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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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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.
12-21-2017, 08:38 AM   #13
valleysangel92
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Hey guys

So, I had a follow up with my gastro last week, my calprotectin is a little raised but its come down a lot since I started vedo, so it is working and he says this is enough for us to keep having the infusions without having to have all the testing redone, he doesn't think this would benefit me right now as the testing always sends me further into flares.


I've been taken off the sulfasalazine as its messing up my white blood cells (has been for months) and he doesn't feel its the right medication for my crohns. I've been put back on the pentasa and will be tapering my steroids slowly over two months. He doesn't feel its currently necessary to increase my infusions as he believes that its the changing of medication that has contributed my current issues, and that they will settle with the steroids and restarting the pentasa.

I am feeling better than I was before I started the steroids, and have noticed a big difference since I stopped the sulfasalazine despite having a bad cold the last few weeks.

My gastro is going to be contacting my rheumy to talk about the change in medications and letting her know what we've done. I'm not due to see the rheumy for another 3 months but she may want to see me sooner now that things have been changed. I had been having problems with my white cells when I last saw her and she insisted it was a blip and my gastro was not at all happy when I told him this as its continued to happen (hes cautious and firm but very fair to patients). It will be interesting to see what she has to say about it when I eventually see her and to see if she trusts my instincts in the future (I tried to tell her it would keep happening) .

I'm not sure what we'll do next joint wise, but we'll have to see whats said at the next appointments.

Last edited by valleysangel92; 12-21-2017 at 10:47 AM.
12-21-2017, 10:56 AM   #14
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I'm glad you're feeling a little bit better in time for the festivities.You've been struggling for awhile, so hopefully you're on the right track now.Best wishes.
12-23-2017, 03:02 PM   #15
my little penguin
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Sorry your flaring
Glad your GI stopped the sulfanazine

That said your options for treating your arthritis is very limited
Vedo does not treat arthritis at all

The only options left are another biologic
Which from your past post your GI refuses humira
Humira would treat both
Or methotrexate which your GI again wonít let you use
Would you be willing to try Areva (sp?)

This means your arthritis will not be treated or controlled at all


We have had to make hard choices for ds given he has three serious diseases that need managed /treated.
Leaving one untreated really is not an option
Hence the Stelara plus mtx and a second biologic

I know Stelara is not an option. And your GI is tying your hands
Hopefully your GI will start to co manage with your rheumo so BOTH your diseases can be properly treated so damage isnít done

Glad that they have you on steroids which st least helps your arthritis till the two doctors can talk

Itís all very frustrating finding meds that treat both
And getting two docs to talk

Tagging Maya142

Hope things calm down soon
12-23-2017, 03:47 PM   #16
Maya142
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I responded on your other thread.

Arava is an option but again it can't be used if you are planning to get pregnant soon. MTX is a better option because Arava actually stays in your body two years (and MTX does not).

You can do a "wash-out" with a different drug if you want to get pregnant sooner and have been on Arava. We actually did the wash out for my older daughter when she had side effects with Arava and it was fairly easy. It is just Questran for several days which binds to Arava and removes it from the body.

But it does sound like your body does not tolerate immunosuppressants very well - if even Sulfasalazine is causing issues, then I would guess Arava and MTX might too.

Remind me - what imaging have you had? What led to the diagnosis of seronegative RA vs. SpA? Because your treatment will really depend on your diagnosis.

I do agree that you need your two specialists to coordinate. You can't afford to leave your arthritis untreated. My younger daughter has very aggressive AS and is now dealing with the consequences of having uncontrolled inflammation for many years.

She just had jaw surgery and her left temporomandibular joint is a huge mess. Even the surgeon was shocked at how much damage there was .

I think we are going to be told she is going to need a jaw replacement in the future...She is only 20 years old and that is a major surgery that is not done very often. This is her second surgery this year - first one was a hip surgery.

Arthritis can be just as nasty as Crohn's and has to be treated as seriously.

Over here, Vedolizumab is being used less and less for Crohn's. Our GI does not like it at all - says it only really works for mild Crohn's. She says that while it is safer since it is gut specific, if it doesn't work as well, what is the point?

I do understand you have very little say in the matter...but I would keep pushing for a different drug that treats BOTH your arthritis and your Crohn's.

Honestly, anti-TNFs are the best option, especially if you want to get pregnant soon. Cimzia is the safest anti-TNF to stay on during pregnancy - I believe you can stay on it even through the third trimester.

Hang in there. I do understand that you are in a really tough situation and I really do sympathize. But I think you are your own best advocate and you have to keep at it, even though it's really tough when you feel awful.

Good luck!
12-23-2017, 06:51 PM   #17
valleysangel92
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Hi both, thanks for your responses

MLP - I hadn't actually heard of Arava, after a quick search I have been able to find some basic information and I can't say how suitable it would be for me. One of the main issues with MTX is the fact i want children in the not so distant future and from what I can find the Arava would cause problems with this too and would result in a longer period of not being allowed to conceive.

I know it's not a good idea to be leaving the arthritis untreated, and I have no intention of allowing that to continue, but until I can see/speak to my rheumy I won't know what my options are with regard to treatment.

I do know my rheumy said at my last appointment she'd be nervous of mixing the MTX and the vedo if I was to try that (hypothetical conversation when I asked what alternatives I had to the sulfasalizine) . Apparently it's quite rare to mix those two and my body is obviously over sensitive to immunosuppressive medications.

To be honest even if my GI wanted to change me to stelera we'd need a lot of evidence that my Crohn's isn't responding to the vedo, and at the moment our current evidence suggests that it actually is. From the rheumy point of view I'd have to try (and fail) all other options before being allowed to have biologics, it's just the way our funding system works unfortunately. If my Crohn's massively flared then we could get around it because I've already gone through all the other levels of medications but joint wise we've only scraped the surface.

My GI is talking to my rheumy and telling her what we've had to do and why, and will probably let her know what meds he's happy for me to try. To be honest he didn't know until he read my notes that my meds had been messed around with, as the rheumy had been emailing the wrong GI and hadn't bothered correcting the mistake when I told her. If she'd emailed the correct person I don't think I would be in this mess now.

Maya - as the rheumy is concerned about mixing mtx and vedo, I can imagine she'd have the same concerns with Arava, but I won't know anything until I speak to her which won't be for a few weeks I imagine with the holidays etc.

I understand that in the us vedo is being used less, but in the UK we don't have many other options and right now stelera is only allowed when you can out right prove vedo hasn't worked at all. Although it hasn't put me in remission it has kept me out of hospital for a year, the first year since I was 19 , so that's something . We think I was on the way to remission with infliximab and this has kind of just kept me stable. I know it's not an ideal situation but so little is with the NHS being so ridiculously underfunded.

I can only push so much. Until I see my rheumy I have no idea what options we have and so can't make any decisions about what's the best way forward for me. I've had joint problems from age 12 and pushed ever since to get what I need, I'm not going to stop now but I'm also very aware that they can't just give me any drug I want, even if they want to. They have to prove its absolutely necessary and no other (cheaper) drug will work and by fighting them too much all I'd do is delay that more. I've always done/ pushed for what I think is best for me, at the end of the day I'm the one having to have those treatments so I have to be confident in what I'm taking. When I have the information I need to make an informed choice I'll do the best I can to make the correct decision.

12-24-2017, 02:02 AM   #18
Maya142
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I think the two big questions I would have are what kind of arthritis does she think you have and why and what your treatment options are.

I would ask about the type of arthritis because if you have seronegative RA, then Stelara won't work anyway. It did not do well in trials for RA.

If you have SpA and spinal inflammation, then immunomodulators or DMARDs (as they are called in the rheumatology world) like Sulfasalazine will not work, but something like Stelara would.

SpA and Crohn's tend to respond to similar treatments because they are associated with each other more often and are similar diseases. When doctors say "Crohn's related arthritis" they really mean enteropathic SpA or IBD related SpA and not RA. SpA and Crohn's share many more genes and are actually much more similar than RA and Crohn's.

But of course it is possible to have RA and Crohn's. Just rarer.

I don't know if you'd be able to get imaging done, but generally an SI joint MRI is used to confirm SpA, in addition to blood work (ESR, CRP plus the HLA B27 gene test) and clinical exam.

It is great that you are doing better on Vedolizumab. How are your joints feeling? Any better? There was a study I saw recently showing hat some patients on Vedo who also have Crohb's related arthritis had their arthritis improve.

However, there were also cases of arthritis that got a lot worse during treatment with vedo.

The only other drugs I can think of are Plaquenil and NSAIDs. NSAIDs are probably out considering your IBD, but you could ask about them. They do reduce inflammation and stiffness and really help my daughters. However, my younger daughter has pretty mild Crohn's so she can tolerate NSAIDs as long as she takes a PPI.

Generally for RA, I think in the UK you need to fail a certain number of immunomodulators before they will put you on biologics. If you have already failed Sulfasalazine and Imuran, then you only need to try more - I think!! Not sure. Sometimes you have to fail "triple therapy" - 3 immunosuppressants - before they will try a biologic. But since you had WBC issues on just 1 immunosuppressant, I doubt 3 are a possibility.

So that leaves biologics. For both RA and SpA, anti-TNFs work well. They are also the safest of the meds you can be on during pregnancy. But I don't know what the data regarding Vedo says yet. There may not be enough data yet.

Remember to conceive you will need to be in remission - it helps if BOTH diseases are in remission...With RA, during pregnancy you may feel a little better. With SpA or psoriatic arthritis, you generally feel the same or worse.

Either way, it is safest for your Crohn's and arthritis to be under control before you try for a baby.

I would do some research on what drugs are used in the UK in place of MTX. We only know kids there, but it seems like MTX is used a lot and if that isn't used, either something like Arava is used or a biologic is added (Humira is a popular one for JIA).

My daughter was actually put on Vedolizumab plus another biologic plus Arava. That is very rare, but because Imuran did not control her Crohn's and she could not tolerate MTX, we had no other choice. Her WBC was fine, and she had no infections but she ended up developing drug induced Lupus from Vedolizumab after just 2 infusions.

They are starting to combine biologics now in studies in the US. Obviously very expensive and would not be allowed in the UK, but just wanted to mention it.

Good luck and hang in there. You are doing a GREAT job managing all this - I know how tough it is.
12-24-2017, 04:49 AM   #19
valleysangel92
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I am aware that it's best to be in remission before pregnancy. I'm also aware of your feelings about SpA over RA.

I'll let you all know what happens. Thanks.

12-24-2017, 07:27 AM   #20
my little penguin
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Thatís a tough situation
Really hope the rheumo can help
One other biologic that is approved for RA here at least is Anakinra (Kineret)
Itís IL-1
Kids with periodic fever syndrome also use it
It does not work for Crohns or SpA does work for RA
Ds takes it as well
It is also used for patients with sepsis and only stays in the body 24 hours (daily shot)
The hope for him is once Stelara starts working better
The Anakinra can be stopped quickky

I know the odds are small that you could use it
But I wanted to share In case you get to that point later

Not sure on pregnancy and Anakinra but the drug is used safely in infants with periodic fever syndromes

As far as nsaid
Ds tried a few
Failed most horribly
But has tolerated Celebrex at very low dose so far
He has scopes in February so we will know for sure then



There is a also volteran gel for joints

Glad your rheumo Will talk to your GI soon
We have had issue with communication before
Especially emailing between different specialists at different hospitals
12-24-2017, 09:57 AM   #21
Maya142
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You are really in an impossibly hard situation - thinking of you!!!

I know for kids if there are only a few joints involved, sometimes they use intraarticular joint injections to induce remission and just an NSAID to maintain it.

My daughters both had a hard time with NSAIDs too. But they reduce the odds of progression in AS, so they help with both pain and stiffness, so to us they are worth it. You have more severe Crohn's so your GI may not allow them but worth asking.

My DH has been on NSAIDs alone for years for his AS. He has dealt with a lot of joint damage but has still had a full life. He has now been told to go on to biologics but he is dragging hid feet .

Other DMARDs- there is Otezla used for Psoriatic arthritis. It is not an immunosuppressant in the same way the others are. But it does come with a lot of GI side effects and it is not really used in RA, just PsA and SpA.

Then there are drugs like Cellcept or Imuran but I doubt those would work because of your WBC.

There are lots of biologics for RA though - Actemra, Orencia, anti-TNFs, Kinerert, Xeljanz, Rituxan, Kevzara. Just not sure they'll allow you to use two since that is still a huge fight with insurance here.
12-24-2017, 04:26 PM   #22
1995
 
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Has anyone tried slippery elm and L glutamine and how's it going so far of how was it?
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