A little bit of advise would be greatly appreciated

[Seventy7]

I’ve recently been diagnosed with rheumatoid arthritis, the rheumatologist has written to me and recommended I start to take methotrexate. I have A hospital appointment on 17th January. I currently have pain and joint stiffness in my hands, knees and feet and first thing in the morning my feet hurt to walk when I get out of bed, this is made worse by a morton’s neuroma which is very painful. I don’t take anything other than ibuprofen at the moment and I’m managing. If anyone can offer any information or experiences of a drug free approach to RA I’d be grateful, I’m really worried if I start methotrexate it may open a whole new can of worms and cause other problems, thanks

[AgedCrone]

Bluntly Seventy7, drug free treatment of RA is not an option that has seen much success.

If I were you I would accept your Rhematologist’s advice & start taking a Dmard....However, If you speak to your Rheumatology nurse she will explain how a good balanced diet together with the drugs prescribed by your doctor will most likely be the best course to help control your RA....& stop any further joint damage.

Many people here have been on Methotrexate for tens of years very successfully.

I do hope you get to speak to your nurse before you see your Rheumy & décide what you will do.

[lilyak in reply to AgedCrone]

Please listen to AgedCrone. Diet *supports* RA treatment, maintaining a heathy weight, healthy arteries, and you should also do some form of exercise, even if it means bicep curling soup cans, or doing some light squats every time you need to go to the toilet. MOVE your body, it will make a HUGE difference in the long term. Exercise, moving, is far more important than dietary changes. But no one likes exercise. Change your perception of what exercise is, just move your body, don't let aches stop you from moving. Those aches will become disability if you do. Diet can NOT treat RA though. If you have RA, food didn't cause it, and food can't cure it. Also, methotrexate has proven to be a very safe drug, far safer than expected, 20 years ago. The studies have shown it. Most people have no or mild side effects. And all side effects are reversible when you stop the medication. Your RA is mild now, don't wait for it to be severe...the damage may be done. Listen to your rheumatologist and remember that they give methotrexate to people with skin conditions, for osteoarthritis, for many, many things. It is NOT chemotherapy in these doses and it is very safe.

[AgedCrone in reply to lilyak]

I think you meant this for Sevrnty7?

[lilyak in reply to AgedCrone]

Yes, of course. I was backing your advice?

[lilyak in reply to lilyak]

I’m so sorry. I didn’t reply to the thread correctly. Because that’s the most important thing. Wow. Just wow. I have no idea why you’re upset.

[nomoreheels in reply to lilyak]

Is MTX prescribed for Osteoarthritis lilyak?

[lilyak in reply to nomoreheels]

Yes. Small studies have investigated its potential. Search google scholar, or see here medscape.com/viewarticle/83...

Mtx is very safe.

[helixhelix in reply to lilyak]

That was a very small study for a very short period of time, with very limited results. It was not a double blind study either. The conclusion was that there is insufficient evidence to recommend as a course of treatment for OA at the moment. Don't get your hopes up.

[nomoreheels in reply to lilyak]

Yes lilyak , a quick search found 2 research studies, but unless I’m mistaken MTX isn't being prescribed to treat OA. I was diagnosed with both RD & OA at the same time & I'll have taken MTX for 11 years later this year. My OA doesn't respond to it unfortunately.

[lilyak in reply to nomoreheels]

No, its not, it has been investigated. That's how safe mtx is, its being prescribed for all sorts of things, not just RA. thats my point, very safe drug. Yet people continue to fear monger and frighten newbies. Talk to your doctor. Biologics are far riskier, and have far worse side effects, but most people can't wait to take a bio. Mtx is a great medication. It helps most people. It gets a bad rap. Now, what's your point? MY point is mtx is safe. SO safe, its being investigated and used for many, many things. I have a friend who has a skin disease, causes brown patches. Purely cosmetic, she takes mtx to prevent the spread of the patches. Cosmetic. She's not scared of mtx in the slightest, because she listened to her doctor. Mtx is safe, when taken as prescribed. Listen to your rheum.

[nomoreheels in reply to lilyak]

If you read my reply again you'll see I’ve been prescribed MTX for nearly 11 years. I have no issue with it, it's been a very good med for me. I'm not sure why you'd think I’d frighten anybody about it, in fact the opposite is true, I've attempted countless times to calm the fears of anyone new to it who is concerned about starting it. So, you see we’re singing from the same hymn sheet, I wasn’t in need of reassurance. What should probably be made clear though is it's not prescribed for Osteoarthritis. Thank you though.

[lilyak in reply to nomoreheels]

Wow. Mind blown. Glad we agree. I have to do some work now.

[nomoreheels in reply to lilyak]

☹️👍🏻

[Juliachoo in reply to AgedCrone]

Agree with Agedcrone, drug free treatment of RA is not an option.. you are risking dreadful damage to joints without medication! Xx

[JFlay]

Hi, AgedCrone has given sound advice 👍 Here is a link to NRAS, lots of information, videos and booklets to download on there if you haven't already had a look. All the best.

nras.org.uk/

[helixhelix]

Do you know much about RA? I had never even heard of it when I was diagnosed so I really didn’t realise the implications of it being a systemic disease. It’s not just pain and stiffness in hands and feet but unless controlled it can go on to affect your eyes, your heart and lungs. The suggestion above to look at information from NRAS is a good one, as they give balanced information.

The other thing to think about is that there around 400,000 people with RA in the UK. Since there is only anecdotal evidence of people having success with diet my guess is that maybe 1000 of them are controlling their RA with diet and supplements. That’s 0.25%. If you were offered a treatment that had a likely 99.75% failure rate would you risk permanently damaged joints for that?

Having said that, some people do manage. Perhaps they had a relapsing remitting form of RA, perhaps they were even wrongly diagnosed, or perhaps it was the right treatment for them. But everything I’ve read of these extreme diet success stories shows that it is not an easy option. You can't just buy a pill to take once a day and that’s it. It requires a complete change of lifestyle, and permanent strict adherence to a restricted set of food choices.

What does seem to have the greatest success anecdotally is people who take a parallel approach. So they clean up their lives alongside taking the drugs. And then once the disease is controlled and in remission they slowly taper off the drugs. (I did the first bit, am in remission, but have never managed to taper off drugs....).

As Lilyak says, its not just about diet. Exercise, sleep, body weight, and stress management are all as important alongside a healthy diet for helping you manage RA. So I would never say don’t do this, just don’t waste money on extreme programmes and expensive fad supplements. Stick to the basics. No processed food, lots of fruit, veg and fish. And very little fatty and sugary foods, or red meat. It’s a standard approach for health and it will help you. It helps me, as despite RA and lots of drugs I’m pretty healthy and with no drug side effects.

Good luck.

[Seventy7]

Hi thank you all for taking the time to reply. I guess I still can’t believe this is happening to me and I’m finding it hard to come to terms with. I don’t want to sound dramatic but I’ve never really had any health problems and it frightens the life out of me to think I’ve now got something wrong with me. I want to bury my head in the sand and pretend it’s not happening but I know that’s not gonna help. I’ll get there like we all do but it’s a bit of an emotional rollercoaster at the moment.

[Hidden in reply to Seventy7]

Totally understand what you are saying. I was diagnosed 3 1/2 years ago. Was determined this wasn’t going to beat me did ok until feb2019 since then I’ve had no control and like you am finding it hard to come to terms with( this is not the person I want to be) but since I joined this site I have heard about some success stories. One women was confined to a wheel chair . Then she tried a different drug and is now walking. Unfortunately it is trial and error with drugs and there is on going research so there is always hope.

You know where we are if you need us.

[Seventy7 in reply to Hidden]

Thank you

[Juliachoo in reply to Hidden]

J1707 similar to you, i was diagnosed 4 years ago & I didn’t want to know! I knew very little about RA & totally ignored it for 16months. My first flare was the biggest “wake up call” I have ever had! I soon realised what RA flares did to the joints & suffered damage to my hands feet & knees through them! I

feared for my mobility & since being on methotrexate for 2.5 years & now biologics since August I have got a lot of my mobility back! Trial & error & bumps along the way but I’m afraid drugs are a necessary evil with this demon disease! Xx

[Hidden in reply to Juliachoo]

I start my biological in 2 weeks already on methotrexate injections 🤞🏻this works for me as well as it has for you.

[Juliachoo in reply to Hidden]

Which one are you going on? I’m on the Imraldi pen. They do make a difference but do be aware that they don’t help everyone! Sending good luck to you! Xx

[Hidden in reply to Juliachoo]

I’m starting etanercept thanks xx

[Juliachoo in reply to Hidden]

Sending good success vibes! Keep us posted how you get on xx

[helixhelix in reply to Seventy7]

Many of us have been where you are now. It’s horrible so I feel for you as I don’t want to live that first year again! I was normally healthy before, and I’m normally healthy again now. I just take lots of drugs. In fact if anything I’m healthier now as I eat properly and exercise, so not all bad news.

[AgedCrone]

Yes it does take a time to digest that we are susceptible to such a horrid disease....but stick with it.

The majority of us eventually accept it & albeit reluctantly...we deal with it.

So best foot forward for 2020....listen to your doctors, eat healthily, keep gently moving your joints & be determined YOU are in charge....not the RA .

It’s amazing from what depths we can arise & live well........but we have to believe we can do it.

[Seventy7 in reply to AgedCrone]

Thank you

[lilyak]

You know what Seventy7 ? Listen to your doctor. That’s really the only advice. Oh my gosh? Did I reply on the right place? Sorry if I’ve offended you

[Seventy7 in reply to lilyak]

😊 I’m not offended, the advise you gave was appreciated, thanks.

[Juliachoo]

So eloquently put Helixhelix.. you are right but personally I think there are benefits from some of these healthy diets but only if run alongside proper RA medication xx

[Hidden]

RA is what causes other problems, such as heart disease, and lung problems.

[Hidden]

Seventy7 I think and seen already many on here would not expect to have RD and then not take the drgs that have been around for years that are prescribed. Our bodies need something to fight what we cant with anything else.

Nothing has worked for me so far pregablin/naproxen/diclofenic/amtripline/tramadol the list is endless but I am working my way through the pros and cons of MTX and prefer to be on it than get more joint damage! Nausea and diarrhoea I might have but I prefer that to joint damage.

Many on here give sound advice who have had this for years and as a newbie I have listened and learnt and then adapted what works for me too but also TALKED out stuff with local GP and my consultant.

[Brushwork]

Hi Seventy7,

I was controversial, I tried to treat my RA with diet having read numerous studies and researched a mountain of data. Without a doubt a good healthy diet and even fasting (mine is practically vegan), helps enormously and can push a flare away. However, eventually the RA takes over but, I maintain that the healthy diet and minimal DMARD intervention is the way forward, for me anyway. The DMARD is necessary, as much as I tried to avoid and deny it for many years.

My RF and Anti-CCP markers are very strong positive and have been since the onset, which would indicate very active and aggressive RA. I am relatively ok after more than 20 years of this thing. Yes RA is progressing but not as quickly or as badly as the markers would suggest. The markers dictate the regime the Rheumatologists prescribe, and in recent times I have resorted to taking more meds, but maintain the healthy diet with occasional fasting.

You must find your own path, listen to your body, do lots of reading and research, and take advice from the specialists and then... decide what is best for you.

Best of luck and good wishes