Posted , 36 users are following.
Hi I am newly diagnosed with RA.
Feeling bulldozed into taking medication with no other options offered.
My instinct says NO! it can't be the only option to poison my body in such a extreme way.
Has anybody else chose not to take the meds? and how do you feel ?
3 likes, 74 replies
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kathy4551 pepperpot33
Posted
I understand what you mean. I was diagnosed with RA one year ago and have been on methotrexate ever since. I have stopped it several times when I had infections. I took my morning dose this past Saturday. I felt terrible all day, nausea, stomach problems and running a low grade fever ever since. Needless to say, I did not take my nighttime dose. And I feel like never taking it again. I have aches in my hands and feet and the nausea gets unbearable. Of course, the doctor is going to tell me do not stop taking it. I just don't know if I can do it anymore. 🙁🙁🙁
Me22 kathy4551
Posted
Hi Kathy,
I'm Victoria. I was diagnosed Nov 2014. I started out on Methotraxate, Prednisone and Embrel. The Methotraxate side effects got worse and worse as time went on. I would have moments (days) of full exhaustion, bed or couch ridden, and flares that you could set a clock by. Keep in mind, I work out 3 days per week and eat CLEAN. No processed foods, no fast foods, no red meat, no pork, no white flour, salt or sugar. But despite my clean eating and regular exercise, my cholesterol was creeping dangerously up (a side effect of a biologic). My blood pressure was always elevated to a point of where my PCP placed me on medication for that too!
I advised my Doctor after all of my hair fell out (it took 3-4 months, but when it did, wow!), that I would no longer be taking it. He then prescribed Meloxicam to go with Embrel and Prednisone. I took this combo until I decided that I wanted to try Xelijanz. Ironically, Xelijanz was worse. My flares happened weekly. Bad ones. Much worse than when I was first diagnosed. After taking Xelijanz for maybe 5-6 months, a job change and subsequent loss of insurance left me with ONLY Meloxicam and Prednisone.
During the 9 months that I wasn't taking any real medication for R.A. I of course got worse. Unbearable pain and stiffness. While waiting for new insurance to kick, I was also forced to look at natural food choices, natural anti-inflammatory foods/juices/smoothies/spices&herbs.
By the time my insurance kicked back in, I had researched and read so much about R.A. and the typically prescribed POISONS that I knew I absolutely would not go back on any of them, there had to be another way.
In conjuction with my research, I too (just like pepperpot) watched "What The Health & Forks Over Knives" and set out on my Vegan journey for 2 months which was AMAZING for my body/health. Just to SEE if I could reduce my inflammation internally. Not trying to push the Vegan movement, but I can testify in a court of law that it absolutely helped me.
When I finally went in for my check up (with new Insurance), I advised my Doctor that I wanted to try Sulfasalazine, (I had researched alternative drugs for RA/non-biologics), he nearly flipped his wig. You could immediately see his B.P. rise as I stated that I didn't want to go back on Embrel, I didn't want Xelijanz, and I sure as heck would not take Methotraxate ever again. He even ordered MRI's to see if I had any damage in my joints (Feet, Hands) to try and plea his case to get me back on a biologic! The tests confirmed no joint damage by the way, he finally wrote the prescription for Sulfasalzine and this brings me to today.
It took a full 4-6 weeks or so for the medicine to kick in, but when it did I tell you that I feel better than ever, nearly as good as before my Diagnosis; Sulfasalzine works for me. This is an old drug from before they even had a Biologic and it's given to pregnant women who have Arthritus, so it's alot safer than anything R.A. physicians push.
I take 2-3 pills per day (Sulfasalazine). I space out Prednisone (trying to get off it), but for now I take it maybe 3 days per week in a 2.5 mg tablet (only one). I also still take Meloxicam 3 or 4 days per week, 1 tablet on those days. I am still following the Vegan lifestyle 80% of my meals, but I added wild caught fish so I suppose technically, I'm Pescatarian. I'm back to my 3 day per week workouts. My hair grew back. My energy levels AMAZE me everyday. I used to be SPENT by early evening, but now I am (normal) until late evening if I choose to be up. I feel really good.
I typed all of this to say that there are choices. You can choose a different route. And to back up what pepperpot33 voiced, your food consumption matters with R.A. Even if you don't go full blown vegetarian or vegan, eating clean even 1/2 the time can help. And don't be afraid to challenge your Doctor. Do what's best for you.
Debkimly pepperpot33
Posted
andrea64407 pepperpot33
Posted
Hi Pepperpot. You are spot on, though not taking any medication will not make your RA disappear, there are reasons why you have RA.So you will have to change your lifestyle & diet in order to manage your RA. I can only wish someone would have told me this all those years ago, as it would have saved me from 3 years of pain, misery & stress.
I am 54 years old, and have
had severe RA & was an invalid for 13 years. After 13 years of (dangerous) medications, inflammations & pain, I decided enough was enough & started doing research myself, as it was clear to me that doctors don't have the answers, nor the cure. I'm now no longer on any medication, in hardly any pain, exercise daily & have much more energy. Docs say I'm I'm in remission.I think it's a great idea to listen to yourself & your gut instinct, only wish I could turn back the clock and do the same. Try not to let doctors and others scaremonger you, I was scared for all 13 years, and was told I'd be in a wheelchair before long, etc, and was definitely heading that way. The medications all had lots of serious side effects, and my weight, blood pressure & cholesterol all shot up dangerously. What changed it all for me was simply watching 2 documentaries: 'What the Health', and 'Forks over Knives'. I would strongly advise you to watch these, don't be discouraged when googling them, it's only an hour or so of your time & it can save you from a life time of misery. People, especially those in the medical profession, will have a very negative attitude towards wfpb, but the are not the ones with RA, and are not taking all the medication, so try to think & act for yourself, you already seem to be doing well.
Btw, not only am I off all meds, I've also lost 50lbs so far.
Wishing you the determination & strength that you need, take good care of yourself, good luck !
LeanaBeana77 andrea64407
Posted
Hi Andrea. What about the anti-inflammatory diet? I read the book The Autoimmune Solution by Amy Myers and found it very convincing. I have done similar diets in the past and my symptoms were better. I just need the willpower to stick with it.
I am running out of medication options because I keep having bad reactions. My doctor is treating me like I'm a weirdo for being so sensitive, but I expect it's more common than she's making it sound.
andrea64407 LeanaBeana77
Posted
Hi LeanaBeana,
In an ideal world, doctors should treat their patients with respect, and should be strong and honest enough to be able to admit that they don't know everything.They definitely don't know much about nutrition, as that didn't feature in their medical studies, nor do they know how to cure patients.
They have only been taught how to suppress chronic illnesses with strong medication, as, in regular medicine, there is still no cure for chronic auto-immune diseases like RA or Lupus, etc.
I, too, had a rheumatologist & a GP who both became upset & quite angry with me, when I informed them that I was considering the WFPB lifestyle/diet. They used words like 'irresponsible', etc, and were actually mocking me, as if I was a child & gullible. I told them that it was my life, that I was the one with the serious chronic illness & that their way, with all the meds, was clearly not working, so that I was willing to try another way.
Then they began the scaremongering, telling me I'd end up in hospital, and would do serious harm to my body, how dangerous it was, etc.
I decided to find some good doctors, (and there are, of course, good ones out there too!), and have never looked back, one of the best things I ever did !
As for Amy Meyers, she's not bad at all, but not perfect either, but that's my personal view.
I can only speak from personal experience, that I truly believe the WFPB lifestyle & diet is the way to go, especially for us with a severe inflammatory auto-immune disease. Only wish I'd known this 13 years ago, as it would have saved me from a lot of misery, from taking dangerous medication, from then developing high blood-pressure & high cholesterol, from becoming obese, from being miserable & last, but definitely not least, from having a lot of pain, not being able to move much, and from being an invalid for all those years.
Maybe it's a good idea to google it yourself, and watch the documentaries I recommend (Forks over Knives & What the Health). What is also very interesting & good to watch is the seminar
Dr Mc Dougall gives on Youtube on inflammatory diseases. Here's the link:
https://www.youtube.com/watch?v=ldsMEHV8OxI[/b]
And, bad reactions, I've had a lot of them too, do bear in mind that all those meds can't, and will never cure you, and, even though they can appear to be a quick fix by suppressing the symptoms of the illness, their side-effects can be really serious & devastating, amongst others, can cause serious heart problems & lung problems.. Fact is, you can't just not take meds, you will have to replace them with a total change of lifestyle & diet, and, if you go for it, as I have done, I'm convinced that will work.
Maybe you can just try it a month, or so, and take notes of all changes, and then decide whether it is for you.
I hope your bad reactions will disappear & wish you all the best.
Good luck, take care
LeanaBeana77 andrea64407
Posted
Thanks andrea. What do you dislike about the Myers approach? I'm thinking it's the animal products, but I don't want to assume.
My liver enzymes are still high over a month after being off Enbrel so my rheumy no longer thinks Enbrel is the cause. So confusing. She advised me not to go back on any RA med until I see the liver specialist on 1/22 just in case.
saisha36680 pepperpot33
Posted
i have also started taking organic supplements and over time my medicine is actually reduced.
If you need more info on my organic supplements and diet, let me know.
claudia59157 pepperpot33
Posted
I currently take plaquenil for my RA, and my Rhemy suggested that I take Methotrexate too! I'm not a fan because of the toxins. I'm 109 lbs. 5'3" and healthy. I work out 2-3 times a week. RA is in my right hand mostly.
I don't know what to do!!
Me22 claudia59157
Posted
Hi Claudia! I'm Victoria.
Listen, we're the same height, but I weigh 150lbs. I work out 2-3 times per week and eat VERY clean. My R.A. is 95% mainly in my right hand as well. I was diagnosed Fall 2014. From Fall 2014 to Fall 2016. I went through METHOTRAXATE, EMBREL and XELIJANZ. It was a horrible experience.
Methotraxate is basically chemotherapy in pill form. No side effects at first, but as you continue to take it and it builds up in your system, you wiill see several side effects and especially hair loss - just like Chemo.
Also weakness, fatigue, nausea, hair loss. For me anyway. And the hair loss didn't happen for several months. I thought I was doing ok, then all of a sudden the shower floor was holding lumps of my hair.
By the time I learned this about Methotraxate, I had been taking it for 6 months or so and I stopped, myself without the Doctor's permission. I advised him during my next visit that: I'm not taking Methotraxate ever again, I no longer want to take EMBREL and please prescribe me Xelijanz.
Xelijanz: A pill, more convenience, but for ME it was less potent than Embrel. I started having (literally) WEEKLY flares. Flares worse than when I was first diagnosed. It would be fast onset of pain/weakness in my neck, shoulders. I couldn't raise my arms above my head. It was terrifying! So, I stopped using Xelijanz. Ironically, I also lost my insurance in between jobs at the same time. Eventhough, there is co-pay assistence that would have left me paying like $10.00 (only). I took it as a chance to make some lifestyle changes and research alternatives.
My next visit I advised my R.A. Doctor that I wanted to TRY Sulfasalazine. This after I researched for days and hours, every medical publication that I could find, looking for the MILDEST, LEAST SIDE EFFECT, R.A. Medications. That is how I found it.
It takes 4-6 weeks to kick in, so I also took Meloxicam with it. Back to Sulfasalizine - they give this to pregnant women who have R.A. That gives you a HUGE clue to it's mildness.
I started in August 2017, and I feel GREAT! I feel HEALTHY. Now, I also no longer eat meat - I went Vegan for two months then Pescatarian. I don't eat processed foods at all. No fast food unless it's Panera or a Fresh To Go or something similar. It's ALOT of work, it took 4 years for me to get HERE, but any way that you can reduce inflammation NATURALLY, only HELPS your R.A.
I had xrays on my feet, wrists, and hands and there's no joint damage. (August 2017)
The CATCH PHRASE as I call it, that the doctor kept repeating since 2014 to me was: "Prevent further joint damage". When all along I had -0- joint damage. My doctor (I can't say all), but my doctor was VERY adament that I stay on a BIOLOGIC (Embrel, Xelijanz, Humira) and Sulfasalzine does "prevent further joint damage" just like the harsher medications. But I felt that it was MONEY MOTIVATED. Doctor's get kickbacks from the Pharmaceutical Reps and their companies for each patient placed on these high dollar drugs. Embrel is like $5,000.00 per month (not to us) but that's the cost. What's his commission on that?
Just please do your research, talk to your physician (if you are going to stay with him or her) and express your concerns. There is no harm in TRYING IT. (Sufasalazine) Give it 3-6 months and see how you feel. All our bodies are different, but remember it IS YOUR BODY, not theirs. Wish you all the best!!!
claudia59157 Me22
Posted
Hi Victoria,
Thank you so much for your story. I will certainly weigh my options. I didn't know the different choices of medications for RA. I will certainly research every one of them.
Good luck to you as well!
Claudia
elizabeth52361 pepperpot33
Posted
There was no way I could have made it without meds, my pain was unbareable predisone helped me so much, i was prescribed pain killers in the beginning and I wouldn't take them because I didn't want to get hooked on them. Its been almost a year now I take methotrexate, predisone (when needed) and folic acid.
If you can go thru the pain with meds that's great but please keep in mind the meds help stopped your joints from becoming deformed.
Me22 elizabeth52361
Posted
Totally agree Elizabeth!
When I say without harsh medications, I am referring to (Methotraxate, Embrel, Xelijanz, Humira, .. etc).
I do and will continue to take (as needed): Sulfasalazine (it is a DMARD) and it does prevent further joint damage: WebMD: "In addition, delayed-release tablets of sulfasalazine are used to treat rheumatoid arthritis. Sulfasalazine helps to reduce joint pain, swelling, and stiffness. Early treatment of rheumatoid arthritis with sulfasalazine helps to reduce/prevent further joint damage so you can do more of your normal daily activities".
I do also take sparingly "Meloxicam Prednisone 2.5 mg." My posts on this topic always included TAKING your medications. I just wanted to communicate that R.A. Physicians (not all of them), but many of them jump straight to prescribing medications that have horrible side effects, kills good cells and make you feel horrible (if you are a healthy/active being) - versus educating us as (individuals) on milder R.A. drugs that also work just as well.
claudia59157 Me22
Posted
Fortunately, I've never been in any pain since I've been diagnosed with RA 4 years ago. I've never had to take any pain relieving medicine. I'm only taking Plaguenil. I was prescribed methotrexate. Took one dose and got off of them. Started feeding anxiety and palpitations. Do you know of any milder RA meds?
lisawilly pepperpot33
Posted
Hi all..
I was diagnosed with RA about 8 years ago. I've never been one for taking drugs, so i started to do my own research. I discovered the principle of metabolic typing, started to eat the correct foods for my body and within 2 days i could see the swelling of my finger joints reducing and within a week i had no pain or swelling. This dietary change also ended the IBS i had for about 15 years. Today I am still pain free although eating too many grains or nightahade veggies can make me a little uncomfortable. The disease might not be gone but i feel pretty fit and healthy now. I don't take meds for anthing and as a bonus i now very rarely get a cold or headache. I shared metabolic typing with 2 other folks with RA and although they had different food lists to me they also had the same rapid cessation of symptoms. And they are both now off meds. So it wasn't just some crazy fluke. :-) A good place to start for anyone with RA is to remove all processed foods. That will remove most of the worst triggers which are (in no particular order) wheat soy corn dairy nightahade veg (potatoes tomatoes chillis peppers eggplant ) sugar and seed oils. If you can totally elinimate the above you may find a reduction in symptoms. BTW the oil thing is crucial! Those seed oils are highly inflammatory. Better to cook with coconut oil butter duck fat lard or dripping. Dont believe me? Google the cholesterol myth. You need animal fats to repair the damage done by a diet too high in grains and other carbs. Good luck :-)
dorothy33988 lisawilly
Posted
lisawilly dorothy33988
Posted
I've recently gone under the care of an integrated GP and he has had me tested for pyrrole disorder and I'm positive for this. I would suggest anyone else with RA have this test also. A positive diagnosis means you don't break down some of the metabolites of haemoglobin production and this then interferes with uptake of zinc and B6, leading to all sorts of trouble as these nutrients are important for many processes - zinc is important for digestion and immune function. What is RA? Immune system gone mental. Although i no longer have irritable bowel or RA symptoms i still have digestive issues, recently i think i passed a gallstone so i am not where i want to be health wise yet. My gut issues (burping mainly sometimes for hours despite not eating trigger foods) are improving. I am far less bothered by them now 3 months into treatment. I am very happy i made the decision not to take meds but to pursue the root cause. It all starts in the gut! That's where you have to take the fight.