Finally diagnosed with arthritis

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valleysangel92

valleysangel92

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Hi guys,

Some of you might remember me posting a while back about some persistent problems with my Joints. I have had pain in my joints as far back as I can remember, it started when I was at least 12 years old. My main points of pain are my shoulders, my back, my hips and my knees and I suffer from swelling and stiffness in my hands, knees and ankles too.

When I was 21, I was referred to a rheumy and diagnosed with Fibromyalgia after some very basic tests including blood tests and one (outdated) scan. This didn't really add up because fibro doesn't cause swelling and is usually worse after activity whereas I have the most problems first thing in the morning or if I've been in the same position for a long period of time.

None the less I tried the treatments that I was being offered by the GP (rheumy only saw me once) which was mainly pain management like gabapentin. These helped for a short time but things came to a head last september when I was really struggling to walk and get dressed due to severe pain and stiffness. After a few months of this, my gastro requested that my GP re-refer me to a new rheumy to be re-assessed.

I have now had 3 appointments with the rheumatologist (including one same day emergency appointments which I was very impressed with) and after some bloods and xrays and a tester steroid injection I have been re-diagnosed as having seronegative inflammatory arthritis. I have had my pentasa changed to salfasalazine to try and control the inflammation in my joints as well as supporting the Vedolizumab. I will be having monthly blood tests to make sure there is no adverse effect on my joints.

I start physiotherapy this afternoon to try and control the pain in my back and hips and to try and build some strength and stamina back up. Hopefully this is the first step to getting some mobility back and feeling more like a 24 year old rarher than a 64 year old.
 
Going to tag Maya142
Did they do an MRI to rule out ankylosing spondyloarthritis ( X-ray won't show anything till there has been damage for years )
Sulfanizine typically is too mild for spondyloarthritis (seronegative artyritis associated with Crohns -SpA)
Peripheral joints typically need mtx and spinal symptoms (hips lower back etc...)
Require their own biologic (entivyio does not treat SpA -in fact in some it makes it worse )


https://www.spondylitis.org/Types-of-Spondylitis


Hope you get some relief

Heating pads
Ice
Warm water Swimming
Paraffin wax
Resting Splints
Braces for knees /ankles
Volteran gel (nsaid but since it's a gel in the skin. Most GI will allow it )

These are the things DS has been using to help his JSpA
For years including Stelara now and mtx


Good luck
Hope sulfanizine helps you
 
Sulfasalazine or MTX are generally tried first for peripheral joints. In our experience, rheumatologists prefer MTX but the "official" ASAS guidelines actually do recommend Sulfasalazine. That said, Sulfasalazine is a pretty mild drug. Both my girls tried it and it did nothing for them.

If your spine is involved (sacroiliitis) then you need to be on a biologic that treats the SpA too (Entyvio will not). Peripheral joints may respond to Sulfasalazine (or MTX) but the spine will NOT. An MRI will show if your back is actual inflammation in your SI joints or lumbar spine or if it is just muscular.

They should do an MRI because it would change the treatment plan and it would also probably help you qualify for Stelara or another anti-TNF.

The only thing that treats axial (spinal) SpA is NSAIDs (which are out for most people with Crohn's) or biologics.

Over time, axial SpA can cause damage. It can progress to ankylosing spondylitis (it did for both my daughters).

My husband was never given biologics (since they didn't exist when he was diagnosed) and he has a LOT more joint damage compared to my girls. He has had 5 hip replacements, fused SI joints and has a partially fused spine. In contrast, the girls have some SI joint/hip damage, but nothing like his.

My younger daughter tried Entyvio in addition to another biologic for her AS and it made her joints worse. We stopped after 2 infusions.

Physical therapy is a great idea to get some mobility back.
 
Thankyou for the responses everyone :)

My first physio appointment went well, we are going to initially work on getting the strength back in my hips and lower back and then maybe move on to improving some of my stamina and fitness. We'll be working around my restrictions in terms of my Crohns (some of the techniques could pressure my stomach a lot). I'm cautiously optimistic, I had been trying for 4 years to get a physio referral and my rheumy did it without even asking, and it was even on the urgent list so I got seen within 2 weeks of referral.

I haven't been given an MRI at this point, they're actually pretty difficult to get in the UK unfortunately (or at least in wales anyway). Our doctors are under huge pressure to reduce cost and every scan has to be justified by other test results or accute change in situation. I first got Crohns symptoms when I was 15 and didn't get an MRI until I was 19 and even then it was only because I had lost a stone in a couple of months and my GP was going crazy because the hospital ignored me. Even during subsequent admissions I've usually only been given Xrays, during 13 stays I've only had one MRI. I think because my Xrays were fine (which as you say doesn't mean anything) we'd have a hard time showing that the MRI is really really important. Part of the aim of me having physio is to try and help establish how much of my pain has been caused by weak/damaged muscles and what's a result of arthritis. I will be seeing my rheumy around November, and I'm reasonably confident that if the physio hasn't made a decent difference we would have stronger grounds for an MRI and I have a decent amount of confidence that if I approached her with the idea she would be receptive. It's really annoying the way the system works here and how everything has to be done in such a set way. It gets really frustrating. Unfortunately a lot of people here are happy to just go along with what they're told and don't take a huge interest in whats really going on with their health, so patients who advocate for themselves are often made to feel like their being pushy and difficult. I'm fortunate that my current health care team all seem to be happy for me to be so actively involved but unless more people take an interest I don't see things changing any time soon.

From what I can work out, salfasalazine is almost always the first step in the UK, because of our guidelines for prescribing being so tight it's quite hard for doctors to use some of the more aggressive treatments sometimes. I know my IBD team are really not keen on me going onto MTX (partly because I will likely want children in the next few years), they've told me a few times they really don't like using it in young people unless everything else has been tried first, so I don't know if they would agree with me being put on it (my rheumy is running all meds by them first).

Biologics wise, i'm allergic to infliximab and my consultant is unwilling to let me try humira because he's concerned I'll react to it (much to the dismay of myself and my IBD nurse as well as the infusion nurse).
Stelera is just now coming through the approval process in the UK and should be starting to be used more in the next few months or so, but my consultant has actually told me he doesn't want me on ANY anti-TNFs so he may be unwilling to allow me to use that too, although to be honest I'm fast running out of other options because while the Vedo is keeping things mostly stable and I'm getting a few good weeks from it, I am still getting regular episodes of severe pain and nausea. I'm supposed to be seeing my IBD nurse soon (well, technically its 2 weeks over due now) so I may try testing the waters with her as to what she thinks my chances are of getting on stelera or my consultant reconsidering his position regarding Humira.

Maya it's interesting that you mention that your daughters symptoms became worse after vedo as it was just after I started it that things got to the worst point. I had recently had surgery and assumed that the flare in my joints was brought on by the physical trauma, but maybe it was the change in meds. I do feel very achey after my infusions but just thought it was the hospital chairs. I'll definitely be keeping a closer eye on that one.
 
I would also expect Sulfasalazine to be the first step in the UK. But if things have not changed in 8 weeks or so (or whatever the timeframe they gave you was), then I would REALLY push for a different biologic.

You will also have an easier time getting pregnant and having kids if your arthritis is controlled. Unlike RA, SpA does not go into remission often during pregnancy. Many women need to stay on a biologic through the first trimester.

One of the anti-TNFs, Cimzia, can be used through the whole pregnancy I believe. My girls are a little young for the pregnancy discussion (thank goodness!) so that is all I know.

I just want you to know that SpA is just as serious as Crohn's and cause a fair amount of disability. So it's just as important to treat it aggressively. I say this as a mom - we did not treat my younger daughter's AS aggressively enough and now she is really suffering the consequences. She is due to have both hip and jaw surgery in the next few months. Both minor surgeries, but I expect she will at least have hip replacements in her future.

Almost every joint in her body is affected and she has missed quite a bit of college because her arthritis has so difficult to control.

My older daughter, whose AS we were able to keep under control, has not needed surgery and we will hopefully be able to avoid replacements for a long time. She is doing great on Humira and MTX.

As for anti-TNFs following a Remicade rxn - I have NEVER heard that. There are plenty of parents of kids on the Parents Forum whose kiddo reacted to Remicade and did great on Humira. It MUCH more likely that you'll react to Remicade than other anti-TNFs because Remicade is murine - mouse protein.

Humira is humanized. Same with Cimzia and Simponi.

I would not rule out anti-TNFs because the only other option so far is Stelara that would treat both Crohn's and SpA. Stelara is not an anti-TNF (it's an IL-12 and IL-23 inhibitor), so hopefully your doc would allow that.

Can your rheumatologist and GI talk and come up with a plan? I don't know how hard it is to get them to coordinate there, but here we have my daughter's doctors have a conversation and come up with a plan together.

M tried Entyvio for two months. She developed drug-induced Lupus and her joints got MUCH worse. Pain was through the roof, despite Morphine. Also very bad fatigue and she would get this rash on her face (a butterfly rash).

Anecdotally, her rheumatologist was not at all surprised that her joint pain became worse on Entyvio - said she had had a number of patients that complained of that.
 
One other thought
Ds just started Stelara for his Crohns and JSpA after failing humira (he had been on humira and mtx for over 5 years)
He did react to remicade but had no issues with Humira

I will let you know if Stelara is even effective for his joints
So far not
But he only had one infusion

The other option we were told is ivig
Rheumo is a big fan of it
I haven't found much on it
But if biologics are out then it might be worth asking about
 
I think because my Xrays were fine (which as you say doesn't mean anything) we'd have a hard time showing that the MRI is really really important.
Click to expand...

I want to add - it is exactly because your x-rays are negative that you need an MRI! If they were positive, there would be no need for an MRI - they could just diagnose you right there with Ankylosing Spondylitis and put you on a biologic.

What an MRI would tell you right now is whether you have inflammation in your SI joints or lumbar spine. This is important to know because axial SpA needs to be treated with biologics.

Peripheral SpA (joints other than the spine) can be treated with SSZ/MTX but may also need biologics. But in peripheral SpA, generally they will try MTX (or Sulfasalazine first) and if those fail, then try biologics.

With axial SpA, SSZ and MTX just will not work, so there is no point in bothering with those. The only proven treatments are NSAIDs and biologics.

If you have ANY inflammation in your SI joints, then you are considered axial SpA, even if you also have peripheral joints (knees, hands, elbows) involved.
 
Maya

They've given me a timescale of about 3 months for an improvement. I've had a steroid injection relatively recently so my symptoms haven't been as bad since that, but I will be watching things very closely to see if they get worse , or don't improve, especially as the weather is starting to get colder here and that's always when things are at their worst.

Children aren't immediately on the agenda, but hopefully will be in the next few years and I think my team are wanting to get me on something that will be safe for me to continue taking when the time is right so that there's no fussing about and having the potential problems of new side effects.

I have to be honest , I haven't heard of cimzia , but after a quick search I can see that it is approved for RA here. I don't know how common the use is but it's good to see it is at least approved.

Thankyou, I am taking it seriously I promise. To be honest I'm a bit frustrated because I've been having joint problems from the age of 12 and multiple times me and my mum pushed my doctor's at the time to look into it properly and they just brushed us off and told me to take cocodamol (they seriously handed out pain meds like smarties) . A lot of my family don't really understand my health /treatment options or the impact everything has (I'm guilty of hiding it sometimes if I'm honest because they can panic and always expect me to know everything which is overwhelming at times ) so it's really good to come here and have adult conversations about what's happening and be able to make solid, informed choices so I always appreciate all of the support and advice. It's very isolating when you're young and making massive choices that can have life long impacts without being able to talk to people around you because they don't understand what you're telling them.

I must admit, I don't really understand why my consultant is so against me trying humira or one of the other anti tnfs. From what I can tell, his main concern is that my last reaction was severe and if I had a reaction like that while at home it would be a major problem but I would be willing to have the injections at the hospital for the first few months or so while they see how I react , and I would always inject when either my parents or fiance were here , but alas he's not convinced. It's nice having a consultant that has my interests so at heart but sometimes he's cautious to the point of being over protective. I personally have no objection to trying humira and if I was offered it I would really give it a good try. The other medical professionals I've spoken to about it seem to think it would be a good option for me (one went as far as to call his reaction bs ) .

I think I was thinking of simponi rather than stelera. I know stelera has been mentioned to me a few times by my ibd nurse and she really seems to think it's a good drug, but unfortunately it's not her choice and it's probably going to be early next year before it's being used routinely .

A lot of the time it can be hard to get different specialists to work together even though we do try. A lot of the time the most that happens is they send an email, but even then the other person doesn't always respond (which is frankly just rude ). My rheumy does seem to be keen to involve my ibd team though (although she accidentally emailed the wrong consultant last time ) and is also pressuring my GP to keep the blood tests up to date and keep a proper eye on me (which is no bad thing, they need the occasional kick in the butt.)

I do also get quite a nasty rash on my face , but I've shown photos to my doctor's and they think it's exma (typically it's always gone when i get an appointment) . I'll certainly keep a diary and see if there's any indication of a correlation that's more than just bad chairs.

Regarding the MRI it's a tricky one, often for the "red tape" there needs to be an indication either in the x-rays or blood tests that there is a problem, which of course there won't always be, which is then like banging your head on a brick wall. I actually believe I should have been given one when I I was first referred to rheumy 4 years ago but because my bloods and white cell scan came back ok they just said it was fibromyalgia and left me to get on with it. I wasn't even given any follow up and was totally discharged from rheumy. So I'm glad I've got a different consultant this time. Man our system must sound so silly sometimes. I do believe that if there's not adequate improvement with physio then that would be enough supporting information. If not I'll have to find a way around it. I have been pressing the fact that I have felt improvement on biologics in the past. I will also bring it up when I see my ibd nurse as she's not one to be bothered by red tape, she usually gets very persistent when she wants something done for her patients (she swore with relief when I finally got approval for infusions for Crohn's ) . I will push as hard as I can to get the care I need. Thankyou again, it's very much appreciated
 
Mlp

Thankyou I'd appreciate some updates, really hope it helps your son.

Hm, IVIG could be an interesting option , thankyou I'll try and look into it. I know my infusion nurse administers it to some patients so I may ask her to see if she knows if they have anyone with arthritis using it. It can't do any harm to ask and just see if they'd consider it an option.
 
My kiddo did well on Simponi. It is not approved for Crohn's here, but it is approved for Ulcerative Colitis so we just used it off-label. It took about 3 months to kick in, but when it did, she felt a LOT better (in terms of Crohn's). Her AS hasn't really responded well to anything (she did get better on Simponi though - just not well enough), but it's a work in progress.

I understand that the system is different and can be a pain sometimes. Keep fighting! Anti-TNFs are a very good treatment option for those who have BOTH SpA and Crohn's. Honestly, they are currently the only option. Stelara is being used, but off-label. It is only approved for Crohn's here and psoriatic arthritis, not for axial SpA or AS.

Humira would be the most natural choice, since it is approved for both Crohn's and AS/SpA.

Over here, Cimzia is also approved for Crohn's and SpA, but of course, it sounds like in the UK it isn't.

I haven't ever heard of a white cell scan being used for SpA. Usually here it would be ultrasound for peripheral joints (knees, hands, heels, elbows) or MRI for lower back. A negative scan shouldn't have ruled out further investigation and neither should negative blood work. About 40% of people with SpA have negative ESR and CRP. My older daughter always has perfectly normal blood work, the younger one has an elevated CRP but normal ESR.

Keep fighting and hang in there. It is likely you have to prove that SSZ won't work before they'll try anything else, so you may as well stick with it for 3 months.

Then if it doesn't work. I'd get your IBD nurse to bother your consultant. Or your rheumatologist to contact your consultant. The last thing you need is permanent damage to your joints on top of everything else.

Another thought - are there any support groups or the equivalent of the arthritis foundation over there? Here we have events run by the arthritis foundation - juvenile arthritis family days, the Juvenile Arthritis Conference (which is for kids to young adults and parents - my girls are in their 20s and love it), fundraising, advocacy in Washington DC, and that kind of stuff. Some hospitals have support groups. That sort of stuff really helped my girls feel less alone and isolated in all this.
 
I'm not sure of what simponi is approved for here, we tend to have quite a lot of hoops to jump through before we can use a medication off label, and the rules are different in England to Wales, so it can be tricky finding information that directly applies to me, but I'll do some digging. I may be able to find a copy of the drug information leaflet and that should give a general idea of the alternative uses.

I can only find links related to arthritis when looking for cimzia, but that may be because its what its most frequently prescribed for, I'll have a good rummage when I have some time and see what I can find out about it.

Honestly my first rheumy was not very useful, even the radiologist doing the white cell scan told me that an MRI would have been more appropriate. At the time we thought that if the scan didn't give us answers, I'd be sent for more testing, but instead he used it as a weapon to say it wasn't anything serious. When I first saw my new rheumy and explained to her about my past tests and what they had said regarding the results, she rolled her eyes and wasn't impressed at all, and we basically started from scratch. I have always found that the biggest barrier to getting testing or meds is not the doctors, but the pen pushers. It does make it more difficult if you don't have a good relationship with the consultant, but usually you can get around it to an extent by going to the nurses, who will argue on your behalf, but, even when I've had consultants 100% behind me, we've come across stupid barriers in terms of proving how sick I am etc.

I will definitely enlist my nurses. I think one of the infusion nurses is going to have a mental breakdown if he has to argue with anymore consultants or pen pushers because he's really tired of us not getting listened to.

The support sounds great, I haven't had chance to look into it deeply, but so far the nearest support group is 30 miles away. I have had a look to see if there's any online forums and the only ones I can find are either for RA or seem very inactive. I have an infusion next week so I'll ask the nurses if they know anything about any local groups. I know when I was diagnosed with Crohn's finding this place really made a difference and helped me feel a lot more confident when self advocating.

Thankyou again, I really hope your girls are doing as well as possible. If they ever want someone around their own age to talk to you are more than welcome to put them in touch with me.

Cross stitch - Hey you! hope you're doing well. Thankyou, I am reasonably optomistic that now we know what the true cause is we can really start to fight it.
 
I am well thank you! In fact, I found out in June after my recent colonoscopy that I'm in remission!

Top of my left foot has been bothering me for awhile so mentioned it to my pcp today during my annual. If it's not better in 3 weeks when I see her again we're going to have to xray it.

But, other than that no real complaints!!!:ybiggrin:
 
Cross stitch - I'm so glad you're in remission!! Its been a long time coming I know and you so deserve the break. I hope your foot is better soon and if they need to do any investigations you don't have to wait too long.

I've just been to the doctors for my B12 injection and I was chatting to the nurse, they actually have me down as having seronegative RA, and it's being flagged that I need an RA review (although she said as I've only recently been seen by the GP for this it might not be needed for a few months). I'm not sure at this point whether this is what they've been told by the rheumy or if they've just put that protocol on to make sure I get my bloods etc done but if this is what they're stating as my formal diagnosis, it gives me a much stronger chance of getting onto DMARDs / biologics in the future and means I should get much closer monitoring and easier access to scans.

Some doctors I come across still claim I don't really have Crohns or that its "not as bad as the symptoms suggest" because my blood work is always clean, so I was concerned that the same would happen again with my joints, but so far they seem to be taking it really seriously, and from the looks of it my rheumy has sent my GP the entire shared care protocol (basically a hospitals way of kicking a GP up the butt) and really laid out what needs to be done to get this under good control. They seem to be taking this really seriously which is encouraging.
 
Glad to hear you've got somebody whose finally taking you seriously!!! It's about time they really actually hear you and are wanting to find out what to do for you...
 
I've just been to the doctors for my B12 injection and I was chatting to the nurse, they actually have me down as having seronegative RA, and it's being flagged that I need an RA review (although she said as I've only recently been seen by the GP for this it might not be needed for a few months). I'm not sure at this point whether this is what they've been told by the rheumy or if they've just put that protocol on to make sure I get my bloods etc done but if this is what they're stating as my formal diagnosis, it gives me a much stronger chance of getting onto DMARDs / biologics in the future and means I should get much closer monitoring and easier access to scans.
Click to expand...

Generally, it's SpA that is associated with Crohn's, not RA. If you have spinal involvement - SI joints or lumbar spine - it's definitely SpA and not RA.

The distinction is important because RA can be treated with DMARDs - Plaquenil, Sulfasalazine, MTX etc. and axial SpA (when the spine is involved) does not respond to them.

If you have an RA dx, you may be stuck trying DMARDs for a while - especially a combination of them. They like to do "triple therapy" in the UK - usually MTX, Sulfasalazine and Plaquenil. It actually does work well, as well as a biologic according to some studies, but there tend to be more side effects.

Also, something like Stelara would NOT work for RA - it failed in trials. It is approved for PsA (which is a type of SpA) and is in trials for axial SpA and AS.

So it is important to figure out which one you have - SpA (which is always seronegative) or seronegative RA. SpA generally involves the lower back (SI joints) and hips and enthesitis (inflammation where tendons/ligaments insert into the bone) is a big part of it. Many people with SpA are HLA B27+ and it doesn't always show up in blood work (about 40% have a normal ESR and CRP).

RA generally involves the small joints of the hands and the feet. Tends not to affect the lower back. No enthesitis. The damage it causes looks different on an MRI vs. the damage caused by SpA.

So it is important to figure out which one you have because it will affect treatment.
 
Maya - Thanks, I am aware that I need to know which one it is, and as I mentioned at this point I'm not sure if the doctors have just put the RA protocol in place because they want me to get a higher amount of monitoring or if it is because the rheumy has actually told them she suspects sRA. The nurse that does my B12 is going to talk to one of the doctors at my GP surgery who has a special interest in joint problems to see if they can give us any more information but unfortunately I probably won't be able to find out for sure what they're thinking until I next see the rheumy.

I have had joint problems since well before my Crohn's symptoms started, so there is a possibility its actually a totally separate problem, I know that sometimes the joint problems do start first, but at this point we are considering both possibilities.

I do have involvement in my hands and feet, I get swelling and stiffness in my fingers and knuckles, and often have to remove rings that would normally fit me perfectly because they are cutting into me due to swelling, and I have problems with my ankles and toes since my teens.

Unfortunately I may be stuck trying things out whatever diagnosis they decide on, as that is generally the way it is in the UK, even if there is only a very small chance that treatments will work. I remember that my IBD nurse was pretty much driven crazy because of the amount of hassle that we went through trying to get me onto inflectra including trying medications we knew wouldn't actually work because we couldn't get approval otherwise. RA is generally taken a bit more seriously than other forms of arthritis by panels (even though they should all be treated with equal concern) so generally they are more willing to step treatment up, but it's still a battle. There is a massive amount of red tape here, some of which is about reducing risk, but a lot is to do with cost and its incredibly frustrating.

As for an MRI , I know its important to see whats going on, and I will do what I can to try and get one sorted, but it's not easy here. I think the rheumy I have will listen to me and I hope that if things aren't helped by what we're currently doing then she'd be willing to put me forward for one, but I don't know for certain ( I am aware that it would be best to have one even if the current treatment helps, but unfortunately that's really unlikely). There always seems to be a battle here between advocating for yourself and getting what you need and knowing when to step back a little because you can be labelled as a problem patient or someone who over states whats happening and it can actually really cause problems when early on in forming a relationship with a health care professional as each one has a line as to how much patient involvement they tolerate ( of course the best ones encourage as much involvement as possible).

I honestly do know how important all of this, and please believe me when I say that I am doing my best to get things sorted out and make sure that I get everything I need, but I have to work with the system and to an extent play by the doctors rules. I fought very hard to get my Crohn's diagnosis and have been fighting for years to get a diagnosis and treatment for my joints. I am really quite stubborn with things like this so I won't give up or settle for second best, but I am doing a lot of it basically on my own and have always had to be my own advocate. Even as a teenager my parents didn't really understand what was happening medically and it's always been completely on me to make the right choices and get the correct treatments. It's a lot to take on when I'm still only 24 and haven't had a break since I was about 12, but I'm doing everything in my power and I do appreciate everyone's support.
 
You are doing an incredible job of managing everything. I do understand how hard it is - it's a fine line between advocating for yourself and becoming a problem. And I know the system is VERY different over there.

Just would hate for you to develop damage in your joints because you're not treated correctly.

The fingers and toes can be involved in SpA too. The inflammation in SpA looks different vs. the inflammation in RA - an ultrasound could show the differences.

If you had seropositive RA, I would be more inclined to believe it is RA - since it's seronegative and you have a history of Crohn's, I would really guess SpA. Especially if you have hip or lower back pain.

For my daughter, the arthritis was diagnosed much before the Crohn's, so as you know, it's completely possible for it to show up before the IBD.

Lower limb joints (hips, knees, ankles, feet) + lower back involvement is pretty characteristic of SpA. So is any tendon involvement - heel pain, pain above the knees etc.

I guess the best you can do now is wait to see the rheumatologist and then I'd ask for clarification, especially if Sulfasalazine does not help. If it doesn't help, then I would talk to the rheumatologist about which dx they think you have and really consider pushing for imaging and then pushing for a biologic that will treat the arthritis too - either an anti-TNF or Stelara.

An anti-TNF should treat any of the above diagnoses - axial SpA or seronegative RA but Stelara will probably only treat axial SpA.

As you know, I have young adults too and I know how much time and energy it takes to manage all the medical stuff. Sending hugs :ghug:.

Hang in there - hopefully the Sulfasalazine will work like magic.
 
Hi all

I have now been taken off the sulfasalizine as it has been causing problems with my white blood cells. It has been happening for a couple of months now, at first my rheumy insisted it was just a blip/a one off and kept me on it despite me having reservations but it has continued to happen and my GI has now stepped in and taken me off it as its also not appropriate for my crohns which is currently flaring a little because of the change in medication.

I am not due to see my rheumy for around 3 months, but my GI is contacting her to tell her what we've had to do so that she is aware of whats going on, so she may call me in to see her sooner. Until that point I'm not sure whats going to happen joints wise but I have the relevant numbers to call if theres a problem.
 
Sorry to hear it didn't work for you! There are some other choices if you have RA - Plaquenil is one. But unfortunately, generally Plaquenil is considered milder than even SSZ, so it may not work.

Besides that, MTX and Arava which are very effective but also may give you issues with your blood work. And they are not used in women who want to get pregnant in the near future.

But my 24 year old is on MTX and my almost-21 year old is on Arava and neither of their doctors are concerned. They say when they want to get pregnant, we will take them off those meds. And I hope that is FAR away ;)!
 
You could try methotrexate in the meantime you dont have children. You are a responsible patient and that is quite obvious. A doctor could trust that you will protect yourself from being pregnant under this treatment. My drs (GI and rhumy) had no issues, they were not worried, prescribing it to me few years ago.
Plaquenil is also used in rhumatology for people with RA or in dermatology as well. Plaquenil and methotrexate are often combined as well.
maybe one of these drugs could be combined to the CD treatment you are taking right now.
 
Hi everyone, so it's been a while since I've posted anything.

The clinics here are all massively behind. I saw my gastro in December and he wanted me back in 8 weeks and I still haven't been seen, so that gives you an idea of how bad things are and there doesn't seem much they can do about it. It's just the pressure of the winter and government cuts etc etc .

But, I have at least managed to talk to him about methotrexate and he's said there are a few patients who are using methotrexate and vedolizumab and they seem to be doing OK. But I wouldn't be allowed to use an anti tnf and vedo together.

I've also managed to see the rheumatologist and they've agreed with him .

The rules have changed quite a bit on pregnancy. You still can't get pregnant while taking it but you only have to wait one month before trying for a baby when you stop it. Soo... I'm now on methotrexate injections every week.

We're still being very cautious though. I'm only on 7.5mg to start and having very regular blood tests and monitoring as we're all concerned about my past problems with immunosuppressive medications (which is why we weren't keen on me going on it without exhausting all other options). If there are any problems I'll be coming straight back off it, and we'll have to think outside the box.

We're hoping that as well as managing the arthritis, it will help me to last between infusions as I'm still getting flare ups towards the end of the 8 weeks.
 
valley:

Sending you my support. 🌻

I read this entire thread because my sister has had RA for years and she recently told me she is going to start getting infusions. I know she takes prednisone now, but I do not know if she takes any other prescription medications for her RA. She is the kind of person to take Tylenol and a heating pad but probably not worry about the damage that is being done year after year ?

I know her fingers and toes have hurt for a while now, but I noticed that she has had back pain the last 3 or so years. Her pain is now affecting her quality of life.

Maybe RA should not be her real diagnosis ?

And I do not know why she has not started biologics sooner.......does her doctor not recommend biologics or has my sister just been not wanting to do infusion drugs ?

My sister does not share all her health problems with me.

This thread would be something I could share with her.

🐝
 
Hi there,

RA can cause problems in the back, but there are so many forms of arthritis that misdiagnosis is possible, so if she wanted to there's no harm in asking for a second opinion.

It might be that your sister has been on other medications like sulfasalizine or MTX but just hasn't said anything? In my experience its uncommon to jump straight to biologics except in very severe cases, so I would imagine that they have tried some other medications first.

Please feel free to show her this thread but remember everyone presents differently with these types of illness and encourage her to talk to her doctor if she does have any doubts.
 
There are many ways RA and SpA are different, but just because your sister has back pain, Lynda doesn't mean she doesn't have RA.

There are many differences between RA and SpA.

One of them is age. RA tends to affect older people at (I think it generally starts in the 40s-60s). Of course, there are always outliers who have disease onset when they are younger.

SpA tends to be diagnosed in younger people. I think it is most often diagnosed in the early 20s to 30s. Age of onset of inflammatory back pain has to be below 45 - that is one of the criteria for a diagnosis of SpA.

For your sister, Lynda, back pain doesn't necessarily mean she has the wrong diagnosis. IT could mean she has RA and back pain. The back pain may not even come from the RA - many people have chronic back pain. It could be degenerative disc disease or osteoarthritis or a disc issue. It could simply be pain for no visible reason - it could be muscular. Back pain is very common as you get older.

RA does affect certain parts of the back too - most often the cervical spine. SpA affects all of the spine, but it starts in the SI joints and then moves up. In women sometimes the neck is affected first, but usually lower back or butt pain is one of the first symptoms in adults.

Inflammatory back pain has certain features - it gets worse with rest and better with movement. It is worst in the morning and gets better through the day. Regular back pain (not from an inflammatory cause) is best in the morning, gets worse with movement and pain tends to occur at night or in the evening or after a lot of activity.
 
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) .
 
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.
 
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 .
 
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
 
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.
 
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.
Click to expand...
 
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.
 
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. :ybatty: Looks like my hopes and wishes were wrong. Sending you lots and lots of hugs. :hug:
 
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).
Click to expand...

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!
 
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 isn’t 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
Wouldn’t wish that on anyone
 
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.
 
What are they giving you to stop the progression of your arthritis?
Pt won’t stop the arthritis from progressing and doing damage that can’t be reversed
 
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.
 

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