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[Member Discussions and Questions] Scared to Try Medications: Advice for Alternative Treatments for Rheumatoid Arthritis?

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Scared to Try Medications Advice for Alternative Treatments for Rheumatoid Arthritis member discussionApril 30, 2014

Advice or suggestions?

Newly diagnosed looking for some helpful input:

Hi I’m newly diagnosed with RA my doc wants to start me on medication but I am so against it…anyone out there not taking medication that can give advice on maybe some alternative methods??

As always thank you in advance for helping to answer this member’s message. Your help is greatly appreciated so a big thank you. (((pain-free internet hugs)))

What our members have said so far:

Carol – Early aggressive treatment is critical to have the best chance of avoiding joint disfigurement and other long-term, life-threatening problems brought on by chronic, uncontrolled inflammation. I know the meds sound scary, but honestly, chances are you w…See More

Carol – I should have added that you can always combine alternative treatments with traditional medications – many of us here do!

Mar – along with my mtx i do drink fresh turmeric root in a tea and also ginger tea, and i also use diatomaceous earth which really helps for me with pain (i have no pain at all these days knock on wood) so i guess i do some alternative things…

Missie – I think it all depends on how severe your diagnosis is and how much damage has been done and being done.

Elizabeth – You can do both! I had my dxt 3 years ago and it was quite scary at 1st. I’ve decided to be pro-active so I’m doing reading on how our environment affects us and quite possibly is part of why we are vulnerable to autoimmune issues. I changed my diet and I also am taking supplements to target my issues. Gradually my labs are improving…time will tell but I’m sure in the future I’ll be able to share more here. Oh…my doc’s told me my Ra is an aggressive form so I’ll do whatever it takes to feel well.

Mar – awesome. let me know if you have found any links to the old amalgam fillings and ra? i guess i look for anything but genetics to blame on my ra.. my cousins and my uncle had ra so i guess that might be the key..but i’m interesting in the mercury fillings connection.

Elizabeth – genetics can be a factor…I don’t know about fillings as you here either yes to that or no so the “jury” is out! I just put RA in the search box on FB and found my links from there! In my case I know of no one in my family with RA or similar issues so my case is either a fluke or a recessive gene.

Michelle – None of us want to take the meds. It is so very important to get your disease in check before it starts doing irreversible damage to your joints.

Andrea – I have had RA for 10 years and have been med free for the past 7. I did an elimination diet and avoid my food sensitivities (for me it’s gluten and dairy). I take turmeric, boswelia, krill oil and a good multi and I do tai chi regularly. I went to naturopathic medical school and am now a naturopathic doctor. Feel free to pm me if you have any questions about how I do everything naturally or about naturopathic medicine. If you are interested, I could help you find an ND in your area

Kristi – I was put on Plaquenil & that is still the only Rx I take. I have had no side effects & actually started seeing positive results in about a week. You do want to be proactive BEFORE disfigurement or damage because it is not reversible.

Vee – Skip the touchy feely and be aggressive. Long term is what you are looking for. Mobility and pain management are the key to living with chronic diseases like this. I do biologics, massage, and a senior chair exercise class. Rotate that with water exercise. Don’t allow the disease to take over. Once it does it is hated to get territory back.

Lindy – I didn’t take my medication probably when I could give my body a rest but now I’m undergoing huge amounts if surgery replacing damaged joints- your medication prevents long term damage please think about this

Leala – I was against it too, but I started and its helped a lot . When you start getting disfigured from the RA the meds are really beneficial and some safer then others . I started taking hydroxychloroquine ( plaquinel . I have been told its the safest .

Caryl – You can change your diet and exercise to help control the inflammation. But, as other people have already pointed out, the sooner you get on a treatment the less damage you will have. Not only damage to your bones but your heart, liver, kidneys, lungs, all organs. RA doesn’t just damage your bones it goes after your entire body.

Trudy – People do tend to forget about the organs..thanks for putting that out there Caryl..I have interstitial lung disease..no cure..brought on by RA.

Caryl – I have IBS or IBD or some damn intestinal thing going on and even though none of my doctors say it’s from my RA I know it is.

Giselle – I think it’s quite normal to be against the medication in the beginning. I had the same reaction 13 years ago when I was diagnosed. I tried Ayurvedic medicine, yoga, acupuncture, etc and after a year I gave in to traditional medicine since nothing worked and I only got worse. I take MTX since then and since a year I take Orencia+ Hydroxychloroquine+fish oil+Grape seed extracts and I feel fantastic, no pain whatsoever, I don’t remember feeling so well. You can also add alternative treatments and a meat-wheat-dairy free diet as well. I am completely again corticoid, this one sucks big time, terrible irreversible side effects. Never again! And watch out for long-term usage of ibuprofen/Advil and others NSAID because it can also have horrible side effects.

Angie – You must take meds. You won’t survive physically or mentally without them. And yes, as others have said, you will regret not treating your RA. The disease does permanent damage when not treated. Just google RA images. If you stand any chance of avoiding permanent, painful damage – please get a med plan going with your doc. And I promise you – it will take awhile to get on the right regimen. But it will be worth the time and effort. And…..keep coming here and reading and asking questions. Other than my doctor, this is the best place for info I have found. The people here are kind, compassionate and knowledgeable! Good luck!

Kristi – I am newly diagnosed too and am responding well to plaquenil and taking vitamins. I was apprehensive about meds but I feel good with no side effects

Carolyn – All the research shows the treatment needs to be aggressive early. They used to wait until later, but people were horribly deformed and in wheelchairs by then as the joints are destroyed. I take supplements to help general inflammation but nothing works for the long term like the drugs. Grateful we have them, hoping for better ones in our lifetimes.

Jenelle – Ten years since dx, meds free. Acupuncture, colonics, supplements and watching what i eat. On Paleo diet now. I still have flares but try really really hard to manage w natural therapies.

Tera – I am newly diagnosed too and feel so much better after plaquenil and low dose prednisone and Motrin daily. Also, take calcium and vitamin D which are crucial. Have had descent luck with yoga and acupuncture. I agree with all of the previous posts about being aggressive in the beginning. It’ll be OK, give yourself a break and try some things a little at a time (diet, exercise, alternative stuff) and get plenty of rest!

Jillian – Autoimmune Protocol (AIP) paleo is really helpful. Exercise is also insanely important! Good luck!

Amy – I was diagnosed at age 2. I’m 35 now. I have only been on serious meds for the past 3 years. I see minimal difference in pain. But my swelling is down and my labs are much improved. As an RA patient you will decide what is worse, the disease or the side effects of the medication. I wish I could say it’s an easy decision but it’s not. {hugs}

Megan – I have had RA for many years I am almost 30 and was diagnosed before I was ten. A lot of the drugs have serious side effects but like the other users stated it depends on how severe the diagnosis. I have tried natural methods and it does not help and will not help disfigurement. What you could try though pairing with rx’s would be perhaps yoga and foods free of added chemicals. I have been on many drugs and know what feels right to me and my body. Don’t be afraid to voice concerns to your doctor and they will give you options.

Lucy – You should read around the subject carefully. By not going on meds the disease will continue to progress and will cause damage that it irreversible. Replacement joints and other surgeries will never give you the same function and ability that you have right now. I’m 35 and have fought this for 34 years. You may be lucky and have periods of remission when minimal meds are required. But you should try and keep what movement and function you have now. Good luck x

Nicole – I am 37 was diagnosed when I was 19, I tried the no med. Approach but for me I could not do it. I was losing every thing my days cause I was to tried or hurting to bad to do any thing. I am on retexsin and day pro. Could not do every thing I need to do with out them.good luck though. Look into all your options. Sometimes the side effects are worth the quality of life u get out of them.

Deborah – I was diagnosed when I was 35 (and healthy a a horse). I didn’t want to take any meds either. I fiddled around for about 4 years…I have about 15% use of my hands. I went on enbrel 10+ years ago. I wish I had done it immediately. It stopped/slowed down the disease progression. I could have “saved” my hands. Rethink your position on just alternative treatments.

Kendra – You need meds. Ask any person who was diagnosed 50 years ago. They are now gnarled and in a wheelchair. You needs to take your meds.

Mar – I took care of a senior lady who had RA. yup. in a wheelchair. arms and legs useless, her fingers were like sticks of jello.  It was quite eye opening, and I said to myself then, I’m glad I don’t have it… who knew I’d have it 15 years after I met her? sigh.

Natalie – I have cut down on dairy,sugar and packaged /junk food, also apple cider vinegar preferably Bragg’s is supposed to help

Kim – Acupuncture, Essential oils, over the counter NSAIDS, Water exercise, or Yoga… and NEVER push your body too much….slow and steady… if you have never done exercise before don’t expect to jump in the pool and feel like a million bucks… GO SLOW….try to eat healthy(yes I am eating cheesecake while I type this) but small amounts… are OK.

Doreen – There is another page here on FB, and the members share advice and tips. I am sorry I don’t remember which one… I am strongly for the medications, having had to be off of them 2 different times and remembering the debilitating pain.

Jennifer – Diet and vitamins. Ginger, fish oil, omegas, pepsin, MSM…

Kristen – I’m 33 and was diagnosed in December. I am on methotrexate, meloxicam and of course folic acid and other vitamins… I was scared of the methotrexate at first cause it’s used for chemo and my sister was in the midst of chemo for breast cancer. Plus it had a long list of side effects. My pain has been almost none, bloodwork looks great! The only side effect is I’m tired a lot and sometimes feel a little ditzy…like I can’t think of what I want to say. good luck!!!

Jenelle – Rest, get as much rest as you can!

Cherelle – I have tried raw unpasteurized apple cider vinegar 1 tablespoons a day with 6 oz of juce twice a day helped. Curcumin is anti inflammatory with other herbs that have helped. Diet also helped me. There are just some foods that I love but I cannot eat. I am on traditional drugs now and they have helped but does have side effects.

Jackie – I have been on the paleo diet for several months and the inflammation is visibly much less. I stopped taking leflunomide due to a rash and the inflammation hasn’t worsened. I am taking a very low dose if prednisone and occasional ibuprofen because my hands still hurt and the fatigue is still bad (could be the fibro) I am supposed to be on humira but haven’t been able to because if colds etc. hopefully I can manage this disease with lifestyle changes but I am open to medicine if absolutely necessary. I was allergic to methotrexate and hydroxychloroquine.

Kelly – I only take Plaquenil (safe) Elavil 10 mgs (also safe), 3 mgs prednisone (an extremely low dose-I started at 5) and 200 mgs Celebrex. I take a # of supplements – Fish Oil, Multivitamin (extra vitamin D), Turmeric, Glucosamine with MSM and Milk Thistle. If your symptoms are not horrible and if there is no damage to your joints that you know of I would start with the milder medications first. You can always increase things from there as needed. I also recommend a healthy diet with lots of fruits and vegetables. I have been living with RA for 13 yrs. Good luck.

Erin – I’m scared of biologics. I have resisted them since my diagnosis, which I think was about 18 months ago. I don’t know how long I will continue resisting, because I am so tired of pain. Everything else I’ve been prescribed has caused me side effects that I don’t want to deal with. However, that might wind up being the case with biologics, too. I actually don’t think you can find alternative methods that will help you with RA. Sure, you hear/read that cilantro and pineapple will help with inflammation, and you hear/read lots of other suggestions. But inflammation is only one symptom of RA. If we have RA, we honestly have two choices – agree to biologics and/or steroids, or live with the symptoms of RA with nothing but NSAIDS. I’m so sorry that you are faced with this choice, and I wish you weren’t.

Carol – FWIW, I’ve had zero side effects on Enbrel, less than the side effects I had with methotrexate.
I remember being so scared of methotrexate I put off taking it until I absolutely was at rock bottom. After I gave in I never looked back and that was over 22 years ago. My rheumie, to his credit, never pressured me though I’m sure he wanted to pull his hair out at my reluctance.

Cindy – Ditto what Carol said. We all hated going on the meds but if you research it you’ll see that early and aggressive treatment will give you the best chance. I do both RA meds and alternative. Good luck.

Mar – I freaked out when I googled mtx side effects.. but ya, the pain in the beginning made me say to hell with the side effects I want to feel better NOW! lol. I have taken only mtx since I was diagnosed, did do celebrex for pain, but i’m pain free now and haven’t taken celebrex for about a year now (not that I took it faithfully in the first place…. bad patient! lol)

Moms With RA – While I think it’s important to get your disease under control as fast as possible, and that may include going on meds, there are many folks having great success on the Paleo Diet (myself included). Getting aggressive up front with your treatment is important. Most joint damage happens in the first 1-3 years. http://rapaleo.momswithra.org

Sherri – I went off my meds for a few weeks and was in a world of hurt. I was diagnosed 4 years ago and was on methotrexate and now enbrel. I would rather have my mobility and take medication than experiment with natural methods.

Kendra – Methotrexate for RA is a low dose. The idea isn’t to attack cancer cells. A side effect of chemotherapy is that cancer patients get a weakened immune system. With RA they are trying to get the side effect. That is why you can still have cancer.

Denise – I had to get off my mess because of surgeries etc and stayed off. Currently taking only anti inflammatories and vitamins. I am just as good as I was on meds. I don’t have any more flare ups than I did on meds and I feel much better. You can always change your mine if you decide to take them later but hang on for as long as you can without the bad ones

Andrea – Don’t be ignorant. Get on meds.

Jane – I was diagnosed Feb 2013 I have been on mtx leflunomide the list go’s on..at the moment I’m only on pain relief and non steroid anti inflammatories, i am in so much pain they have now decided to give me TNF injections next month..my ESR is 128 and my CPR is 121 so I’m really inflammed in every joint from head to foot….I don’t know what it feels like to not be in pain so i cant wait yo see if the TNF will work..

Toni – I feel a lot better when I cut out carbs. Stopped taking all meds at one point and ended up in hosp with inflammation around my lungs – it was awful.
The drugs are really important and we don’t take the same doses as cancer patients.
You are right to q but get yourself informed and try them and see how it goes.
You don’t want irreversible joint damage!

Mar – I’m surprised at how high the doses are for RA and for cancer patients. i had a friend taking mtx pills when she had cancer and it wasn’t the same amount i take weekly…. it confuses me too, cuz if we’re taking the same mtx that cancer patients take, how come we can still get cancer? i guess it’s the immune system thing though. sigh.  I’m all for alternative treatments too, but for RA I wouldn’t chance it. I hate taking meds of any kind because i always forget to take them, but i’m happy i have meds for this disease. I saw how it would be in future when i started to have such pain and my fingers and toes starting to deform and I did not want to see this progress. if there was something alternative that would have the same results as I have on mtx, I would go for it.. but as far as I know nothing in that area is going to do the trick for me. Of course the decision is always ours, so hopefully you can find something, whether it’s alternative or conventional meds that will work for you!

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The above is a discussion created by a member and with member generated responses from our Facebook community (facebook.com/rachicks) put into a format so that the discussion can be archived for future answers needed by others in a searchable format while keeping member anonymity. Member provided information, statements and opinions do not reflect on RAChicks.com or all individuals with Autoimmune Arthritis. We encourage all members to seek professional medical advice for any specific questions and concerns as this does not substitute competent medical care.

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4 comments… add one

  • Donna Helzer

    May 6, 2014, 6:39 pm

    Just diagnosed in March 2014. Am on Gabapentin 3 X 600 mg at night. My family feels I am different because of the meds and are very upset about it. My best friend says she when we talk she can tell I sound different….sort of slow and slurred. I plan next week when I see the doc as to dosage and side effects.

    After reading all the posts it seems there is a 50/50 split btw meds or finding alternatives.

    Not sure what to do…..

    Reply
  • Becca

    May 14, 2014, 10:31 am

    A viable alternative is Gerson Therapy. It is a complete lifestyle change, requires a caregiver, and has its own risks. It is not for everyone, but if you looking for a serious alternative, there is one.

    It is not easy! And some people are not candidates.

    Reply
  • Brianne

    July 8, 2014, 5:02 pm

    I’m new to this but happy to find this community. I was diagnosed with RA at 8yrs old, remission a year later until I was 18 and am now 31. I went on Celebrex at 18 (the law-suit one- the horror stories are true I almost had a heart attack). Then went on Enbrel (22yrs-29yrs). I strongly suggest doing your research, listening to your body and keeping a journal of every single ache, sore, cold, good/bad day, weather, food etc. For me Enbrel was a miracle until it made me chronically ill for 5 years and gave me lupus (which thankfully went away once I cut back dosage). I also know a couple people who now have lymphoma from Enbrel. 1.5 yrs ago I pursued Alt. med and have never felt better in my life with: acupuncture, Chinese Herbs (research the success of herbs!), diet/exercise & smoothies which I load up on turmeric and ginger as well as vitamins. I just had my first flare and I can’t tell if it’s from: the crazy storms we’ve had (I’m sensitive to low pressure), a cold I had, or my body going through from going off birth control 6 months ago. But I am taking extra care and stepping up my routine and it’s getting better with the weather & hormone supplements. Every RA case is different and therefore every treatment is different. Find good doctors no matter which path you take and become very in-tune with your body. good luck (hug)

    Reply
  • Catherine

    July 19, 2014, 10:12 pm

    Hi Niki,

    I was diagnosed two years ago and tried quite a few things before landing on Enbrel. I refused methotrexate and am happy, healthy and pain free! I also try to do a lot natural supplements. I’m gluten free and mostly dairy and meat free as well except for some seafood and occasional cheese. I recently stopped taking NSAIDS including Advil since they are known to cause leaky gut syndrome which is what I believe is one of the main causes of my arthritis.

    Best,
    Catherine

    Reply

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