Fired By My Rheumie!

Hi, yes, thing can not show up..Celebrex is awesome..It's to bad Kaiser doesn't feel that way.What a difference it made when i could have it

I started taking Celebrex after ibuprofen wrecked my stomach.  Maybe Kaiser would support your taking it if your doc can justify it because you can't take the OTC or less expensive meds.

P.S.  Even Celebrex eventually bothered my stomach.  I went from Celebrex, to Bextra, to Mobic, to reduced dose Mobic, then back to Celebrex when my stomach turned into a volcano, and then finally gave up Celebrex.  amazingly I am surviving.  Green tea is helping A LOT!!

Hi, i had to pay for Celebrex out of pocket.I was at 400 mg per day.. And, it cost about $300. each month. Life was pretty good and i had less pain, ect.But, Kaiser feels Celebrex is a heart attach waiting to happen..So, they won't use it

Hi Sandra,

  My name is Kim and I was diagnosed September 2009 with RA.   I have been on Methotrexate and Mobic, but am still in constant pain, have inflammation (even though my inflammation blood test markers were normal) and it is effecting more joints.  I quit all dairy products a month ago and have limited meat consumption.  I also take MSM, vitamin E, Myristin, multi-vits, Vitamin C, fish oil, cal/mag/zinc, B-complex, Zyflamend  (recommended by Dr. Weil), milk thistle, boswellia, and folic acid.

Would you please elaborate as to the diet you implemented?   I have been researching and am planning to try the Rave diet.   (no meat, no dairy, no eggs)

  I am interested in learning about the aloe juice and how much to drink/day.

  There is so much to sift through.   I am still hunting for something to reduce the inflammation.   Ginger, capsaicin, lyprinol, and the list goes on and on, are supposed to help.  I know everyone is different, but there should be some common denominators as to what helps.   

  Thanks for your input!

kim and sandra,

it sounds like i could have written either of your responses.  i was diagnosed in '93 and on meds for 13 years.  my grandmother, who had RA, died from gangrene of the stomach due to her meds.  i needed to make some changes.  in '06, i got very serious about researching RA and finding my own cure, cus the docs just kept wanting to give me more meds.  

i am now on a regiment of supplements.  i keep active.  i read some stuff from Dr. Joel Fuhrman and decided to avoid animal protein (meat, cheese, milk, eggs).  i also take Wobenzymes everyday which work wonderfully.  

i have also been off my Rx since then, i weaned myself off when i started the new regime.  i still have occasional pain and handle it with simple advil.  my blood work still shows a high Rh factor (144, it should be under 14), but a very low sediment rate (3, it should be under 20), which tells us i still have RA but am managing it by keeping the sed rate low.

it works for me, and sounds like it works for others too  :)

trinity 

Hi Trinity! Please read the rather lengthly post I made on the site. Thanks, Sandra

Hi Trinity,

   Glad to hear you found what works for you!   I am in the beginning of my quest for the same.    I just ordered Dr. Fuhrman's Eat for Health and Eat to Live books.    I need to find recipes now that I need to eat differently.   I also plan to do a juice fast first.   

I feel my system needs to detoxify after being on the methotrexate.    I was due to take my weekly dose last Saturday, but didn't.  It looks like it takes quite awhile to get it out of your system, but I'm hoping the cleansing fast will help.  

  I also ordered the Tai Chi for arthritis DVD.   I've heard a number of people benefit from that.  

  I think we can all learn more from each other than from the doctors who have never felt our pain.   I used to enjoy red wine with dinner, and to my surprise, my rheumatologist told me it was fine to drink wine with methotrexate.    Not so.  We really do have to think and research for ourselves.  

  Thanks for posting and for sharing your success!

Kim  

hi kim,

sounds like you are making many positive moves.  rock on sister  :)

furhman also has a fasting book which i have also read.  

unfortunately, a few years back, i was drinking a couple of glasses of red wine in the evening to help with the pain (which it did).  but the 2 glasses turned into the whole bottle every night.  it took alot of hard work, but i definitely needed to get that habit out of my life - which i did  successful  :)      sigh, the things we do to numb our pain

trinity

Hi Trinity and anyone else who is interested,

  I found a great site that walks you through the juice fasting process, has tons of links with a lot of valuable info.   Even a link about blood types and diets you should be on.   It's amazing how much sense it all makes to me.  The site is well worth taking the time to navigate all around it.    

   The site is:  www.naturalhealthtechniques.com/healingtechniques/juice_fasting.htm

There are recipes also.  I am going to buy a juicer and get going on this.

  I hope this helps some of you!

Kim 

Hi All!

This is actually a reply to: Kim, Trinity, Jene, KnottyKnuckles & Frances.

Please don't take offense to my answering all of you here as my time is not allowing me to do each individually.

First off, My heart goes out to all of you. I spent most of yesterday  trying to locate a report read on the radio by Dr. Dean Edell I heard several years ago. The report was about a 10 year study on arthritis done by a university on 500 participents. This group had to undergo weekly, bi-weekly and monthly exams, blood tests, exrays, etc.. The group of 500 was divided into two groups. 250 participents could stay on all their meds including asprin & ibuprofen and had no diet or exercise program to follow. The other 250 participents could take no meds or asprin & ibuprofen and could only use diet, exercise and supplementation and were montiored very carefully if they became sick as to what meds they could take. After 10 years, the group of 250 that stayed on their meds with no restrictions had ALL progressed worse with their desease. The other group of 250 had amazing results. Not only had ALL of them improved, but almost 98% of them showed no signs of the arthritis desease and most all had rheumatoid arthritis! These results caused the researchers to examine the most common meds taken by the 250 that had all progressed worse with their arthritis in spite of the latest meds. They examined asprin & ibuprofen as the most common over the counter drug of choise for combating pain and inflamation. They isolated a common ingredient in both asprin & ibuprofen that they discovered completely blocked the body's ability to regenerate connictive tissue. Interestinng, since rheunatoid arthritis strikes connective tissue!

When I heard this program on the radio, as I was driving in my car and saying "Yes, Yes, Yes!", because I couldn't take either asprin or ibuprofen and had similar results over a 10 year period as the 250 group who had only used diet, exercise and supplementation! So, I could definitely relate to what I had just heard! Now I wish I had taken action then to get a copy of that report so I could pass it on to anyone who was as interested in it as myself. I'm going to keep diging for it, so wish me luck as I am figuring information like that is ment to be kept from us by the pharmaceutical companies.

Now, I have to say that I am no doctor or specialist. So I can not advise that you change whatever you are doing medically or with your personal routines. Each of us are different. But we are all humans and have bodies that work like a glorified chemical factories. With that said, you have to come to grips with the workings of your own body. I had to ask myself, what do I need to do to make myself work properly? As humans, we were ment to consume almost everything non poisonous in order to get the nutrients we need to run our chemical factory properly. Digestion plays an important part here. So does absorption. I take digestive enzymes with every meal, because I know I don't digest properly. I also avoid glutin because for some of us it causes inflammation and other problems. This is very hard considering I am of Italian descent and not being able to have my pizza or pasta can be worse than a bad case of PMS. But I descovered that glutin not only causes inflammation for me, but also gives me the trotts, so it is just not worth the pain of it all. So I found a glutin digesting enzyme and occassionally, when I just have to have that pasta or pizza, I take it. I may still have some stiffness and a bit of the trotts, even after using the enzyme, but not as bad as not using it. I also take an enzyme that helps with absorption. Does it really help? Not sure, but why take the chance.

I avoid herbal supplements that boost the immune system like Astragalus. Research immune boosting herbs to know what to avoid. I ran this idea by my holistic Dr and he took it up with other holistic dr.s in a study group he attends. They concluded I was correct in those types of supplements adversely effecting rheumatoid arthritis.

Aloevera. Great stuff and a story here. My parents lived in Clearwater Florida and I was visiting them. Their church took in refugees from Vietnam, so you know this goes back awhile. My parents helped a Viet. family move into their neighborhood. There were 3 adult females and a bunch of children. One of the adult females was a very elderly woman who freeked when she saw my mother's deformities from rheumatoid athritis. The old woman ran outside and came back in with a broad leaf from an aloe plant growing outside, ran to the kitchen and chopped off a chunk with a knife from the counter, grabbed a small drinking glass, squeezed the aloe into the glass, added a bit of water and then came back and stuck the glass into my mother's face while chattering up a storm. One of the other women said she was telling my mom to "drink this lots and all this go away!" The old woman was very serious and genuine. My mother took a sip and curled her face and said it was nasty tasting, so she would not finish it. I realized how sincere the old woman was and already knew a bit about aloe. Aloevera has anti-inflammatory properties and can heal from the inside out when taken internally. That was worth a try for me, because, remember, I did not want to follow in my mother's footsteps. For 4 years I took HerbalLife's aloe vera juice, consumming over 1 gal per wk.. Then, due to costs, I switched to using the gal. of aloe vera juice from Sam's Club and now WalMart. I still use it to this day.

Calcium. Be careful of what kind you are taking. Stay away from calcium carbonate. Calcium carbonate is what's in Tums, the anti-acid. It neutralizes stomach acid and is never broken down to a molecular size our bodies can use besides screwing up your digestion. Take a look at all the calcium supplements that use calciun carbonate. It's amazing! But it is also public stupidity about it. One figures if it is being sold, it must be OK. Not. Calcium citrate is what you need to be using as it can be broken down and our bodies can absorb it. Look for a calcium citratate supplement with magnesiun +D in a capsule form with 2:1 ratio of calcium to magnesium. Take at least 3 grams per day. You can take more if you like as calcium is also a natural pain reliever besides helping to rebuild our bones. I used to have a 1-2 cans of coke per day habit for many years. I had a bone density test done at age 55 and discovered I had the bone density better than most pre-teens. Says a lot about the kind of and amount of calcium I took. I no longer drink coke or carbonated products as most not only contain corn syrup but the real culprit is the phosphoric acid. In order for your body to get rid of the phosphoric acid, it pulls calcium from your bones to neutralize it. Need I say more!

Foods. I don't cut out foods like eggs, dairy or meats. I am lactose intollerent, so I don't drink milk. But I do eat cheese (cottage & hard) and yogurt. For these I use a lactose digesting enzyme. I do drink soy milk and have no problems with it. I eat a lot of fresh fruits and veggies, but no potatoes or potato products. I do have an occassional sweet potato, but I do not combine meats with anything starchy like the sweet potato. You have to understand the digestive acids of your stomach which goes between acid to alkaline depending on what has to be digested, but it can't be both alkaline and acid at the same time. Meat and non starchy vegies go fine together. If you do eat bread or potatoes, just don't with meat or eggs as one or the other won't get digested properly. I also eat a lot of nuts and seeds, raw or roasted as I like nuts, but never combine them with meats. I put nuts and seeds on my salads, which I eat a lot of weekly. Friends tease me that I eat like a guru. But, I don't have a weight problem like they do. I'm the same weight I was when I was 15 years old and I'm not ashamed to say I am 5'2" tall and 120lbs at 61 years of age. I also stay away from any products containing corn syrup or any name they give it. Yes, I am an avid label reader! Especially watch what you are drinking as corn syrup or high fruitose corn syrup is added to many drinks. I make my own drinks with lemon juice & stevia.

Supplements. I take a lot, really. I am a vitamine junkie. I have played around with and studied supplements for over 35 years and have found what works for me. I have a whole library of books on herbs and supplements, diet and nutrition. What specifically works for me may not be the best for you. It is not an easy road to read or study up on all of what I have over the years and it can get quite expensive. I have read everything I could on anti-inflammatory supplements and herbs and have chosen to use many of them and still do. The list of what I take is unbelievable to most, so I really can't recommend doing exactly what I do. Look at it this way, you have a condition that won't be solved with a quick fix prescription or pill as they lead you to believe. You have to make life changes and commit to sitcking with it for the rest of your life. It is your body! Doctors don't know your body. They know about peoples bodies, not just yours specifically. Doctors are good for some things, but not all things. I believe in the bodies ability to heal itself. Doctors hate me. I don't take any synthetic drugs. If the doctors meds were so great, then why isn't everyone well? Why should drugs have adverse side effects and may help with one problem while giving a whole bunch of other problems? I couldn't deal with the problems the drugs caused, so I didn't use them and the doctor told me not to return. I watched my mother suffer after each new drug without ever getting a bit better and then die from complications due to the drugs. That is just not for me,...period.

Whatever you do, do it for yourself and realize it will take time to undo any damage that has happened to your system. All healing takes time and if you plan on living past this moment, then you have the time. So be patient. I've worked on myself for over 30 years. Even if you took everything I do, you can't expect to be where I am after only a few months or years. Remember, I said it took me 10 years to get rid of the deformities (which, by the way, seemed to crop up within days!) and inflamation and then no longer test positive for the RH factor. It is always your choise as to what you do and you have to take personal responsability for yourself.

I have gone on way to long and I apologize. Hopefully I will get a blog going soon and we can continue this topic more.

Til then,...just Keep Smiling and get better! You are all in my thoughts and prayers. Thank You 

Thank you.

Hi Frances!

I posted some more of what I take.

Enjoy & Keep Smiling!

Sandra

hi gang,

i really am enjoying this particular threat.  too often i have heard from doctors that diet, supplements and exercise don't work for RA - only drugs.  i'm tired of it all.  i knew the time had come for me to stop looking to them to cure me and find the answers i needed myself.  what a great move on my behalf.

sandra, i don't follow this website really closely, would you mind, if you ever find that report that dr. edell spoke of, to email me a copy - 38.trinity@gmail.com.  i would love to read it.

namaste,

trinity  :)

Hi Trinity!

Thanks for your email address. I'll put it in my email address book.

I posted another post and gave my Facebook name there. Look me up and lets keep in touch,...OK!

Keep Smiling!

Sandra

Hi Sandra! 

  THANK YOU so very much for sharing such valuable information!    You have much to offer and I am extremely thankful to be able to tap into your knowledge.  

  I used to listen to Dr. Dean Edell.   That study is remarkable and I agree with you, the pharmaceutical companies love to "bury" information like that.  I searched a little to find that study, but haven't found it yet.   There is a number for his show at KGO in San Francisco

(800) 548-8255 that I will call to see if they can help us find it. 

  I have a long list of herbals/vits that I take also, but didn't list them all originally.   I wondered about the astragalus and am glad to know.   I found it very helpful to ward of illnesses.    I am beginning the process of finding what will work for me.  It definitely makes no sense to me to put toxins in my body to combat this and I want to go the natural route because I know our bodies were made to heal themselves with the proper nutrients.   Our nation is becoming a toxic mess and the pharmaceutical companies are vultures and part of the cause.  

I loved what Dr. Weil said in a recent interview with Larry King.   He said the medical care in this country really started taking a turn for the worst when it became known as the "health industry" and became a business more than health care.   I know it's not all doctors, but far too many of them care most about their bottom line financially.   We all know where their training comes from:  pharmaceutical companies.    And he also brought out that pharmaceutical companies should not have the right to advertise their drugs on television.   It's merely a sales pitch.    (My husband says MD stands for more drugs and says they're drug pushers!)  Don't get me wrong, I do know there are instances where physicians and surgeons are valuable, ethical, and necessary.  

Diseases are becoming more prevelant in countries where they were almost unheard of before our Western fast food restaurants came to their countries. 

  The Vitamin Shoppe in our area is offering a free package of Garden of Life Vitamin Coded Grow Bone.   I have been looking at that and it has raw calcium in it.   I plan on giving it a try along with other things.   I remember years ago reading about the calcium citrate and  was taking it.   I eventually switched vitamins and am normally an avid label reader also, but made a mistake because the vits I now take do have calcium carbonate in them.    I won't take them any more!   I am going to buy aloe vera juice today among other things.  

  I do have some more questions.   Which enzymes have you found to be the best?   Do you take probiotics also, or do the enzymes stimulate your system to make probiotics? 

  I am also considering Lyprinol (green mullosk extract from New Zealand) that is being touted as a powerful anti-inflammatory.   I have also read that cayenne pepper pills are good as well as capsaicin and ginger.    People think the cayenne and capsaicin are hard on the intestines, but I've read they actually are used to treat ulcers, not cause them, and aid in digestion, and are anti-inflammatories.   I also read cherry juice and nettles are anti-inflammatories.  I'd love to know what you have uncovered as far as anti-inflammatories go.   I am not taking any more prescriptions as of today, or over the counter drugs.    That's my personal decision.

I was initially so scared and desperate that against my better judgement, I agreed to give drugs a try, but they are not helping at all.   By the way, I am a 13-year breast cancer survivor, and I took no drugs for that!  I completely agree with you, we know our own bodies better than anyone else. 

  One thing that struck me as a red flag, was when I met with my rheumatologist I asked her right away about natural remedies.   She told me she had a patient she referred to as a "Boulder head" who decided to go the all natural route.   She hadn't seen her until 5 years later and she was in a wheelchair.   I felt that she used that as a scare tactic, but I have no way of knowing for certain.   Could be the woman used the wrong things, and refused to keep moving, or could be total fiction.  Regardless, I hear of far too many people who get little or no results from the meds and continue a life of switching, adding, mixing various meds.   Can't be good. 

  She also told me that the people who do the best are the patients who are very involved in their own treatment.   hmmm.......did she let something out of the bag?

  I called my rheumy's office early on to ask if I could take MSM along with the meds, and was told I could, but they seriosly doubted it would help me.  Maybe they were right to a point, because the toxic meds work against natural things. 

  You have inspired me and given me renewed hope.   I am so glad you are doing so well and I hope to keep in touch with you. 

I will share with everyone I can what my experiences are as well.   I know it will be a journey.  We all know too well that this is a disease that can't be fully understood by those who have been fortunate not to have it.   I know I never realized how painful and debilitating it is.  

  I am praying for everyone on this site too!  Don't give up, and listen to your bodies. 

Kim

Hi Kim!

Loved your post & thanks for all the great information!

Yes, I do take probiotics daily and use Vitamine Shoppe's Ultimate'10'Probiotic

The enzymes I take are all from Swanson Health Products and they are: n.zimes, n.zimes Dairy, Digestitol, BioCor DPPIV Gluten-Peptide-Digesting Enzymes and Digestive Enzymes (this one contains Ox Bile Extract which helps digest the fish oil, mainly cod liver oil, so it doesn't burp back on me). Not sure if these enzymes help my system make probiotics or not. I take all these because I know my digestion is poor. I had a "dark field" blood test done in 2000 and it showed I had a bad case of "leakie gut syndrome". That's where to large of food particles get into the blood stream caused by holes in the intestional track and cause alergic type reactions. Got that wonderful problem from being on anti-biotics for almost 4 years due to a medical mis-diagnosis in 1973. Dr.s thought I had an inflammed ovary and it turned out I survived a ruptured appendex! The anti-biotics gave me a prolonged yeast infection that bored holes in my intestines that allow to large food particles to get into my blood stream. If I forget to take enzymes, when I eat anything, I start sneezing like crazy because my over reavtive immune system attacks the large food particles in my blood the same as having an alergic reaction. When I think of all the years I suffered with what was thought to be allergies, it's scarrie! Thank goodness for enzymes!!!

I know nothing about Lyprinol (green mullosk extract from New Zealand), but all the fish oils are anti-inflammatory and I use a lot of fish oils.

I also use cayenne and nettles. Nettles I've useed for many years before I learned of the leakie gut because it works well for allergies, so I still take it. I also use ginger in tea & capsule form besides in cooking. Like I said, I take many supplements that all have anti-inflammatory benifits.

Congrats on beating brest cancer. Turmeric is not only good for inflammation, but also, I believe, has anti-tumor benifits. So does banaba, which I also take.

MSM I use with glucosamine & choindroitin and also take extra MSN for headaches, which works very well. I also use the herb Dong Quai, which acts as a smooth muscle relaxer, but never weirds you out.

SAMe is another supplement I use. It is a bit pricey, but worth it. SAMe has been used in Europe for over 40 years to treat people with depression. What the European scientests discovered is it is not only good for depression, but it reverses Osteo arthritis and helps eliminate sleep deprivation. I've been taking it for 10 years now and I no longer have "gravel knees". When I first started taking it, I had been suffering from sleep deprivation for 4 years. After only 2 days, I slept all night. At first I thought it was just a flook, but I rarely have a sleepless night since I started taking it. And I only take 400mg, which is 1/3 the normal dose. I have a very sensitive ststem and have to take a child's dose of medications. My husband comes from almost 30 yrs in the medical profession as a ER charge nurse. We have been together for almost 26 yrs and believe me when I say I drive him crazzy with how I treat myself with supplements. He is very medical profession and believes in drugs. Yet, he can't dispute the results I've had over the years. He takes Life Extension supplements, which are very expensive because they are pharmaceutical grade plus you have to be a member to purchase them. The SAMe I now take is from Life Extension and before I used to purchase it from Costco or Sams Club. If you decide to try SAMe, make sure it comes in a blister pack as loose tablets oxidize and are not as good. Try Naturade brand.

I'm glad I have inspired you. You too have given me a boost as most of my family & friends & hubby too think I an nut case. My grandchildren all call me "Grannie" because my daughters think I take after Grannie Clampit of the Beverly Hillbillies! I don't mind and even enjoy being called Grannie. I tell them it is because"I rule"! Say, look me up on Facebook as "grannie14" and lets keep in touch,...OK!
Take care & Keep Smiling!
Sandra

sandra, 

i can't find you on facebook under grannie14.  you can search for mine by my email address i gave you.

trinity

Hi Sandra,

  Sorry I haven't kept in touch.   I have been working, and just had a setback.

I'm hoping it's because I made the mistake of eating 3 frozen coconut bars.   I just looked closer at the label and they have skim milk and cream in them.    I went dairy free 9/11 until the mistake and today I have been in the worst pain of all.

   I don't do facebook, but would love to correspond via email or phone sometimes if you would like to also.    Please let me know and we can exchange info.   I will also keep posting things I learn here for anyone who is interested.

  Have a blessed day.

  Kim 

Hi Kim! Please read the rather lengthly post I made on the site. Thanks, Sandra

I live in California and am experimenting with medical marijuana.  I smoke it before I go to bed and it seems to help with my morning stiffness.  Also, some studies suggest it slows down the progression of the disease.

I've been reading up on the side effects of RA medications and really don't want to go down that road.  I'm single with a demanding job, and I can't imagine gaining weight, losing hair, and spending my weekends sick in bed.

Wow.

I was diagnosed in April 2009 and so far have taken nothing RX other than diclofenac (75mg ext-release) originally and now Mobic (1 at night- ??mg). 

My first rheum. prescribed the diclofenac and Plaquenil.  I picked up the rx and asked the pharmacist about the meds. She explained a little and told me to talk to my dr more before I started taking them.  I called the rheum.'s office and was told to "just take the med. like she said and she'll answer your questions the next time you come in" which wasn't until a month later.  I switched drs.  My new one is a lot better.  He explains everything and though I'm not ready to do Methotrexate like he suggests, so far he's still working with me.

My plan right now consists of going to a chiropractor, taking supplements, going gluten free and limiting my red meat and dairy.

Initially I was going to the chiro. three times a week...now I go once every two-three weeks unless something is really bothering me.  Thank goodness we have good insurance that covers chiropractic.

Giving up gluten is by far the hardest....it's everywhere....but it has made a difference-in swelling and pain.   I think it's been about 5wks since I started?  I can tell within a day or two if I've eaten something I shouldn't have.

The supplements I'm taking are MMS (detox drops), Natur Leaf, Silica, and a cheap otc multi-vitamin. 

I have felt SOO much better, I can hardly believe it.  It wasn't instant but it is helping.

I live in a third floor apt and there were days when I couldn't make it up/down the stairs without sobbing...and many, many nights when every time I tried to move in my sleep it was excruciating. 

If you have an questions about what I'm taking please feel free to contact me.  I hope you're feeling better and find a rheum. that isn't a jerk!

Hi Jene! Please read the rather lengthly post i made above. Thanks, Sandra

Oh, PLEASE, PLEASE help me.  My RA was brought on by Lyme disease over 4 yrs ago.  It didn't come on slowly.  It was like "wham bam thank you mam" quick.  All joints.  My Rhuemie has tried every Rx on the market.  They either didn't do anything for me or if they did help then I had severe side effects.  I am now literally " at the end of my rope"  PLEASE help me.  I also have fibromyalgis, osteoarthrtis in my knees and shoulders, TMJ, an extremely bad back and severe depression.  What did you take and eat to get your magnificent results?

I do take Enbrel, but there's some OA and FM still and green tea helps that (for me anyway).  Also not eating much meat - BEEF is ESPECIALLY BAD, in fact all red meat is a "red flag" for arthritis.  I also take 200 mg x 2 guaifenesin tablets/day (it's like mucinex but generic, as a prescription from my doc that I asked for, and it helped me a lot when he just thought I had FM and not RA.  I've continued to take it because it helps.

You might try keeping a food diary - but it's tricky because the effects don't always occur immediately.  Look up "elimination diet" to try and find out yourself what affects you the worst.   Try and eat as healthy (fruits, veggies) as you can.  One caution, some people's bodies are very sensitive to a) dairy b) the family of vegetables that includes potatoes, tomatoes, green peppers and eggplant. 

Do you have other health conditions, like IBS, reflux, or anything like that?  SOmetimes all of this stuff is related - if your digestion is not working well, your body isn't getting the nourishment it needs.  Probiotics (acidophilus and other "friendly bacteria") can help.  If this kind of thing is new to you try and find out some general info on nutrition.  I'm not always the best eater, but I've found that what I do eat DOES make a difference in the way I feel.  It doesn't clear up all the arthritis but it helps me deal with whatever pain or discomfort, or moods I have, MUCH better.  Don't expect a miracle overnight, but try a little change at a time. 

Hi Ellen!

I really enjoyed your post and the information you gave. Yes, I've done many of the things you are doing, except for the meds and I do eat red meats in moderation.  

Hope you read my last post as i'm sure you will understand.

Thanks

Sandra

Hi Sandra,

I know I need to do more ... I found your comment about the diabetes connection interesting, as it's now pretty clear that there's an immune connection there as well (but it may be triggered by a virus at least in young boys...?)   I have 3 cousins, daughters of my aunt who had RA (along with my grandmother).  One of the cousins has RA, the other two now have adult onset diabetes - they both do drink, one reasonably, the other probalby too much, but still ...   I have a cousin from another uncle (same family) who now has diabetes with NO particular risk factor.  All descended from the same grandmother with RA. 

     Maybe related: people taking guai often have to start watching their sugar consumption, they can become more sensitive. 

     Why does guaifenesin work?  There's a very interesting article by Mark London on possible reasons that guaifenesin works.  (The people on the website having been trying to prove it's an overabundance of phosphates (ADP-ATP metabolism) and that the guai gets the extra phosphates out of the body - unless there's too much salicylates in teh system.  They have not yet been able to prove it, but aspirin also blocks the action of gout medicine and they theorize it's similar. )  Also interesting is that guaifenesin is a mild skeletal muscle relaxer and in one form is used in vet surgery.  It's short-acting.  Some people connected to the guai site take as much as a gram or two a day.  Anyway, thought you might be interested -

     You've given me some motivation to further pursue some herbal treatment.  I've been on Enbrel for almost 5 years, and some slight side effects are starting to concern me.  Plus I am going to need surgery on my hand& wrist even as to what has happened so far.  Can the deformities actually reverse?  That would be amazing. 

     I've heard that turmeric is a good anti-inflammatory - I've been meaning to get some capsules to try.  In fact, a lot of spices are!  Interesting ... so I need to get some and try it. one problem for me, though, is that my stomach seems to overreact to almost anything.  I've had a lot of gastritis.   Guai at larger doses irritates that (in fact, it's not recommended on an empty stomach... can cause nausea.

Hi Ellen!

I made another post.

I also take guaifenesin at bedtime.

You might try ginger for your tummy and it is even better than any otc med for nausea. The digestive enzymes might help also.

My Facebook info is on the post. Lets keep in touch,...OK!

Take care & Keep Smiling!

Sandra

What form of ginger do you take?  (whole, capsule, powder, gingerale?)

Thanks -

Hi Ellen!

I take powder, capsule & fresh. No ginger ale. I either use fresh to make tea or I use a granular I get at the oriental grocery or oriental herbalist store which comes in packets.

See me on Facebook. My name is Sandra Goodell

Keep Smiling!

Sandra

What form of ginger do you take?  (whole, capsule, powder, gingerale?)

Thanks -

Hi KnottyKnuckles! Please read the rather lengthly post I made on the site. Thanks, Sandra

would you be kind enough to explain what supplements would stimulate the immune system and what your diet consists of?  Thank you.

Hi Frances! Please read the rather lengthly post I made on the site. Thanks, Sandra

would you be kind enough to explain what supplements would stimulate the immune system and what your diet consists of?  Thank you.

WOW, I can't believe that a rheumy would try to force you to take something you're allergic to!  And especially aspirin...

    Your story makes a lot of sense to me. I'm on Enbrel but also try and do as much as I can alternatively to keep myself well.  My rheumy pooh-poohs a lot of what I do but the fact is, he's not keeping up with even simple changes that can help, like green tea and avoiding red meat, green peppers, etc.  Those 3 things alone I feel the difference within hours if I don't follow it.  I also take guaifenesin - started when I was told I "only" had fibromyalgia (my GP was wrong, and felt bad later!)  But that was a blessing in disguise because I found out about the guaifenesin myself (see www.fibromyalgiatreatment.com for more info).  Interestingly enough, aspirin and natural salicylates in plants (if they're absorbed through the skin as in lotion/shampoo etc) can block the good effects of guaifenesin.

   Guai is the active ingredient in Robitussin.  It's the synthetic version of guaiacum, a tree resin, which traditionally was used for "rheumatism."   After I read about it on the web, I asked my doctor about it, and he said, it couldn't hurt.  The amount I take daily is about the same as one spoonful of cough syrup, but without all the sugar/goop.  The effect was amazing - my fatigue vanished overnight.  I had felt ready to crash halfway through Monday...   When I told my doc that, he tried it with some of his other FM patients, and he told me it worked about half the time.  (The website about guai says some people need to double it, and a very small number need even more).  I've kept taking it, because I notice more fatigue when I don't, still.  Mucinex and Humibid are the same thing, however, the brand name is a lot more expensive, it's very cheap in the generic version.

   So - hope this helps someone! 

To add to the guaifenesin story:  I have a wonderful shampoo I got on a cruise, much more expensive thatn anything I would normally buy (vacation splurge).  But it has a lot of plant oils & enzymes in it.  I can use it occasionally without a problem.  But if I forget (like I did this past August) and use it for a couple of weeks, I was in a LOT more pain!   One would think that with salicylate/aspirin type stuff absorbed through your skin, you would feel better - BUT - I think what happens is that, then you are ALWAYS getting the rebound effect of a painkiller WEARING OFF, and the nervous system gets oversensitized (hence, fibromyalgia).

    For more information on this fibro treatment(which I also think helps my RA somewhat), read "What Your Doctor Might Not Tell You About Fibromyalgia".

     For some VERY sensitive FM patients - they have to even avoid toothpaste with mint (menthol salicylate .... ever wonder why menthol makes your muscles feel better?  It's not just the smell....it's menthol salicylate being absorbed through the skin!).  I don't have to go that far, fortunately!

Sandra - Please let us know about your diet and supplements.  Sounds like you used your own version of "aggressive treatment" and it worked.  Congratulations.  I hate following rigid dietary restrictions and an not big on taking supplements, but your post makes me think it's worth looking at.  Hope you will share with us all.  Thanks.  

Hi Mary!

I shared in a rather lengthly post submitted this evening. Hope you get to read it and thanks for your input.

Keep Smiling!

Sandra

What diagnostic blood tests have you had? Why does the doc think you don't have any 'other' problem?  Tests for Ra can include anti-CCP antibody test and ANA test...

When you say your tests are normal, I'm guessing you mean that your sed rate/ESR is down near normal.   There can still be pain from osteoarthritis developing after the RA damage.  Do you show any signs of joint swelling or damage? 

I don't know she doesn't say but she won't consider it. Nothing has ever shown up apart from a high RF which reduced very rapidly and was never drastically high and variably high white cell count, crp, gobulins and other things i can't pronounce, what i mean by normal is all my wonky numbers are more are less in range now however i have no joint damage or signs of inflammation which is why i feel there may be something extra to be held accountable.

You may have fibromyalgia if you have pain without swelling and no joint damage, and the pain varies, and a lot of fatigue (or chronic fatigue, some people consider chronic fatigue & fibro 2 sides of the same coin, some don't.  You may want to research fibromyalgia to see if it sounds like you ... it can vary tremendously from person to person from an inconvenient annoyance to disabling.  When I was told I might have fibro, I found guaifenesin tablets helped my fatigue (200 mg x 2, but a lot of people start at 300 mg x 2, they break a Mucinex tablet in half.)  My doctor gave me a prescription for a lower amount as I requested because I seem to over react to everything - common for people with fibro!  Also, developed a couple allergies I never had before ... I couldn't seem to clear the gunk out of my throat, my sinuses bothered me, I was so tired that halfway through Monday, I didn't think I could make it the rest of the day.  I still take the guai along with my RA med.)

   There are no blood tests for fibro... yet, anyway!  It's done by clinical exam, to see if you have a certain number of what is called "tender points" - about 11 out of 18 possibilities gives a position diagnosis.

Thank you for your help, it's really kind of you, i got referred to a different rheumatologist today and fingers crossed we can figure this out. :) Hope you're well, thank you again x

Good luck!