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Hi Kelly,
Glad you addressed this again. I just eliminated my nightshade food and I feel worse. Is that normal? I’ve been trying to find out if any food or supplements interact with biologics. I’m on Enbrel. I just want to make sure I’m getting the full benifit of the meds, but I can’t find anything on that, but on other meds I do. Maybe you could address this if you know more about it. I’m so glad you are helping all of us newbies out. Without all your hard work, I would still be in the dark about what is truth and false on this ugly disease.
Plain and simple. Biologics and whatever else ALL of your physicians have consulted and agree upon ***Make sure this is done – do not assume*** are the only meds you should take. Mixing natural and the biologics can do more harm and/or not be effective with the ingestion and interaction of herbal remedies. The drug companies did not test the efficacy or safety of their product even with all the approved drugs. Be safe.
Starting my 5th biologic soon.
You are right, Debra! Just wanted to add for newbies that there is a difference between taking for instance iron because you would be anemic without it and taking an herbal or vitamin supplement because you think you need it. Example, I take black currant oil for my sjogren’s because my eye doctor told me too. I tell all my doctors everything I take, not just rx. Supplements, otc stuff like claritin or even an occasional pain pill should be added to your rx list at all doctors. If you are ever needing an otc remedy or want to try a natural remedy it is a good idea to ask your doctor or pharmacist first. Or just simply asked your pharmacist for a suggestion.
Thank you for this post today. When I was first diagnosed with RA in August 2011, my family sent me to an alternative health specialist who proposed treating me with a body cleanse. At the most rigorous point during my time with her, I was taking 100 clay pills a day, as well as a number of healthy gut supplements. Meanwhile, my arthritis quickly progressed, leaving me almost crippled and in far more pain than I could imagine. I suspect that this woman, while probably very knowledgeable, also had a lot to gain from selling me supplements and telling me they could cure my illness. I ended my time with her feeling worse than ever, as well as discouraged and let down.
As someone else hinted in another comment, I’ll bet that if you were diagnosed with angina, Hodgkins or type 1 diabetes, people would have known better than to start with an alternative health specialist for a body cleanse. This is one of several reasons we are working with doctors and other organizations to change the name of RA to include the word “disease” instead of “arthritis.” People are obviously confused about the seriousness of the illness. And the result is what happened to you, Kathryn – giving the disease a headstart to spread to more joints and entrench itself & begin to damage tissue – not to mention your discouragement.
I have RA and take Humira and I also want to let people know that I started taking 1200 milligrams of fish oils daily and my last sed rate went down to 14! So in my case I believe the fish oils along with the humira have helped. I have little if any inflammation right now.
I was diagnosed with RA three months ago, and have been referred to a rheumatologist but no appointment yet so it could months away. In the meantime, my family doctor put me on naproxen and tecta, but I’m now severely anemic (likely some sort of GI bleed) so he has taken me off naproxen and I’m having various tests. About a month ago I saw a licensed naturopath who recommended significant dietary modifications along with several supplements. I have talked to my family doctor about these recommendations, and he sees no problem with what I’m doing. I guess it will soon be evident whether or not these non-drug interventions are having a positive impact. Today is my first day off naproxen, so I’m bracing myself hoping that any pain can be managed with ibuprofen or tylenol for the next three week until my rest results are back.
Carolyn, I’m sorry about your situation and I hope it is straightened out soon! I know there are genetic differences that affect what works, but naproxen gives me no relief for RA inflammation – even when I have to take large doses for my back (it works for the muscle-related pain somewhat). But ibuprofen is more effective (again, in high doses) on my joints – all that to say – hopefully, that will work for you too.
Thank you SO MUCH for posting this. So many people (sometimes ourselves) want to believe this very serious disease can be treated with some “safe” supplements vs. “dangerous” pharmaceuticals. This is simply not possible for the life of the disease. Supplements may help reduce some symptoms for awhile, but they do not fix the disease, or stop damage long term, or anything else.
I’ve had more bad side effects from supplements and alternative treatments over the years, with less affect on my disease, than I have with RA meds. One example: Ginger, which was touted as a warming anti-inflammatory at one time, great for RA. Turns out it thins the blood, I bruised all over, bled easily, and it ate away at my stomach. Fun times.
We are in it for the long haul, and some fish oil is not going to do the job.
I had been teaching yoga for 30 years (and practicing it even longer) when RA captured me. As you might imagine, with my background, I knew many holistic practitioners and even more people who thought they knew what I needed. I rarely even took an aspirin.
So, I rejected the medical suggestion of conventional meds and went the holistic route 100%. Loads of supplements every day. It helped quite a bit (at first) with pain management, but the disease progressed. After 5 years, I had sustained some permanent joint damage and felt much worse.
Now I take Methotrexate and am open to other conventional treatment. The docs label me with advanced RA, and I’ve had to adapt and adjust so many parts of my life accordingly. I still incorporate some holistic recommendations and now feel that (used intelligently and mindfully) some, not all, of them can work harmoniously with the conventional medical treatments. But they are never a substitute.
If asked, I always recommend that people with RA find a good rheumatologist and get started with treatment. Then, they can research up a storm, stay well-informed, read RA Warrior, and learn what else can help. With the medical treatments there will be some degree of disease management and a chance at less damage than I suffered.
Supplements Work wonderfully if you have a deficiency. However, your body can only absorb so many vitamins and minerals at a time. Taking mega doses of water soluable vitamins gives you really expensive urine.
Taking mega doses of fat soluable vitamins ( A, D, E, and K) can be deadly. These fat soluable vitamins are taken up by the body and are stored in fat molecules in the body. They are not excreted even when they reach toxic levels.
If you are worried about vitamin deficiencies ask your doctor to do blood tests to check for vitamin and/or mineral levels. Being deficient can cause many additional problems but overdosing can cause more stress on your liver and kidneys and cause more problems long term.
This was a big problem I ran into as a visiting nurse. I would go to a new paitient’s home with a very short list of prescribed medications and when I asked what else they take they would bring out several more bottles ‘the guy/gal at the health food store said would help”, on one occasion a patient brought out 2 laundry baskets full (not kidding). It was often quite scary for me as a nurse, I would read through the lists of ingredients on these combination supplements and realize they were taking toxic levels
There is an independent site that you can become a member of, that tests supplements for many things, such as purity, active ingredient content, consistency, among other important stuff to know. They’ve been around a long time and I’ve been a subscriber on and off. They’ve been featured on Dr Oz, who has a famously extensive and strict medical research team, but as I said have been around a very long time and are independent.
http://www.consumerlab.com/
I have no affiliation with them. Just passing on information for those of us who DO find supplements helpful (I don’t call them remedies) where decent research has shown that things like Vit D3 can HELP (not cure or treat) the prevention of many cancers, etc.. fish oils can be heart and brain protective, niacin can help with cholesterol problems, etc.
You have to be your own advocate when it comes to interactions and make sure your Doctor, Pharmacist and Rheum know everything you are taking, natural or otherwise and ASK if there are possible conflicts.
You also have to understand that, yes, not everything will work for everyone. Like, most Americans are Vit D3 deficient, especially in winter, but you may not be, thus really overdoing it on D3 may cause toxicity, rather than be helpful, so ask for your D levels to be tested next time you have your bloods done.
The Gluten-Free craze is another one that especially drives me nuts. Unless you have celiac disease or proven gluten sensitivity, Whole Grains are wonderful for you and necessary in a healthy balanced digestive system.
I am a self-confessed organic eating, healthy living, all natural, anti-chemical freak.. who also has a wide streak of skepticism and practicality.
I don’t think is a bad thing for life in general or RA specifically.
I am on some DMARDS but struggling with the choice to leap to MTX, however, in the meantime I won’t neglect my general health and by extension, my RA, by not taking good supplements I 100% believe are helpful to me, backed by my experience, independent testing and research.
So ask questions of people who know (doctors, pharmacists you trust), research reputable studies (universties are a good start) and think about independant labs, etc like the online one mentioned, but most of all, listen to your own body and keep a few short notes every day if you can on what you’re noticing together with what you’re taking, both RX and supplemental. You may see a pattern that helps you.
But then, opinions are like butts… everyone has one 🙂
Excellent! This so needs to be said. I fear for those that are just diagnosed and are going to try only supplements first. They may waste precious time getting the disease controlled. The words ‘Rheumatoid Arthritis’ should cause the same fear that the word ‘Cancer’ does, but it doesn’t and this is a huge problem. I hope people will ask themselves “Would I treat cancer or type I diabetes with only natural supplements?”. If the answer is no, then the same should be applied to RA.
Gee Kelly, kind of a negative tone on this post.
Believe me, from personal experience, I know that supplements are NOT a cure, but with “informed” use of both general and specific herbs, foods & and nutrients, persons in our situations can give our bodies a fighting chance. Not only our disease… but the drugs we take cause many side diseases like osteoporosis & glaucoma, and deficiencies like magnesium or folic acid. As an example, , whey protein has been shown to help prevent or even reverse muscle wasting in AIDS patients.. Why not include it . Turmeric for inflammation has been well documented. A good vegetable juice daily can be so nourishing (if you can get someone to do it for you lol) Most MDs know very little in these areas, and a good Natural Health professional should be a part of our treatment team.
Yes, uneducated self treatment, poor quality and unethical marketers are a problem, but we shouldn’t dismiss the whole idea because of this. I’m sure you agree. This was to encourage, not criticize.
Love & gentle hugs,
Linda
To Prakasha….
Like you, I did almost nothing medical for the first 3 years being a Natural Health Professional. Ended up with SEVERE progression & joint deformation. If I could do it again, i’d take the biologics right away like they are recommending, along with the natural stuff.
Me too, Linda.
I would love to show this to every person who has ever told me “I heard fish oil helps arthritis!” Alas, I am much too passive aggressive to do so. I guess I will continue to grin and bear it! 😛
I believe you’re right…money! These “supplements” are EXPENSIVE! I also think the name ,Rheumatoid Arthritis, causes people to think that it can be treated like any other arthritis without understanding it’s an autoimmune disease. When I first was diagnosed with RA, I had SO many people wanting me to try this supplement and that supplement with no help from those supplements.
We need education for the general public,RA suffers, AND doctors about what RA really is, and thank goodness, your site is up and running and trying to fill the void!
Thank-you Kelly and all the people involved for stepping up when no one else has.
I just LOVE your newsletters. VERY informative, very objective and very encouraging. I also love how you don’t sugarcoat everything. Thank you for that. Thank you, from the bottom of my heart!
I struggle(d) with the whole supplement issue. I hate(d) the idea of taking a chemo drug (methotrexate). I wanted to treat RA naturally but couldn’t get up from the floor without crawling on my elbows at first. I’ve gone on and off the methotrexate and no matter how well I was eating and how many “natural” things I was taking, I ended up with the same result (crawling). I believe I have come to a point where I’m ok with the drugs. Eating healthy, inflammation fighting foods is always a good choice. Avoiding inflammatory-promoting foods is always a good choice. Keeping our weight in the ‘normal’ range is good. I believe that a reasonable dose of Omega-3’s and D3 (I’m in WI in winter) is good. I definately believe that no matter what supplements you are taking, you need to be honest with your rheumatologist and tell them exactly what you are taking. It’s a matter of safety, your health, and your life.
i’ve never been especially bothered by the RA name (just never encountered bad doctors or ignorant people who didn’t know the difference…lucky i guess) BUT this post made me see the whole point. my mother in law is a big believer in supplements (she’s the one idiot i encountered in this) and she is very anti-drug company. yet she sells super expensive “natural” stuff to “cure” people. ummm, yeah…what’s the difference?? thanks for the post!!
Kelly,
I cannot thank you enough for this post. Time and time again I have had “well meaning” people/friends/family tell me that all I need to do to cure my RAD is to 1.) Change my diet, 2.) Take “fill in the blank” vitamin/supplement/etc, 3.) Exercise, 4.) Meditate. And by doing one or all of these things my RA will be gone.
After trying methotrexate and Enbrel, Humira & Orencia without any relief I actually
did go off all my meds for one year. I moved out of the country and took only pain management meds.
I have recently moved back to the US and went to see my Rheumy. She couldn’t believe how much my RAD had advanced – it has subsequently moved into my neck, wrist, ankles and back – but then I should have listened to her in the first place. She is a Rheumatoid Specialist. And deep down I knew better.
Good news is I’m back on my mtx and I’ve started Remicade. (THIS IS THE ONE!!!!)
Maybe we RAWarriors should start a goat farm with an acre or so of onions. We’d be rich I tell ya.
P.S. Go to the Bulletin Board on page 2 and scroll down to: Goat Tears! Funny little video to make you smile when someone recommend’s a Rheumatoid Arthritis “cure.”
I am so glad the remicade is helping you! That is fantastic. I think your cautionary tale is very important for newbies.
Mays I just say that sometimes supplement can be good? You can talk to the doctor about them, to be sure it’s not a problem to take some with your treatment.
For example I take vitamin D, and it reaaly helps, but I took it after a blodd test, with the advice of my doctor.
So I think what should be said here is that it’s not a cure, but it can helps.
RA is a tricky devil! I can relate to all of these comments having started a regimen of supplements before i was even diagnosed. i reduced inflammation initially quite dramatialy. the meds are effective off and on again, sometimes the pain is death defying! i am still on my supplements (220 pills a day besides the folic acid, mtx and pred at times) – many of the ones mentioned. i think they have helped with my quick recovery from flare-ups and prevented bone erosion so far as well as prevented other illnesses from complicating my general well being. no colds, flu, infections, etc. my skin, hair and nails are good (i am 60), my digestion is generally good. flareups do aggravate the digestion probably due more to the slight elevation of my temperature – i recommend folks take their temps regularly. don’t eat when it is elevated – drink tons of fluids. eat when it is back down again.
Oh, I’m on the front end of this and I’m already being urged to change my diet, “go natural,” etc. etc. It makes me crazy. Two points:
1. See http://www.sciencebasedmedicine.org/ I think it’s just terrific at debunking a lot of the alternative snake oil out there.
2. My own story, which briefly addresses my contempt (I’ll be honest on this one), towards all non-science based treatments. http://cath47.wordpress.com/2012/02/02/towards-a-new-normal/
I just have to say http://www.sciencebasedmedicineorg/ is a terrible site, and incredibly bigoted. I don’t recommend it to anybody and if the site went away tomorrow, and the people with it, there is no doubt in my mind that the world would be a better place. Stick with reliable sites that actually use science, not opinion, to verify results.
Has anyone taken the huge doses of Vitamin D. I was low on vitamin d and doc my RA meds right now because of high kidney enzymes. My regular doc put me on D. Well, I will tell you that the swelling has gone down in my hands and I feel better overall. I haven’t taken methotrexate for 2 monts now. My I am just lucky right now.
Steph
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I have taken KcL for years because of also taking a diuretic,I had been taking 50 mg but cut back to 40 as my KcL was getting on the high side of 4. A year ago after much pain and a change in my hand structure I was d/x with a severe RA and was started on Rituxin and Celebrex. I had been on Vitamin D for years as it had been low. So if you think KcL helps with RA i’m a walking example of it not working in my case and probably many others.RA has to be treated promptly or you will find yourself in a wheelchair because of bad knees and with hands that don’t function.
It’s true – eating well and supplements help but don’t cure. My rheumatoligist actually recommend going gluten free and fish oils to help keep inflammation down – so I did and do those things – infact for many years now however it has not cured my RD and I’m still looking for the right biologic.
(MUST READ: RHEUMATOID ARTHRITIS CURE)
In 2014 I started having pain in my left foot. The doctor tested me for gout and it was negative. A couple of months later I started having pain and stiffness in my left hand that was very severe at night. The doctor did blood tests for rheumatoid arthritis (RA) and I tested positive for anti-CCP (134). Then the pain started spreading to other joints. I was so tired some days that I didn’t feel like driving myself home from work. My eyes were dry and irritated and I had a dry cough. All medications given by my rheumatologist were really not helping. Finally i started on Newlife Rheumatoid arthritis herbal formula in 2016, just 3 weeks into the RA herbal formula usage some symptoms had seized. When i finally completed the herbs usage all symptoms including aching joints, stiffness, pain and fatigue dissapeared. Visit www(dot)newlifeherbalclinic(dot)com. I recommend this herbal treatment for all RA sufferers, its a final breakthrough for all suffering from Rheumatoid Arthritis.