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


 
04-08-2014, 08:02 PM   #91
Lady Organic
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Oh ok, I understand all your explanation, thank you for clarifying. I understand the concern about multiple exposures. I dont know where bone scintigraphy stands in terms of quantity of radiation, all I know is that CT scans are really the most ''radioactive''. Ive become pretty passionnate about health and nutrition and when I go into a situation that is going to produce lots of free radicals in my body, such a X-rays or whenever I 'll be able to make some sports, I make sure to eat a lot of food really high with antioxydants, such as Goji berries or watercress. Its been proven that these food eaten prior to doing a physical activity will greatly limit the free radical formation in our body (As seen in the Food Hospital tv show from the UK). I'm extrapolating this idea to X-ray exposure and propose to eat antioxydant rich food prior to such radiology exam to limit the amount of damage caused by free radicals.... something to think about for future exam if there are...

tests results are not available over the phone for us either. We must go in person or write a letter to the archive department and sign papers to have access to the results. Very few people are aware of this possibility.With a few bad experiences, I prefer to take some extra steps now and be more prepared in order to discuss my case and treatment options, but thats very personal.
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
04-09-2014, 11:31 AM   #92
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My goodness, ValleysAngel92, it sounds like you have gotten quite a run-around. I hope you get a diagnosis and relief soon.

I clicked your message link because I have had Crohn's-related R.A. for years, and have only recently been diagnosed with osteoarthritis in my knee. The latter seems to be pretty much unrelated to Crohns. The rheumatologist described it to me as a "wear-and-tear" issue, and one that is especially common with aging. It absolutely showed up in a simple X-ray, because my knee joints are bone-on-bone (little to no cartilage left in my knee joint). Even I could see it. Ouch!

Since I have both forms of arthritis, I can feel the difference, although both cause pain.

R.A. comes and goes in most all my joints. It flares with my Crohns, but also seems to have no trouble flaring up on its own. It is really sensitive to weather, especially when the barometric pressure changes and/or the temperature fluctuates a lot within a 24-hour period. That means spring and fall are bad times of year for me. There are good days and bad days. Or in some cases, bad days and worse days.

Osteoarthritis, for me at least, is more of a constant pain. It doesn't seem to be dependent on my Crohns or on the weather. They are all bad days. My knee is always swollen and stiff, and it's hard to walk. I recently had the fluid drained from my knee, and got a steroid shot. Four days later, it felt better than it had felt in years. I can walk again without limping or dragging my leg like Quasimodo.

I have a relatively new (and wonderful) young gastroenterologist who was the first doctor I've had who really took my joint pain seriously. Before that the doctors I had would say, "Well, if we get your Crohns under control that should help with the joint pain." My new doctor sent me to a rheumatologist who has made a world of difference to me. And guess what? My gastroenterologist and rheumatologist actually talk to each other to decide the best course of treatment.

Right now I'm on Remicade which helps with the joint pain, and I also take two oral pain killers as needed (Tramadol and Celebrex). And I can't tell you how much difference the steroid shot to the knee has made. I know it's only a temporary fix, but at this point having even a few pain-free months is a gift.

I hope you get that kind of relief, too, soon ValleysAngel92.
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Diagnosed with Crohn's Disease Oct 1982; Rheumatoid Arthritis Nov 1985; Ankylosing Spondylitis June 2015
Taking 150mg Azathioprine; Remicade, Tramadol, Celebrex
Been there, done that: Sulfasalzine, Pentasa, Asacol, Prednisone, Budesonide, Cimzia, and more colonoscopies than I can count
04-09-2014, 10:11 PM   #93
fozheart
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Hi Nicole! I am glad the test is over-hoping you get a call soon!

Kiltubrid, I am glad that you have two good doctors that communicate with each other! I am curious though, regarding your celebrex. You take that as needed? I thought that it was something that is supposed to be taken on a regular basis.? Regardless, that is wonderful that you have a break from the pain!
04-11-2014, 05:50 PM   #94
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I took Celebrex as needed a few years ago. Right now I take two a day, 12 hours apart. The Tramadol I take as needed, up to 3 a day. I usually take at least 2.
05-07-2014, 06:22 AM   #95
valleysangel92
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Hey all.. just a bit of an update

I'm still getting a fair amount of joint pain, my hands are especially bad lately, so I've not been as active here as I would like sometimes. My feet look like I've pumped them up with a football pump, and my back and hips seem to have developed a split personality, they can go from no pain at all to 7/8 out of 10 in no time at all.

So far, I've not heard anything about the scan, and it has been just over a month now. I called my GP practice today, and they have said they don't have anything through from them yet, they only have the results of some bloods I had the other week (which were messed up and I've got to have again). So at the moment, I am in limbo, I don't have a way to contact the rheumy at the hospital, since the switchboard wont put you through to a specific consultants office, just to the general department, and that never really helps. My GIs always have to give me their direct extension themselves, or I call the IBD nurse.

I was starting to think that maybe the scan didn't show anything, so that's why I'd not heard and it was time to call the GP, but since they haven't either, I'm going to assume that the hospital is just taking its merry time and there still might be something on the scan. After all, I assumed my MRI was clear, then 2 months later I got told they suspected crohns.. so who knows. To be fair, this isn't always the consultants fault, I've had letters before with the date it was written being a full 2 weeks before the postal mark date. I even had some colonoscopy prep go missing and not turn up when I was being diagnosed, and cancellation letters appear without an original appointment letter.

I'm really hoping this gets sorted out soon, I really need to be on a stable treatment plan before I start university if its at all possible, I love the NHS, but sometimes I wish it wasn't quite so slow.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
05-07-2014, 08:19 AM   #96
fozheart
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I would not have the patience that you have! Could you possibly persuade your GP to call the rheumatologist or even pop a letter in the mail? It seems like the norm for you to fall through the cracks, but I realize that they are busy doctors. This is different though, if you have the chance to start university! Maybe if they knew that, they would speed things along? Whether or not the scan shows anything, it is still the rheumatologist's responsibility to keep looking. There are so many different conditions, and it may take some time to get a correct diagnosis. Maybe they will pinpoint yours, but it could also be an undifferentiated connective tissue disease, or mixed. There is no need for you to be in pain for so long-you have a right to be out of your misery! (sorry..just my opinion....)
05-07-2014, 09:42 AM   #97
valleysangel92
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I guess we just get used to this here, to be honest, in general terms a month isn't that much here, its just that I was told 2-3 weeks. I guess my main concern at the moment is that I'll be starting university just before the weather turns colder, and last autumn/winter I ended up hobbling round on crutches, which is manageable in lectures, but I'll have clinical skills days all through my first term, and my second term I'll be out on placement in hospital.

My doctors are aware that I want to go back to university.. in fact, my surgery was rushed through last year because I was supposed to go back last september, but hadn't recovered enough from surgery when I went to the health assessment , and subsequently failed it. Last year I'd had a place held for me because I'd had to drop out the year before, when I found out I couldn't go back, my lecturer and I agreed that it would be best for me to reapply when I felt ready.

I didn't bother reapplying for this year, because when the applications came out I was struggling to walk and on the brink of a flare. However, a couple of months ago I got an unexpected phone call, asking me to confirm my place, I checked it out, and low and behold, I'd been given another place, no application needed. At the time, it looked positive that I'd be on the road to a treatment plan, and accepted, and now I'm determined that I'll be as well as I can be.

The last time I told one of my GPs that I want to go back to work (to save for uni, this was 2 months ago) 'relax, take it easy, you have the rest of your life to work ' and promptly signed me off as unfit. They seem to want to wait for rheumatology to make their minds up before they let me look for a job, which is fine and all, but I don't have all year..

Anyway.. I'm rambling now.. The only way I'll be able to get my GP to see them is to go and see my GP, which I'll maybe be able to do next week, I've currently got other hospital appointments and blood tests etc coming out of my ears. At the moment though, I'm loosing faith in most of the doctors at my GP practice, out of 11 doctors, there are only 4 I'm comfortable with any more. The rest either try and prescribe stuff thats dangerous for crohns, don't listen to a word I say, tell me to wait for the hospital or tell me I'm a headcase/just after more meds (my script is already 2 pages, how much more can anyone want?). So my being 'fussy' over which doctor I'll see will make it a little longer than normal, but I'd rather wait and have good care . When I can get in with someone I'll let you know what happens. I think a phone call would be the best thing, letters seem to just be put in the file and only read during appointments...

I have never been 'typical' for anything, even my orthodontist wants to use me as a case study because he thinks I'm an 'interesting' case. So it wouldn't suprise me if they can't pin point exactly whats going on, but it would be nice if they could at least say 'yes, theres definitly inflammation' or 'its not x y or z but it could be a mix of v and t .

The only other thing I can think to do is try and see if I can get the rheumy number from my uncle to at least ask them if they plan on seeing me again. If they say they don't, I'll know they think its fibromyalgia (sp?).
05-07-2014, 09:42 AM   #98
valleysangel92
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Okay.. that turned into a bit of an essay... oops
05-13-2014, 06:50 AM   #99
valleysangel92
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So I went and saw a GP today, I got fed up of waiting so I took pot luck and actually ended up with a very sympathetic doctor who really understood where I was coming from.

Although there was no letter from my rheumy about my results, there was a report on the hospital system about my scans, which were normal.

I've now been diagnosed with fibromyalgia and was given some information to read and some amitriptyline to try if I want to. If not I can try non-medicine treatments, she was happy that I understood the condition and my body well enough to work out what I think is going to work for me and what I feel comfortable with.

She is happy for me to go back to work/university if I feel I'm well enough, which means I can come off sick pay and go and look for a temporary job . She says she think's i'll be a very good nurse. She was a little exasperated that the rheumy hadn't written to say that there was nothing on the scans, but said that in his origional letter to them he'd said he thought fibro was more likely anyway as I'd been tender in 14 out of 18 of the trigger spots.

Although it's still a chronic condition and can be debilitating at times, it is at least something that has a few varied treatment options, and something that wont do permanent damage to my joints or my bones and hopefully won't disrupt my future too much.

Thankyou so much to all of you for all of your help and support through all this, you've all been amazing .
05-30-2014, 08:57 AM   #100
Lady Organic
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Hi ValleyAngel,

take a look at this recent April 2014 research article published in a rheumatology journal :

''Fibromyalgia and non-celiac gluten sensitivity: a description with remission of fibromyalgia.''

http://www.ncbi.nlm.nih.gov/pubmed/24728027

In the full version of the article, it is mentionned that 8 of 20 patient also stopped milk products along with gluten. remission was acheived in between 5 and 31 months.

All the best to you.
05-30-2014, 09:16 AM   #101
valleysangel92
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Hi, thankyou for sharing

Unfortunately in my case gluten is not the culprit. I have coeliac disease and I havent touched gluten since I was diagnosed at the age of 14. My joint pain started at the age of 12 but got significantly worse at about the age of 18, a while after gluten was cut out. I'm super careful with my diet, even the smallest amount of gluten makes me resemble a puffer fish.

As for cutting out milk, I suppose if I can't get things under decent control another way it might be an option, but if only 8 of them did that then it doesn't seem like thats what put them into remission. I struggle to keep my diet varied as it is, I cant eat any gluten, I cant eat fruit and veg even if it is cooked well, and I've just started brace treatment so hard food is out too.. I'll be a student from september on an extremely tight budget, so at the moment I cant really afford to be cutting more out unless I really need to.

I will make sure I keep it in mind for the future though, since if things get out of control then anything is worth a shot (well, anything safe).

Thankyou for sharing this with me.
05-30-2014, 10:39 PM   #102
my little penguin
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Will your docs prescribe resting hand splints??
DS had joints issues still to be determine by Rheumo but
The doc did prescribing resting hand splints worn at night which help with the stiffness.
DS aslo uses parafin wax baths to dip his hands in.
Also swimming reduces muscle pain too.
All of these things help and are med free.


Good luck
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05-31-2014, 12:36 PM   #103
valleysangel92
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Hmm that's a good thought... I think they might do, I know they will give me knee supports if I need them so I don't see why a resting hand splint wouldn't be available. You can get some over the counter here as well, but they probably aren't that good (usually very flimsy and break/tear easily) .

I've never heard of doing wax baths, would you get the wax from a pharmacy?

I've heard a lot about swimming and hydrotherapy. I can't actually swim but I've been told that just kicking around in the water can be helpful so I'll definitely keep it in mind.

Thankyou
06-07-2014, 10:47 PM   #104
my little penguin
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DS's hand splints are much better than the OTC ones.
For his your need a doctors prescription.
Parafin wax bath is sold at most drug/retail stores - women use it for beauty treatments .
Most come with the wax .
We got his at a home store that sells towels etc...
But they can be ordered on amazon as well.

Good luck
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