What to take???

[Retired16]

Thanks to all of your posts!! After 23 years with RA I have come to take only supplements recommended by RA doc...folic acid! I used to ask about all the others and I swear they have no objection to any but will not go out on a limb and say they’ll help. I’ve decided to not financially support the supplement industry! I think they may work differently on each person so I guess if they help, keep taking and experimenting! I never had that, “Wow, I feel better!” Moment. If I don’t see a need or change in my bloodwork, I don’t take anything. I figure that prescribed meds are enough for my body to deal with! Eat well, keep moving, enjoy friends and family! Life is good!

[Simba1992]

The supplements may in fact help your body to deal with the effect of meds.😊

[Retired16 in reply to Simba1992]

True. That is why I take folic acid. Are there supplements recommended by your RA doc to take to counteract drugs? I’ve taken vitamin D and B12 at different times based on bloodwork. I’ve read great things about some supplements, but never feel confident that I’m getting quality product. Of course they all say they are!

[Simba1992 in reply to Retired16]

There are however supplements not recommended by your doc that could be of help and this is because rheumies very seldom have enough knowledge about how to support treatment with supplements, this I believe is thr main reason for not recommending them.

[Retired16 in reply to Simba1992]

i just feel that if there is scientific proof that a supplement works for RA, they would know. I put a great deal of faith in the medical community and less in the huge money to be made in the supplement industry. Also doubt the purity of most that I could buy off the shelf. I would welcome recommendations in that area.

[Retired16 in reply to Retired16]

Again, if something works and makes a person feel better and shows no problems in bloodwork, go for it!!

[Simba1992 in reply to Retired16]

Oh but there are scientific proof on many supplements, just that rheumies usually not interested

[Retired16 in reply to Simba1992]

That makes me sad for some reason...

[Simba1992 in reply to Retired16]

So sad indeed😢We can only hope that there will be a change in the future but until then we need to do our own research to be on top of things on this front.xSimba

[nomoreheels]

Hiya Retired6, welcome to the HU NRAS site. I'm so pleased for you, it sounds as though you've gone into spontaneous remission if you no longer need meds. I dare say you'll find you don't need the folic acid either as they're usually only prescribed to replenish what is lost from taking MTX. As long as you have a full blood count every so often so you're aware if your inflammation levels rise then good for you! Wish the disease was the same with all of us! Keep having an annual Vitamin D blood test to see if it needs topping up. It often does in winter particularly. Your GP should be able to advise on anything else which could benefit you.

It might be worth discussing daily Omega 3 with him to help keep your joints lubricated. There's nothing else I take supplement wise, except for 5mg prescribed folic acid & Adcal D3, a calcium/Vitamin D supplement because I'm borderline osteopenic/osteoporotic.

Eating healthily & according to what doesn't upset you is excellent, also exercise is important, good for us anyway!

I hope those struggling are pleased for you too, though it is a battle at times we can win the war, must keep that in mind for those out there not yet in the fortunate position you're in. Obviously medically induced or spontaneous remission is the aim but it can take time, if it's ever achieved. As I say it's a shame it's not the same for all of us. It's an insidious disease that can be a you-know-what to bring under control but as you've proved, it can happen.

[Retired16 in reply to nomoreheels]

Didn’t mean to offend and I am considered “in remission with drug therapy.” Weekly Methotrexate, monthly Cimzia shots (biologic replacing Enbrel, Humeria, etc. when they quit working) and recently added sulfasalazine. My point was with supplements. I question purity of most, but if they make a person feel better, maybe they’ve found the right one. My apologies if I’ve offended anyone’s journey to dealing with RA. You might tone down your rebuttal as well. Guess we all need more information.

[nomoreheels in reply to Retired16]

I'm sorry if you saw my reply as a rebuttal, it certainly wasn't meant as one. I didn't think your post was offensive, at all. Misunderstandings seem to be the order of the day as I took your post to mean you weren't taking any meds. I can't add any more I'm afraid as I've already covered my knowledge of supplements. I'm not big on them, I find many quite costly & never sure of the need or quality. The Omega 3 is the only one I've asked my Rheumy about, my others being prescribed, & it was ok'd but we all have different needs I suppose so what helps one doesn't necessarily help another, in a similar way to meds.

I hope you enjoy being here.

[Mmrr in reply to Retired16]

Welcome and no offence taken. Quite the contrary , an interesting post about supplements.

[Ann2020 in reply to Retired16]

Supplements do not have the same side effects as the medicines that can negatively effect your immune system and other organs, and is the reason why people get blood tests every so often. There’s no supplement that I’m aware of, that is even remotely close to the costs of what’s produced by big pharma, that you see advertised in the US. If you’ve never seen a holistic or functional doctor, I would recommend it. I’ve seen both a functional and a rheumy and you get a lot more beneficial information that gives you a more natural approach to dealing with ra, and not just the use of harsh medicines, that often cause other problems. The meds that are pushed through the rheumys, are basically low dose chemo and are also extremely expensive.

[Hidden]

I have spent a fortune on supplements, hoping and praying they will be the 'ones' to change my RA pain or even help a little. I now have to fully agree with you that if any of these supplements were proven to be helpful, then the medics would have prescibed them by now. My husband who is a Consultant (in Gastroenterology) thinks I should stop chasing the dream..........but we're all individuals and there's no right answer. This is a very interesting topic and thanks for raising it.

[Retired16]

Don’t feel foolish; we’ve all done it! I can’t say I won’t be tempted again by a glittery ad and a hopeful promise! Ask your husband about DMSO (a topical for pain).

[Hessie5]

Hi - I was told to take Iron and vitamin D with k2 when using prednisone.

[dbestdeb]

My rheumatologist recommended turmeric which I take in tablet form. It also has boswellia in it and I definitely notice a difference in pain levels when I don’t take it. The other supplements I take aren’t RA related but recommended by my GP to help with other issues. Everyone must find there own path to follow on the journey. Best wishes to you.

[Nanna71]

Also, I am reminded of the claims of those who think foods and herbs can actually stop your immune system from trying to kill you. Really? The most powerful system in your body that is capable of life-changing, life-altering, and in my case, started to shut down basic body functions (temperature, oxygen levels) stuff and someone thinks a plate of broccoli is going to change that? Or vitamins? Outside of the drugs that can do something, all my doctors, nurse practitioners, specialists tell you to be in the best physical shape you can be to help you win the fight. Or, nutrient-dense food and whatever supplements to ward off drug side effects.

I don't do everything right there either, but it sure doesn't hurt me like not taking the medication I'm on.

I totally OD'd on liver the other day. Love liver.

[Retired16 in reply to Nanna71]

“be in the best physical shape you can be to help you win the fight.” How very true!! I go up and down with my success on this, currently down and really feeling it! Whatever you can do will pay off. For me it is as much a mental battle to make myself do the things I know I should, as well as the physical battle caused by RA and the body just getting older! I guess it takes expending energy to feel energized. I know the drugs make me feel better and I try not to think of long term effects. A former rheumatologist (retired now) told me that when one drug stops working for me, research has provided another to try! On their way to a cure, I hope they keep offering relief!

[Nanna71 in reply to Retired16]

I think of it like this: there is the thug that is trying to kill your body. So far, research has found us some sledgehammer drugs that can slow the thug down. What we are waiting for is the cure which makes the thug do a 180, remembers what it was supposed to be doing, and then starts doing the right thing again. Until then, we have these two heavy hitters duking it out in our bodies and we definitely need to be in top shape to survive the fight. I think I spelled 'duking' wrong. Hmm.

[Retired16 in reply to Nanna71]

Good one!! A fight worth fighting!