My current situation
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Thanks both.
I've been chatting to my mum and we can't actually remember the rheumatologist I saw really examining my actual joints.. He looked at my hands and said they didn't seem swollen (which they aren't 100% of the time) and then started poking me, looking at the pressure points they use to diagnose fibromyalgia. Thinking back, we don't think he did any of the checks like flexing joints which my mum had when she was diagnosed with arthritis. When I flex and extend my knees they grind the same way that hers do and she was told this is because of arthritis. I know it could be coincidence but it just got me thinking. The appointment was at least three years ago, so it's hard to remember everything, but I do remember feeling a bit rushed and a bit like he didn't focus that much on the joints that were causing pain.
Yes Maya you're correct I've only had a nuclear bone scan. When I was actually having the scan they told me that it looked like there was a little response in my hands and knees but that it needed to be looked over by someone else. The next I heard was my gp telling me I had fibromyalgia (the rheumy didn't even call me or anything to tell me) and I just assumed that whoever looked over the scan had discounted the response as background radiation as they say that can interfere with the results. I never got the results of the blood tests but assumed that they were okay.
Another thing we remembered is that when I was 12-13 I was having a lot of shoulder pains. I went to the doctors who sent me for an x ray, which they told me had come back as abnormal but they didn't explain any more than that. The hospital that did the xray had asked that more be taken to check my other shoulder but the doctor decided it wasn't needed and sent me away with painkillers. Is it at all possible for the joint problems to be present before noticeable ibd symptoms? Could that xray have shown some side of things to come? I do get shoulder pain, but I've had it so long I just ignore it.
The past few weeks I have had swelling in my hands every night and my knees most nights. The day before yesterday I was almost in tears every time I put my foot to the floor because my hips hurt so much whenever I had any weight on them or tried to move.
My esr and crp have been raised in the past but they've always put it down to my crohns and of course I've not questioned that as it made sense.
When I was younger I got put on NSAIDs a lot (before crohns) and they always made things feel better. I've never been able to find a painkiller that helped as much as naproxen.
I feel a burning in my knees and hips quite often too which I've never really given much thought to as it's just something that's there. I can't describe the relief of holding something cold against a burning joint.
I will definitely look through everything you've both written and all the links etc and I'm going to use them to form some questions and see what seems to fit me and what doesn't to see if I can make sense of it all. I know in the past I've been told I need to be careful because I've had a lot of xrays so I would probably be better off with an MRI provided that the metal plate I've recently had put into my jaw isn't magnetic.
Thankyou both so much. You've been a massive help!
I've been chatting to my mum and we can't actually remember the rheumatologist I saw really examining my actual joints.. He looked at my hands and said they didn't seem swollen (which they aren't 100% of the time) and then started poking me, looking at the pressure points they use to diagnose fibromyalgia. Thinking back, we don't think he did any of the checks like flexing joints which my mum had when she was diagnosed with arthritis. When I flex and extend my knees they grind the same way that hers do and she was told this is because of arthritis. I know it could be coincidence but it just got me thinking. The appointment was at least three years ago, so it's hard to remember everything, but I do remember feeling a bit rushed and a bit like he didn't focus that much on the joints that were causing pain.
Yes Maya you're correct I've only had a nuclear bone scan. When I was actually having the scan they told me that it looked like there was a little response in my hands and knees but that it needed to be looked over by someone else. The next I heard was my gp telling me I had fibromyalgia (the rheumy didn't even call me or anything to tell me) and I just assumed that whoever looked over the scan had discounted the response as background radiation as they say that can interfere with the results. I never got the results of the blood tests but assumed that they were okay.
Another thing we remembered is that when I was 12-13 I was having a lot of shoulder pains. I went to the doctors who sent me for an x ray, which they told me had come back as abnormal but they didn't explain any more than that. The hospital that did the xray had asked that more be taken to check my other shoulder but the doctor decided it wasn't needed and sent me away with painkillers. Is it at all possible for the joint problems to be present before noticeable ibd symptoms? Could that xray have shown some side of things to come? I do get shoulder pain, but I've had it so long I just ignore it.
The past few weeks I have had swelling in my hands every night and my knees most nights. The day before yesterday I was almost in tears every time I put my foot to the floor because my hips hurt so much whenever I had any weight on them or tried to move.
My esr and crp have been raised in the past but they've always put it down to my crohns and of course I've not questioned that as it made sense.
When I was younger I got put on NSAIDs a lot (before crohns) and they always made things feel better. I've never been able to find a painkiller that helped as much as naproxen.
I feel a burning in my knees and hips quite often too which I've never really given much thought to as it's just something that's there. I can't describe the relief of holding something cold against a burning joint.
I will definitely look through everything you've both written and all the links etc and I'm going to use them to form some questions and see what seems to fit me and what doesn't to see if I can make sense of it all. I know in the past I've been told I need to be careful because I've had a lot of xrays so I would probably be better off with an MRI provided that the metal plate I've recently had put into my jaw isn't magnetic.
Thankyou both so much. You've been a massive help!
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Shoulder involvement does occur with SpA and is not uncommon. It is also definitely possible to have joint symptoms occur before bowel symptoms.
A lot of the things you've said are red flags for SpA - high ESR and CRP (though that could very well be the Crohn's), pain that gets better with NSAIDs, steroids and Remicade.
Both my girls have had trouble bearing weight when they've had swollen and inflamed knees. My younger one used a knee brace which helped a little bit. She has also had lots of problems with her hips and unfortunately, we have no good solution for that besides steroid injections into the joint (which obviously you can only do so many times). Ice and heat work well for both my girls -- both girls prefer ice, just like you do.
I would recommend getting copies of your records - old x-rays, the physiotherapist's evaluation, the old rheumatologist's evaluation (if it's possible - I know the NHS is different).
The rheumatologist should DEFINITELY examine you - I have never been to one that doesn't look at every joint and check range of motion! And we have been to a lot of rheumatologists, between my husband and girls!
I hope you can request a different one - is that possible?
I would also really push for an MRI of the worst joints. It's especially hard to tell with hips without an MRI.
Also, many women with SpA tend to be diagnosed with fibromyalgia first. Unfortunately, some of the areas where enthesitis is common are also areas there are tender points for fibromyalgia. That's why it's really important for a doctor to examine you carefully, look at your history and do proper imaging. Things like morning stiffness, swelling, redness or warmth in a joint, and pain that gets better with movement and worse with rest are features of SpA but not fibro.
In women, SpA tends to involve peripheral joints more and presents differently from AS/SpA in men which tends to mostly involve the spine. Often doctors decide women have fibromyalgia because they don't match the pattern of AS (starts in the SI joints, ascends up the spine).
My girls were lucky to be diagnosed early because they have an extensive family history of AS, are HLA B27+ and their SI joints were involved relatively early. Plus, the criteria are less strict for children.
Anyway, good luck!
A lot of the things you've said are red flags for SpA - high ESR and CRP (though that could very well be the Crohn's), pain that gets better with NSAIDs, steroids and Remicade.
Both my girls have had trouble bearing weight when they've had swollen and inflamed knees. My younger one used a knee brace which helped a little bit. She has also had lots of problems with her hips and unfortunately, we have no good solution for that besides steroid injections into the joint (which obviously you can only do so many times). Ice and heat work well for both my girls -- both girls prefer ice, just like you do.
I would recommend getting copies of your records - old x-rays, the physiotherapist's evaluation, the old rheumatologist's evaluation (if it's possible - I know the NHS is different).
The rheumatologist should DEFINITELY examine you - I have never been to one that doesn't look at every joint and check range of motion! And we have been to a lot of rheumatologists, between my husband and girls!
I hope you can request a different one - is that possible?
I would also really push for an MRI of the worst joints. It's especially hard to tell with hips without an MRI.
Also, many women with SpA tend to be diagnosed with fibromyalgia first. Unfortunately, some of the areas where enthesitis is common are also areas there are tender points for fibromyalgia. That's why it's really important for a doctor to examine you carefully, look at your history and do proper imaging. Things like morning stiffness, swelling, redness or warmth in a joint, and pain that gets better with movement and worse with rest are features of SpA but not fibro.
In women, SpA tends to involve peripheral joints more and presents differently from AS/SpA in men which tends to mostly involve the spine. Often doctors decide women have fibromyalgia because they don't match the pattern of AS (starts in the SI joints, ascends up the spine).
My girls were lucky to be diagnosed early because they have an extensive family history of AS, are HLA B27+ and their SI joints were involved relatively early. Plus, the criteria are less strict for children.
Anyway, good luck!
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Thanks again Maya!
My old xrays were done by an old gp practice and I've changed doctors since then, so it might be a bit tricky to get hold of those, but if my memory is correct data protection means they should have kept them and should keep them until I'm 25. But I'm hazy on that stuff.
I can request a different rheumy if/when I get referred. We are allowed to ask to be seen by a different doctor or a different hospital if we are not totally comfortable with the care that we have received or if we feel like something is being missed.
MRIs are a lot harder to get than they should be here, all due to cost. But all the information I've had the last few days should help me put my case forward and show that it really is something I need. I mean, MRIs are not exactly fun, so why they think people would want them if they didn't feel they needed them is beyond me.
Thankyou for all the information
it really is very helpful and I'll be making some notes ready for my next appointment. Thankfully my IBD nurse is usually really receptive and listens to my opinions so it shouldn't be too much of a battle to get them to consider a scan or trialing a change in meds or even just adding a low dose of steroids to see if they can note an improvement for themselves.
My old xrays were done by an old gp practice and I've changed doctors since then, so it might be a bit tricky to get hold of those, but if my memory is correct data protection means they should have kept them and should keep them until I'm 25. But I'm hazy on that stuff.
I can request a different rheumy if/when I get referred. We are allowed to ask to be seen by a different doctor or a different hospital if we are not totally comfortable with the care that we have received or if we feel like something is being missed.
MRIs are a lot harder to get than they should be here, all due to cost. But all the information I've had the last few days should help me put my case forward and show that it really is something I need. I mean, MRIs are not exactly fun, so why they think people would want them if they didn't feel they needed them is beyond me.
Thankyou for all the information
it really is very helpful and I'll be making some notes ready for my next appointment. Thankfully my IBD nurse is usually really receptive and listens to my opinions so it shouldn't be too much of a battle to get them to consider a scan or trialing a change in meds or even just adding a low dose of steroids to see if they can note an improvement for themselves.
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If not MRI's push for ultrasounds. They're relatively cheap and they would show inflammation. They're not as accurate, but if you can't get an MRI then they're the second best.
A steroid trial is also a good idea but only after imaging is done (if they're willing to do imaging).
Very glad to hear that the IBD nurse is on your side.
Voltaren gel might be an option while you're waiting. You'd have to check with your GI or IBD nurse, but much less is absorbed, so it's not as bad for the gut. My daughter uses it often on her knees. I think it might even be over the counter in the UK? Not sure.
But it might help with pain while you're waiting.
A steroid trial is also a good idea but only after imaging is done (if they're willing to do imaging).
Very glad to hear that the IBD nurse is on your side.
Voltaren gel might be an option while you're waiting. You'd have to check with your GI or IBD nurse, but much less is absorbed, so it's not as bad for the gut. My daughter uses it often on her knees. I think it might even be over the counter in the UK? Not sure.
But it might help with pain while you're waiting.
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They give ultrasounds away like sweets here, so that should be really easy to get if an mri isn't possible. To be honest if they take on board what the physio said to me in the way that I think they will then I don't think an mri or rheumy referral should be too much of an issue, it's just a case of me getting my case across and hoping the swelling is there when I go so they can see what I'm talking about and I don't look crazy. The only other thing is working out if I'm actually still allowed them but I'm pretty sure I would have already been told if I wasn't meant to have them.
Yes we have volterol gel here, I actually have it in my meds drawer. We can by it in chemists and they also do tablets and patches. I've been told gels are fine just not the tablets for the same reason you gave. I've also got a tens machine which I use on my hips but I have to be a bit careful with that because of my heart going a bit mad sometimes. I've got a heat pad too that usually settles my tummy pain but doesn't always do the same joint wise. I used to use a spray called deep freeze but it sets my asthma off so had to stop that one.
Yes we have volterol gel here, I actually have it in my meds drawer. We can by it in chemists and they also do tablets and patches. I've been told gels are fine just not the tablets for the same reason you gave. I've also got a tens machine which I use on my hips but I have to be a bit careful with that because of my heart going a bit mad sometimes. I've got a heat pad too that usually settles my tummy pain but doesn't always do the same joint wise. I used to use a spray called deep freeze but it sets my asthma off so had to stop that one.
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Hey guys, just a quick update,
I've just been to see my consultant and we are persisting with Vedolizumab for the time being (infusion nurse will not be amused by that one). I've had some blood tests done but other than that it's just wait and see what happens now, if the Vedolizumab doesn't work we'll have to look at other things but I'm getting small signs that it may be starting to kick in as I'm needing less morphine and I'm eating better (helped by my jaw healing) plus mainting my weight.
The big news though is that he thinks I need a referral to rheumatology and I didn't even have to ask. I just told him that the physio at my gp told me he didn't think my current problem is fibromyalgia related, and he said that joint problems are closely linked with crohns but that if I'm having a real problem with it then it should be looked into so he's writing to my gp to get them to refer me.
He didn't say when he wants my next appointment to be but that'll get sorted by the people on reception, if I've not heard anything in a month or so I'll ask when I go for my infusion.
I've just been to see my consultant and we are persisting with Vedolizumab for the time being (infusion nurse will not be amused by that one). I've had some blood tests done but other than that it's just wait and see what happens now, if the Vedolizumab doesn't work we'll have to look at other things but I'm getting small signs that it may be starting to kick in as I'm needing less morphine and I'm eating better (helped by my jaw healing) plus mainting my weight.
The big news though is that he thinks I need a referral to rheumatology and I didn't even have to ask. I just told him that the physio at my gp told me he didn't think my current problem is fibromyalgia related, and he said that joint problems are closely linked with crohns but that if I'm having a real problem with it then it should be looked into so he's writing to my gp to get them to refer me.
He didn't say when he wants my next appointment to be but that'll get sorted by the people on reception, if I've not heard anything in a month or so I'll ask when I go for my infusion.
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I'm not starting a new biologic, I'm still on the same one as before, I've got to give it longer to work.
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Hey all,
I just realised I totally forgot to let you know what's happening with my heart! When I went in for my jaw surgery, the anaesthetist tracked down the results of all my tests and found that the Echo came back clear.
The cardiologist has decided that it is likely my elevated heart rate is the result of my multiple health conditions and not something structurally wrong with my heart itself. He is happy that for the time being nothing needs to be done, I could have been put on medication, but that comes with it's own risks and complications and he feels that with me being so young the risks currently out weigh the benefits. He has placed me back in the care of the GP but if the tachycardia starts to interfere with my day to day life or impacts on my treatments then they will instruct the GP on how best to control it.
There is some chance it will get worse in the future and need medicating or further investigation, but at the moment he thinks that my heart is just having to work harder due to everything else that is going on in my body. He doesn't think there is any correlation with mental stress ( it had been suggested by other doctors that I just got stressed in hospital) as when I had my appointment with him I was totally calm and my blood pressure and breathing rate weren't raised. I do have elevated blood calcium so there is a chance that while it's not having a massive effect in general, it could be increasing my heart rate.
In other news, I'm now on B12 injections every 4 weeks as I am allergic to the 12 weekly jabs, so I am in discussion with the nurses at the GP surgery regarding learning to self inject as visiting them every 4 weeks is a really expensive (bus fare) and will be very inconvenient when I eventually go back to work.
My jaw is healing very well, I have been discharged from the surgical team and am just following up with my orthodontist. I have had my fixed braces removed and just have a clear retainer which I wear in bed. I still have some numbness on the left hand side of my mouth, and am still getting some pain there as the nerves are repairing. There is a chance that some of the numbness will be permenant but it's not causing me too many issues so I can live with that. I can pretty much eat what I like now, but I have to be careful with very hard or really chewy things still, as my mouth gets very achey and a bit painful if I over do things. Full healing will take a year or more, so I still have quite a long way to go, but at the moment things are looking good.
I just realised I totally forgot to let you know what's happening with my heart! When I went in for my jaw surgery, the anaesthetist tracked down the results of all my tests and found that the Echo came back clear.
The cardiologist has decided that it is likely my elevated heart rate is the result of my multiple health conditions and not something structurally wrong with my heart itself. He is happy that for the time being nothing needs to be done, I could have been put on medication, but that comes with it's own risks and complications and he feels that with me being so young the risks currently out weigh the benefits. He has placed me back in the care of the GP but if the tachycardia starts to interfere with my day to day life or impacts on my treatments then they will instruct the GP on how best to control it.
There is some chance it will get worse in the future and need medicating or further investigation, but at the moment he thinks that my heart is just having to work harder due to everything else that is going on in my body. He doesn't think there is any correlation with mental stress ( it had been suggested by other doctors that I just got stressed in hospital) as when I had my appointment with him I was totally calm and my blood pressure and breathing rate weren't raised. I do have elevated blood calcium so there is a chance that while it's not having a massive effect in general, it could be increasing my heart rate.
In other news, I'm now on B12 injections every 4 weeks as I am allergic to the 12 weekly jabs, so I am in discussion with the nurses at the GP surgery regarding learning to self inject as visiting them every 4 weeks is a really expensive (bus fare) and will be very inconvenient when I eventually go back to work.
My jaw is healing very well, I have been discharged from the surgical team and am just following up with my orthodontist. I have had my fixed braces removed and just have a clear retainer which I wear in bed. I still have some numbness on the left hand side of my mouth, and am still getting some pain there as the nerves are repairing. There is a chance that some of the numbness will be permenant but it's not causing me too many issues so I can live with that. I can pretty much eat what I like now, but I have to be careful with very hard or really chewy things still, as my mouth gets very achey and a bit painful if I over do things. Full healing will take a year or more, so I still have quite a long way to go, but at the moment things are looking good.
Cross-stitch gal
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Yay that things seem to be working for you!!! Boy, it's been a long road and still a long one to go. But, it's about time that something is going right for you! Sending you lots of hugs!!!
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AmenYay that things seem to be working for you!!! Boy, it's been a long road and still a long one to go. But, it's about time that something is going right for you! Sending you lots of hugs!!!
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Hey guys,
so after my last update things have been a bit rocky for me, I've been really up and down, going from feeling relatively OK to not being able to move with pain and nausea in the blink of an eye.
It's really hard to tell if the vedolizumab is having any affect as of yet, as my symptoms are really fluctuating, and we can't tell if that's because its starting to kick in and reduce the inflammation or if its just because that's what my Crohn's has always been like. Most notably, after my 4th infusion i had about 2 weeks where I didn't feel so bad, I still had pain and nausea, but had more of an appetite and the pain was bareable. The 3rd and 4th weeks were horrible though, I was in so much pain I didn't even get out of bed some days which is really not like me. I also had really bad nausea which kept me up at night and persisted even with metaclopramide and cyclizine.
I had my 5th infusion on monday and had a chat with my IBD nurse about how things are going. She told me that although official data says that they should expect improvement in symptoms at week 14, they are finding that with many Crohn's patients there isn't a noticeable difference until week 24, so it could be another 10 weeks or so before we can tell if this is really going to work for me. She said there are things they can try like moving infusions closer together if need be, but for now my infusions will start being every 8 weeks. She advised I speak to my GP about anti sickness options and tweaking my pain relief and also look at CCUK's information on fatigue. My most recent blood tests look pretty good but its fairly well known that my blood tests don't always reflect what's actually happening, and because of the way vedo works it's quite possible that the symptoms will linger for a little while even if it is working.
I went to see my GP yesterday and have changed my anti-sickness to prochlorperazine tablets to see if that makes any difference. We added in codine to my pain relief so that i have an intermediate option between paracetamol and oramorph because previously I have avoided taking painkillers because I didn't want to take the morphine all the time and didn't always feel the pain was worth it but the paracetamol doesn't do anything to improve things.
Ironically today I feel slightly better, I'm unsure if thats because I had the infusion monday and B12 tuesday, or because my body is just trying to wind me up, but I am keeping a symptom diary to see how things progress and try to pick out a pattern. I am thinking that maybe what I'm experiencing is the vedo "wearing off" as I get closer to the next dose, and then kicking in a few days later. In which case I am hopeful that bringing the infusions closer will be an option for me. My IBD nurse seemed to think it would be easily doable but the final decision would unfortunately not be hers.
My jaw is healing well and I am eating pretty normally. I still have loss of sensation on the left side and it's been quite tender the past few days but nothing too alarming. I think its just the changeable weather we have. I think I'm also coming down with a cold which I imagine would have some affect on it too.
so after my last update things have been a bit rocky for me, I've been really up and down, going from feeling relatively OK to not being able to move with pain and nausea in the blink of an eye.
It's really hard to tell if the vedolizumab is having any affect as of yet, as my symptoms are really fluctuating, and we can't tell if that's because its starting to kick in and reduce the inflammation or if its just because that's what my Crohn's has always been like. Most notably, after my 4th infusion i had about 2 weeks where I didn't feel so bad, I still had pain and nausea, but had more of an appetite and the pain was bareable. The 3rd and 4th weeks were horrible though, I was in so much pain I didn't even get out of bed some days which is really not like me. I also had really bad nausea which kept me up at night and persisted even with metaclopramide and cyclizine.
I had my 5th infusion on monday and had a chat with my IBD nurse about how things are going. She told me that although official data says that they should expect improvement in symptoms at week 14, they are finding that with many Crohn's patients there isn't a noticeable difference until week 24, so it could be another 10 weeks or so before we can tell if this is really going to work for me. She said there are things they can try like moving infusions closer together if need be, but for now my infusions will start being every 8 weeks. She advised I speak to my GP about anti sickness options and tweaking my pain relief and also look at CCUK's information on fatigue. My most recent blood tests look pretty good but its fairly well known that my blood tests don't always reflect what's actually happening, and because of the way vedo works it's quite possible that the symptoms will linger for a little while even if it is working.
I went to see my GP yesterday and have changed my anti-sickness to prochlorperazine tablets to see if that makes any difference. We added in codine to my pain relief so that i have an intermediate option between paracetamol and oramorph because previously I have avoided taking painkillers because I didn't want to take the morphine all the time and didn't always feel the pain was worth it but the paracetamol doesn't do anything to improve things.
Ironically today I feel slightly better, I'm unsure if thats because I had the infusion monday and B12 tuesday, or because my body is just trying to wind me up, but I am keeping a symptom diary to see how things progress and try to pick out a pattern. I am thinking that maybe what I'm experiencing is the vedo "wearing off" as I get closer to the next dose, and then kicking in a few days later. In which case I am hopeful that bringing the infusions closer will be an option for me. My IBD nurse seemed to think it would be easily doable but the final decision would unfortunately not be hers.
My jaw is healing well and I am eating pretty normally. I still have loss of sensation on the left side and it's been quite tender the past few days but nothing too alarming. I think its just the changeable weather we have. I think I'm also coming down with a cold which I imagine would have some affect on it too.
