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Crohn's Disease Forum » Extra Intestinal Manifestations » Arthritis » Possibility of osteoarthritis?


 
01-14-2014, 05:54 PM   #61
Jennifer
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Everyone's symptoms are different and I've seen some members mentioning joint pain as a precursor to a flare. Some mention flu like symptoms, others say fatigue and the list goes on. Have you had any tests done recently to check for active inflammation in your intestines (sorry I can't remember)?
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Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
01-14-2014, 06:01 PM   #62
valleysangel92
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I had some blood tests done and a stool sample... But this was after a course of pred. So results could of been affected... it was my GI that ordered these, but he didn't seem to remember that.. To be honest I've always had problems with my shoulders, from the age of at least 12 I've been going to the doctors about it.. But the whole body thing has been maybe the last 1-1 1/2 years.. so it coincides with when things got worse crohns wise.. It seems that my inflammation levels were okay , or at least not bad enough for him to mention (but then, I've had them not mention fluid around my lungs or cysts on my kidneys before, so who knows what that means) my vit. D was 'slightly' low though and so was my iron. I've never had low vit D before. And last time they found inflammation it was on the scans, it didn't seem to show on the bloods (or if it did they never told me) .
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coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

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Non CD meds - Gabapentin, paracetamol, ventolin
01-14-2014, 06:59 PM   #63
Jennifer
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Could you try to get copies of your test results? Some doctors can be forgetful or flaky even yet usually just have so many patients that it gets hard to keep track of things so they will deal with emergencies usually but if it's not an emergency then it might get brushed aside.
01-14-2014, 07:03 PM   #64
valleysangel92
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I think I can call and ask to be told them, if my GP has them, if not you have to pay to have them sent to you. I think he must of been dealing with some sort of emergency or something because he was an hour behind and he was quite out of character for him.. I will be needing to see my GP soon anyway since I need to see if I was given the correct vitamin D supplements ( the ones I was given have 500mg calcium in them and normally im told to stay well away from calcium supplements) . Thankyou for your input!
01-14-2014, 07:11 PM   #65
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Do you mind me asking what sort of testing your rheumy did?
01-14-2014, 07:29 PM   #66
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He did blood work testing for Rheumatoid factor (RF) and Anti-CCP. He also did the blood test HLA-B27 for ankylosing spondylitis along with general blood work that tests for inflammation like ESR and CRP. X-Rays and MRIs were also done on the areas that hurt the most (hips, lower, mid, upper spine and neck). Other than that he made me stand, sit and bend various joints certain ways, checked my flexibility and strength and had me walk for him as well.
01-15-2014, 05:16 PM   #67
valleysangel92
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Thankyou Jennifer .
01-15-2014, 09:46 PM   #68
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I would think that you would have an ANA blood test too, and muscle enzymes. When you were younger and had the joint pain, did they rule out Juvenile Arthritis? I wish they would get you into that rheumatologist!
01-16-2014, 05:11 AM   #69
valleysangel92
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Thankyou fozheart. I'm not sure that juvenile Arthritis was ever mentioned to me, so I dont think it even occurred to my doctor at the time to look for it. The GP practice I was under at the time was a bit hit and miss, it took 6 months of going back and fore to just get a shoulder xray, which came back with a 'minor abnormality'. The hospital had advised my GP that we should get my other shoulder xrayed and go from there, my GP refused it and said we would simply 'let nature take its course' . I eventually got in with a locum who ordered bloods including iron, and realised I had all the markers for coeliac so that became the main focus. I had physiotherapy on my shoulders 2 years after originally having problems, and they told me there had been substantial muscle wastage, and that it would probably never go back to how it was originally. I still to this day don't know what the abnormality was.
01-16-2014, 09:31 AM   #70
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Hopefully you will get some answers and treatment soon...
01-16-2014, 09:32 AM   #71
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Thankyou, sometimes I think i might go crazy if it wasnt for the support of my family and this place .
01-18-2014, 02:34 PM   #72
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I finally have an appointment with rheumatology . The 20 th of feb, which is still a fair wait considering I was referred early September, but at least I know when it will be now.
01-18-2014, 11:22 PM   #73
Jennifer
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That's awesome that you finally have an appointment! I hope it goes well.
02-22-2014, 01:39 PM   #74
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Hi!... looking at the date, and wondering if you finally saw the rheumatologist!?
02-22-2014, 01:53 PM   #75
valleysangel92
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Hey! Yes I have I started another thread and forgot to update this at the same time

I saw the rheumy on Thursday and he was one of the best doctors that I have ever met, he knew my history very well, he set my gastro straight too, saying he was wrong to tell me I didn't have crohns, I do and I shouldn't ever be told I don't, and he immediately changed my vit. D supplements from calichew (which have very large amounts of calcium and only 0.10 micrograms of vit D) to fultium with 0.20 micrograms which I take 4x daily. He was very unhappy that I'd been given calcium supplements and was glad I'd taken the decision not to use them.

I had some bloods drawn, and he wants me to have an isotope scan, which uses small amounts of radioactive material to detect inflammation in the body, it is highly sensitive and works even with tiny amounts of inflammation.

If nothing shows after the scan and I still have pain, they will diagnose me with chronic pain so that I can start having proper pain management.
02-22-2014, 02:23 PM   #76
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Hallelujah- finally you are getting the care you deserve, and hopefully some answers!
02-22-2014, 02:25 PM   #77
valleysangel92
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Thankyou for your support you guys have been awesome
02-22-2014, 03:13 PM   #78
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Hopefully the test will show what's wrong (would be awesome to know the cause of the pain so that can be properly treated rather than just helping the pain). Did they mention anymore testing in case the test shows nothing or will you just be sent over to pain management (I understand help with the pain for now but I'm hoping that you can be rid of it or at least lesson it some day)? When are you having the scan done?
02-22-2014, 03:22 PM   #79
valleysangel92
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Well they said the scan is very sensitive, so it should pick up everything, I've had xrays before that haven't been very useful, and they didn't think a CT scan would be either. I'm not sure about an MRI but we have very long waiting lists for those and they would need a full body one so I don't know how keen they would be to do that.
I don't have an appointment for the scan yet, waiting lists are different for each hospital and I could be sent to one out of 4 or 5 , so hopefully they'll be sending me to one with a shorter list (which should be common sense, but not around here) . I'm hoping I'll have the appointment through in the next week or so.
03-03-2014, 08:44 AM   #80
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Just to let you guys know, I found out today that my scan will be on the 4th of April
03-30-2014, 09:51 AM   #81
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I had this scan last year, a bone scintigraphy, and it revealed inflammation in my joints. All other tests including ultra-sound, MRI, x-ray and blood test came back negative, because my level of inflammation activity is low. The bone scintigraphy is the best test, as you mention, the most sensitive. I had a bad rheumy who kept telling me :'' you dont have inflammation, you dont have arthritis''. That same rhuemy sent me to a hand surgeon to get operated!!! Thank God, it is this surgeon with lots of experience who sent me for a bone scan scintigraphy because he suspected my problem was arthritis and not another condition requiring a surgery as proposed by the bad rheumy. The test came back positive. I have changed rheumy right after and now trying different treatments with a new rheumy. I say if you have swelling this means there is evidence of inflammation. Chronic pain syndrome or arthralgias do not have swelling, but the scan will give you the right answer.
Im glad you are finally in good hands.
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''UC-like Crohn's'' since 2001:
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minor hands/wrists chronic arthritis since 01/2013

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suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

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pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
03-31-2014, 02:22 PM   #82
valleysangel92
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I'm glad to hear the scan found the problem for you and that your surgeon didn't just rush in with an operation.

My scan is on Friday, so hopefully it won't be much longer before I know what's happening.
03-31-2014, 04:55 PM   #83
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yeah me too, I had met a first surgeon who was ready to operate me and rush just like the rheumy. Both of them had careless personality with fake smiles, you know, that kind of people... they didnt know much it appears and I know now not all doctors are good, its a chance I went for a second opinion. I got that from my mother when I was a child :''whenever a doctor propose an operation, always seek a second opinion''
let us know of your resuts.
are you doing a complete body scan?
03-31-2014, 05:10 PM   #84
valleysangel92
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Oh yeah I know exactly the type you are talking about.. doctors like that always make me think I should ask someone else.. There's just something about them...
I have 2 appointment slots for the same day, 15 mins apart, one is a dynamic bone scan, the other is a whole body bone scan, both have the same set up, you go and have the injection and then they do a quick scan and send you away to go back later (it says 3-4 hours later, I'm hoping it's 3 maximum, I'll have to wait in the city the whole time) but the whole body asks you to drink 2 pints of fluids inbetween (you don't have to hold it) .
03-31-2014, 05:30 PM   #85
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ok thats exclatly the same test I have done, but I got tested only for upper body since only my hands n wrists were problematic. Inflammation was also seen in elbows and in shoulders, but at a lesser degree. That was surprising because I have never felt any pain in both of these joints. this only proves how sensitive this scan is, its even more sensitive than us
04-02-2014, 07:17 PM   #86
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Hi Valleysangel,

Two more days for you...yay! You have waited FOREVER, especially for the rheumatologist. I am praying that these 2 scans can pinpoint the wicked pain that you have had for so long! I am wondering how your joints are feeling right now-, not that I want you to be hurting, but maybe that would make things show up better. I am also curious to know when your follow up with the the rheumatologist will be- don't know if you ever got the results from your blood tests.

Here is hoping to a brighter future for you!
04-03-2014, 02:45 AM   #87
valleysangel92
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Thankyou Fozheart

This appointment seems to have taken forever to come, I think its partly because I've known the date for about a month or so, which always makes it feel like its forever away but yes its finally here! I've actually had a badish week with my joints this week, on Sunday, my neck seized up, and then my shoulder threw a tantrum and then totally locked on Monday, I couldn't move it more than a centimetere without shooting pains into my back, its still achy and irritated today. I've also had a lot of random pains in my hands, hips, knees and ankles that come and go spontaneously and make the joint practically immobile for a time.. So here's hoping they'll give the radiographers a nice little show tomorrow!

I have no idea when my follow up will be, if i have one. I was told that if the scans and bloods don't show anything then they probably won't contact me since they don't think there'd be anything more they could do. Hopefully, if there is something (which I kind of hope there is, how strange to want a test to come back with something, what a weird world we're all in huh?) then they would contact me within 2-3 weeks, but I'm not holding my breath, it took them 2 months to contact me after my MRI. Unfortunately, the rheumatologist has bigger waiting lists than the gastro, so it could be a couple of months.

Thankyou for your continued support .
04-08-2014, 05:22 AM   #88
valleysangel92
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So, I had the scan Friday, and it seemed to go well.

At first, I was worried that they would refuse to scan me, since I couldn't tell them when my last period was (I take a mini pill and my periods are very erratic, I often don't get them for months at a time). I told them I'm not sexually active, but they still pressed me, and tried to get me to do a pregnancy test, which I couldn't do since I'd only just used the bathroom before I got there, so they made me sign a disclaimer that they wrote to say I wasn't pregnant or sexually active.

I only had to leave for 2 and a half hours, so it wasn't that bad a wait, and the people doing the scan were lovely. I had the skull to toe scan first, and then the close up of my feet and hands, while the close ups were taking place I was chatting away to the radiographers, and one of them started asking about my xray exposure, saying that next time I go to A+E I should try and persuade them to use ultrasound or MRI .

When they got to my hands, he let me see the pictures on the screen, the radiation showed up as lots of little red dots, in some places there was just one or two, and in others, like my wrists, there were big clusters which almost totally covered the bones. The radiographer did tell me that the pictures on the screen weren't the finished result yet as they have to take out all the background radiation and factor in the amount of bones that connect your wrists to your hands, but he did indicate that there seemed to be more activity in my wrists than what was normal.

The results take about a week to get back to the referring rheumatologist, so they've said to leave it for 3 weeks and if I haven't heard anything, to go to the GP and ask them to chase things up for me, since they will have more clout than me calling up myself.
04-08-2014, 10:55 AM   #89
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Its true that ultrasound or MRI could be done first, but these tests are not as sensitive as the bone scintigraphy. In my case they were done without results, everything came out normal. Do you have obvious swelling? If there was no obvious swelling at eye look or touch exam for the rheumy, then the bone scintigraphy was definately the test of choice to avoid a further waist of time doing other tests, I reassure with that! I wish I have had a proactive rheumy who sent me to bone scan right away after ultrasound instead of telling me I had no arthritis and worst sending me to surgery!!!

I find it quite surprising that a technician would comment on your results or choice of test... In Canada, they could never do that. lets see what the nuclear doctor (the doctor who analyses the bone scintigraphy) says and he or she will compare the captation with other joints in your body. You should be able to get your results in a week at the medical archive department of the hospital. It could allow you to be more ready before your rheumy appointement. (Thats what I did, any test including blood tests are accessible to patients whenever the results are in, well here in Canada.)
04-08-2014, 11:13 AM   #90
valleysangel92
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Sorry, maybe I wasn't clear enough? The radiographer was talking about if i landed in A+E, for example for the crohns, since they always jump to an xray, his concern was that if there is some form of arthritis, I could well need more of these tests in the future, and so it would be wise for other doctors to take into consideration the amount of xrays I'm getting, since I started having them at 12, and have them for multiple reasons. He wasn't questioning my judgement or my rheumatologist, just the A+Es quickness to go to xray and CT all the time for stomach issues in a young girl who might want kids etc. I did not feel he was questioning me and he said himself I'm under a very good rhuematology team. No disrespect was meant.

As for test results, he was simply explaining what the excess radiation could mean, not what they definitely mean. He was very clear that when they strip it back they may find that there actually isn't anything excessive, I have some medical training myself, and was curious about the images, that's all it was. I don't feel that he over stepped the mark, as he was very clear and did say more than once that this was not the finished result. Generally, radiographers are not allowed to give results, but if a patient asks a specific question, they are allowed to answer, provided they state that they are not a doctor and the results need analyzing.

At my hospital, they will not give the results of tests to patients over the phone unless the patient is speaking directly to the referring consultant. Phone numbers for things like the archive department are not freely available, and unfortunately, neither are consultants office numbers. So the quickest way to get test results is to go see your doctor. This is partly because of the number of people who seem to think that DR Google is better than their doctor, and go and Google their results, thus working themselves into a frenzy and then refusing to listen to said doctors diagnosis/treatment plan.

Edit - oh and yes i do have obvious swelling, well its obvious to me and my family at least.
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