Crohn's Disease Forum » Extra Intestinal Manifestations » Finally diagnosed with arthritis


 
05-08-2018, 01:19 PM   #31
Lynda Lynda
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10-24-2018, 11:40 AM   #32
valleysangel92
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I've been on the methotrexate for about 6 months now and I've had constant side effects. My main problems have been nausea, D and having zero appetite. I have tried taking folic acid 6 days a week and am on two different anti sickness meds but unfortunately the D and lack of appetite are still a big problem. It got to the point where I began loosing weight because I physically can't eat when I take the injection and I have now been advised by the rheumy nurse to stop taking them until I see my consultant in November as when I don't take them my appetite is 100x times better.

Unfortunately they are of the opinion that there's not much more they could do, so it's either put up with it (not an option from my point of view) or look at alternatives. Unfortunately the side effects last pretty much the whole week so it's really affecting my quality of life and I don't think it's acceptable that I'm loosing weight when I worked so hard to gain it before. It's also not doing anything really noticeable to my joints, so it's really not worth it. I have given it a good go I think and have persevered for longer than they asked (they ask you stick with it for 3 months to see if there's improvement) .
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laperoscopic hemicolectomy 25/06/ 2013

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10-24-2018, 01:17 PM   #33
Maya142
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My daughter (younger one) had severe side effects with MTX and here are a couple of things that helped her:

1) Upping folic acid - we went from 1 mg daily to 2 mg daily

2) Add Leucovorin, which is folinic acid and is used as a "rescue drug" for MTX, when MTX is used in really high doses for cancer. Leucovorin is also used (in a much smaller dose) to help with the side effects of MTX for autoimmune diseases like RA etc. It is usually taken 12 or 24 hours after MTX. It REALLY helped my daughter - if you can get it prescribed, it's worth a try

3) Zofran for nausea, and imodium for diarrhea

4) Switching from oral MTX to injections - that helped both my girls a lot. It is individual - some people do better with the shot and some people do much better with the pill. So it's worth trying the other formulation.

5) Lowering the dose - if you're on 7.5 mg, this is not really feasible since that is a pretty low dose but thought I'd mention it in case you're on a higher dose now. My younger daughter tried 25 mg, 15 mg, 10 mg and 7.5 mg - no luck for her. My older daughter could not tolerate 25 mg but has been able to tolerate 15 mg and 17.5 mg (she is on 17.5 mg now, by injection).

6) For weight gain, try drinking a shake (like Ensure) daily to get it up. The day after MTX, we stuck to bland foods.

So if all this does not work, then coming off MTX makes sense.

Remind me - are you officially diagnosed with seronegative RA right now or some form of SpA (axial spondyloarthritis, peripheral spondyloarthritis or psoriatic arthritis)??

If it is RA, normally I'd would say you could try Arava. It worked really well for my younger daughter's peripheral joints, particularly her fingers. But it stays in your body a long-time and absolutely cannot be used when trying to get pregnant. And you would have to do a "washout" with Cholestyrimine to get it out of your body if you wanted to get pregnant soon.

If you have SpA, Otezla might be an option.

Other than that, biologics are your best bet. There was a study recently that showed that Vedo can cause new onset SpA or worsen SpA. I will post it here. Might be worth talking to your rheumatologist about.

Trying another anti-TNF is probably your best option honestly. Humira is approved for both RA and SpA - same with Cimzia and Simponi.

All 3 are used for some form of IBD too.

There are no other options that cover both RA and Crohn's. If it was peripheral SpA (no spinal/SI joint involvement) or psoriatic arthritis, then you could try Stelara.

But for RA, you're stuck with anti-TNFs since nothing else works for RA as well as Crohn's.

I would honestly get a second opinion from another GI. It's really very uncommon to not allow a patient to try a second anti-TNF after a reaction infliximab. It's well-known that Inflixmab has a much higher rxn rate because of the murine.

I would bet if you looked at guidelines for treatment of IBD, they would say that if you responded to Infliximab but had an allergic reaction, the next step would another anti-TNF.
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10-24-2018, 01:56 PM   #34
valleysangel92
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Maya, I'm already on two nausea medications and on the lowest injection possible. There's no where to go in terms of dose and we've upped the folic acid to the max too (I'm on 5mg every day apart from injection day). I've given it a good shot, my quality of life has been terrible and frankly I'm not willing to continue to put myself through that for a medication that isn't working anyway .
10-24-2018, 01:57 PM   #35
valleysangel92
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And I'm really happy with my gi, he's not the only one I've heard of not allowing someone to take humira after a reaction to inflectra and to be honest the other consultant at my hospital (can't travel outside the hospital/health board im under) ignored my Crohn's completely
10-24-2018, 02:37 PM   #36
Maya142
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I definitely understand - you have given it a good try. Sometimes, the best thing is to just move on. Just wanted to mention what we tried since we tried so many different things for my daughter! In the end, she felt the same way as you do - it just was not worth it. She lost 2-3 days in bed every week due to extreme nausea and dizziness and vomiting.

As helpful as MTX is for some, for others, it's tough to tolerate. The first pediatric rheumatologist we saw used to say it was a "beast" to take!

Does seeing a different GI for a second opinion mean you are switching doctors in the UK? I'm asking because what I meant was just that it may be helpful to get a second opinion, given that there aren't very many options left for you. In the US, it's fairly common to get a second opinion and continue seeing your regular specialist. Most doctors welcome it and will sometimes change treatment plans based on the opinions of their colleagues.

Does your rheumatologist have a plan B for your arthritis? The reason I say it's worth investigating anti-TNFs further is that I simply can't think of other options that would help the arthritis. You've already tried Sulfasalazine, Imuran/6MP, MTX. And Arava is probably out because you may want to get pregnant soon.

NSAIDs, I'm guessing, are also out because of your Crohn's (though there are patients, including my daughter, who take NSAIDs despite the Crohn's - usually Celebrex is allowed for patients with arthritis).

What about Plaquenil - have you tried that? Xeljanz is a totally different kind of biologic - a JAK inhibitor.

The other thing that would normally happen in the US is a conversation between your GI and your rheumatologist. Is that a possibility? Usually they would come up with a treatment plan together, considering that the treatments for Crohn's and RA can overlap significantly.

Good luck - I'm sorry to hear things are so hard.
10-24-2018, 02:39 PM   #37
Maya142
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Here is the abstract of the article that found that Vedolizumab could cause new onset SpA or a flare of pre-existing SpA.

Emergence of severe spondyloarthropathy-related entheseal pathology following successful vedolizumab therapy for inflammatory bowel disease.
Dubash S1,2, Marianayagam T3, Tinazzi I4, Al-Araimi T5, Pagnoux C5, Weizman AV6, Richette P7, Tran Minh ML8, Allez M8, Singh A9, Ciccia F10, Hamlin J11, Tan AL1,2, Marzo-Ortega H1,2, McGonagle D1,2.
Author information
Abstract
OBJECTIVES:
Vedolizumab (VDZ) blocks α4β7 integrin and is licenced for the treatment of IBD. It has been associated with mild SpA-related features, including sacroiliitis and synovitis. Herein we report a series of cases demonstrating the emergence of severe SpA-associated enthesitis/osteitis following successful IBD therapy with VDZ.

METHODS:
We evaluated 11 VDZ-treated patients with IBD across seven centres who developed severe active SpA and/or enthesopathy, with the aim of characterizing the VDZ-associated SpA or entheseal flares. Imaging features demonstrating particularly severe disease were recorded.

RESULTS:
De novo SpA developed in 9 of 11 patients and flare of known SpA in 2 patients, with 4 patients requiring hospitalization due to disease severity. Available data showed that one of seven cases were HLA-B27 positive. The median time from VDZ initiation to flare was 12 weeks, with IBD well controlled in 7 of 10 patients (no data for 1 patient) at flare. Severe SpA enthesitis/osteitis was evident on MRI or US, including acute sacroiliitis (n = 5), extensive vertebral osteitis (n = 1), peri-facetal oedema (n = 1) and isolated peripheral enthesitis (n = 3). Due to arthritis severity, VDZ was discontinued in 9 of 11 patients and a change in therapy, including alternative anti-TNF, was initiated.

CONCLUSION:
Severe SpA, predominantly HLA-B27 negative, with osteitis/enthesitis may occur under successful VDZ treatment for IBD, including in subjects with prior anti-TNF therapy for intestinal disease.
10-24-2018, 03:16 PM   #38
valleysangel92
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The system in the UK is more complicated, partly because we don't pay to see our doctors, usually a second opinion is for when a doctor is unable to deal with your case because it's too complex or outside their speciality. We have a right to ask for a second opinion, but usually people only request that because they're unhappy with the treatment they're recieving and although it technically doesn't have to, it usually does mean changing doctor's. If I wanted to get a second opinion without seeing my old (ignorant and uncaring) consultant then id need a referral to another health board and that means travelling a long way and a potential year wait , and although they might say different about my treatment, they wouldn't have the authority to prescribe the infusions/injections at my normal hospital, so I'd have to travel for each treatment and for check ups etc etc etc.

I've been told strongly not to take nsaids and the rheumatologist is of the same opinion to be fair.

Plaquenil is actually what my ibd nurse has suggested I ask about , so I already have that one in mind. My rheumy vaguely mentioned biologics ages ago as a "one day" thing but honestly the way things work here she'd have to really really really push to get me anywhere near approved them and my gi would need persuading (although it's humira he's most worried about to be honest and that's partly due to the inject at home aspect).

My rheumy was meant to email the gi before but ended up emailing the wrong doctor 🙄 so the person she emailed (who was a gastro but not ibd specialist) responded and told her to go ahead with what she wanted to do, and then I saw my gi and he reversed the decision as it wasn't actually suitable for me. So, there have been attempts to communicate but it didn't go very well. I would imagine if it was felt biologics were needed then she'd contact my gi and hopefully make sure it's the correct person this time

The rheumy is aware I'm on Vedo and has asked me before if my symptoms correlate to infusions but she's satisfied in my case that it's ok.
10-24-2018, 03:48 PM   #39
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Oh my goodness!!! Haven't seen you in awhile so was hoping that things were finally working for you and that's why you haven't said anything. Looks like my hopes and wishes were wrong. Sending you lots and lots of hugs.
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10-24-2018, 05:19 PM   #40
Maya142
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Plaquenil is actually what my ibd nurse has suggested I ask about , so I already have that one in mind. My rheumy vaguely mentioned biologics ages ago as a "one day" thing but honestly the way things work here she'd have to really really really push to get me anywhere near approved them and my gi would need persuading (although it's humira he's most worried about to be honest and that's partly due to the inject at home aspect).
Can't believe it is that hard to get a second opinion. Yikes! Though I suppose it is kind of similar here - you generally do have to travel to a university hospital, most of which are in cities. Typically you wait about 3 months for a new patient appointment - sometimes less and sometimes much more.

I hope the rheumy can up come with a plan. Do you see her soon? Does she have a Plan B, in case MTX did not work? My daughter went straight to Arava and now Otezla.

Are they monitoring your joints with ultrasounds? Or x-rays? To make sure there is no damage occurring? That would be my biggest concern considering you're not on a biologic (for the arthritis). Inflammatory arthritis can cause debilitating pain due to either inflammation or joint damage or both.

Ultrasounds are cheap and are good for checking to see if there is still inflammation. They can also sometimes tell if there is damage occurring (erosions, tendon thickening and scarring).

MRIs and x-rays are better at seeing damage though, but obviously MRIs are expensive and x-rays typically only show damage later in the disease and use radiation.

In terms of NSAIDs, there was a recent study showing they did not cause a flare in Crohn's patients. But the general thinking is that they should be avoided if possible. If you can manage without them, then that's great!

My daughter does use NSAIDs and has gotten gastritis from them several times. Usually Carafate helps. We have tried to stop them many times but then she gets so stiff that she's unable to walk.

My younger daughter was on Plaquenil for a bit. It's usually fairly mild - the only side effect that really bothered her was nausea. Hopefully it will be easier for you to tolerate. Fingers crossed!
10-24-2018, 10:03 PM   #41
my little penguin
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Sorry your having such a rough time with mtx injections
The only thing I would share
Is Ds is similar to you when he takes mtx injections
Sicker than sick
No matter the dose
That said
When he takes mtx tablets orally - it helps his joints and he isnít sick as long as he takes folic acid up to 20 mg of mtx
After that he is sicker than sick

Have you tried oral mtx ?
Since your options are limited and you have to wait
Might be worth a trial of one week to see if your doc is ok with it

I have seen how miserable injectable mtx can be
Wouldnít wish that on anyone
11-23-2018, 08:41 AM   #42
valleysangel92
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I had a rheumy follow up on Monday and it has been decided that I am going to come off methotrexate injections as I feel 100x better without them. I am being sent for physio therapy for my hip as she believes there is a problem with the tendon, and will be seen in clinic in three months.
11-24-2018, 10:43 PM   #43
my little penguin
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What are they giving you to stop the progression of your arthritis?
Pt wonít stop the arthritis from progressing and doing damage that canít be reversed
11-28-2018, 09:05 AM   #44
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The PT isn't really aimed at the arthritis to be honest, the rheumy thinks I have a problem with the tendons in my hip and that's what's causing the horrendous pain I'm getting recently (it's waking me up from deep sleep and I can't walk more than a few paces some days) .

We're in the process of deciding the next steps. There's a question mark over if my Crohn's is beginning to flare. I'm in bed right now after having the most horrendous cramps that took my breath away. So I might be starting testing again, if it comes back showing a flare we'd be potentially changing my treatment there so might be able to find one treatment that works for both ( it's a big might).

I've also just been diagnosed with cluster headaches after years of suffering with incredibly painful headaches . And my mum's about to go into surgery and I'll be helping her out as much as I can for the next month or so, so there's a lot of plates spinning right now and I have to keep them all going.
11-28-2018, 12:30 PM   #45
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I'm afraid there's not a whole lot I can say, but that I'm sending you a whole lot of hugs!
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