arthritis or osteoarthritis?

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sonja
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arthritis or osteoarthritis?

Post by sonja »

Dear MC colleagues,

I didn't post for a while, but I read the messages very often. I feel very supported by you.
The good news is that I'm off entocort since december 2014!
I did the elimination diet in march and follow a glutenfree, dairyfree and soyafree diet.
That is good for my intestines, but I'm having joint pain in fingers, toes (changing, stabbing).
The doctor concluded osteoarthritis in my left pink. I posted earlier about this and at that moment it was not clear what it was, because I also have Dupuytren. My hand (pink) was operated in march and after that it was clear that I had both: dupuytren and osteoarthritis (shown at a rontgenphoto). Tex, you gave me good info at that time. Thank you. I have also noticed that after eating diary I get more joint pains (and feeling flulike for some hours) and also pain between my shoulders (on the left side). I think this is so strange, but know Tex mentioned also this pain; I wonder what this can be. Does anyone know???
Somethimes I eat goat cheese without the problems cowmilk gives me, but I have the feeling that goat cheese and yoghurt leads also to joint pains, but in a light way. I'm not sure yet.
I also have stiff hands and feet, especially in the morning and some other complaints. The doctor concluded that all my problems are osteoarthritis. I know that many of us have RA and I wonder what is the difference? It's not clear to me. I think about taking entocort once in 5 days, as some of you do, but will that help me? A complication is that I had a borrelia-infection in june and had to take antibiotics for 2 weeks in august. Finished a week ago.
I have an appointment with a reuma-nurse on thuesday for advice, but I think (reading on the internet) that this will not bring me further what concerns the diet.
My questions are:
is it possible that my problems are related to RA or is osteoarthritis really something different?
Is it a good plan to try the light entocort dosis? Can I start with 1 in 5 days of do I need more in the beginning?
What is the rol of the goat cheese? Brandy, maybe you know: you told me months ago to skip the diary and you were right! Thank you for that.

I hope you all are well. Tex, I read you had a difficult time some months ago; hope you are better now!

Best wishes for everyone,
Sonja
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Post by tex »

Hi Sonja,

I'm sorry to see that you are having those problems. Compared with RA, osteoarthritis is very slow to develop, and I found that it took a long time for the symptoms to fade away, after I changed my diet. For me, both gluten and dairy cause osteoarthritis.

The main differences between RA and osteoarthritis are:

1. RA tends to develop relatively rapidly, over weeks to months. Osteoarthritis develops much more slowly, and it typically takes years to become a serious problem.

2. With RA, joints are painful, red, swollen, and stiff. With osteoarthritis, joints ache and they may be tender and stiff, but they usually have very little swelling, if any.

3. RA affects the joints on both sides of the body symmetrically. IOW it will affect both hands, or both wrists or elbows, or both knees. By contrast, osteoporosis seems to affect joints randomly, beginning on one side of the body, but it can spread to the other side of the body also. Usually osteoarthritis is limited to one set of joints, most commonly the finger joints closest to the fingernails, or the thumbs, hips, knees, or the spine.

4. RA symptoms are more persistent. With osteoarthritis, we are stiff when we wake up in the morning, but after we get up and move around, the stiffness usually fades away in less than an hour. If we sit still for a long time, it may return, but moving around will help to relive it. With RA, the symptoms last much longer, and in many cases are always present.

5. RA is more likely to cause a feeling of fatigue and general unwellness, because the entire body is inflamed. With osteoarthritis, systemic (whole-body) symptoms are not present.

OK, what I wrote above is how the medical community describes the differences between the 2 forms of arthritis. But I disagree. IMO there is a third type of arthritis (and this has been described before in the literature). There is a form of arthritis that occurs with IBDs, and it can have the characteristics of both of the types described by the medical community. As far as I can tell (from my own experience with it), it has most of the characteristics of osteoarthritis.

1. It seems to affect joints at random locations in the body, but rarely symmetrically. In my case, it shows up in 1 or more joints on several fingers of 1 hand (but not the other). Back before I changed my diet, when I was still reacting from MC, it affected both knees (my right knee was much worse than the left, though), my lower spine, and especially my neck, my left elbow, and 2 of the fingers of my right hand (the second and fourth fingers). It affected the middle joint on both, and the distal joint on my second finger.

A few years ago, when my diet became cross-contaminated with gluten, and I was still eating casein, it affected the first 2 fingers of my right hand and my lower spine (and neck).

2. Joints can be swollen, red, and obviously inflamed, or just stiff and sore, with or without swelling. Early on, when I was still eating gluten, my affected joints were red, swollen, extremely painful, and obviously inflamed. IOW, the symptoms resembled RA, but my rheumatoid factor was negative. The second time around, several years ago, there was stiffness, minor pain, and significant swelling, but no redness or obvious signs of inflammation. My impression is that gluten is more likely to cause RA type symptoms, and casein tends to cause osteoarthritis type symptoms, but that's just a guess, of course.

If you are eating goat cheese and yogurt, in my opinion that is almost surely the cause of your symptoms. Goat or sheep milk is no safer than cow's milk. True, it has less of the protein that causes us to react, but that is irrelevant because it only takes tiny trace amounts of that protein to cause us to react.

Thank you for the good wishes. Regarding the problem that I was having, It appears that my main problem was a severe magnesium deficiency, made worse by the antibiotic reaction. Now that I'm taking more magnesium, I am fine. A breathing problem that I've had for years (not being able to take a deep breath sometimes) is now gone.

I hope that some of this is helpful.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Rosie »

Sonja, I also wanted to mention something that worked really well with my joint stiffness and inflammation in my hands: supplementing with the biologically active forms of B12, folate, and pyridoxal-5-phosphate, which work together. There have been a any number of discussions on this forum about how many of us are deficient in these vitamins, because of poor absorption due to colitis and/or because we might have a relatively common genetic variant that causes enzymes to be less able to convert the inactive forms of the vitamins, commonly found in vitamin pills, to the active forms. Much of the attention has focused on the B vitamins and nerve issues, but I have found it very helpful for joint problems as well.

I suffered for a number of years from lots of inflammation in my hands and finger joints, even after going gluten, dairy and soy free about 6 years ago. I have even had two hand surgeries, one for carpal tunnel and another for trigger finger, both in the same general category of inflammation of connective tissue as Dupuytren's. I started taking the active forms of the B vitamins about 8 months ago just because there was so much talk about it, and I figured that I might be deficient. By only a week after starting, I noticed that my hands felt much, much better. Another finger had been developing trigger finger, and I could only bend it half way, and thought that I was headed for another surgery. It has pretty much cleared up, and now I can bend it all the way. I still have some residual morning stiffness, but am much improved. Of course we are all different, but supplementing with those active B vitamins can't hurt and might help.

Rosie
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Post by Sheila »

Hi Sonja
To be sure you have osteo-arthritis, ask your doctor to do a test for Rheumatoid factor. I have Osteo-arthritis as well as a rheumatoid disorder, not RA, that also includes joint pain among the symptoms. I've found that those of us with one auto-immune disease frequently have other AI issues.

Sheila W
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Post by sonja »

Hi Tex, Rosie and Sheila,

Thank you very much for your answers. They are so very helpful. I feel very much supported by this forum.
From today I'll skip the goat and cheesedairyproducts. It's very difficult, but I know I have to do it. And I will start with B12.
I had a test for Rheumatoid factor and it was negative.
Today I had a consult with a 'reumanurse' for advice. I expected to hear the normal things, like you read on the internet, but that was definitely not the case.
She gave me information about osteoarthritis, because that was the diagnoses of the doctor.
But, when she heard (and read) about my problems, she told me that a lot of them ressembled more RA-complaints than osteoarthritis. When I asked about a kind of 'third form' like Tex mentioned, she agreed. She told me that this is often seen by persons with auto-imuum problems. She told me that its not known why and how RA and osteoarthritis and things like that develop. She told me that doctors don't want to admit that they don't know and that is why my doctor told me: "it's all osteoarthritis".
I told het about my diet and plan to skip the cheese and goat and she agreed that this was a good plan.
I asked about medications. She told me that there is no medication for osteoarthritis (only food supplements: glucosamine and omega 3 fishoil might help).
Glucosamine is proven: she advised me to take it 3 months as a try: if I don't mention a positive change, I can stop with it.
they give people with RA medication, corticosteroids which resembles entocort. When i told her of the low dosis some members of the forum take with good results and asked if this could be something for me, her answer was: It's really worth trying this! She thinks it can help me.

She told me that I have to bring more rest (not the good word I think) in my daily life and find a balance between being active and take some rest. And that I had to listen carefully to my body and adjust to that.

Tex, very pleasant that your breath problem is solved!

I start with now without all kinds of diary. Tex, you wrote that it can take al long time until I get result. Do you have any idea how long? (I'm a bit spoiled, because i reacted so quickly when starting gluten free and had such a fast and severe reaction on dairy and soja during the elimination diet).
Sorry for my english; hope you understand what I mean.
Again, thank you very much. It helps a lot to share this difficulties with all of you and I take your advice very seriously.

I'll keep you informed!
sonja
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Post by tex »

Sonja,

The nurse you consulted with obviously knows a great deal about autoimmune diseases, and she seems to be an excellent source of information.

I have taken glucosamine for about 15 years now, and it definitely helps. It helped my arthritis symptoms even before I made any diet changes to avoid gluten and casein. For about 10 to 12 years I took 1,500 mg per day. These days I take half that amount. Another supplement that is often helpful for arthritis is flax seed oil. I have also taken flax seed oil for about 15 years now, at 1,000 to 1,200 mg per day. I have taken fish oil for maybe 5 or 6 years, and it is probably helpful, but don't take too much of it or it can cause D. I take 1,200 mg per day, but 2 or 3 times that amount can cause D.

By "a long time", I meant approximately 6 to 8 weeks, but you might notice some improvement much sooner. We are all different in how we respond to diet changes and medications.

Your English is fine, and we can easily understand what you mean. Your English is at least 1,000,000 times better than my Dutch. :lol:

Thank you for the update.

Tex
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Post by Gabes-Apg »

Sonja
Wow! you were blessed with a great supportive nurse
She told me that I have to bring more rest (not the good word I think) in my daily life and find a balance between being active and take some rest. And that I had to listen carefully to my body and adjust to that.
fantastic advice.... with these types of issues active in our bodies we have a limited bank of physical energy, mental energy, emotional energy.
Just like we have to stick to the strict diet, check everything for gluten, etc, we also have to manage these energy banks and not let ourselves deplete the bank...

we dont always get to control or plan when we will have good days or not so good days... listening to your body is the best thing you can do!

One of my learnings in MC world, was accepting that my body could not do all the things that my mind wanted to do!
I had to modify the expectations of myself, learn safe limits, and budget my physical energy, mental energy, and emotional energy to this budget.
Put my needs first, guilt free!!

It generally takes about 8 weeks of full dose supplementation to correct a mild deficiency, for some nutrients (and for those with IBD's) it could take a bit longer like 12 weeks to see improvement from starting a new supplement. when starting a new supplement I suggest to people to start on a 1/6th or 1/4 dose, and gradually increase it. have small dose for 4 days, if no symptoms, then do another gradual increase, wait 4 days or so, if no symptoms, increase it again. let your gut adjust to the new ingredient. this minimises the gut reacting and causing D.
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Post by Jonas »

Tex, that is interesting information.
I got me wondering since I got the diagnosis psoriasis arthritis by a doctor i rheumatology.
But they have not found anything indicating that in any blood tests, in any the 3 MRI scans or other X-ray scans and I have no swollen joints.
I got that diagnosis solely based on the symptom (and that I have had psoriasis before).
Symptoms that I never had before and that slowly started to develop 3 -6 months after my MC diagnosis. Problem like pain and stiffness in the hip, shoulder and lower back. Mostly on the right side of my body, never on both sides at the same time.
Is psoriasis arthritis a correct diagnosis? From my understanding this might as well be arthritis caused by IBD or osteoarthritis. Would you agree?
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Post by tex »

Jonas,

It's difficult to guess whether that diagnosis is correct. Approximately 30 % of psoriasis patients develop psoriatic arthritis. So your rheumatologist may have just assumed that since you have a psoriasis diagnosis, any arthritis symptoms would probably be associated with psoriatic arthritis.

My arthritis symptoms were also mostly on my right side. My right knee, my lower back, and several fingers of my right hand were affected. The only joint on my left side that was affected was my left elbow.

I'm not sure how many MC patients have MC-associated arthritis (because I have no way of knowing what percentage of cases are actually RA or osteoarthritis, and what percentage are MC-related), but there is no doubt that mine was MC-related, and apparently many other members here have the same problem.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Jonas »

My point is, if there is no test to tell you that you have it or not, how would you really know? It all based on guessing and what it probably could be.

I find it strange that get psoriasis arthritis 3 months after MC diagnosis, since it was 25 years ago I got psoriasis for the first time.

Then again it thus not matter what you call it, since I know I have athritis and it's probably due to my gut problems.

"All disease begins in the gut". Hippocrates. And many believe that is still true.
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Post by sonja »

Your English is fine, and we can easily understand what you mean. Your English is at least 1,000,000 times better than my Dutch. :lol:

Thank you for the update.

Tex
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Dank je, Tex
Misschien kan je Nederlands lezen!

Hartelijke groeten, Sonja :grin:
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Post by sonja »

Babes, thanks for your answer.

You wrote" when starting a new supplement I suggest to people to start on a 1/6th or 1/4 dose, and gradually increase it. have small dose for 4 days, if no symptoms, then do another gradual increase, wait 4 days or so, if no symptoms, increase it again. let your gut adjust to the new ingredient. this minimises the gut reacting and causing D.[/quote]"

That is a good idea. At this moment, now I'm changing my diet by avoiding cheese and goat products, its difficult to distinguish what causes what. Some things cause d, some things cause cramps and some things cause joint pains, reumatic symptoms or a combination.
After I visited the nurse, I was in the pharmacy and saw there omega 3 capsules. I bought them in a impuls and forgot to read the ingredients!!! Soy is in it, so I have to search another one.
I live in the center of Amsterdam and have a lot of possibilities to find what I need, but that makes it not so easy. Many supplements here have soy.
I also want to take te B12, like Rosie advised. I have to look for a good one too.

I wonder what everybody (with mc) takes for supplements! Something for a poll?

Sonja
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Post by tex »

Sonja wrote:Misschien kan je Nederlands lezen!
I wish I could, but unfortunately, no. I can read a little German (my paternal grandfather was from Germany), and when I was a kid, when the family would get together they would speak German. But you know how kids are — they don't pay enough attention to things like that, so I didn't bother to learn German when I had the opportunity. I just assumed that the opportunity would always exist. But alas, as the older generation passed on, that opportunity to learn the language, passed with them. And I can recall a few neighbors conversing in Dutch when I was a kid, but I never learned much about that language either, unfortunately. I was a stupid kid, wasn't I. :lol:

Tex
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Post by tex »

Jonas wrote:My point is, if there is no test to tell you that you have it or not, how would you really know? It all based on guessing and what it probably could be.
Remember that there is no test for IBS either, but doctors "diagnose" many, many cases every day. :roll:

Tex
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Post by sonja »

Hi Tex,

Considering the way you are now, I'm sure you certainly was not a stupid kid, but a very smart and sensitive kid. I know because I'm a childpsychologist. :smile:

Sonja

PS And indeed, you can read Dutch!
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