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Taylor King

Diagnosed W/ Ra Today

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Hi Evereyone,

I was diagosed Gluten Intolerant on April 17th, 2007 and have been on a strict Gluten free diet since. My thryoid antibodies have been cut in half, but my RA test went from a weak positive to strong positive during the same time period. The rheumatologist wanted to put me on methotrexate (sp?), but I managed to talk him into 2 1/2 more months on the gluten free diet b/c I have heard 6 months is a big date for those who have health problems and start to feel better going gluten free.

Does anyone have positive 'remission' stories from RA w/ a gluten free diet? If not, any remission autoimmune stories at all?

Take care,

Taylor

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Were you diagnosed with celiac disease or gluten intolerance? Just curious how you were diagnosed. :)

If you have celiac disease, I would definately try the diet for a while to see if it helps. Some celiacs have joint pain that goes away on the gluten-free diet.

Be sure they rule out Lyme Disease before you start steroids for RA. RA is a common misdiagnosis for Lyme and steroids make Lyme considerably worse. Your doctor will discount how important this is because Lyme is a very political disease right now. Google it and you will learn a lot and check out www.ilads.org. I have significant joint pain from my Lyme.

If you have been tested already, then double check to be sure it was by IGeneX (www.igenex.com). Other labs are not as sensitive and leave out Lyme specific bands.

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A friend of mine with RA and fibromyalgia went gluten-free and casein free on the advice of her doctor to lessen the inflammation. She said it did help, but at that point she was on so many drugs that it didn't help enough for her to want to continue. She's still gluten and casein light, however.

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Hi Carla,

My doctor said I was 'atypical celiac'. To tell you the truth, I've never been quite clear on what that means. I was tested thru Enterolab for casein, gluten, and soy and came up intolerant to all three. Plus genetically, I have the celiac gene. However, we did not do any further testing w/ bloodwork or biopsy.

The reason I was tested in the first place is due to a year of mysterious joint pain and a history of autoimmune thyroid disease. My doctor has a lot of experience w/ gluten intolerance and I was referred to him by someone else who had a similar story to mine and turned out to be gluten intolerant as well.

I have not been tested for lyme disease, however, there was a particular test associated with RA that I have tested positive for. Cyclic citrullinated peptide antibodies. Plus X-rays of my hands and feet are already showing some minor joint damage. Do you think there is a chance it is associated w/ Lyme disease?

I'm just wondering if a gluten free diet can help put the RA into remission so it's as if I don't have the disease. This is so scary for me. I am 33.

Jestgar, when your friend went on the diet, was it established that her body was having an immune reaction to the gluten and casein? I've heard that part of the reason why going gluten free helps IF you are gluten intolerant is it calms the immune system down. It may help to put other autoimmune diseases that are remaining active due to the immune system being on 'fire' all the time with the gluten consumption calm down as well. I'm very interested in hearing if someone has actually experienced this. As I mentioned, my thyroid antibodies (which were very elevated) were cut in half in the 3 1/2 months since going gluten free, but right now I'm more concerned about this RA stuff.

Take care,

Taylor

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Hi Carla,

My doctor said I was 'atypical celiac'. To tell you the truth, I've never been quite clear on what that means. I was tested thru Enterolab for casein, gluten, and soy and came up intolerant to all three. Plus genetically, I have the celiac gene. However, we did not do any further testing w/ bloodwork or biopsy.

The reason I was tested in the first place is due to a year of mysterious joint pain and a history of autoimmune thyroid disease. My doctor has a lot of experience w/ gluten intolerance and I was referred to him by someone else who had a similar story to mine and turned out to be gluten intolerant as well.

I have not been tested for lyme disease, however, there was a particular test associated with RA that I have tested positive for. Cyclic citrullinated peptide antibodies. Plus X-rays of my hands and feet are already showing some minor joint damage. Do you think there is a chance it is associated w/ Lyme disease?

I'm just wondering if a gluten free diet can help put the RA into remission so it's as if I don't have the disease. This is so scary for me. I am 33.

Jestgar, when your friend went on the diet, was it established that her body was having an immune reaction to the gluten and casein? I've heard that part of the reason why going gluten free helps IF you are gluten intolerant is it calms the immune system down. It may help to put other autoimmune diseases that are remaining active due to the immune system being on 'fire' all the time with the gluten consumption calm down as well. I'm very interested in hearing if someone has actually experienced this. As I mentioned, my thyroid antibodies (which were very elevated) were cut in half in the 3 1/2 months since going gluten free, but right now I'm more concerned about this RA stuff.

Take care,

Taylor

Hi Taylor,

My husband was dx with Psoriatic Arthritis (similar to RA - no rheumatoid factor) 2 yrs before his dx of celiac disease.

Going gluten-free has improved the level of pain and swelling he suffers - BUT it hasn't disappeared.

His flare ups are less frequent but he does still get them.

The fact that your x-rays already show damage to your joints I would say it's highly unlikely it could be Lyme (Carla? - correct me if I'm wrong?)

RA is a progressive disease and if you are already showing damage to your joints I'd seriously consider trying one of the DMARDS (methotrexate or others)

Although NSAIDS and pain killers can help - DMARDS help stop the progression of damage - and as my hubby has found out once damage is done to your joints not much can be done.

Unfortunately for my hubby he couldn't tolerate the drugs and has damage to various joints.

Alot of damage could occur in 6 months and in my opinion is a big gamble.

It did take several months gluten-free for my hubby to get any relief of his symptoms.

You could try and come off the dmards once firmly established on the gluten-free diet to see if your ok??

Good Luck :)

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I am not a fan of any medication but I agree with Nikki on this one. If you have a positive RF and show joint damage you should not wait on the methotrexate. DMARDS are the gold standard for RA treatment and there is a lot of research suggesting the sooner you start the better your long-term prognosis. Six months can cause irreparable harm to your joints and the damage becomes more noticable as the swelling subsides. I'd continue with the diet and do the methotrexate.

There was a period of time before my diagnosis that my rheumatologist was concerned that I had RA. I had no RF but had excruciating joint pain and swelling that started about 2 months before my celiac diagnosis. The pain and swelling was particularly bad in my hands and feet which are big areas for RA. At the time he suggested that we start methotrexate because he didn't feel it was worth the risk to wait for the RF to be positive. He wanted to stop any progression and damage. I had a serious reaction to the very first shot and had to discontinue it. Fortunately, this was just a few weeks before I went gluten-free. When I eliminated gluten and dairy the joint pain and swelling went away completely within 2 months. Now, joint pain is one of my big symptoms when I get glutened. I have 1 finger that has permanent joint damage from my 2 month experience. Fortunately, everything points to gluten being the culprit and I suspect that I would've gotten a formal RA diagnosis at some point had I not changed my diet.

One thing on the methotrexate. It can make you anemic so take lots of B vitamins - especially folic acid - before you start.

Best of luck to you!

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Hi Carla,

My doctor said I was 'atypical celiac'. To tell you the truth, I've never been quite clear on what that means. I was tested thru Enterolab for casein, gluten, and soy and came up intolerant to all three. Plus genetically, I have the celiac gene. However, we did not do any further testing w/ bloodwork or biopsy.

The reason I was tested in the first place is due to a year of mysterious joint pain and a history of autoimmune thyroid disease. My doctor has a lot of experience w/ gluten intolerance and I was referred to him by someone else who had a similar story to mine and turned out to be gluten intolerant as well.

I have not been tested for lyme disease, however, there was a particular test associated with RA that I have tested positive for. Cyclic citrullinated peptide antibodies. Plus X-rays of my hands and feet are already showing some minor joint damage. Do you think there is a chance it is associated w/ Lyme disease?

I'm just wondering if a gluten free diet can help put the RA into remission so it's as if I don't have the disease. This is so scary for me. I am 33.

Nikki, there are some people on Lymenet's message board who do have joint damage. I can't say how common it is though.

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Ugh, posting trouble ...

I agree with what everyone else is saying, if you have damage already, you need to move forward with this. If the gluten-free diet helps, you can reduce the medication later.

Since I don't personally know much about RA, but I do know that there are people with Lyme who test positive for it, I'd suggest posting about it on Lymenet to see what more experienced people have to say.

I'm not of the thinking that everyone has Lyme Disease ... it's just that Lyme is so serious, I would want to rule it out if I had a disease with similar symptoms, especially one that required drugs that are counter-indicated by Lyme. Plus, Lyme can cause autoimmune type conditions in the body, which could answer the question of why so many of us Lymies test postive for gluten intolerance and thyroid trouble.

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Thank you everyone for your comments. I forgot to mention that I have been on Plaquenil (one of those drugs) since Oct before the tests became positive. Which really concerns me that I would have joint damage so soon even on one of those drugs.

That is the only reason the doctor has agreed to hold off on the methotrexate for 2 1/2 more months. But maybe I should do aggressive treatment now that it came up positive. Would my doctor let me walk out the door so easily if it was the wrong decision?

I am interested in the Lyme disease, but I had brought that up to another doctor last Oct and he practically jumped down my throat for even asking the question. I saw one of the discovery channel shows that indicated it is very easy to get a 'false negative'.So it sounds difficult to diagnos. I don't want to make a decision I regret.

Take care,

Taylor

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Ugh, posting trouble ...

I agree with what everyone else is saying, if you have damage already, you need to move forward with this. If the gluten-free diet helps, you can reduce the medication later.

Since I don't personally know much about RA, but I do know that there are people with Lyme who test positive for it, I'd suggest posting about it on Lymenet to see what more experienced people have to say.

I'm not of the thinking that everyone has Lyme Disease ... it's just that Lyme is so serious, I would want to rule it out if I had a disease with similar symptoms, especially one that required drugs that are counter-indicated by Lyme. Plus, Lyme can cause autoimmune type conditions in the body, which could answer the question of why so many of us Lymies test postive for gluten intolerance and thyroid trouble.

Hey Carla,

I have posted a question on Lymenet, so we'll see what they say. I'm wondering if the Plaquenil will interfere with testing for Lyme. Also that Cyclic citrullinated peptide antibodies test is supposed to be a predictor. Like maybe even years in advance of the getting RA (I think). It's so odd that I would have horrible joint pain and test negative. Then eventually over this past year that test kept increasing until it is now 'strong positive'.

To quote my friend, "Ordinarily this antibody is present sometimes years in advance of symptoms and is often used as a predictor. It almost seems to me that something was causing the joint inflammation and your body responded by churning out antibodies to get rid of it. Autoimmune disorders traditionally involve antibodies which attack the bodies own tissues. One does have to ask the question given the timeline whether it isn't in fact antibodies attacking your joints but something else. It's unlikely to be Lymes disease but it is notable that Lymes disease produces joint inflammation very similar to RA with the difference being that in the case of LD, the bacteria is easily identified."

Take care,

Taylor

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Yeah, that's the reaction I'd expect. It's the same one I got from my ob/gyn at my last appt.

Plaquenil is a drug used for Lyme treatment. Did you feel worse at all when you started it? I take 200 mg. per day. It busts open the dormant form of the Lyme ... so if you felt worse, I'd really pursue the testing.

Here's a video that shows a lot about Lyme. http://www.openeyepictures.com/uos/ It's worth the trouble to download the right player to see it. It explains somewhat the political nature of Lyme among the medical community. So does www.ilads.org under faq's.

It is easy to get a false negative, especially if you don't use www.igenex.com for testing. Plus, as always, get a copy of your results. The CDC standards are for tracking purposes ONLY, not diagnostic ... yet most doctors use them for diagnostic purposes.

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Hi Taylor,

You're getting a lot of great info here so I'll just answer your question.

My friends N.D. believes that both gluten and casein can cause inflammation in everybody and if you already have an inflammatory disease like RA you may be able to lessen the symptoms by not eating gluten or casein.

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with the difference being that in the case of LD, the bacteria is easily identified."

Take care,

Taylor

Except for this part, he makes perfect, perfect sense. I went 35 years undiagnosed!!! So much for easy. :)

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I have been on the gluten free, casein free life for years and just 2.5 years ago I was diagnosed with RA. I told the dr. I did NOT want to go on methotrexate or anything else, that I would get even stricter with my diet (no rice, no gluten substitutes, etc) and see what happened. Well, from January to October of that year it got much worse. I was bedridden from September to October. Late October I told them I wanted the methotrexate. I've been on it ever since, as well as plaquenil and prednisone as needed. I'm no longer bedridden but I do still have flares. I do get much worse if I"m accidentally glutened but I can't say that gluten-free has improved me a whole lot since I was gluten-free for years before I ever got RA.

Once you have the damage, there's no going back. I fought the drugs all the way until I could no longer bathe myself, lift myself out of bed, walk, or even feed myself. My family had to hold a glass to my lips for me to drink. They literally had to lift the fork of food to my mouth and by the end my jaw was so affected I went on liquids only. They totally supported me in not wanting the drugs though but I got to the point that I saw what it was doing to them, not just what it was doing to me, and I gave in. I'm glad I did, it's made a positive difference in my health and life.

Ann

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I have been on the gluten free, casein free life for years and just 2.5 years ago I was diagnosed with RA. I told the dr. I did NOT want to go on methotrexate or anything else, that I would get even stricter with my diet (no rice, no gluten substitutes, etc) and see what happened. Well, from January to October of that year it got much worse. I was bedridden from September to October. Late October I told them I wanted the methotrexate. I've been on it ever since, as well as plaquenil and prednisone as needed. I'm no longer bedridden but I do still have flares. I do get much worse if I"m accidentally glutened but I can't say that gluten-free has improved me a whole lot since I was gluten-free for years before I ever got RA.

Once you have the damage, there's no going back. I fought the drugs all the way until I could no longer bathe myself, lift myself out of bed, walk, or even feed myself. My family had to hold a glass to my lips for me to drink. They literally had to lift the fork of food to my mouth and by the end my jaw was so affected I went on liquids only. They totally supported me in not wanting the drugs though but I got to the point that I saw what it was doing to them, not just what it was doing to me, and I gave in. I'm glad I did, it's made a positive difference in my health and life.

Ann

Oh Ann,

I'm so sorry to hear about what you have been thru. Do you regret not going on the drugs right away? Have you had any side effects from the methotrexate? What tests were run to determine you had RA?

Also, do you have to be on metho the rest of your life, or can you go off the drug for any period of time?

I guess the only thing going for me is the plaquenil, which i hope is disease modifying. gosh, this is so scary!!!!!

taylor

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Yeah, that's the reaction I'd expect. It's the same one I got from my ob/gyn at my last appt.

Plaquenil is a drug used for Lyme treatment. Did you feel worse at all when you started it? I take 200 mg. per day. It busts open the dormant form of the Lyme ... so if you felt worse, I'd really pursue the testing.

Here's a video that shows a lot about Lyme. http://www.openeyepictures.com/uos/ It's worth the trouble to download the right player to see it. It explains somewhat the political nature of Lyme among the medical community. So does www.ilads.org under faq's.

It is easy to get a false negative, especially if you don't use www.igenex.com for testing. Plus, as always, get a copy of your results. The CDC standards are for tracking purposes ONLY, not diagnostic ... yet most doctors use them for diagnostic purposes.

Hi Carla,

I had no idea Plaquenil was also used for Lyme disease. Would that affect my test results? I take 400 mg a day, and my dr just increased it to 600mg a day yesterday in lieu of methotrexate.

If I am on Plaquenil for 9 months, should I be in so much pain still if it is lyme disease, or is there a lot more involved in the treatment?

I felt so bad on the drug, but I was advised it would take up to 6 months for me to feel any better which it did. I can function....barely. But it constant pain. And I can't work right now. I am living with my parents. My cobra insurance runs out Nov 1st. I don't know what I will do then, b/c no one will want to insur me then! Yikes!

Taylor

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Hi Carla,

I had no idea Plaquenil was also used for Lyme disease. Would that affect my test results? I take 400 mg a day, and my dr just increased it to 600mg a day yesterday in lieu of methotrexate.

If I am on Plaquenil for 9 months, should I be in so much pain still if it is lyme disease, or is there a lot more involved in the treatment?

I felt so bad on the drug, but I was advised it would take up to 6 months for me to feel any better which it did. I can function....barely. But it constant pain. And I can't work right now. I am living with my parents. My cobra insurance runs out Nov 1st. I don't know what I will do then, b/c no one will want to insur me then! Yikes!

Taylor

I don't think it would affect testing because it's not an abx, but I don't know. You could ask the folks over at IGeneX what they think.

It is more complicated to treat Lyme ... Plaquenil goes after the cyst form, but there are two other forms of borrelia, so you need two other medications (abx) for these forms. Plus, many of us have coinfections.

I hope you get answers soon. It's really hard being chronically ill and disabled from it.

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Except for this part, he makes perfect, perfect sense. I went 35 years undiagnosed!!! So much for easy. :)

35 years!!!!! Carla, that sounds like a nightmare. How did you cope? Did you find much relief with treatment? What was the treatment? I've heard that there is only a small window of opportunity to really get the lyme disease for a good recovery. Is this true? If so, do you know how long this is? I've been sick since May '06. I'm worried it is too late for me to get good results if it is that. I definitely agree I need to get tested b4 moving forward with serious treatment for RA. I've also decided to get a second opinion for the RA.

My mom got this off the CDC website. What is your opinion of this information?

CDC recommends a two-step process when testing blood for evidence of Lyme disease. Both steps can be done using the same blood sample.

1) The first step uses an ELISA or IFA test. These tests are designed to be very

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Hi Taylor, I don't know what the specific rate of accuracy for the first tier of the test is, but it's VERY low. Many people with proven Lyme test negative for it. Also, the comment about the IgM being a false positive is inaccurate. The reason is that the Lyme cycles. The IgM is indicative of a new infection with most diseases, but with borrelia (Lyme), the bacteria is refreshed periodically so will often show an IgM positive on a chronic Lyme patient. Lyme docs look at the specific bands that show positive ... if they are Lyme specific, it shows positive exposure to Lyme because nothing else could have caused it. Lyme is ultimately a clinical diagnosis (even the CDC agrees), so the testing is only used to support the diagnosis ... it's a diagnosis of symptoms supported by testing.

Many people who have had Lyme for a long time end up testing negative. It's because of the effect of Lyme on the immune system.

I believe www.ilads.org has more information on this. I'm vague because I don't have all the facts, just a general understanding of it.

People who are treated right away have the chance of completely eradicating the Lyme. People like me work for remission, then to stay there. The problem I have with the CDC's recommendations is that they mention someone who has had Lyme for a long time will have complications, then they say that the Lyme just goes away, or that it gets treated exactly the same as a person who got bitten today. They treat tuberculosis, also a bacterial infection that can be both active and dormant, for two years or more, but they deny Lyme needs the same length of treatment.

Show your mom the video ... did I post this yet? http://www.openeyepictures.com/uos/

Now, for your questions about me ...

I mostly had the disease in the dormant state. I would have minor symptoms that I thought everyone had. Four times it's flared up so that it disabled me for months at a time. This time, the fourth time, it's been years instead of months.

I've been into health food and supplements religiously for a couple decades now because they make me feel better. I've also been very aware of diet and exercise.

This last flare was the most major. I had joint pain, muscle aches, night sweats, air hunger, heart palpitations, weight loss, diarrhea, food sensitivities, disorientation, get lost driving familiar places, have trouble reading, problems with word recall, poor short term memory, hair loss, extreme fatigue, insomnia, loss of appetite, etc. This time it started with the joint pain, but over the next four years progressed to all these symptoms.

I was told I had Somatization Disorder. I demanded an IGeneX Lyme test and tested IgG positive. Doctor STILL maintained I had Somatization Disorder, not Lyme. Now I fly to see a Lyme specialist in NY. He's the guy on the video with the wild tie.

I was about 15% of normal back in January when I started treatment. Now I'm about 75-80% and improving monthly. I've come a long way and we expect a full recovery.

My treatment is long term abx, anti-protozoals, anti-fungals, probiotics, and many immune system building supplements.

It's really good that you are taking your health into your own hands and researching it yourself. BTW, I'm six goofy kids on LN. I chose a more anonymous name there since I talk about specifics of my medical treatment.

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Hi Taylor, I don't know what the specific rate of accuracy for the first tier of the test is, but it's VERY low. Many people with proven Lyme test negative for it. Also, the comment about the IgM being a false positive is inaccurate. The reason is that the Lyme cycles. The IgM is indicative of a new infection with most diseases, but with borrelia (Lyme), the bacteria is refreshed periodically so will often show an IgM positive on a chronic Lyme patient. Lyme docs look at the specific bands that show positive ... if they are Lyme specific, it shows positive exposure to Lyme because nothing else could have caused it. Lyme is ultimately a clinical diagnosis (even the CDC agrees), so the testing is only used to support the diagnosis ... it's a diagnosis of symptoms supported by testing.

Many people who have had Lyme for a long time end up testing negative. It's because of the effect of Lyme on the immune system.

I believe www.ilads.org has more information on this. I'm vague because I don't have all the facts, just a general understanding of it.

People who are treated right away have the chance of completely eradicating the Lyme. People like me work for remission, then to stay there. The problem I have with the CDC's recommendations is that they mention someone who has had Lyme for a long time will have complications, then they say that the Lyme just goes away, or that it gets treated exactly the same as a person who got bitten today. They treat tuberculosis, also a bacterial infection that can be both active and dormant, for two years or more, but they deny Lyme needs the same length of treatment.

Show your mom the video ... did I post this yet? http://www.openeyepictures.com/uos/

Now, for your questions about me ...

I mostly had the disease in the dormant state. I would have minor symptoms that I thought everyone had. Four times it's flared up so that it disabled me for months at a time. This time, the fourth time, it's been years instead of months.

I've been into health food and supplements religiously for a couple decades now because they make me feel better. I've also been very aware of diet and exercise.

This last flare was the most major. I had joint pain, muscle aches, night sweats, air hunger, heart palpitations, weight loss, diarrhea, food sensitivities, disorientation, get lost driving familiar places, have trouble reading, problems with word recall, poor short term memory, hair loss, extreme fatigue, insomnia, loss of appetite, etc. This time it started with the joint pain, but over the next four years progressed to all these symptoms.

I was told I had Somatization Disorder. I demanded an IGeneX Lyme test and tested IgG positive. Doctor STILL maintained I had Somatization Disorder, not Lyme. Now I fly to see a Lyme specialist in NY. He's the guy on the video with the wild tie.

I was about 15% of normal back in January when I started treatment. Now I'm about 75-80% and improving monthly. I've come a long way and we expect a full recovery.

My treatment is long term abx, anti-protozoals, anti-fungals, probiotics, and many immune system building supplements.

It's really good that you are taking your health into your own hands and researching it yourself. BTW, I'm six goofy kids on LN. I chose a more anonymous name there since I talk about specifics of my medical treatment.

Yay! I'm so glad you found out what's wrong, and that you are on your way to feeling better! :)

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Oh Ann,

I'm so sorry to hear about what you have been thru. Do you regret not going on the drugs right away? Have you had any side effects from the methotrexate? What tests were run to determine you had RA?

Also, do you have to be on metho the rest of your life, or can you go off the drug for any period of time?

I guess the only thing going for me is the plaquenil, which i hope is disease modifying. gosh, this is so scary!!!!!

taylor

I do regret not going on mtx right away and yet I wouldn't appreciate what I've got if I hadn't gone thru all that. I do get some nausea and I've had some hair loss but it's worth it. I had and have regular (6 to 8 week) blood tests done that test rheumatoid factor, c-reactive protein, liver counts, Sed-rate and I don't remember what else.

I will be on mtx until it no longer works I guess. There's no talk of going off of it at this point anyway.

This can be a scary disease but it is manageable most times.

Ann

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We have RA in my family & but I do not have it. I think it is because of my lifelong attention to my diet because of food allergies. I was allergic to barley & oats for 35 years & for the past 10 years I was wheat light & then gluten free now for 3 years. BUT, I rarely eat any replacement grains, & I do not eat beef & I do not eat the nightshades. Those potatoes I feel are a huge contributor to join pain. I also never drank orange juice which I think goes straight to the joints & makes them swell up <_< & I am dairy free

also, no coffee, no tea, no sodas. And I eat a healthy diet with very little junk. I recommend a couple of books Eat Right for Your Blood Type, & Super Foods & Dangerous Grains, for people that are wanting to change their diet.

For RA I think you have to start with gluten free, dairy free, soy free, grain free, (maybe rice & corn if you can handle it) nightshade family free & then see what happens.

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