I was diagnosed in March with Inflammatory RA. ( It has had an effect on certain joints)
Without going into “any details” I am not on drugs as yet - although they were offered by consultant.
Having read the leaflets I was given and my going on the internet I am sooo scared.!!
A friend of mine has same condition but because of her liver problems she cannot take RA drugs so since before covid she has been drinking Turmeric with ginger. Hardly any flare ups or pain. Has anyone else heard of this before ?
Turmeric is an anti-inflammatory so on that basis wouldn’t that prevent damage to joints?.
Thank you.
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Bobbie42LH
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call NRAS for help so they can explain this all and listen to your fears. Turmeric won’t help stop the unseen dl damage RA does and before you know it the damage is done. I have taken 5 drugs so far and being honest not always been easy BUT I know I have too! As the consultant said no supplement has shown to help as such, so we have to take the medication.
Your fears and anxiety are real but talking it out with the NrAS team might help too. They are fab and helped me so much in the beginning. And remember what your friend is going thro is not YOU , no one is the same.
I’m really sorry if this offends but it is the truth so don’t be taken in by so called ‘can’t take’ etc there is a huge amount of RA medications and if you’ve been offered a medication because you’ve been diagnosed with RA then you need it. To suggest that a medical condition can be affected by a herb is delusional but if someone thinks it works it just might. I don’t want to doubt your friend but is that really true or even likely as liver problems will affect some medications but I have kidney failure and still have them. I’d ask her/ him for proof and go back to your consultant and ask to try a medication. There is no quick fix and it might take a few tries before you find a regime that works for you but if you don’t try then your not going to get remission as there is no cure for RA and it doesn’t just affect joints it is systemic and painful it can affect your blood and organs, it will damage your joints , affect mobility and even distort your feet and hands. Is it really worth the risk and it’s good to be wary of medications but paracetamol can kill and yet get swallowed every day without much thought. I’m in a way puzzled as no one including me wants to take medications or inject them but it enables most to lead normal productive lives. With a lifelong disease that no one wanted but we have to control. I’d advise you to not leave taking a medication until you’ve got damage as it will be irreversible and probably very painful. The NHS gives us access to good treatments and it would not do so if we could go to a shop and buy a herbal remedy. So in conclusion no harm in trying a herb but alongside a medication with the approval of your Consultant in case off any possible interactions. And make sure your being advised by medically qualified professionals and not being misled by well intentioned but nevertheless badly informed friends.
Hi do some investigations for yourself, not everybody is like previous person so negative about herbal supplements, and I know to how some helps, some people just thrive on negative views, but talk to your consultant about your fears, and also about alternatives that can work along side of meds, I take 6 sulfasalazine twice aday and 1 small 10mg leflunomide once aday and it's great for me, it's trial and error at first but maybe I was lucky bcos this has worked fine for me and I take some supplements too.So go back to your RA consultant and ask to go through your choices and don't be afraid to ask about homeopathy either to be taken aswell they are the best person to help you and then take their advice, tell all your concerns it's your body no-one else's and don't compare to anyone else, I wish you well on your journey.x
Yes the drugs are scarlet at the start. I read all the pamphlets and was terrified. I spoke to the rheumatology nurse and she put my mind at rest, I also contacted someone I vaguely knew who had RA and they assured me they had been on Methotrexate for 15 years. I have been taking for 4 years now. I mentioned Turmeric to one of my doctors and he said if it worked there wouldn't be so many people in his home country of India suffering from RA.
If you don’t take the drugs offered by your rheumatologist….in a very few years you will probably wish you had listened to professional clinical advice not old wive’s takes.
Do you honestly think the nhs would be paying out £millions giving us DMards….. disease modifying, anti rheumatic drugs ……treating our RA disease if Ginger Ale & Turmeric was a credible alternative?
Go back to your doctor,& say you have changed your mind. Damage occurs from day one…so you need to catch up.
I have been taking these drugs since 1997, and I am doing just fine…..a few caused some nasty symptoms…but I have few damaged joints & now need only one Biologic infusion…every 9/12 months.
The accuracy and authenticity of the information on Google is often at best poor and at worst downright dangerous so firstly give yourself and your addled brain a rest and leave all the algorithms alone. Secondly, the only people to listen to are your experienced and trained medical teams who treat RA patients day in and day out.
Forget so-called ‘remedies’ which will only delay treatment for this life-long condition which, if caught early and treated properly will give you years of relatively good health and allow you to lead life normally. The old pictures of deformed joints and crippled people are far in the past nowadays as science and medicines for RA has progressed enormously.
Please take advantage of the latest knowledge and drugs, take no notice of well-meaning but ill-informed friends, look forward to less pain and more mobility with the help of your doctors and as advised, talk to NRAS and source your information from them and reputable websites.
Best of luck, hang in there and it will get better!
The best advice I had at the beginning was from the GP who referred me to Rheumatology - she said to only read stuff from reputable websites (like NHS, NRAS, Versus Arthritis) and not to read anything older than 5 years as things are being developed so quickly. I've been on DMARDS since diagnosis in 2019, am now basically pain-free and have no joint damage. I have had some side effects but nothing unmanageable and am so thankful that science has given us these medications - I can remember my grandmother sitting waiting longingly for her painkillers with her hands crippled from the same condition 😥
I cant really add much to the excellent comments above. I understand the drugs may be scary depending on where your getting information from, i really do.
I absolutely respect It's your body and your choice, but as you've posted a comment presumably seeking advice and thoughts.
If turmeric and ginger were a viable treatment they would have been prescribed as a treatment a long time ago. Many of us take anti inflammatory drugs as well, but on it's own it doesn't control the disease.
I'm more scared of the disease permanently damaging and distorting my joints which is what used to happen before RA drugs were developed.
I am so sorry that you have RA and understand your fear.
I am a firm believer that what we consume in terms of food and supplements affects our health and how our body deals with problems. It is simply chemistry.
However, RA can be a severe and debilitating disease if it is not treated. Your blood tests will reveal the potential severity of your condition.
It is considered vital that control of the progression of RA is achieved as soon as possible, which is why taking medication is so important. It is also wise to further support you body with a healthy diet and yes, supplements are worth trying.
I find turmeric and ginger helpful, I also take extra Omega 3. My diet is quite restrictive, because I know it helps me. I’ve had RA for 27 years and am still fairly active and have no mobility issues.
Research and knowing all you can about your condition enables you to make informed decisions, along with your medical team, about your treatment.
I hope you find your best path through this difficult time. Go gently and be kind to yourself…
I have had RA for nearly 30 years, diagnosed in my late 20s. I took all the offered medication (and the side effects). I am not saying it has been a bed of roses but by being my own advocate and having frank conversations with my consultant over the year's I am still relatively unscathed. I work full time (I was a single mum for years after diagnosis), I garden, love walking 3-4 miles a day. I supplement my RA biological treatment with a good diet as I find when my stomach is happy my RA is more settled. I use homeopathic options to mitigate symptoms, one of my go tos is pernaton gel instead of one of the antiflamatory versions, heat packs, red hot baths and as a treat I go to bake at the Turkish baths. Be kind to yourself and the only thing that really controls RA to reduce damage to joints is disease modifying drugs. One other thing that I found helped was to reduce drinking (red wine in particular).
I too am recently diagnosed and scared. I have started on the drugs recommended because they stop or reduce the damage to joints. Once the damage is done you can't turn back the clock. I too have pre existing liver damage probably linked to the RA inflammation. I really don't want to be in a wheel chair in the future. My Gramma had RA and that's how she ended up on the treatment in those days that was available. Trust your rheumatologist.
It can not just affect the joints but all the systems of the body. Heart, lungs, eyes etc.
The side effects of the medication can be problematic, but joint damage and flare ups are horrible. I have been on one long one since August and it has done a lot of damage.....
When most people hear Rheumatoid arthritis they don't actually heard the rheumatoid but and just the arthritis. Could your friend have osteoarthritis from wearing and tear? Tumeric might help this but my understanding is you need enough to turn you a shade of orange so it would it would be worth asking again.A well meaning but equally badly informed friend of mine once advised that I do a 50 day fast and survived on bone broth and the occasional slice of toast as apparently this is anti inflammatory....to be honest I didn't so can't say it didn't work but I think you can understand why I ignored her advice.
Remember that no treatment on NHS gets approved without rigorous trial and testing to weigh up benefits against risk. Yes RA meds are a bit scary but the damage to your body from RA is much worse and leaving it makes it harder to get under control. Luckily for the majority of people they respond well and your RA team will talk to you and involve you in decisions about your care.
Take on board what AgedCrone is saying and leave Dr. Google alone is my advice. If you don't take the medication on offer you will regret it. Don't believe a herb can cure you. Talk it over as suggested . You can do this. I'm glad I didn't refuse my meds.
I have been on turmeric, vit d, omega 3, and hydroxycloraquin(misspelt) and generally okay. I tried MTX for 5 weeks and stopped it as I felt crap. So that’s it. I think tumeric is worth trying.
Hi Bobbie. Well all the comments above are correct. The simple fact is take the meds offered. You may not be able to stick with the first one/s they try you on it's all about finding the right drugs to suit you. BUT take it from me.... Because of my body 'make up' let's say, I have tried 6 different meds and am finally ok on 2 of them. Lots of meds not just RA meds upset me badly. When I was off meds I got that I could not even walk I ended up in a wheelchair, I couldn't use my arms or hands either basically I could not go anything! Once on the right meds for me I can now walk. I have damage from RA as it took so long for me to find the right ones. But NOTHING other than RA meds works and I do not believe anyone who says otherwise. Things can help, like not drinking alcohol as much etc but you will get joint damage and be in a LOT of pain that can be totally dreadful. Take my word for it take the meds. This isn't to scare you it's the truth but your scared of the drugs anyway and you should be scared of what not taking the drugs can do to you.
Sorry to hear about joint damage, that's what I fear most. The treatment ladder seams seems so slow, when your body is falling apart. Very hard to be patient and wait for things to work.
I am on week 5 of methotrexate and steroids. both knees are damaged and now left ankle. I asked to start a biologic but they told me I have to be patient. Now I have Episcleritis too.
I can only repeat what the others have said. I would speak to your rheumatologist regarding any supplements, they know what’s of genuine benefit. I do believe that a healthy diet, keeping active and being positive will all impact on your health as well as the medication. I remember my nurse saying to me early medication ,should slow down joint damage. RA can also cause damage to internal organs. I didn’t want to take meds and still don’t. I question everything I am prescribed. I was a while before I went to GP I knew something wasn’t right with my joints. Leaving it has caused damage to my hands which is not reversible.The medication for me has given me my life back, it did take a while but I am in remission and although old age is creeping up I have had a nearly normal life. I cycle, walk and up to 2 years ago worked 36 hours as a cleaner!! Hoping you get some help soon.
Hi don't be scared! I've been diagnosed with RA for about 10 years and felt the same then. However the drugs are good and prevent your joints being damaged and becoming deformed. I would take whatever they advise. I started on Hydroxychloriquine with a hope of this only being for a while but then progressed to Sulfasalazine and now in all three including Methotrexate. As long as you take as prescribed with folic acid every other day than when taking Methotrexate and vit D hopefully you won't have the terrible debilitating deformities that used to occur! The DMAR's have been used for years and as long as dose correct hopefully you may go into remission! I have good and rubbish times but if I exercise and rest when needed and take my prescription meds then I'm good. Also regular immunisation for everything I can !
I just cycled 100 miles for the Scottish charity air ambulance in October on my e bike and feel better when excercising. Keep active and moving! I have taken Turmeric everything and not saying it doesn't help a bit but it's no match for DMAR's . NRAS is great contact them ! The internet will confuse your brain! Too many false claims and better going on Rheumatologist advice! Good luck !
you’ve had many good replies - I can only add that you should be careful of people saying they have the ‘same condition’ - especially if they have found a magic cure- most people develop some wear and tear arthritis but few understand that RA is a completely different and systemic disease process
I hope that you do not feel bombarded by all the replies. We are here as fellow sufferers to offer understanding and support. It encouraged me at the start to know that when on medication we have blood tests very regularly to check that there is nothing untoward going on. These continue 3 monthly when settled. While I really value the shared experience and kindness of folk here newbies need to remember that it is largely populated by newbies and those hitting a snag. There are many thousands on treatment going about their busy lives with no need of the support here.
Hi, it is scary at times but you will evolve to feel differently over time. I can only echo what’s been said, it’s highly likely you’ll need the medication offered but try what you need to, I did, looking back, it was part of the acceptance process. Although, there’s still times when it’s a struggle to accept it but you’ll have lots of times I’m sure, where you forget you’ve got it and can enjoy your life. Good luck 😊
It's good you've asked advice and it's natural to be scared. I'm glad you're friend is doing OK on turmeric tea, but I have read no data whatsoever on it being a sucessful treatment for RA. Drink it by all means, but if you have active disease you might need medication.
I delayed my own treatment for years, trying all sorts of alternative remedies. If I'd know then what I know now - that early intervention with the type of drugs you've probably been offered achieves the most positive results - I'd have taken them. As a result of not doing so, low level disease became very acute and my joints are damaged as a result.
RA affects the whole body and external symptoms are not the only signs of it. I'm sure your friend only has your best interests at heart but please do your own research on reputable websites. Clean up your diet, get rid of sugar and junk food, and reduce stress as much as you can. This will stand you in good stead whether you take the drugs or not.
Nobody likes taking medication, and I don't think anyone on here does it necessarily. There comes a point though for all of us where the symptoms of RA mean there is no option. It's good to question, and it's natural to want to avoid drugs if you can. Just make sure the advice you take is from reputable sources X
I agree with the advice above. Follow the rheumatologist treatment plan. They will get it right, even if it takes time. Also, note that Turmeric can interfere with RA drugs, even it provides short term relief. Finally, I have found that healthy living amplifies the effect of the drugs. So eat well, sleep enough, exercise etc. My doctor also told me that for every scary bad story on the Internet there were 100 people who are doing well and are too busy to tell everyone.
I hear you, I was super scared too. You have to understand the levels of inflammation in your body with blood tests and how you feel and then assess how alternative options are helping to reduce it. I don’t think there is one way to manage autoimmune diseases and you have to find your way. I am an advocate of understanding gut health, traditional Chinese medicine and more recently Ayurveda.
I hear you! But it gets better and way less scary once you are on a medication that is working. The medication will become a best friend. ❤️. I tried the turmeric when I was first diagnosed. 🤦♀️🥴.
It is really scary thinking about the drugs and possible but side effects. Try to remember they are only possible effects and need to be mentioned for legal reasons.
Try to think of what is probable with the drugs, less pain, less stiffness, protection from deformities and a lot of the time, remission from the disease.
I have a real phobia about all medication and was terrified of taking methotrexate. I knew I had to take the meds for all the reasons everyone’s mentioned. I talked it through with my rheumatologist who allowed me to start with a very small dose and work up to a therapeutic dose when I was ready.
I try to remember that fear is a feeling that cannot hurt me even though it feels really powerful. If I was to believe my fear all the time I’d be more debilitated by it than any physical illness.
So my advice is : accept your fear and do what’s best for you regardless.
There's a lot to learn when you get diagnosed with a serious illness. One thing you need to know is that the drugs manufacturers have to put every side effect that could possibly be suffered onto the list, which can lead to a very long list of stuff that won't happen to most people.
The scary ones are quite rare. Some of the more common ones like stomach upset ease with time, hydroxychloroquine for example upsets your stomach a fair bit over the first few weeks but then calms down as your body learns to tolerate it and you remember to take it with plenty of food.
Methotrexate can have bad side effects, but the doctors introduce it slowly and do lots of blood tests. They will stop it and try other meds if you react badly.
The long terms effects of uncontrolled Rheumatoid Arthritis are becoming wheel chair bound, having hands that are useless, being in pain when you pick up a glass of water to drink it and organ damage and heart problems.
Hi so sorry you have been diagnosed with RA. I remember being so scared at first. That was 25 years ago before a lot of the medication we now have available to us. The medication can & will help with pain & prevent damage to your joints. You have a choice. It will take time to come to terms with what is happening to your body but you will get there even though it is overwhelming & dosnt feel like that right now. Lots of good info from others here & I would also advise speaking to NRAS the staff on the advice line are very kind & knowledgeable. You can still take the turmeric & ginger tea but personally I would take it alongside the medications your rheumatologist suggests.
All I'll add is sorry you're in the club none of us wish to join. It's scary , distressing when first diagnosed and offered what as my friend calls " hard core " meds. At first it was too much to take in , for various reasons I delayed my starting treatment ending up going from a very fit active person to be bed ridden. By this time I had got my head round it, done my research on reliable, well researched websites NHS, Versus Arthritis, this site a big help, so armed with my questions the kind RA nurse gave up her lunch hour to spend 45 minutes answering my questions.
The first year I was warned is a roller coaster as your system adjusts to treatment, it's a suck it and see, so you may need to change what you're first started on. I stayed on MTX but my friend was changed a few times till they found what worked for him. I had some milder side effects but every time I called and spoke with the RA nurse a solution was found, this is the key develop a good rapport with the RA team, the doctors diagnose and prescribe, while the specialist RA nurse guides you through your care plan.
Hubby asked me what would happen if I'd not got these meds? I said joints lock up and it will damage many parts of the body permanently. So prevention is better as too late when damage is done.
Regarding turmeric we've all had various supplements, " cure alls" suggested to us by well meaning family or friends. Yes I tried it but had to stop was effecting my stomach, plus I only take a supplement after checking with my RA nurse.
As others have said if the multitude of complimentary treatments were " cures" ( no such think in life 🥴) then we'd not have to use the more strong medications for RA.
Early days try to find calming things to do, rethink your situation, discuss , discuss with the RA team, find what works for you. All the best.
you have to take the meds to stop massive damage to your joints. No other way around it. Unfortunately your friend can,t because of her liver. Unfortunately hers WILL progress. I would rather be in your shoes. God Bless!
Hi Bobbie. I would defo talk to NRAS. I don’t think you would be offered meds unless you needed them. I’m sero negative and a different pathway. I had to have 2 joints replaced before diagnosis and then was hard to control the inflammation as none of the meds worked. If I had been diagnosed sooner I may have been less disabled by it. I’m in a better headspace now. Everyone’s journey is different so don’t compare to anyone. I’m glad they have developed drugs that can help. Good luck. Let us know how you get on. Xx
Read up about your diagnosis,drugs etc ( can also order leaflets from versus arthritis online) All drugs have side effects even paracetamol but the sooner you start them the better your RA under control.Sometimes it can start a drug ( have bloods monthly) and after 6 months if no improvement switch to another. I have inflammatory as well and because of meds I can do so much more ,no fatigue.inflammation right down much less pain and flare ups .But you must come to you own decision , not taking meds just means disease activity still exists and damaging joints
I posted this about a month ago for someone else.Honestly the meds are so much better now as someone of 65 and still working having seen rheumatoid patients years ago please believe it's so much better life can become more normal for you. As a nurse I worried about the meds too but the alternative is not acceptable to me. I worked in the 80s with rheumatoid patients and seen the consequences of not having the meds we do now. Most of the patients I seen were disabled and some badly due to the lack of good drugs. You have this but at the right time to benefit from care now. Fear is a good thing but being body aware is better. Once you see what happens to you when you feel so much better than you do now you will know. It's difficult the drugs sometimes work for while then you have to change but honestly the alternative is not good don't hurt yourself for no reason other than fear.
hi I’m glad to see all the good advice here. I have been on methotrexate for 7 years. I didn’t want to take any drugs & was worried same as you. But after quite a few months of side effects, it settled & now I wouldn’t come off it, it does help for me x good luck x
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