Diagnosed with rheumatoid arthritis
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- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
Diagnosed with rheumatoid arthritis
Here I was, thinking I had my MC under control at long last and all would be well. My doctor told me today that I have RA, quite high RA factor of 86, and to make an appointment with a rheumatologist. Bummer. Another auto immune issue raises its ugly head.
I was told for years that I have osteo arthritis and just had my thumb joint repaired last year. I'm having arthroscopic surgery on my knee on Friday because of arthritis. Does any one else on the PP Board have RA? I would like to be aware of problem drugs for those of us with MC before I see the rheumatologist. I am on the arthritis diet now, can't take any anti-inflammatories and don't want to take any drug if I can help it. I'm wondering if Entocort was suppressing symptoms. I felt really well while I was taking Entocort. I think my MC is under control, Normans daily and few other gastric problems. Fatigue is a big issue these days and I'm now assuming that is caused by the RA.
Thanks.
Sheila W
I was told for years that I have osteo arthritis and just had my thumb joint repaired last year. I'm having arthroscopic surgery on my knee on Friday because of arthritis. Does any one else on the PP Board have RA? I would like to be aware of problem drugs for those of us with MC before I see the rheumatologist. I am on the arthritis diet now, can't take any anti-inflammatories and don't want to take any drug if I can help it. I'm wondering if Entocort was suppressing symptoms. I felt really well while I was taking Entocort. I think my MC is under control, Normans daily and few other gastric problems. Fatigue is a big issue these days and I'm now assuming that is caused by the RA.
Thanks.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
Sheila,
That's a heck of a note. I'm sorry to hear that just as you get one problem under control, another one shows up. There's a good chance that the Entocort might have helped to suppress some of the inflammation. And the new inflammation is surely the cause of the fatigue.
Regarding medications, I don't know how strong this correlation might be, but we have at least 2 or 3 members who were taking Remicade, or one of the other Anti-TNF medications (to treat psoriatic arthritis, as I recall), and despite strict diet restrictions, they were never able to achieve remission from their MC symptoms. I recall that whenever they had their monthly infusion (or whatever the treatment schedule might be) their MC symptoms were much worse for at least a few days or more afterward. Because of that, I'm pretty sure that the meds were the reason why they were never able to control their D. But of course I'm just speculating, since there's no research to back that up.
I hope that you can find a way to control it without a relapse of MC symptoms.
Tex
That's a heck of a note. I'm sorry to hear that just as you get one problem under control, another one shows up. There's a good chance that the Entocort might have helped to suppress some of the inflammation. And the new inflammation is surely the cause of the fatigue.
Regarding medications, I don't know how strong this correlation might be, but we have at least 2 or 3 members who were taking Remicade, or one of the other Anti-TNF medications (to treat psoriatic arthritis, as I recall), and despite strict diet restrictions, they were never able to achieve remission from their MC symptoms. I recall that whenever they had their monthly infusion (or whatever the treatment schedule might be) their MC symptoms were much worse for at least a few days or more afterward. Because of that, I'm pretty sure that the meds were the reason why they were never able to control their D. But of course I'm just speculating, since there's no research to back that up.
I hope that you can find a way to control it without a relapse of MC symptoms.
Tex
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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- Rockhopper Penguin
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Thanks, Tex. I've looked at a number of RA drugs and I don't want to take any of them. It seems that steroids are used in some cases and I'm wondering if Entocort, or a very low dose prednisone, might be just enough to reduce inflammation.
I have to see a rheumatologist, if his office ever calls me back. I realize I have to do something to reduce inflammation but will not take any drug that could cause a return of MC. It's very tempting to start taking 3 mg of Entocort a day and see if I feel better. I had very few side effects from Entocort and actually felt better than I do now.
It's always something.
Sheila W
I have to see a rheumatologist, if his office ever calls me back. I realize I have to do something to reduce inflammation but will not take any drug that could cause a return of MC. It's very tempting to start taking 3 mg of Entocort a day and see if I feel better. I had very few side effects from Entocort and actually felt better than I do now.
It's always something.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
Do you know your vitamin D level? I have no idea if you might have read the book on vitamin D, but here's a quote from pages 27–29, that you might find interesting.:
6. Walsh, N. (2013, February 4). Arthritis: Sun's rays may cut risk in women. [Web log message]. Retrieved from http://www.medpagetoday.com/Rheumatolog ... itis/37187
7. Cutolo, M., Otsa, K., Laas, K., Yprus, M., Lehtme, R., Secchi, M. E., . . . Seriolo, B. (2006). Circannual vitamin d serum levels and disease activity in rheumatoid arthritis: Northern versus Southern Europe. Clinical and Experimental Rheumatology, 24(6), 702–704. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/17207389
And you might be interested in this quote from pages 62–63:
23. Staff. (2014). Drugs that deplete: Vitamin D. University of Maryland Medical Center. [Web log message]. Retrieved from https://umm.edu/health/medical/altmed/s ... -vitamin-d
Of course a discussion of published research data precedes this second quote, and provides the evidence upon which my observation in that quote is based.
Tex
Here are the references cited in that quote:One of the oldest autoimmune diseases is rheumatoid arthritis.
The well-known Nurses Health Study, which began several decades ago, showed that women who lived in locations with higher ultraviolet B levels were significantly less likely to develop rheumatoid arthritis than women who lived in areas with lower average ultraviolet B levels. But a later study showed that after about the year 1980, that advantage no longer existed. Researchers concluded that the change was probably due to increasing use of sunscreen, resulting in less vitamin D being produced as a result of sun exposure.6 In addition to showing that less sun exposure resulted in a higher risk of developing rheumatoid arthritis, these studies also showed that with less sun exposure, the disease began to develop at a much younger age, on the average.
Another study compared serum vitamin D levels of fifty-four rheumatoid arthritis patients in southern Europe (Italy) and 64 rheumatoid arthritis patients in northern Europe (Estonia) with serum vitamin D levels of normal healthy controls in each respective country.7 The results showed that serum levels of vitamin D varied significantly with the seasons for all groups, but were consistently significantly higher in both winter and summer in Italian residents, compared with Estonian residents. Estonian patients had significantly lower average serum vitamin D levels, compared with Italian patients, and their vitamin D level varied with the seasons. Clinical symptoms for RA were more severe as vitamin D blood levels decreased, and this was true for patients in both northern and southern areas of Europe.
One of the more interesting findings of the study was that during the summer, increasing blood levels of vitamin D strongly correlated with decreasing disease activity levels of RA in Italian patients (but not in Estonian patients). And during the winter, decreasing blood levels of vitamin D strongly correlated with increasing disease activity levels of RA in Estonian patients (but not in Italian patients).
The authors of the study concluded that in general, blood levels of vitamin D were significantly lower in RA patients from North Europe when compared with RA patients from South Europe, and they varied with summer and winter, for both locations. But the most important finding for our purposes in this book, was that blood levels of vitamin D show a significant inverse correlation with RA disease activity levels in RA patients from both North and South Europe. Simply put, the higher the blood level of vitamin D, the lower the severity of RA symptoms. And conversely, the lower the blood level of vitamin D, the more severe the RA symptoms.
6. Walsh, N. (2013, February 4). Arthritis: Sun's rays may cut risk in women. [Web log message]. Retrieved from http://www.medpagetoday.com/Rheumatolog ... itis/37187
7. Cutolo, M., Otsa, K., Laas, K., Yprus, M., Lehtme, R., Secchi, M. E., . . . Seriolo, B. (2006). Circannual vitamin d serum levels and disease activity in rheumatoid arthritis: Northern versus Southern Europe. Clinical and Experimental Rheumatology, 24(6), 702–704. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/17207389
And you might be interested in this quote from pages 62–63:
And here is reference 23 from that quote:So I'll pose an academic question here, "Could this possibly be the primary mechanism by which corticosteroids work to suppress inflammation?"
Corticosteroids are widely prescribed to treat IBDs, rheumatoid arthritis, and other autoimmune diseases and inflammation-driven issues. It was previously thought that corticosteroids are effective for controlling inflammation because they suppress mast cell numbers and mast cell degranulation. But now we know that this is the domain of vitamin D and the vitamin D receptors.
Could it be that a synergistic effect with vitamin D might be the sole reason why corticosteroids are so effective at reducing inflammation? Hopefully, a research group somewhere in the world will be curious enough (and able to find the necessary funding) to explore this and either verify it or disprove it. But in the meantime, my gut feeling is that corticosteroids probably suppress inflammation by expressing VDRs, thus exploiting vitamin D to actually provide the mechanism by which the inflammation is suppressed.
My position is supported by the fact that it is well known that corticosteroids deplete supplies of vitamin D in the body.23 Obviously if corticosteroids promote the expression of VDRs, then this action would expedite increased utilization of available supples of vitamin D, resulting in depleted supples as the vitamin D is used to suppress the inflammation.
23. Staff. (2014). Drugs that deplete: Vitamin D. University of Maryland Medical Center. [Web log message]. Retrieved from https://umm.edu/health/medical/altmed/s ... -vitamin-d
Of course a discussion of published research data precedes this second quote, and provides the evidence upon which my observation in that quote is based.
Tex
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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- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
I've been taking Vit D3 and just upped the dose to 5500 IU. I live in the sunshine state and confess to not wearing sun screen unless I'm in the full sun for several hours. I'm outside a lot, walking the dog and in the garden. I don't know my Vit D levels.
The discussion here got me started on the large dose of D3. I read that women with RA can be deficient in selenium and take 55 mcg a day now in a multi vitamin. I know almost nothing about RA and am going to have to do some studying. It can attack some organs if the inflammation gets out of control so it must be taken seriously.
Thanks so much for the research, Tex. I'm trying not to get bummed out. I'll have plenty of time read while recovering from the arthroscopic knee surgery.
Sheila W
The discussion here got me started on the large dose of D3. I read that women with RA can be deficient in selenium and take 55 mcg a day now in a multi vitamin. I know almost nothing about RA and am going to have to do some studying. It can attack some organs if the inflammation gets out of control so it must be taken seriously.
Thanks so much for the research, Tex. I'm trying not to get bummed out. I'll have plenty of time read while recovering from the arthroscopic knee surgery.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
- UkuleleLady
- Gentoo Penguin
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- Location: Texas
Hi Sheila, so sorry to hear of your RA diagnosis.
There was an interesting article I came across on krill oil, and it's ability to lower CRP levels in RA/OA patients. I found it so compelling that I started talking krill along with fish oil a few months ago. (My CRP levels were elevated last year)
I originally read about it here:
http://www.proteinpower.com/drmike/infl ... lammation/
Link to the study abstract:
http://www.researchgate.net/publication ... c_symptoms
It could be the Astazanthin in the krill oil that makes it more effective than fish oil in lowering inflammation (at least in this study)
Best wishes,
Nancy
There was an interesting article I came across on krill oil, and it's ability to lower CRP levels in RA/OA patients. I found it so compelling that I started talking krill along with fish oil a few months ago. (My CRP levels were elevated last year)
I originally read about it here:
http://www.proteinpower.com/drmike/infl ... lammation/
Link to the study abstract:
http://www.researchgate.net/publication ... c_symptoms
It could be the Astazanthin in the krill oil that makes it more effective than fish oil in lowering inflammation (at least in this study)
Best wishes,
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
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- Rockhopper Penguin
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- Joined: Wed May 18, 2011 5:10 am
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Thanks so much, Nancy. That is a really interesting article and gives me some hope of lowering inflammation levels without taking potentially toxic drugs. I've been reading about drugs prescribed for RA and the list of side effects is horrifying.
Thanks again, Nancy, for taking the time to send me those links. I'm going to my health food store today to get the Neptune krill and curcumin.
Sheila W
Thanks again, Nancy, for taking the time to send me those links. I'm going to my health food store today to get the Neptune krill and curcumin.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
Thanks Nancy,
I've had some osteoarthritis issues in the past, and while it's not a major problem, I occasionally wake up with a few aches and pains, so I'm going to order some of that stuff too. I've considered it in the past, and just let it slide, but the conclusion stated in the abstract is a bit too compelling to ignore.
Tex
I've had some osteoarthritis issues in the past, and while it's not a major problem, I occasionally wake up with a few aches and pains, so I'm going to order some of that stuff too. I've considered it in the past, and just let it slide, but the conclusion stated in the abstract is a bit too compelling to ignore.
Evaluation of the effect of Neptune Krill Oil on chronic inflammation and arthritic symptoms.CONCLUSION: The results of the present study clearly indicate that NKO at a daily dose of 300 mg significantly inhibits inflammation and reduces arthritic symptoms within a short treatment period of 7 and 14 days.
Tex
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.
- UkuleleLady
- Gentoo Penguin
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- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
Hi Sheila and Tex, I'm glad you liked my post. I found the study interesting because it studied people not mice (!) and, that they interpreted qualitative data (pain scores). I think qualitative data is underutilized.
At the risk of sounding like a snake oil saleswoman, I believe it helps to alleviate some lingering MC pain that is the crux of my symptoms these days. Could be psychosomatic, but I like the conclusion of the study too, so I'm taking it. And I have my husband and dog on it too..
I do hope to have my CRP tested again soon to see if it's lowered, but of course that could also occur from having removed my most inflammatory foods.
Nancy
At the risk of sounding like a snake oil saleswoman, I believe it helps to alleviate some lingering MC pain that is the crux of my symptoms these days. Could be psychosomatic, but I like the conclusion of the study too, so I'm taking it. And I have my husband and dog on it too..
I do hope to have my CRP tested again soon to see if it's lowered, but of course that could also occur from having removed my most inflammatory foods.
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
I totally agree. Way too many research projects base results on such arbitrary markers as cholesterol level, enzyme level changes, etc. That's all BS and convoluted hype designed to "prove" efficacy where efficacy may not actually exist.Nancy wrote:I think qualitative data is underutilized.
In the real world, all that matters is the relief of clinical symptoms and longevity. Who cares if a product reduces some arbitrary chemical level. For all we know, it may increase the level of some toxic chemical in the process, so that the net result causes more harm than good.
My order is on it's way.
Tex
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.
It's funny this topic should come up now. I've been taking krill oil for several years. I recently ran out and because money is tight at the moment and I am trying to reign in expenses I decided to not reorder. That could be why my fingers seem a little stiffer than usual although I figured it was just the onset of cold weather. Now I'm thinking maybe I should start taking it again.
Jean
Jean
Sheila, I'm sorry for your diagnosis. The Entocort would prob have kept joints under control while on it.
Regarding Krill oil, I had bought Now brand Krill 1000. They are horse pills, and have a too sweet vanilla smell. Because of that, I only took them for a few days. Does anyone have a brand they like?
Regarding Krill oil, I had bought Now brand Krill 1000. They are horse pills, and have a too sweet vanilla smell. Because of that, I only took them for a few days. Does anyone have a brand they like?
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- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
Lisaw, the article that was posted by Nancy recommended Neptune brand Krill oil at a dosage of 1000 mg. This was taken in combination with Pro Omega and 900 mg of curcumin. I found the Neptune brand at my local health food store.
I haven't taken it yet because of my impending arthroscopic knee surgery on Friday a.m.
Sheila W
I haven't taken it yet because of my impending arthroscopic knee surgery on Friday a.m.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
That was a good article Dr. Eades wrote about krill oil. I began taking krill after reading that too a number of years ago.
Eating or drinking gelatin is another idea that might be of assistance with arthritis. I believe it helps with osteo in particular. A number of years ago I worked indirectly with the gelatin manufacturing firm that held a patent on gelatin helping with arthritis. The company was looking to take the product thought the FDA process so it could be sold as a drug. They ran into some issues I remember, and decided it wasn't worth the trouble. Instead they went the over the counter route. It seemed to be a good product. It sold well at least.
Another idea that could help is the practice of earthing. You wouldn't think it, but likely gelatin and earthing work at helping with arthritis in a similar manor. It's just testimonials, but remember in the earthing book write ups on it helping with RA and Osteo. Found these testimonials with a google search.
http://thenaturalmedicalhealthwell.com/ ... hritis-ra/
Eating or drinking gelatin is another idea that might be of assistance with arthritis. I believe it helps with osteo in particular. A number of years ago I worked indirectly with the gelatin manufacturing firm that held a patent on gelatin helping with arthritis. The company was looking to take the product thought the FDA process so it could be sold as a drug. They ran into some issues I remember, and decided it wasn't worth the trouble. Instead they went the over the counter route. It seemed to be a good product. It sold well at least.
Another idea that could help is the practice of earthing. You wouldn't think it, but likely gelatin and earthing work at helping with arthritis in a similar manor. It's just testimonials, but remember in the earthing book write ups on it helping with RA and Osteo. Found these testimonials with a google search.
http://thenaturalmedicalhealthwell.com/ ... hritis-ra/