an allergic reaction to Humira, even after reacting to Remicade. And we know LOTS of kids, teens and young adults with juvenile idiopathic arthritis/AS/SpA on anti-TNFs.

I just think something like Humira may be easier to get (if you can get your doctor on board with it) because it's likely to be cheaper than Stelara.

Was the stool test they did do, Fecal Calprotectin? That is usually pretty accurate - perhaps if that is high, that might be enough to get your Vedolizumab dose bumped up? My worry is that budesonide will mask the inflammation if you do have to have scopes or an MRE, so your best bet might be the FC test.

I wish I had more or better advice but it's a tough situation, especially since everything is based on funding . Sending hugs.
I'm really sorry to hear you are flaring. As far as I know, our GI has not seen anything unusual with Stelara either - it's just like other biologics. They are using it on kids here, even though it is not approved for pediatric use yet. It is my daughter's next option and we have talked about it many times and have never been told that it has particularly nasty side effects or anything like that.

I think in terms of infection rate, it is actually a bit safer than anti-TNFs.

If you do need to switch, I would ask if another anti-TNF is possible. I know you reacted to Remicade, but it is pretty standard to be put on Humira after that and reactions to Humira are very rare. I can't think of a single person I know who has actually had an allergic reaction to Humira, even after reacting to Remicade. And we know LOTS of kids, teens and young adults with juvenile idiopathic arthritis/AS/SpA on anti-TNFs.

I just think something like Humira may be easier to get (if you can get your doctor on board with it) because it's likely to be cheaper than Stelara.

Was the stool test they did do, Fecal Calprotectin? That is usually pretty accurate - perhaps if that is high, that might be enough to get your Vedolizumab dose bumped up? My worry is that budesonide will mask the inflammation if you do have to have scopes or an MRE, so your best bet might be the FC test.

I wish I had more or better advice but it's a tough situation, especially since everything is based on funding . Sending hugs.
I'm just going from what my own IBD nurse has told me, to be honest I didn't ask about what side effects she specifically meant, as at the moment it's all hypothetical, but I don't think she was talking about infection risk. My IBD team seem to be a little more cautious than others I've come across. We only have one person in our health board on stelera , so they've probably not got that much information to go on. I do know though that if they think stelera is the right option for me they'll fight tooth and nail to get it, it just won't be a simple process and we'll probably have to jump through a lot of hoops so it's likely to take ages (like everything in the NHS).

I know it's standard practice to go onto humira, but , my consultant is really strongly against it, and to be honest even though I don't like it I do understand why. I do think it's worth a try, but I understand his concern about the chance of a reaction and I do know of a couple of people who have reacted to both humira and remicade, it is very uncommon though. As I've said before I will of course be asking both my rheumy and my GI if they think it is worth a try with the new additional diagnosis but, again, even if I convince them it's all down to the MDT meetings and getting funding awarded etc. If the MDT meetings say it's not safe or they're not willing to take a risk then there's no changing their minds. At the moment I don't think it's actually that much cheeper than stelera, because in the UK the protocol for stelera is a dose every 12 weeks, so over the course of the year it evens out I expect. Humira still has its patent here so the price hasn't changed since it was first made but doctor's favour it because they know it works and they know all the side effects etc etc.

Having said all that though I think the protocol in the UK is changing , because in the areas where it's available I'm seeing more and more people going straight to vedo when they fail inflectra/infliximab no matter what the reason is.

I did the fecal calprotectin before I started the steroids. There's a slight chance it will be enough to get my infusions changed but it seems unlikely with how strict everything here is. I do understand what you're saying about the steroids but we've been holding off on them for a long time and I'm just getting sicker. To be honest things are so slow here that by the time I get any appointments for further testing I'll probably have been off them for at least a month anyway as the general wait for scans is 3-6 months and scopes can take even longer.

11-08-2017, 06:03 PM   #10
Maya142
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I did the fecal calprotectin before I started the steroids. There's a slight chance it will be enough to get my infusions changed but it seems unlikely with how strict everything here is. I do understand what you're saying about the steroids but we've been holding off on them for a long time and I'm just getting sicker. To be honest things are so slow here that by the time I get any appointments for further testing I'll probably have been off them for at least a month anyway as the general wait for scans is 3-6 months and scopes can take even longer.
I certainly didn't mean that you should not be on steroids - just that they might make getting more medication, whether it's a new drug or more frequent vedolizumab, harder . It's a tough spot you're in since scopes/MREs can take so long - you don't want to go so downhill that you end up in the hospital, but on the other hand, you don't want the steroid to heal everything and make it look like you're doing great.

We had the same issue with my daughter last year - scopes were 4 weeks away and her FC was climbing, and we couldn't risk things getting worse, so we put her on Entocort (budesonide). She was also on a relatively low dose of Prednisone (10 mg) at the same time for her joints.

Her scopes did still show inflammation and some small ulcers, but her GI said it would have been much worse if we had not used steroids. In her case, we were still trying to get Imuran to work for her at that time, so it didn't matter that scopes were not too bad, since we didn't have to prove anything to anyone.

I do hope they will approve more frequent vedolizumab for you. The only other thing I can think of is adding something like 6MP to increase trough levels, which should make it last longer. This is done pretty often with Remicade/Humira - either MTX or 6MP/Imuran are used. I remember you not wanting to use MTX, but can't remember if you had any issues with Imuran.

It is interesting to hear that things are changing in the UK - here most GIs we have spoken to here do not like Vdeolizumab, particularly for patients with moderate-severe disease. My daughter's GI says it works best for mild Crohn's in her experience.

In contrast, it seems like more patients are being put on Stelara earlier here - not just as a last resort.

I guess we will see where things go in the next year or two.

Hang in there .
11-08-2017, 06:09 PM   #11
Maya142
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If you are interested in showing your consultant some studies, PubMed does have some done in which patients who had an allergic reaction to Remicade were given Humira. In the study I copied below, most patients tolerated Humira well.

I don't know the UK system well and if it's even possible for you to show your GI studies, but we have done that here many times and usually they are happy to read them and consider another opinion.

A pilot study of adalimumab in infliximab-allergic patients.

Youdim A1, Vasiliauskas EA, Targan SR, Papadakis KA, Ippoliti A, Dubinsky MC, Lechago J, Paavola J, Loane J, Lee SK, Gaiennie J, Smith K, Do J, Abreu MT.
Author information
Abstract
The anti-TNF-alpha antibody infliximab (Remicade) is highly effective in the treatment of Crohn's disease. A subset of patients experience allergic reactions as a result of antibodies to infliximab (ATIs). The purpose of the current study is to describe the safety and efficacy of adalimumab (Humira) in patients previously allergic or intolerant to infliximab. Adalimumab is an anti-TNF-alpha agent containing only human peptide sequences. Seven patients have been treated with adalimumab who had experienced immediate- or delayed-hypersensitivity reactions to infliximab and one with infliximab-induced lupus. Except for injection site discomfort, adalimumab was well tolerated without signs or symptoms of allergic reactions. One patient who had previously received pooled human immunoglobulin developed a pruritic rash after each dose of adalimumab. Patients with active disease who had previously experienced a robust response to infliximab responded to adalimumab as reflected by an improvement in Harvey-Bradshaw index and inflammatory markers. Based on these preliminary data, adalimumab may be a safe and effective substitute for infliximab-allergic patients. Individuals who have been exposed to human antibodies may be sensitized to other human antibodies such as adalimumab.
11-08-2017, 06:26 PM   #12
valleysangel92
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I'm aware that steroids can affect results, but the last time I was this sick I ended up waiting too long and it resulted in being in hospital on a two week course of IV steroids, so tablets is still a compromise really.

Its not just me that doesn't want to be on MTX, my IBD nurse doesnt want it anywhere near me, and I've had problems with both aza and 6mp in the past, so neither of them are an option which was why I was put on inflectra. To be honest though I haven't come across anyone using immunosuppressants along with vedo personally.

In the UK, people still seem to be getting either inflectra or humira first, but when one of those fails they seem to starting to be getting put on vedo rather than the other anti-tnf. In the UK, we're very cost and low risk driven, and the general consensus seems to be that vedo is safer than either infliximab or humira, and that it takes longer to develop allergic reactions or serious side effects. They prefer not to use it if they haven't tried one of the other biologics first because they have higher success rates, and many agree that its better for UC than Crohns.
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