everydayhealth.com/hs/rheum...
This is a very informative link to share and I believe it will help those who intend to go without medication to make good decisions. Honestly, I personally find that it is very dangerous to go without medication and I will not do that unless suggested by my rheumy.
It depends what one means by dangerous. Simply taking drugs can be dangerous. The 6th biggest killer in the USA is drugs, properly prescribed by doctors and properly taken by patients.
That's not to say taking drugs is to be avoided. I take MTX but as part of a plan to get healthy and reverse my RA. So that plan starts by arresting any bone damage from RA. Sadly my arthritic knee damage started 41 years ago so I am not going to ever have perfect knees. Back then gold injections were the thing, but that didn't work for me. So in the end I took NSIADs for 40 years, until RA went manic in my body just under two years ago. Sadly for me once I stepped up the NSAIDs I had previously relied on successfully, began to destroy my liver.
So my RA continued to get worse and the doctor would not help me with any powerful drugs. He stopped serious NSAIDs and would not start any DMARDs until my liver was fully recovered. I was not in the best of health and to say I was in pain is a complete understatement. But then many people here know what that pain feels like. To help me I had another steroid injection to keep me going.
Without drugs I asked myself can I, and if so how can I get my liver healthy. The Internet came back loud and clear - avocados. So, after taking lots of them my liver did get better. I had a steroid injection to keep me going and then about easter 2016 I was then able to start MTX.
But that wave of avocados taught me two things. It taught me there is information out there on the Internet that could possibly benefit me. It also taught me that foods might positively help me. I suspected that some foods did me harm. But I had no way to determine which ones. So I gut out gluten, coffee overnight. (I had been a big coffee drinker, a litre a day.) I started juicing... But I was sailing without any rudder. I knew I was onto an idea, but I had no idea how to turn that idea into practice. Also I had no idea how much help any changes might be. So all I hoped for was to get the pain under control.
That easter I found the Paddison Program, and realised this was a possible solution. I was already a vegetarian so going vegan should not be too difficult for me. Add to that a technique to work out foods that are good and others that are bad for my body.
Well it delivered. Now, just shy of a year later I am almost in full remission. I am in, what I call a healing groove. That is every day my body is becoming healthier. Yes, I still take the 12.5mg of MTX. And yes I have worked out, using the Paddison Program exactly what foods will harm my body, which are safe and which ones actually promote very good health including beating my RA into submission.
If I look at my blood test results for CRP, my worst reading was over 170 and my latest is around 20. Yes, the MTX helped bring it under control but the MTX did not stop flares. Changing my diet helped further to bring the RA under control and also it addressed the flares.
Once health begins to recover then the other 40% of the paddison program kicked in - exercise. Last October I realised I was in sufficient health (ie out of my wheelchair) to start bikram yoga. My first visit was very difficult to get to. Walking from car to door was not easy. But I made that first session. And the second and almost every weekday ever since.
I saw my rheumy yesterday for my 6-monthly appointment. At my previous meeting I was slated to see the surgeon to have both knees replaced. He said quite clearly he now wishes all his patients were like me.
Thanks to my "tuned" whole-food plant based diet (ie no oils, no nightshade plants) I am steadily losing a kilo a month of weight and my BMI is normal for the first time in my life. Apart from the RA, my body is incredibly healthy - or at least that's what everyone tells me.
I am still taking MTX. When my CRP has dropped to normal then I am coming off it entirely.
That's my plan. My plan evolved and it still evolves as I look for further ways to protect my body from RA.
So yes, use drugs, but use them wisely. And remember drugs for RA do not treat the underlying symptoms. They may stop joint damage and may bring RA under control but there are no guarantees, which is why doctors try different drugs and drug mixes. I was very lucky just being on MTX, which does not destroy the gut. Other DMARDs & biologics do and some are more addictive than cocaine! On the other hand changing diet works for people who are motivated and very determined.
Hi andyswarbs,
I am very sorry to know that you had RA since that many years ago and suffer for such a long time. However, I am glad that you finally do find something that improve your situation.
My CRP was 177.6 and ESR was 98 for my first blood test in 11 Jul 2014. My CRP and ESR were 1.1 and 3 respectively in 18 Oct 2016. I was/am not in any diet plan though I did cut off diary products for 2 years since I was diagnosed of RA. I slowly put them back one at a time now. I am glad that I am okay with MTX and in remission after 1 1/2 years treatment.
Joint damaged is irreversible for RA. I do not believe RA can be reversed but i do believe that diet will help to keep us healthy and maintain our remission stage. Do keep to what you eat and what you do if your condition has greatly improved because of that. My rheumy always told me to do what I do and to eat what I eat to maintain my remission.
I do take chia seeds and black sesame seeds every morning with cereal. I believe that keep me very healthy too. I also do yoga every morning to ensure my joints are flexible.
Is RA reversible? Let's start with the big one, Joint damage? Of course badly damaged joints are unlikely to heal fully. But joints are not made of either steel or concrete. They are made of bone. Why is comfrey root also called knitbone since time eternal?
Many people with RA have knee problems. That probably starts with cartilage damage. I believe cartilage repair is possible. It takes time, it takes good quality blood to be injected into the joint on a daily basis - via good cardio-vascular exercise, and I cannot recommend Bikram yoga highly enough. Anyone, even those who just rely on drugs know that sinovial fluid repair is possible, otherwise they would still be in pain!
My right elbow has an almost 90 degree bend. If I ever get it straight you can be sure to see a picture. But then it has been bent for 40 years, so my hopes are not high.
I know of many people who have moved to a whole-food plant based diet and found that joint deformities have reduced and even gone entirely.
And then let us look at the matter of drugs. Certainly with only drugs RA is not reversible. Drugs treat the symptoms, ie pain, inflammation and can halt bone damage. But they do nothing to change the course of the RA.
Sadly all drugs have side-effects and so long term treatment with drugs is likely to lead to more drugs to compensate for some of those side -effects. One common one is the issue of osteoporosis.
I know of people who have come off drugs entirely, using a whole food plant based diet. Clint Paddison is of course a shining example. My CRP is dropping and once it reaches normal I will join that club.
Drugs are an important tool to help get the arthritis under control. But to accept them as the only long term solution is rejecting mounting evidence to the contrary.
Will I ever be clear of RA? I think not. I will have no symptoms but that is because, as a lifestyle choice, I will avoid trigger foods. That's not to say I will, for example stay clear of gluten. Yes, at the moment my body cannot tolerate it. But at some point I intend to add home-made bread with high-quality flour back into my diet. I won't ever be smothering a slice of toast with butter or marg, they are gone forever. But good bread is a valuable pro-biotic and when I can tolerate it I hope to enjoy possibly a slice most days.
Lunch today? A bag of salad, a few olives, some sweetcorn and a couple of gluten-free oatcakes.
Do what you think best for your own body is the key to recovery. However, do always check with your rheumy to avoid any problem along the way.
I will not risk myself to go without any drug. I do wish that those who choose to go without drugs but on diet plan the best of luck really.
RA is not reversible....there is no cure. However what we can reverse is any soft tissue damage that may have occurred as a result of inflammation around a joint. Yes the drugs used to treat RA reduce pain and inflammation and have a disease modifying effect.....hence dmards. So they do change the course of the disease which left untreated will likely result in damage to joints and other organs.It is inflammation that also causes many of the co morbidities associated with RA so get the inflammation down and hopefully you avoid these.
I agree entirely that we need to look after ourselves, be as fit as we can be, eat well, sleep well.
If you can keep things under control with diet then that's great and I wish you well.
Beaches2,
This is exactly what I believe. Unfortunately, there are still many RA friends out there believe that with diet plan alone, RA can be cured. i hope they can read more and can make a good decision for themselves again.
Thank you for the explanation, I do learn something from here.
Hi Amy
Yes I was just trying to respond to the statement that " the drugs do nothing to alter the course of the disease". I worry that people new to the drugs will think they needn't bother taking them if they make no difference.
Painkillers and anti inflammatories only treat the symptoms and so they have no effect on the course of the disease, but dmards/ biologics are given to do just that.....modify the disease and by doing this the inflammation is controlled.
It is of course up to individuals to do what they feel is best for them, we weigh up all the facts and then make our choices.
Lovely photo Amy, you look really well and happy.
Dear Beaches2,
You are right to say that. It is very sad that many people around do not read enough to decide. Many of them read the side effects of the drugs and decide not to take them and go for diet plans, the so call natural cure. I believe reading up more and listen to the rheumy are the keys before any decision. Unfortunately bad news always sink in well but the good sides of it would be ignored.
When I was first diagnosed, I started to read. The side effects of DMARDs were horrifying but I penned them down and asked my rheumy when I visited them. I did not stop the medication immediately. My rheumy explained that the benefits that they gave me would be far more than the possible side effects. She reassured me that the blood tests would be important to monitor my body condition responded to the drugs. I was happy to know that and worked very closely with her. Thereafter I was back to my normal self slowly as the time went on.
Thank you for the clear explanation over here and I hope the new RA patients can read more and make a great decision for themselves.
Last week, I came back from the Japan trip. As you can see, I again climbed up to the top of the castle though it was not really that tall as compare to others that I went. Again many healthy people stopped to go up because they said tiring. As for me, I went all the way because my body condition permitted me to do so without any problem. Therefore, though I am a RA patient, with the great DMARDs that I never skip and daily exercises that I continue to do daily, I am back to a normal healthy person if not stronger. The intention here is to inspire others to look forward into remission, which is achievable really.
I was diagnosed 28 years ago. Treated initially by a rheumatologist with so many meds the meds themselves were making me sick. After several months, I chucked the meds and turned out I was okay. Then I would flare periodically. My family doc would put me on a short-term prednisone treatment each time and that did the trick. 14 years ago, no more flares. It was like the disease didn't exist for me. Had zero to do with diet or treatment - wasn't on a special diet and wasn't taking any meds (though I did eat right and still do).
Out of nowhere, boom. Started with a pulmonary embolism and then sick and fevered. My counts were so elevated that they exceeded the tests and showed as > in my lab work. Since, I've been taking plaquenil to address the overlapping clotting disorder I developed - it hasn't impacted the RA at all. Also, taking prednisone so I can move, yes move - like walk without my hips giving out or like lifting my arms. I started out on 80mg of prednisone and have cut it down, over the course of 18 months, to 10mgs. Have pain and function interference, but can function. Through out, I've taken mtx for 3 months, Arava for 3 months, humira for 4 months and including the plaquenil and steroid therapies, have arrived to today.
I'm not sure about diet impacting the disease. I've always had a healthy diet and was a work out nut. A year and a half ago, I weighed 112 lbs and was completely toned and muscled. Only 5 foot tall, but my body was in fantastic condition and no fat. Today, I've gained almost 40 pounds from the medications and lack of exercise and exercise isn't something I can tolerate. In my experience, the disease impacted my lifestyle not the other way around.
At the end of this month, I start remicade, the route my rheumatologist wanted to take right out the gate. I had refused because I was afraid of jeopardizing my job if my then boss knew 1- I was experiencing health problems and 2- by missing the time needed to go for the treatment. With a new job, i have the freedom to seek treatment that takes a couple hours and impacts the work week.
For me, medication is the only avenue I see to return to what was once a normal, healthy, active life. I don't have joint damage at all, but this disease has affected my entire lifestyle and my ability to function. I am often fatigued, my body is in significant pain that lingers throughout the day and every night, with awareness of that pain even while I sleep and sometimes waking me up.
If diet is having an impact then have at it, but I was long there prior to this disease returning and hitting me full face. Remission isn't always explainable. My rheumatologist said they don't know why or how you can spontaneously go into remission or how some people, like me, can stay there for years. He also told me that people like me that do, when the disease returns, it returns like the devil it is. The bright side is, they also know that people like me, when we can finally get back into remission, have a higher rate of staying there. Another inexplicable side to the way this disease works. So, hoping for remission and hoping when I get there, it's permanent.
As to meds, well for some of us, it's about quality of life and the pursuit of functionality and remission. For others, it's to prevent damage to joints already ongoing. And yet for others, it's a necessity because of the host of other overlapping medical diseases that come along with RA. I fall into two of those categories. I don't take any pain medications - the brain fog that also comes with this is bad enough, I can't imagine what it would be if topped with narcotics.
I encourage everyone to try what they're comfortable trying, but do so under the guidance of your rheumatologist. And further, realize that this disease does host other diseases and sometimes, those can be life threatening.
Dear Chelle,
I certainly 100% agree with what you said here. I do think we can only stop the drugs if our rheumy instructs us to do so. It is just too risky and painful if the disease does come back. I am very happy with the stage I am in now, I could not imagine what life is going to be like if it hit me again.
Yes, I too was a very healthy person. I ate very healthy food and I exercised regularly, I did not have any bad habit and slept early and got up early. Unfortunately, after the infection on my right hand, I did the gardening and I hurt my own hand, I ended with RA after a year. The injury was not healed for a year then I was diagnosed with RA after that. After taking the medication, the injury was healed without me knowing it.
I am glad that you do not have any joint damaged after that many years of RA. I too do not have any joint injury and I hope it maintains this way. I continue to eat healthily and do my yoga every morning, not forget to sleep early and get up early too as usual. Basically there is nothing change before and after the RA problem for me.
I find it strange that I have no joint injury, do you? It certainly seems, at times, like I have something different from some of the folks dealing with RA. Having said that, my case is severe at this point so itI'm glad you have no joint damage
So far I do not have any joint damaged until now. I believe the early treatment that saved me from that. It hit me hard when it came, I was almost collapsed at the very first hit. It happened in end Jun 2014 when my knees started to swell and slowly they got very painful. Then I was diagnosed in 16/07/2014 and started the treatment immediately.
During the process, I had muscles wastage and I was left with only 38 kg. I could not balance myself even when I walked on a very flat surface. My knees and ankles could not balance my body hence my daughter was always with me then.
I could not open a can and I could not made myself any drinks because my figures just gave way and my hands were very weak. I could not carry any things in my hand though they were not heavy. I am okay right now so I hope I can maintain the same for life.
By the way, may I know what happen to you now? Do you flare up now? How bad is bad for you now if you do not mind?
I had similar experience. But most of the inflammation in my joints was hips and shoulders. Muscle issues also. Still have a lot of weakness. My hips still give out on me, unexpectedly.
It started back up out of nowhere. I came home from work, exhausted and went right to bed. Didn't wake up until the next morning. Went to work and was having difficulty with my job. I did purchasing and had my company part numbers memorized in correlation with our supplier part numbers. I could whiz right through the work day without giving it much thought. All Of a sudden, though, it all changed. I was blanking out. Double and even triple checking my work.
This went on for about a week then I started having muscle issues. A lot of cramping and weakness. By week three, my hips and shoulders were so painful, lifting my arms and walking were a major issue. At that point, I called my family doctor and asked to be able to come in and test for lymes disease. It was summer so I thought it was possible I'd been possibly bit by a tick and unaware of it. Keep in mind a few months prior to all of this, I'd had a pulmonary embolism that no one could explain.
My family doctor did a huge blood workup. And here I am today. Still trying to get the medication combo right. I'm on plaquenil though it's had only a very minor impact on my RA symptoms. Even so, I will stay on it because it treats the overlapping clotting disorder I have - finally discovered after extensive blood work. I'm on prednisone and that's been my saving grace, mentally. It's keeps the brain fog away so I can at least function normally for work. However, I want to get off it.
Starting remicade next week and hoping it works. I was on humira for 4 months and it had started working for a few weeks then it just stopped and then any progress I was making edged off. No idea why. I was hoping that would be one that I would sty on, because it is quick, easy and can be done at home.
By the way, glad you're doing better! It gives me hope to read what you went through and know you've improved.
Dear Chelle,
The horrible flare could be due to the fact that you were not in any medication? That gave your immune system time to produce the antibody against the medicines you used? I am very sorry to know that you still suffer for that now.
I am in the hospital now. My blood works are near perfect. My rheumy again was very pleased and reminded me to do what I do and to eat what I eat again.
You will be like me one day when you find the right DMARDs for yourself.
Below link is my progress which was intended to inspire others. I hope it gives you the positive drive to look forward to.
Spontaneous and inexplicable remission? Whatever solves the problem is all we all ever want.
From my perspective a damaged gut is pretty close to the root cause of all auto-immune illnesses and particularly RA. Given the right circumstances the gut is a self-healing object (gland?). Sometimes it needs a small helping hand (perhaps just some cider vinegar!) However sometimes a barrel load of manure.
Seriously complicating matters are drugs, stress, fatigue, inflammation, joint pain, joint damage, family life, work life. Not to mention other illnesses. All these make spontaneous remission less likely.
Yes, there are some spontaneous instances and no-one here could be more happy for them.
I hope and expect my remission, when I declare to full and permanent for the rest of my natural. (excluding joint damage etc which most likely I will live with to some serious extent.)
Dear Andy,
Beaches2 has given a very clear explanation to me up there. I did ask my rheumy long ago when I read of the leaky gut from the websites. The reply was if I could pass motion everyday without any problem, there is no leaky gut issue so no need to worry too much about that. The things he wanted me to look into were to sleep well, reduce stress, continue what I ate and what I did. Most importantly, never skip my medication and my exercise.
I listen and I follow closely. Today, I am just very much back to my normal self though I am very careful of my movement to avoid any possible fall because I do have osteopenia now because of RA, DMARDs and getting older each day. I am working to stop that hence I read up on that area too.
Early aggressive treatment is the key to avoid joints damaged, I believe those old days many RA patients did suffer from it because the knowledge improved when the time went by. I am glad that I am lucky enough to be treated early hence achieve my remission after 1 1/2 years of treatment.
Yes it happens. I know from experience. I have always eaten healthy and I was in remission for 12 years. When it came back, it came back hard and my doctor said that this is what studies have shown. He can't explain it anymore than anyone else, but I can tell you he did research it out after I went to him.
Maybe the gut maybe not. I ate healthy and took great care of myself and believed that's why I maintained remission for years. Turned out that it didn't matter because it still came back and had been very difficult to get a handle on. I'm
Dear Chelle0801,
Knowing what you said here, it is scary to know that it could come back hard!! In fact, I am trying hard, my belief us like you, to maintain my drug free remission. I don't think I can take another round of attack really. I hope to know more on how hard it can be if it does come back? In fact, I have been trying to read more online on this piece of information but I yet to find any until now.
Keep in mind, Amy, that I was not on medications at all at the time I went into remission or when this came back.
So, when I end up using none and not needing any RA drugs for the rest of RA-free life - that I am just very lucky, is that your argument Beaches2 and Amy_Lee ?
Sorry for butting in andy, but your reply has got me thinking. I can see both sides of this debate.
Personally, I do believe I was one of the lucky ones who went into remission when I had MS. I remeber wishing that there were drugs for MS back then as I went blind and I was in a wheelchair at the age of 21.....But now 29 years later, I am greatful that I did not have to poison my body with MS meds. I do know that if MS medications were available when I had MS, I would still be taking them today. I would have never known I was one of the lucky ones who had benign MS.
If diet is helping you, I hope you reach remission.
I think you are smart enough to know how your RA is doing. I believe you will use dmards too if your RA remains uncontrolled. In the long run, does it really matter how we reach remission? We just need to reach remission.
I wish you well.
Sue
Sue you are right, all we want is, at best, for remission/recovery to happen. Anything that takes one away from this crippling illness... There are so many solutions out there... Drugs.... Some dietary, others... and also there is pure happenstance.
Drugs should if not must be a first port of call. And it is clear that many people that leads to some kind of remission. For others drugs are not an option, perhaps they have a very bad reaction etc.
Whatever some people just rely on drugs, and I would never deny them this option. What causes me to speak out is people who argue "there is no other way", "diets don't work" or "other ways are too dangerous".
In my opinion the biggest danger is ignorance. Whilst there are many diets there are also common strands that are cannot and are not contested. The benefits of turmeric is arguably the best example. Another strand is the reticence of trying dietary changes, perhaps for cultural or family and dare I say it even personal reasons. After all cola drinks cannot do anyone any good apart from giving them a very serious sugar and caffeine rush, but they represent the biggest selling drink worldwide. Much of that is down to the power selling, none of it down the improving one's health. Oh, and one of the first things I did in my own dietary changes was vastly reduce sugar and caffeine.
I've had to readjust my stance on diet and RA. Diet does not effect my RA, but it does my husbands RA. We both eat a good diet, but my husband likes to snack on a block of cheese and a garlic coil sausage. Well whenever he eats this, he gets a RA flare.
He didn't believe me when I said this was causing his flares. He wanted to prove to me that I was wrong so he asked his rheumy and his rheumy said,
"Who knows? Why not give the cheese & sausage up and see what happens." He listened to his rheumy and now he only needs one hydroxy a day to control his RA.
To change the subject, it's the curcumin in the tumeric that holds the anti inflamatory properties. Curcumin is what makes the tumeric bright orange. It bothers me that the majority of capsules that people buy in health stores labeled Tumeric & Curcumin, do not contain enough curcumin.
An intesting note is curcumin is also what the University of Queenland is using in their studies of the RA vaccine Rheumavax.
Hi, yes I think that would be wonderful and really hope you achieve it. I believe there are a small number of people who do manage to come off the drugs and remain in remission. I remember when I first got diagnosed they gave me a leaflet with % of people for whom it just goes away, those who take the drugs and reach remission and can reduce or eliminate drugs and those who will continue to need drugs and will have some ongoing issues........I really hoped I would be in the first group, sadly not to be ....... It took a lot to calm mine down. I do sometimes wonder if mine would perhaps stay away if I stopped taking the drugs, but little signs tell me that it would likely come back with a vengeance.....I won't chance it. I have asked about reducing the drugs a little now and my nurse said we would do it very slowly and carefully as I'm sure you will. Good luck.
Andy,
I am very sorry to say that my answer is yes because i do trust that to avoid joint damaged, we cannot avoid taking the DMARDs. I will not go for just diet plan because I believe we need to control the disease.
As Beaches said, I will not risk my body with diet alone. When it is necessary to reduce it, my rheumy will reduce it for me. In fact, my rheumy started to reduce my mtx intake from 20mg to 15mg in Aug and 12.5 in Nov. I am not sure if he or she will continue to reduce it for me when I visit them tomorrow. I hope they will as I really do not like to take mtx because I will be quite sick the day I take mtx.
Amy Lee, your story is so informative!
I had decided to go without medication because all the side effects scare me, they are so awful! But I started to read more, and read your posts, and I had decided to make an appt. The dr had to cancel on me and I was referred to another dr in the clinic, but I cancelled because I really want a female Dr. I am much more comfortable with a female dr.
So now I am waiting for a new referral - but I just found out the costs of RA medz!
healthline.com/health/consu...
(drug comparison tabb)
How is anyone supposed to be able to afford these medications?? We have insurance, but a 2500 deductible and after that only 80% which still between $250 to 1000 a month? How is that even possible?
We don't qualify for aid because we make enough money on paper but due to a business failure we are left with a huge amount of debt.
I am on prednisone right now while I wait for a rheum apt, but literally that costs $3.50 a month.
How long can I just use pred to avoid damage?
Hi, I believe you are from USA, am I right? My son is still there, he told me repeatedly that the medical cost is just too expensive for the general public to access. So he will come home after his graduation, he will not consider to stay in USA permanently because of that.
I am very very sorry to know that you have to bear such a high cost of the treatment at your current financial situation. However, I guess you have to make a choice really. To continue denying yourself of the treatment will damage your joints so I still think that it is worth going ahead if you can.
I am not sure which posts of mine you read, I did intend to inspire RA patients to look forward positively. Side effects are scary but they may not happen if your body can take the medicine and your rheumy will monitor your condition via your blood work. Once you get the right medication, you will be getting better each day.
I just came back from my RA appointment this afternoon. My blood works were near perfect now. My ESR and CRP are 7 and 0.97 respectively and I feel very much back to my normal self for months already. My rheumy told me that the feeling of a little tightness of my figures and toes are unavoidable when I move them, though I have recovered very well. He told me to do what I do and to eat what I eat to continue to be healthy. My rheumy said he will consider to reduce my mtx further in 6 months. He wanted me to eventually take off mtx but to maintain leflunomide. He said that the plan is to do it after every 6 months if my progress continue in the same manner.
I have been taking chia seeds and black sesame seeds power with cereal for my breakfast for more than a year now. I believe these help me to stay healthy too. You may try to see if your condition can be improved faster.
Hi - I did look at everydayhealth and it appears to be a pharm marketing outfit - this is their own self-description: "a digital marketing and communications platform for healthcare companies that want to engage with consumers." They also run Cambridge BioMarket, to market new meds for rare diseases. I'm not saying there isn't a place for that, but their slant will be towards treatment with drugs and not towards treating with nutrition or lifestyle changes.
Out of control and at the end of my rope!!!!
Treating the pain