Next Rheum visit.

By Ish Sunday, March 10, 2013

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The Flare.

It's been going on and on. I went to see my Rheum and she increased my dose of methotrexate. That didn't work, so she put me on prednisone.

And just to make matters worse, I was sick, stressed out and off Enbrel for a couple of weeks.

So I've been back on all meds, no longer sick, less stress in my life... but still having this flare. I can't wean off the prednisone because that causes all of the symptoms to get a LOT worse.

It's almost time for my regular rheum appointment. If this was a year ago, I would have been chomping at the bit to try something new. But now? Not really. The MTX/Enbrel combo had been working really well. I was feeling the best I had felt since before I got RA. So I keep assuming (thinking/hoping) that if given enough time, the combo will kick back in and start working like it did before.

But I also wonder if this is a false assumption.

Any insights?

Thanks,

Ish

Nutrition is Important in the Fight Against RA and Chronic Disease

Comments (14) | Add comment

V, Health Guide

3/11/13 9:09pm

Hi, Ish,

My answer is, I don't know. I am in the same boat. Was off my meds for six weeks because of the flu and that stomach bug. So.......tonight is my 4th shot of Orencia since I restarted meds, and I have had the worst flares of my life in the last month...burning pain in my knees and feet and thighs. On prednisone right now w/no hope of decreasing it in sight.

I am hoping my drugs start working soon again, too. I just don't know. How long did it take for Embrel to work for you when you first started it?

Hugs,

Ish

3/12/13 7:34pm

Hi V,

Yes, it sounds like we're in the same leaky boat!

I could feel a very small improvement with Enbrel the first month. Then each month got better. After about a year, I was feeling the best I'd felt since before RA. Did you experience a similar progression with the Orencia?

I hope you're feeling better!

Ish

Janis

3/21/13 4:05pm

I am new to this forum but very familiar with RA for the last 12 years and have finally found a "cure" without taking medications! It's all food related. I know it sounds crazy, but let me give you some information I have learned. RA and Lupus are autoimmune diseases caused by tiny leaks in the small intestines called "leaky gut syndrome" (google it, you'll find more info). The leaks are caused by small "explosions" in your intestines caused by food allergies. When your intestines leak, your body's response is to form Antibodies to bind to the leaked molecules. The result is the body's immune system attacking these molecules which are deposited throughout the body...in the joints for RA and in the organs for Lupus. In the processes of attacking these “leaked molecules”, the immune system attacks the surrounding cells as well - meaning joint cells in RA and organ cells in Lupus. I know this may sound technical, but it's simple...

1. A person eats food in which he/she is allergic to

2. This food causes small explosions in the intestines

3. The explosions cause small holes or "leaky gut"

4. Molecules and bacteria seep through holes from the intestine and into the body

5. These molecules settle in joints or organs

6. The Immune System attacks the molecules along with the surrounding joint tissue (RA) or organ tissue (Lupus)

7. THE IMMUNE SYSTEM ATTACKING THE CELLS IN YOUR JOINTS IS RHEUMATIOD ARTHRITIS. LEAKY GUT IS THE CAUSE OF RA AND OTHER AUTOIMMUNE DISEASES. TO FIX THE PROBLEM, DON'T EAT FOODS YOU'RE ALLERGIC TO!

8. A Functional Medicine Doctor will test you for food alleries. Make an appointment. Google a Functional Medicine Doctor in your area.

To give you a little more personal background about myself and dealing with RA, I have had RA since my 2nd pregnancy with my daughter who is now 12. I went 3 years undiagnosed then to a Harvard trained Dr. in Denver who tested my RA factor and put me on Methotrexate first then bi-monthly infusions of Remicade. For 7 years, no problems with RA. The meds worked, but was tired and sick from compromised immune system...these meds work to suppress your immune system so it won't attack your joints. Medications only address the symptoms, NOT the problem which is "leaky gut" caused by food allergies. Someone suggested I see a Functional Medicine Doctor, so I did. It turns out I'm extremely allergic to wheat and dairy (after internet researching, I have found many people with RA, and other autoimmune diseases, have wheat and dairy allergies). After being tested I eliminated allergic foods and began feeling better in about 2-3 months. It takes a while for the intestines to heal. It really took 6 months to really feel completely better. I hardly have any symptoms of RA at all. This is a far cry from where I was last summer with extreme pain so terrible that I could hardly get out of the bathtub due to devastating pain in my shoulders, knees, hips, wrists and ankles. My daughter had to help me get dressed and undressed. Even going to the grocery store was more than I could handle. Walking downstairs backwards was the only way to get down due to my swollen feet and ankles. And I was so tired all the time and could hardly wait to get back to bed.

In order to get better you MUST get tested and be disciplined in your diet! In my case, there was no other choice. I was not going to continue on meds which compromise my immune system. Not following the diet meant unbearable pain.

Not enough people know about the connection between diet and autoimmune diseases. Please follow my advice and seek a Functional Medicine Doctor. Some are MD's as well as FM Dr.s. What do you have to lose? I can't tell you how much my life has changed by only altering my diet...how easy is that?

In the mean time, take warm baths to relieve pain. It worked best for me. Try not to take Advil or other pain relievers as they also contribute to leaky gut. Sometimes you just have to have some relief, I know. At least try to take as few NSAIDS (Advil and alike) as possible. I hope this information helps someone out there.

Lene Andersen, Health Guide

3/13/13 3:30pm

I just got home from my rheumatologist where we discussed the possibility of my Humira not working as well as it used to. She said that anti-TNF drugs like Enbrel and Humira have less incidence of stopping to work then the other. Biologics. Obviously it happens, but I think it depends on a number of things. For instance, how long has it been since you went back on the drugs? It's common for meds to take up to three months to get maximum impact, so if it's been shorter than that, it may be a matter of hanging in there until you "load up."

It may also be possible that the break did impact your body's response to the meds — it's why rheumatologists usually recommend we don't take breaks unless absolutely necessary (which it obviously was in your case). It may be that you now need a higher dose. My rheumatologist recommended that I increase my Humira — either by dose or frequency — to see if that would work. When you talk to your rheumie, they may also recommend that you increase the amount of medication by either taking more on your scheduled injection days or by taking your usual dose more often. Hopefully, that will do the trick.

Keep us posted, please?

Ish

3/17/13 3:40pm

Hi Lene,

Thank you. What you said makes me feel like my thought process is more than hopeful/wishful thinking. Always a comfort!!!!

I hope your Humira steps back up and works better for you again! I really wonder if Spring and sunshine (vit D) are going to help everyone feel better?

Ish

Lene Andersen, Health Guide

3/18/13 12:30pm

Winter is always hard for me. I can't wait for warmth and sunshine...

I think we — and the doctors — tend to get caught up in something being the gold standard. As in "this drug at this dose will work for everyone the exact same way." It doesn't. People's bodies are different and they respond differently. Some are very sensitive to medication, others need the equivalent of a 2 x 4 to hit the RA over the head. And sometimes, depending on what's going on in our lives, we may change the way we respond. More stress can cause the RA to get more active, so you need more medication to beat it down. The warmth and relaxation of summer can help you feel better, so you need less medication. My rheumatologist tells me to increase or decrease medication depending on how I feel. Pay attention to your body - if you listen close, it will tell you what it needs.

Janis

3/21/13 4:06pm

1. A person eats food in which he/she is allergic to

2. This food causes small explosions in the intestines

3. The explosions cause small holes or "leaky gut"

4. Molecules and bacteria seep through holes from the intestine and into the body

5. These molecules settle in joints or organs

6. The Immune System attacks the molecules along with the surrounding joint tissue (RA) or organ tissue (Lupus)

7. THE IMMUNE SYSTEM ATTACKING THE CELLS IN YOUR JOINTS IS RHEUMATIOD ARTHRITIS. LEAKY GUT IS THE CAUSE OF RA AND OTHER AUTOIMMUNE DISEASES. TO FIX THE PROBLEM, DON'T EAT FOODS YOU'RE ALLERGIC TO!

8. A Functional Medicine Doctor will test you for food alleries. Make an appointment. Google a Functional Medicine Doctor in your area.

Janis

3/21/13 4:07pm

1. A person eats food in which he/she is allergic to

2. This food causes small explosions in the intestines

3. The explosions cause small holes or "leaky gut"

4. Molecules and bacteria seep through holes from the intestine and into the body

5. These molecules settle in joints or organs

6. The Immune System attacks the molecules along with the surrounding joint tissue (RA) or organ tissue (Lupus)

7. THE IMMUNE SYSTEM ATTACKING THE CELLS IN YOUR JOINTS IS RHEUMATIOD ARTHRITIS. LEAKY GUT IS THE CAUSE OF RA AND OTHER AUTOIMMUNE DISEASES. TO FIX THE PROBLEM, DON'T EAT FOODS YOU'RE ALLERGIC TO!

8. A Functional Medicine Doctor will test you for food alleries. Make an appointment. Google a Functional Medicine Doctor in your area.

Lene Andersen, Health Guide

3/21/13 7:46pm

Hi Janis,

I'm really glad you found something that works for you. However, to my understanding the joint pain that can a company leaky gut syndrome is very different from RA. I know there's a lot of theories out there and there is currently research into gut-related issues that may contribute to RA.

over my 40+ years with RA I have incorporated many different types of alternative treatments in my care and believe it can be a very important part of achieving better quality of life. Many people with RA find that diet changes can contribute to symptom control. The concern of many is when you choose only diet changes rather than the combination of medication, diet changes and alternative treatments.

I think it's fabulous that your diet changes appear to have contributed to dialing down your RA, but the question is whether you are fully in remission. If you have pain, it may be a sign that you have a low level of disease activity and that can cause damage in your joints or potential systemic issues. Are you seeing a rheumatologist, as well as a functional medicine doctor? They are specialists in different things and just as a rheumatologist would not be able to treat you from the perspective of functional medicine, a functional medicine doctor will not be able to fully assess the status of your disease. Keep doing what you're doing, but I do recommend that you have a rheumatologist as part of your medical team to make sure that you don't have low levels of disease possibly affecting your health.

Thanks very much for coming by!

Janis

3/21/13 8:09pm

Thank you very much for the advice. I never really thought about the effects of lower levels of the disease. My rheumatologist doesn't believe there is any correlation between RA and diet. I know there is, there just isn't any research to back it up. It takes such a long time to see results and is extremely challenging to keep to a diet such as mine. I am so sorry to hear you have had to struggle with this terrible disease for so long. And I hope it was not too forward of me to shoot off posts to people. My husband sent a RA article from this site, and you know how it goes, once I got on there and saw so many people suffering, I thought I'd share my experience. Maybe someone out there will benefit in some way. I am very scared to get back on medication. Suppressing my immune system is terrifying to me esp because when I do have an occaisional symptom it is very mild. What testing do you recommend? I really appreciate your response to me. Thank you very much.

Janis

3/23/13 4:52am

Hello Lene. It's 2:30 am and all I can think about is rheumatoid arthritis and Health Central website. I feel I came on too strongly with my post and want to apologize if I was too abrupt. That's how I react...just dive in and go. After getting more acquainted with this site, I see how gentle, caring and respectful all participants seem to be towards one another and that is very nice. For some reason I just have this strong feeling to express myself and tell my story. I keep asking myself how to approach this topic without sounding like a know-it-all, b/c I'm not. I'm just a wife and mother of 2 with RA who has experienced positive results with the elimination of wheat (gluten), dairy, eggs and most meat proteins. I can't seem to find the right way to inform of my journey. I'm not encouraging the dismissal of RA meds, just want to say diet may help as well. I've googled and there are many studies our there. Here's one on leaky gut and RA: http://www.drmcdougall.com/res_arthritis.html . A softer approach is definitely the vibe I'm getting from this wonderful, supporting site. Thank you for your earlier response, I can see that your support has meant so much to many during the years. Keep up the great work! - Janis

Lene Andersen, Health Guide

3/23/13 12:48pm

Hi Janis,

don't worry yourself, sweetie. You found something that works for you and it's natural to want to shout it from the rooftops! I remember feeling the exact same way when I first started Enbrel. You find something that makes the awful of RA go away and you get a little drunk with the joy of it.

On RAHealthCentral, we try to be understanding of everyone's perspective, as well as aware of the fact that we are all different. RA expresses itself differently and although I responded exceptionally well to Biologics, others don't. I believe that it's an indication that RA is a very complex disease that is probably a number of sub-diseases. If you look at breast cancer, for example, there are a number of different kinds of that disease and they are treated with different kinds of chemotherapy. I'm beginning to think that RA is the same. Some cases may be related to food allergies, others may not. Some respond really well to Enbrel (for instance), others don't. Some people can be really helped by changes in diet, others can't.

At the bottom of it all, though, the prevailing research shows that the best and most reliable solution for achieving remission is the medications, which gets back to your first reply to my comment. There hasn't been much research into diet changes — the cynical part of me thinks this might be because it can't be monetized — but the research there has been doesn't show anything conclusive. On the other hand, a lot of other research shows conclusively that the medications do help. The idea of suppressing your immune system can be scary at first, but keep in mind that those of us who live with RA don't get our immune system suppressed the same way someone who gets chemotherapy or antirejection drugs from organ transplants do. For most people, it means at most a slight increase in the risk of getting a cold or sinus infections. There are rare cases where someone gets sideswiped by a more serious reaction due to being immunosuppressed, but it is far from the norm. It's important to remember that perfectly healthy people also occasionally get very sick — for instance, several years ago, a friend of mine came very close to dying from pneumonia. You have to ask yourself (and your doctor) questions about the risk. Most of the time, the risk may be less than the risk of being in a car accident and most of us get into a car every day without thinking about it! Is so easy to freak out when you have RA — it makes you feel very out-of-control and threatened It's important to take some deep breaths and approach it rationally.

In terms of which tests you may have in order to find out whether your in remission or have low disease activity, is best to talk to your rheumatologist about that. imaging tests may be a good option — I assume you had x-rays before so you have something to compare against? Be aware that an MRI is much more accurate than x-rays and can in fact show damage of six months before x-rays do. On the other hand, it may be that your disease activity is so low that it's acceptable. Not all of us can get into remission from the medications and low disease activity is considered an acceptable goal. if you can maintain that with your current regimen, you may be fine. You may also want to consider adding one of the milder DMARDs, such as Plaquenil, which is not an immunosuppressant and is often used for mild cases of RA.

I think my primary point was twofold. One, that you continue to be under the care of a rheumatologist to make sure that you get ahead of the disease, if needed. Two, make sure that you know the pros and cons of any treatment regimen you use. Just as you need to assess the pros and cons of taking medication, do the same with diet changes and alternative treatments.

Thanks again for coming by and sharing your story with our community. I hope you'll stick around!

Janis

4/ 8/13 3:29pm

Hello, my family and I left for a Spring Break trip, so haven't had time to get back to RA Central.com. I really didn't mean to send the message to anyone for him or her to get off his or her current RA medications. I am not a doctor and would never want to imply that any RA medications be discontinued without a doctors consult. I have battled this disease for 12 years and have found relief through diet. This diet change happened only out of desperation. The pain I suffered this summer was unbearable and I wanted to try an alternative method of relieving the pain other than drugs. When I was on Remicade for seven years, I was completely RA symptom free, but I had a terrible time fighting off diseases like: an infection that kept me in the hospital for 6 days, pneumonia, chronic fatigue and chronic strep throat, as well as several severe bouts with the flu. These adverse medical occurances happened over a 7-year time period. But, with a history of melonoma (17 years ago), I started to think; if my immune system were so supressed due to Remicade treatments, how would I fight cancer if it ever returns? So my decision was to go on a strict diet to heal my leaky gut and therefore relieve my RA symptoms. This may seem too alternative, but I felt like that was my only option. (Google "leaky gut and RA", you'll find there's research pointing to a strong connection between the two). The research on diet and RA is limited. The reason being: who is going to pay for the research and secondly, it’s easier to monitor and track medicine intake = results as opposed to diet = results. In my case, I've had to illuminate; gluten, dairy, eggs, sugar, avocados and processed foods. I have had to find a new relationship with food. Pretty much nutritional only...and that's hard! It is such a battle for me to stick to this diet. My options are limited due to my medical past and adverse effects of RA meds. An earlier post on this site requested information regarding “shooting pain for no reason”. Shooting pain happens to me after eating certain foods. It is usually hidden allergens in food that I don’t know about. Sometimes I just give in to a temptation. Eating the foods that are tested to be incompatible with my body system show up within a few hours like a knife in my joints and/or swollen joints. Eating out is pretty much out of the question (gluten and dairy find their way into almost anything I order). Planning family meals is a challenge as well. I had 19 people over for Easter Dinner and couldn’t eat anything I made for the meal! Oh well, this is the path that works for me, so I’m going to try to stick to it every day. Btw, I did sneak a few Reece’s peanut butter cups after Easter and experienced sharp pains in my shoulder and swollen feet within 2 hours of gulping down 6 mini- Reece’s. I love food, so I do slip now and then…and pay the price. Staying true to the diet for me results in virtually no pain. I am able to attend regular Cross Fit classes, hike, work part time and be an active mother of a 12 and 14 year old. Diet may not work for everyone in controlling RA symptoms, but it couldn’t hurt to try. It took 4-5 months for me to feel symptom free, so you must give the diet the time it needs to heal the intestines. Much information is available on the Internet regarding the suspected link between diet, leaky gut syndrome and RA. Please stay on medications and consult your RA doctor about food allergies. My Harvard trained RA doctor didn’t agree with me on the relationship between diet and RA stating there is a lack of accurate research. Diet and food allergens aren’t easy to diagnose, research or track. In my case, the diet approach to controlling symptoms is working for me, so I felt compelled to share my story. You may find that adding diet to your current medical treatment may be beneficial.

Janis

3/21/13 4:04pm

1. A person eats food in which he/she is allergic to

2. This food causes small explosions in the intestines

3. The explosions cause small holes or "leaky gut"

4. Molecules and bacteria seep through holes from the intestine and into the body

5. These molecules settle in joints or organs

6. The Immune System attacks the molecules along with the surrounding joint tissue (RA) or organ tissue (Lupus)

7. THE IMMUNE SYSTEM ATTACKING THE CELLS IN YOUR JOINTS IS RHEUMATIOD ARTHRITIS. LEAKY GUT IS THE CAUSE OF RA AND OTHER AUTOIMMUNE DISEASES. TO FIX THE PROBLEM, DON'T EAT FOODS YOU'RE ALLERGIC TO!

8. A Functional Medicine Doctor will test you for food alleries. Make an appointment. Google a Functional Medicine Doctor in your area.

Next Rheum visit.

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