16 replies to this topic

[gomesbs]

Hi,

I discovered this site about a year ago and since then I consult it almost daily. I work in finance so I do not understand completely some of the terms.

Anyway, almost 3 years ago I had an anterior uveitis in my left eye, since I'm male, early 30s my doctor said I should check for anquilosant spondylitis or other autoimmune disease. But when I got better from my eye, and since I had no major symptoms (only back discomfort when waking up) I disregarded the doctor's recommendation.

Until last week when what started as I thought was a cold, with low fever and throat pain, turned (2/3 days after) into another uveitis and strong joint/muscular since my neck until my foot, I almost couldn't move. Now I've been taking an ant inflammatory and treating my uveitis and I'm getting better, though I don't understand why I continue with the cold symptoms.

Until last week I was taking only a 50% extract resveratrol (250 mg trans), which I stopped when this happened, and been thinking of switching to a 100%, but as I live in Europe is harder to find a reasonable priced one (plus taxes). I've order some Vitamin D3 too.

Since I probably suffer from a spondyloarthropathy (probably anquilosant spondylithis) is resveratrol recommended? (I've seen the joint pain and resveratrol thread and could not conclude). What about D3 dosage? Should I do the 25-hidroxy test first? What other supplements do you recommend?

Thanks in advance and congratulations for this great site!

[youandme]

Hi gomesbs

Resveratrol has a lot of research effort ..and some reports suggest it could be useful for some Autoimmune Diseases.
However at least one person previously said his RA got worse.
So caution is a word Id use supping with Resveratrol at the moment..the truth no one really knows for sure.

You have had a flare so ..stopping rather than increasing Resveratrol might be the best option.

Are you HLA-B27 + ?
I am I have AS...RA and a whole bag of Autoimmune Diseases to boot...the HLA-B27+ is associated strongly with AS RA etc.
Your lower back pain is a sign of AS...as you have already figured.

Ive got to say after much research I am yet to find a really good supplement that seems to stop progression of Autoimmune Disease.

D3..Get youe D3 checked before you do take D3 supp...my levels are naturally high..which means supping probably wont do much for me...but if yours is low then it might be useful.

I get colds and flu a lot..and I wonder if its because the body is fighting so hard..against itself that it only has so much more to give against invaders.

Have you had any IBS/IBD in the past ? anyone else with an Autoimmune Disease in your family ?
Have you suffered from a Virus or Food Posioning in the last few years ?
M/F ?

One thing Ive found that helps the back a little is a good bed..it takes some searching to find the best for back pain..and you might need to try out several before you find one that suits..I also make use of pillows for support..I can get in to a position where the pillow is under my lower back and it relieves the worst.

Cheers

Hi,

I discovered this site about a year ago and since then I consult it almost daily. I work in finance so I do not understand completely some of the terms.

Anyway, almost 3 years ago I had an anterior uveitis in my left eye, since I'm male, early 30s my doctor said I should check for anquilosant spondylitis or other autoimmune disease. But when I got better from my eye, and since I had no major symptoms (only back discomfort when waking up) I disregarded the doctor's recommendation.

Until last week when what started as I thought was a cold, with low fever and throat pain, turned (2/3 days after) into another uveitis and strong joint/muscular since my neck until my foot, I almost couldn't move. Now I've been taking an ant inflammatory and treating my uveitis and I'm getting better, though I don't understand why I continue with the cold symptoms.

Until last week I was taking only a 50% extract resveratrol (250 mg trans), which I stopped when this happened, and been thinking of switching to a 100%, but as I live in Europe is harder to find a reasonable priced one (plus taxes). I've order some Vitamin D3 too.

Since I probably suffer from a spondyloarthropathy (probably anquilosant spondylithis) is resveratrol recommended? (I've seen the joint pain and resveratrol thread and could not conclude). What about D3 dosage? Should I do the 25-hidroxy test first? What other supplements do you recommend?

Thanks in advance and congratulations for this great site!

[ajnast4r]

\ since I had no major symptoms (only back discomfort when waking up) I disregarded the doctor's recommendation.

this was your first mistake... maybe theres a reason you dont know about that he sent you for the tests? theres absolutely no reason you shouldnt get those tests... i suggest you go back to the doctor asap

if a doctor wants to run tests, what the worst that could happen?

[niner]

Hi,

I discovered this site about a year ago and since then I consult it almost daily. I work in finance so I do not understand completely some of the terms.

Anyway, almost 3 years ago I had an anterior uveitis in my left eye, since I'm male, early 30s my doctor said I should check for anquilosant spondylitis or other autoimmune disease. But when I got better from my eye, and since I had no major symptoms (only back discomfort when waking up) I disregarded the doctor's recommendation.

Until last week when what started as I thought was a cold, with low fever and throat pain, turned (2/3 days after) into another uveitis and strong joint/muscular since my neck until my foot, I almost couldn't move. Now I've been taking an ant inflammatory and treating my uveitis and I'm getting better, though I don't understand why I continue with the cold symptoms.

Until last week I was taking only a 50% extract resveratrol (250 mg trans), which I stopped when this happened, and been thinking of switching to a 100%, but as I live in Europe is harder to find a reasonable priced one (plus taxes). I've order some Vitamin D3 too.

Since I probably suffer from a spondyloarthropathy (probably anquilosant spondylithis) is resveratrol recommended? (I've seen the joint pain and resveratrol thread and could not conclude). What about D3 dosage? Should I do the 25-hidroxy test first? What other supplements do you recommend?

Thanks in advance and congratulations for this great site!

Gomesbs, it sounds like you had a flare-up of the AS/uveitis as a result of a viral infection. You should probably consult a rheumatologist, as you will likely need to manage this disease on a permanent basis. It's important to take care of it early in order to avoid disability later in life. You will probably have pretty good results with physical therapy and anti-inflammatories. Anti-tnf monoclonal antibodies are said to be quite effective for AS, although they are expensive and increase the risk of infections. I would certainly recommend the use of vitamin D3. You should use an oil-based gelcap formulation, as the dry ones are not well absorbed. The best approach is to get a 25-OH-D3 level during the course of supplementation to find the dose you need. In your case I would try to reach a level of 60 ng/ml. This will probably require 2000-4000 IU/day, though it can vary depending on sun exposure and other factors. It would be interesting to know your D3 level before supplementation, to see if you were badly deficient or not, but it's not required. You could start with 2000 IU/d, then get the test after a month or two, and adjust as needed. As far as resveratrol goes, I prefer the higher-purity versions. The available data in the scientific literature is mostly positive for use of resveratrol in autoimmune conditions, but anecdotal reports are negative. It certainly seems good for osteoarthritis, and that will result in claims that "resveratrol is good for arthritis", but that's not pertinent here. If you try it, watch the way you feel and be prepared to drop it if it doesn't seem helpful.

There is a theory that Klebsiella bacteria are involved in the etiology of AS via molecular mimicry, as part of the Klebsiella proteome looks like HLA B27 and various types of collagen. Anti-Klebsiella agents as well as a low starch diet have been examined with some success in reducing levels of inflammation in AS patients.

[youandme]

This is good point..take the Doctor up on these tests..find out if your HLA-B27+
This Doctor is trying to help at least.

\ since I had no major symptoms (only back discomfort when waking up) I disregarded the doctor's recommendation.

this was your first mistake... maybe theres a reason you dont know about that he sent you for the tests? theres absolutely no reason you shouldnt get those tests... i suggest you go back to the doctor asap

if a doctor wants to run tests, what the worst that could happen?

Edited by youandme, 25 October 2009 - 06:22 AM.

[gomesbs]

This is good point..take the Doctor up on these tests..find out if your HLA-B27+
This Doctor is trying to help at least.

\ since I had no major symptoms (only back discomfort when waking up) I disregarded the doctor's recommendation.

this was your first mistake... maybe theres a reason you dont know about that he sent you for the tests? theres absolutely no reason you shouldnt get those tests... i suggest you go back to the doctor asap

if a doctor wants to run tests, what the worst that could happen?

Thank you all for your replies!

I got scared this time, and during the crisis I finally went to a rheumatologist which of course requested a battery of exams from me to make, urine, blood (not only but also for HLAB27) and a scintigraphy, which I'll be doing next week. Probably the 25-hodroxi isn't included but I think I'll have the opportunity later...

I'm male and I don't have any history in the family of autoimmune diseases. I don't remember of any previous infection (except the first anterior uveitis). In fact, unlike youandme I rarely had a cold or the flue or get sick at all, and when I got sick it would pass quickly (maybe because my immune system was always alert). I thought it was related to lot of sports (strength training 5 times a week, play soccer 2 times a week, and sometimes I go for a swim) and, I forgot to tell you, I take 500mg of vitamin C (time released) daily.

Don't know if it's relevant but time 3/4 days before I started with the fever, whenever I had a meal I felt indisposed... don't know if it's related.

For now besides the ant inflammatory I'm taking an antibiotic. If my fever, two days after beginning with anti inflammatory, didn't disappear the doctor told me to start with the antibiotic. After almost 3 days since the anti inflammatory I'm much better but not pain free yet, my neck isn't fully functional and my right foot is still a little inflamed and I'm still with the cold symptoms.

I'll continue to post when I have more news.

[August59]

This is good point..take the Doctor up on these tests..find out if your HLA-B27+
This Doctor is trying to help at least.

\ since I had no major symptoms (only back discomfort when waking up) I disregarded the doctor's recommendation.

this was your first mistake... maybe theres a reason you dont know about that he sent you for the tests? theres absolutely no reason you shouldnt get those tests... i suggest you go back to the doctor asap

if a doctor wants to run tests, what the worst that could happen?

Thank you all for your replies!

I got scared this time, and during the crisis I finally went to a rheumatologist which of course requested a battery of exams from me to make, urine, blood (not only but also for HLAB27) and a scintigraphy, which I'll be doing next week. Probably the 25-hodroxi isn't included but I think I'll have the opportunity later...

I'm male and I don't have any history in the family of autoimmune diseases. I don't remember of any previous infection (except the first anterior uveitis). In fact, unlike youandme I rarely had a cold or the flue or get sick at all, and when I got sick it would pass quickly (maybe because my immune system was always alert). I thought it was related to lot of sports (strength training 5 times a week, play soccer 2 times a week, and sometimes I go for a swim) and, I forgot to tell you, I take 500mg of vitamin C (time released) daily.

Don't know if it's relevant but time 3/4 days before I started with the fever, whenever I had a meal I felt indisposed... don't know if it's related.

For now besides the ant inflammatory I'm taking an antibiotic. If my fever, two days after beginning with anti inflammatory, didn't disappear the doctor told me to start with the antibiotic. After almost 3 days since the anti inflammatory I'm much better but not pain free yet, my neck isn't fully functional and my right foot is still a little inflamed and I'm still with the cold symptoms.

I'll continue to post when I have more news.

Hey gomesbs - Have you had the scintagrapgy thing done yet? Had one myself a couple of years back and just wondered what you thought about it and how it came out?

[gomesbs]

Hi.

Since my first post a lot of exams results came out. My HLAB27 is positive. I have very high ESR (sedimentation Rate) and C reactive protein levels. However I'm not positive for any infection they measured. My scintigraphy showed strong inflammation on my feet and sacroiliitis more pronounced on the left side.

1 month has passed since the initial symptoms, and despite the NSAIDs and sulfasalazine I'm still with strong articular pain. I still have mild fever and throat pain.

For now I'm being medicated on 2gr of ceftriaxone (antibiotic) for 8 days.

The doctors can't be sure if it is a reactive arthritis or AS.

[rwac]

Since my first post a lot of exams results came out. My HLAB27 is positive. I have very high ESR (sedimentation Rate) and C reactive protein levels. However I'm not positive for any infection they measured. My scintigraphy showed strong inflammation on my feet and sacroiliitis more pronounced on the left side.
...
For now I'm being medicated on 2gr of ceftriaxone (antibiotic) for 8 days.

What all did they test you for ?

Were you bitten by a tick by any chance, and did they test for lyme ?

[gomesbs]

Since my first post a lot of exams results came out. My HLAB27 is positive. I have very high ESR (sedimentation Rate) and C reactive protein levels. However I'm not positive for any infection they measured. My scintigraphy showed strong inflammation on my feet and sacroiliitis more pronounced on the left side.
...
For now I'm being medicated on 2gr of ceftriaxone (antibiotic) for 8 days.

What all did they test you for ?

Were you bitten by a tick by any chance, and did they test for lyme ?

I've tested negative for Lyme, they tested me also for brucellosis, AIDS, Hepatitis, siphilis, salmonella, parvovirus... they all came negative.

[rwac]

I've tested negative for Lyme, they tested me also for brucellosis, AIDS, Hepatitis, siphilis, salmonella, parvovirus... they all came negative.

What was your lyme testing like ?

If you got just the ELISA test, it's completely unreliable.

One thing you should seriously consider is go to an LLMD and get a Western Blot from IgeneX.
It's really quite unfortunate that Lyme testing is so terrible and unreliable.

[gomesbs]

I've tested negative for Lyme, they tested me also for brucellosis, AIDS, Hepatitis, siphilis, salmonella, parvovirus... they all came negative.

What was your lyme testing like ?

If you got just the ELISA test, it's completely unreliable.

One thing you should seriously consider is go to an LLMD and get a Western Blot from IgeneX.
It's really quite unfortunate that Lyme testing is so terrible and unreliable.

I did the Western Blot, apparently it's not Lyme, despite having antibodies igg positive. Lyme is very unusual in southern europe.

[rwac]

I did the Western Blot, apparently it's not Lyme, despite having antibodies igg positive. Lyme is very unusual in southern europe.

Now, we're getting somewhere. _Which_ antibodies were IgG positive ?
I have lyme, and only few antibodies IgG positive.

[gomesbs]

Don't know if I'm answering righ but I think it was Borrelia burgdoferi IgG... but as I said it's very unusual and my symptoms fit more in other reactive arthritis

[rwac]

Don't know if I'm answering righ but I think it was Borrelia burgdoferi IgG... but as I said it's very unusual and my symptoms fit more in other reactive arthritis

Borrelia Burgdorferi = bacteria that causes Lyme.

Please look up the test results and get some details.

Also, you should find an LLMD(Lyme Literate MD) so you can proceed with your treatment.
8 days of antibiotics is not enough for treating Lyme.

Sounds like you might have Lyme. Sadly, most doctors don't know how to treat Lyme correctly.

[gomesbs]

Been almost 4 months since the beginning of my flare, in the last exams, 2 weeks ago, my ESR finally begun to decrease (89 now) and PCR is now normal (0,04 the maximum healthy limit being 0,5). All pain is almost gone except for my feet, I can walk without limping but can't run yet, and a upper back discomfort that sometimes wakes me up early in the morning. Physically I regained almost the weight lost and my strength and flexibility are ok again.

2 months ago I had to stop diclofenac due to liver problems, so I'm only medicated with 7,5mg of prednisone and 2 grams of sulfasalazine. 2 months ago begun to take resveratrol again (500mg 98%) and increased my Vitamin D to 5000IU since I was slightly deficient (27 ng/ml in 25 hidroxi, after 1 month on 2000IU).

As to the diagnosis doctors are still bouncing between AS and Reactive Arthritis but it doesn't seem to matter to them since they will be monitoring me, and prescriptions are the same for now…

Thank you all for your help.

[rwac]

2 months ago I had to stop diclofenac due to liver problems, so I'm only medicated with 7,5mg of prednisone and 2 grams of sulfasalazine. 2 months ago begun to take resveratrol again (500mg 98%) and increased my Vitamin D to 5000IU since I was slightly deficient (27 ng/ml in 25 hidroxi, after 1 month on 2000IU).

Be careful with corticosteroids. If it is indeed an infection, it will worsen things in the long run.

Good luck.