Alternative meds for ra: Do many people treat ra with... - NRAS

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Alternative meds for ra

gnstric66 profile image
54 Replies

Do many people treat ra with meds other than dmards or biologics? How successful are other meds ?

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gnstric66 profile image
gnstric66
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54 Replies
AgedCrone profile image
AgedCrone

In a word .....No....Dmards including Methotrexate are the Gold Standard treatment the successful treatment of RA/RD.

If you look at some of the NRAS Leaflets .....treatments available are well described.

in reply to AgedCrone

My gran had RD in the bad old days when the only thing was Aspirin. 🙄 All her joints were badly damaged. Ulnar drift in both hands, she walked on the inside of her feet due to ankle damage. And she developed heart problems. You could try it if you want, but I don't advise it.

gnstric66 profile image
gnstric66 in reply to

Yes I definitely believe that meds worked I have been on dmards 24 years

AgedCrone profile image
AgedCrone in reply to gnstric66

We all have the choice.....like you..I’m happy with the choice I made

To take the drugs my Rheumatologist prescribed.

gnstric66 profile image
gnstric66 in reply to AgedCrone

Yes I definitely know that dmards work after having low white blood count I have been concerned that I may have to find another treatment but I hope not

Agoodlife profile image
Agoodlife in reply to AgedCrone

I think you really need to step a bit out of the box. It’s not a question of meds or no meds but combining meds with less toxic remedies instead of looking for new meds.Many LDN users use hydro and Mtx and have left anti inflammatories and ALL pin medication. Many have left PPIs and started taking natural rememedies with good success and so on. ITs always a question of knowing your body and your problems before you start treating them.

AgedCrone profile image
AgedCrone in reply to Agoodlife

As I said, we all make our own choices-and we live with them. Together with my doctors I have chosen my box & so far I am happy with the choice I have made.

I don’t need to supplement my RA meds....except for an OralVit D spray from October to April.

Should the day come when I’m not doing well, I will take steps, together with my doctors to do something about it.

Right now I only need to spend 4 days per year having infusions to feel as well as I do.

I eat well, exercise, drink wine & live a really good life.....with no ongoing joint damage.......what’s not to like about that?

Tbh, I think a lot of people on this forum would settle for that in a heartbeat.

So as I said..let’s agree to disagree.

Lolabridge profile image
Lolabridge

Preventing further damage to joints is crucial and only DMARDS and biologics can do that. I suggest you watch the NRAS webinar by Dr James Galloway for those recently diagnosed with RA. It should be available on their site later today.

gnstric66 profile image
gnstric66 in reply to Lolabridge

Thanks I will try to watch that I do believe that meds work I just wonder what people do if they become unable to tolerate them anymore

Agoodlife profile image
Agoodlife in reply to gnstric66

Unfortunately big pharma with all its research funds and influence has not found an answer to this. It seemed that when meds no longer work or have not succeeded to work from the start, that the treatment turns to cortisone that is condemned before even starting RA meds.

Lolabridge profile image
Lolabridge in reply to gnstric66

New meds are being introduced all the time. If your Rheumy can’t find a current one that suits you and your RD is still active perhaps you could offer to trial something under development?

Agoodlife profile image
Agoodlife in reply to Lolabridge

New meds and new side effects and new risks and new discarded meds......In my view a dangerous treatment path to choose....

Mmrr profile image
Mmrr in reply to Agoodlife

But less so than untreated RA

Agoodlife profile image
Agoodlife in reply to Lolabridge

I can only recommend those I have tried and have really helped. Against pain, gut problems as examples. These are non toxic and minimal side effects if any. Most of the meds we take for these problems make these conditions worse.

youtube.com/watch?v=gxf_bRA...

Here is a lot of good info on how LDN can help and why.

gnstric66 profile image
gnstric66 in reply to Agoodlife

Thank you for this I have never heard of this treatment for ra. I will look into this

Agoodlife profile image
Agoodlife in reply to gnstric66

If you want pain relief without hard meds and side effets, really something to try and listen to. Its really worth it.👍

Mmrr profile image
Mmrr in reply to Agoodlife

With no joint protection

Agoodlife profile image
Agoodlife in reply to Mmrr

Many take Mtx with LDN . Need lower doses.I don’t. I don’t think I’m worse off with my joints than many on this forum with their arsenal of RA meds pain meds and antiinfammatories.

KittyJ profile image
KittyJ in reply to Agoodlife

But you do take pred though Agoodlife, that’s what I don’t understand.

Agoodlife profile image
Agoodlife in reply to KittyJ

Yes I do 6 mg. I do not think this can be ciompared with the abundance of meds most are on. I am working at lowering and finding alternative

Mmrr profile image
Mmrr in reply to Agoodlife

But prednisolone has side effects and does not give the same joint protection, so not the way to go for many people. If I have to take a med, it has to give me the best protection that I can get.

Agoodlife profile image
Agoodlife in reply to Mmrr

If there was a med that really gave you the best protection without all the risks and side effects known today it would be an other thing.I haven’t really seen one yet.when you look at the whole picture. Low dose pred is quite innocent in comparison.

medway-lady profile image
medway-lady in reply to Agoodlife

No it isn't reed can cause Osteopenia and gives a false sense of wellness. I had it in high doses for another illness and its very hard to taper off and that in itself tells the story. Taper because the body can't tolerate a sudden stop. It is a steroid for goodness sake !

KittyJ profile image
KittyJ in reply to Agoodlife

But we aren’t comparing amount of meds, you said you don’t take any RA meds. You shouldn’t mislead people by saying you don’t take any meds for RA when you do. It’s fine to take pred if that’s what you want to do but you should be clear about it 😊

Agoodlife profile image
Agoodlife

I do with good results. Have often told you about these on the forum. They are non toxic alternatives that are proven in research to have an effect on decreasing inflammation an supporting the immune function and good metabolism.

AgedCrone profile image
AgedCrone in reply to Agoodlife

Sorry to disagree with you ......but if that was true the NHS and other worldwide health services would not be spending £billions no £trillions on research to find drugs that are better than DMARD’s and biologics.

Look how in the last 10 years biologics have improved so many peoples lives-including mine.

I’ll go along with the all the highly qualified rheumatologists and all the research that is constantly being done rather than take my chance with a few herbs!

If you watched the webinar last night you would’ve seen an eminently qualified rheumatologist say that sadly there is no proof that diet has any curative properties for rheumatoid arthritis! I’m sure that includes supplements as well. Fair enough if you think anything you take helps you deal with your rheumatoid arthritis and your doctors are happy with that ....of course go ahead take it........but please don’t try and persuade us we do not need to take Dmards or Biologic drugs...because we do.

I’ve gobbled up almost every RA drug under the sun in the last 20+ years, And from what I read on here I am doing far better than those who refused to take their recommended drugs.

But thank goodness ....it’s a free world.... We can all make our own personal choice which drugs we choose to take and which we choose to refuse.

Agoodlife profile image
Agoodlife in reply to AgedCrone

Without going into complicated explanations the only thing I can come back to is “ money talks” and only independent research with as little bias as possible can keep it at ams lenghth.

AgedCrone profile image
AgedCrone in reply to Agoodlife

Go ahead with explanations ....but “money” discovered biologics didn’t it ....& Dmards?

I & I am sure many others are very grateful they did.

In this day and age independent research is a pipe dream unless Bill Gates turns over his complete foundation to researching solely rheumatoid arthritis drugs ....even then, I don’t think any of us would be alive to see a successful result!

We have to be grateful to the scientists who are plodding away at the research.....I reckon they earn every penny..... I do regret that not everybody in the world will be able to benefit from them.

But then who said life was fair?

Shalf profile image
Shalf

For me - Both!

I call meds 'healthy lifestyle!' For me, it doesn't work on it's own. Currently and for a good while now, my disease is aggressive. I hope when controlled with drugs I can maintain it with much less toxin and more healthy food, exercise, sleep and less stress.

Lolabridge profile image
Lolabridge in reply to Shalf

My RD was very aggressive and sero positive. I eat healthily and take supplements recommended by my kinesiologist. But my RD symptoms are beginning to return and I know I need another dose of my biological and soon or I will be immobile again.

Sorry but I think there are very few people with active RD who can cope without the recommended drugs AND avoid further joint damage.

Shalf profile image
Shalf in reply to Lolabridge

Totally agree. Always hopeful that it will go into remission.

Agoodlife profile image
Agoodlife in reply to Lolabridge

Unfortunately if you keep popping supplements without having a clear plan for how they will help and work together I don’t Think they will help much. I did that in the beginnings. Not until I I understood the more holistic picture after A LOT of research, leaving many of the wonder supplements, did I started getting anywhere.

Lolabridge profile image
Lolabridge in reply to Agoodlife

I agree.. That’s why my kinesiologist and I have researched very carefully before deciding which supplements my body needs.🤓

Agoodlife profile image
Agoodlife in reply to Lolabridge

There are different levels of knowledge. How much does your kind have in biochemistry and what normal metabolism requires on a cellular level? Would be interested to hear what supplements you are taking and why.

in reply to Shalf

Going back to my gran, she lived in the country, kept chickens and rabbits and all her food was home grown and additive free. Didn't drink or smoke, but her RA was VERY aggressive. If healthy living is the answer, why did she suffer so much? 🤔

Shalf profile image
Shalf in reply to

Of course it's not the answer, if only!.

What I would want is my energy back to allow me to exercise more. I eat very healthy, don't get restful sleep. If/when the drugs give me that and hopefully put me into remission then I would maintain that healthy living so much more than I did pre RD. I guess staying away from inflammatory foods, stress and things the Rheumy says can make it worse. More sleep!! Please!! :)

Agoodlife profile image
Agoodlife in reply to

So many things affect the outbreak of RA, stress being one major one. She did have a lot of things on her plate taking care of everything. Many things we do not know about her life....

in reply to Agoodlife

And you never will. She passed away aged 86 of heart disease, in a nursing home.

Mmrr profile image
Mmrr in reply to Shalf

Like many on the site I had the healthy lifestyle when I became ill. We all know other things such as stress, falls, infections play a part in the spark that sets this disease going, and yes living a healthy lifestyle helps with well being and drug efficacy. But living a healthy life doesn't stop RD. I wish.

I'd be writing this from the top of hills if it did (no wait, I wouldn't be writing it all, I'd be doing other stuff ⛷🏊‍♂️🚴‍♀️🤸‍♀️🧘‍♀️🎑🎇🛫🛬🚊🚗🚄⛺⛼🌇)

😂🤣😂🤣

Shalf profile image
Shalf in reply to Mmrr

Your right, very true!

gnstric66 profile image
gnstric66

Thanks for all your comments everyone! I have had ra for 24 years in that time I have taken two different Dmards combination Methotrexate and Plaquenil which has worked very well for me for all that time, a year-and-a-half ago I started having problems with white blood count being way too low . I went into a study and I'm trying the new medication bilolgic Rinvoq + 6 Methotrexate per week two weeks ago the white blood count was really low again so the reumatologist told me to stop all medicine for two weeks and recheck. I really don't know what to expect I'm hoping that it will come back up and be normal and I can continue on with dmards, I am having some other side effects with the new medication so I'm not sure that the biologic is good for me. I feel as though I don't have good communication with my rheumatologist he doesn't really tell me much about what to expect thanks again for all your comments

nomoreheels profile image
nomoreheels in reply to gnstric66

I don't recall where I read it but I'm pretty sure Rinvoq can affect WBC count. I can't think I'd have remembered that if it wasn't right. You'll obviously be well monitored with it being a newer JAK inhibitor, as they've proven, but I hope once you restart it, if you do, that it works well for you. Sounds as though you & your Rheumy need to clear the air & that way hopefully communication will improve, after all you're the one taking the meds, he should take time to make you aware of possible side effects at least.

All the best. 😊

I was diagnosed 32 years ago, and sometimes I feel as though it's a competition to decide who's had RD longest, or who's is the most aggressive. I started on NSAIDS, then when referred my rheumy gave me my first DMARD which worked wonderfully. But I got lost in the system when my then rheumy emigrated and his replacement 'forgot' to send me an appointment. Then I was given MTX which I had to stop while I had chemotherapy. After cancer treatment I found I had Osteoarthritis and Vasculitis, followed very quickly b Osteoporosis with 4 vertebral fractures. Can't walk, can hardly stand and I'm thoroughly fed up with the one-upmanship on here. It's a pity really, because NRAS is brilliant and there are some wonderful people on here. Current drugs, Leflunomide for RD, MTX, long term Pred for Vasculitis, and Bisphonates for OP. Shan't mention my non RD problems, too many. I probably sound bitter. Yep, I am.

gnstric66 profile image
gnstric66 in reply to

Thanks for responding, I just found this forum recently and this was my second post, Im just hoping I can find some answers to issues that i have here. just knowing what others go through with ra and other disease and treatments is helpful. I live in US and have high out of pocket cost on insurance so I havent been able to take biologics until now since I began this trial.

nomoreheels profile image
nomoreheels in reply to gnstric66

Don't worry gnstric66, we usually all bob along nicely but one subject that is sure to be divisive is traditional meds v alternative or natural products, & diet of course. Not that this was what you asked for but it has progressed there. I'm sure you'll enjoy being here, I hope so anyway.

I wonder, have you discussed other traditional DMARDS such as leflunomide or sulfasalazine? They are cheaper but I don't know if they'll be effective fo r you as you are now. There are also anti-TNF's, biologics & JAK inhibitors, at least 2 more other than Rinvoq (upadacitinib) available here in the UK, I'm not sure about the US I’m afraid.

gnstric66 profile image
gnstric66 in reply to nomoreheels

Thank you, yes I am enjoying this forum. I will definitely discuss these other cheaper dmards with the ra dr. soon if I cannot tolerate the rinqov and have to leave the trial study I am on now.

Shalf profile image
Shalf in reply to

That's way too much for any person to cope with. Hope your treatments are working for you. Life can be so unfair. xx

gnstric66 profile image
gnstric66 in reply to Shalf

Thank you so much!

nomoreheels profile image
nomoreheels in reply to

I'm puzzled poems, I think those who have mentioned length of time since diagnosis, severity etc have only done so in passing, to support experience of different meds etc. Certainly not labouring the point as far as I read it. After all you said how long ago you were diagnosed, which additional conditions you have/had etc, so could that in the same vein not be considered 'oneupmanship'? Actually I don't, I see it as you providing a précis to support your experiences. I'm not sure this reply was helpful or even relevant considering the OP is a new member & asked a simple question, if there are alternative medications for RD other than cDMARDs or bDMARDS. There was no mention of alternative treatments so perhaps some misread the question & thought she was asking for recommendations of non traditional meds or treatment. Maybe we can just forget this & go back to all being in the same boat supporting one another. It's hard enough as it is without falling out over nothing really don't you think? You especially considering how difficult everything is for you.

Take care. 😊

I hope it's successful for you.

gnstric66 profile image
gnstric66

Thank you!

ircmannj profile image
ircmannj

I'm trying both ways. I've been taking 15mg Methotrexate and it has made a huge difference during these past 6 weeks. I'm also thinking about starting the paddison program this week and see how that goes along with the Methotrexate. Hopefully at some point I'll be able to leave the Methotrexate and achieve drug-free remission with exercise and nutrition.

KittyJ profile image
KittyJ in reply to ircmannj

But how would you know if it’s the Paddison diet or mtx relieving symptoms ?

ircmannj profile image
ircmannj in reply to KittyJ

Only time will tell. Then again, my rheumatologist told me that if my symptoms subside he will decrease the dose up the point of getting me off the Methotrexate. At the end of the day, I have nothing to lose if it ends up working, as it has for so many!

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