I have been here for five years and have never found anyone🧐
I do wonder if there are any RA sufferers that are no... - NRAS
I do wonder if there are any RA sufferers that are not taking RA meds on this forum?
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Agoodlife
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142 Replies
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There are people on here who have gradually reduced their meds and come off them. Don’t ask me to name them though 😂
They don’t count😀
Well I don’t understand what you are asking then. Those people do count as they aren’t taking meds for RA, which is what you asked?
Because you can treat RA without meds that are to treat RA, mostly immunosuppressive.
Incorrect according to NHS protocols research and rheumatology experts .!! Please dont suggest to others who are in vulnerable situations that meds dont help....sorry they do !
Not a question of not helping, they certainly do often but they do not cure. No one has said they do.
Personally its because I prefer to follow the gold star NHS protocol for treating RA. When my drugs are removed or being changed I'm in so much pain and discomfort so I prefer to have them.
Also diet and exercise can help but i havent seen it shown in any clinical tests to actually control RA.
I do believe there are numerous reasons why meds are taken but only heard about one who is not taking them and has had benefits when not having them.
Low percentage then, doesn't that suggest they work 🤣🤗🥰
Not necessarily.
We have all these amazing things to help us. Millions of pounds and years in development that are proven to help people with immune disorders. My dad, grandma, 6 uncles were all wheelchair bound and died of cardiac problems in their 50s.
I was terrified when I found out I got RA but with my amazing rheumy team and my dmards and biologics I got out of the wheelchair I was using as I was in so much pain and inflammation and now I feel very well most of the time. I wish my family had these drugs available to them .
Would I come off the drugs prescribed specifically for me, no I wouldn't. Not for any diet, herbs, or any of the other plans suggested, unless if course it was proven on random controlled trials to work !
I don’t understand your reasoning .......”.numerous reasons why meds (presumably RA med?) are taken”. “but only heard about one who’s is not taking ?RA meds and had benefits” (eg feels better?) “when not taking them
Do you mean they took meds, had benefits, then stopped them, but then didn’t have benefits?
Sorry I don’t get it!
I don't understand why you want to know this. As for immunosuppressants, they only touch the surface of RA. Most sensible people want treatment that will prevent any damage from happening that will cause disabilities. It's a bit like going backwards to rely on immunosuppressants and forget about all the modern treatments.
Agoodlife in reply to
Because I have seen the benefits of not taking meds and wonder if anyone else has. I do not think that symptom medication is going forward but new ways to cure.
Gotcha. I agree I wish they could find a cure ... until then I'll have the meds to help the pain xxx
It’d be great to find a cure but I think that’s a long way off and what do we do in the meantime? 🤷♀️
True enough 😟I was privileged enough to do my experimenting age wise and time wise and was willing to believe that there was an other way and put my own situation in the experiment for good and for bad.So I am only excited when seeing results.Do not mean to offend anyone. I have been on this forum since I promised you that you can follow my different journey without meds.
Have you shared this with us Agoodlife? Am I missing it somewhere 😊
I have at least tried to share it with you. Perhaps not succeeded well enough ?🙁
You replied to me the other day saying you take aspirin, pred bicarbonate, vitamins and minerals coffee coco milk fruit carbs and water. But you have said now you’re not taking any meds for your RA ? How have you got to deciding just those foods etc are what works? Are you on a really restricted diet? Sorry for all the questions. I’ve never even thought to restrict my diet so I am curious😊
I look at meds as those that have the least negative effect. Unfortunately I still need Pred but keep it to the lowest hurtful level and am working with no meds to get rid of it.I don’t see aspirin as a med since it has so many beneficial effects for my immune system. I learned early in my journey that the only beneficial dietary measure was to keep away from gluten and lactose and not even these always. I. Keep away from foods that give me symptoms sporadicly as an example the above mentioned or if I react to oranges.I love oranges! More important has been to define my underlying metabolic problems or other problems.
Well follow your docs advice. Aspirin actually is a drug. Hope you get your metabolic problems treated. But diet has not been proven to be as effective as RA meds in controlling RA . Exercise and diet are helpful but not the main treatment. I think it difficult to say to people who are prescribed meds by qualified rheumatologist that you dont agree with it us not helpful. The dugs do not only help control inflammation they have a protective mechanism in protecting joints and lowering the risk of cardiac problems.
It's quite dangerous to do your own programme of I'll have thus and not that without consulting your rheumatology team and I would suggest new people on here follow the rheumy advice .
If you are still taking Prednisolone you are taking one of the worst drugs ever prescribed for RA.
It does nothing to stop the advance of RA. Do you have regular checks on your joints......are they still showing signs of RA inflammation? Hope
Please help? I just got diagnosed and was given Pred. Does it not prevent erosion? Why NHS still prescribe them ?
My reply was addressed to Agoodlife who is long diagnosed and is on a mission to be completely drug free, but it appears she still takes .prednisolone.
When you are first diagnosed it is normal to be prescribed Pred until the Dmards start to work....there is no set time for this - it depends on how well the Dmards work for every individual.
But if I were you I would have a word with your rheumatology nurse asking her to explain to you how Pred is usually used, & that you would like your rheumatologist to know that you really would like him to know that if all possible you would like to be weaned off it as soon as possible.
There are some people who do need to remain on a holding dose of Pred.....but if at all possible most people prefer to only rely on it when they have a flare.
So don’t worry too much..but do ask RN to explain.
Aspirin is a medication, with some serious side effects in susceptible people.
If you still have my old posts you could look up the benefits of aspirin.You would find it interesting reading.🤓
I'm well aware of the benefits of asprin, but it is a medicine and like all medicines it has side effects, just the same as steroids, NSAIDs, DMARDs, biologics, JAK inhibitors and .......all medications.
All medications have benefits, that is why we take them, but all medications have side effects too in susceptible people.
You should not be advising anyone to take Aspirin. it has wrecked my guts and caused Ulcers in lower gut and foodpipe
We can always compare the benefits and risks of different meds. It’s very hard to find as many adverse effects on aspirin compared with RA meds, as I understand.
I think all of us on here would be happy to be meds free but that’s not feasible as yet! Just curious, what benefits have you seen and what are these people doing instead of taking meds?
I have seen and listed many on this forum. I have seen many on Ray Peats forum and understood why they are working through his well known reasearch and articles.I have taken these up on this forum since they have worked on me as a substitute for meds there is no try to push out one or the other.
Wyaatch in reply to
Hi poems galore—correct me please , if I’m wrong here—but aren’t all our modern RA drugs based on immune suppressants? All the biologics for example? Thanks anyone.
As far as I know all are, except hydroxychloroquine and perhaps sulfusalazine. At least if hydroxy does suppress the immune system the effect is marginal according to my rheumy. I'm not sure about sulfa but would think it too has a small, if any effect on the immune system.
Well you are in the minority Agoodlife. Like Allanah, most of us depend on our meds to enable us to lead a fairly normal life in the light of what is an incurable disease.
Me too Allanah.
I think you're on the wrong forum to ask such a question, sorry. Maybe there's another out there that purports it helps RD & goes against all the medical professionals uphold. Here though the NRAS align themselves with treating the condition with the meds designed to do so, or are in the main.
I agree until a cure is found we need the meds and if anyone is reading this whilst going through diagnosis and initial treatments firstly hello and secondly your rheumy will prescribe by the protocols. Do read up on treatments on the NRAS website, loads of info there xxx
Not relevant to this day and age. My grandmother had R A and never received any treatment ( lived in Ireland ) my auntie told me she lived a life of torture and felt degraded that she had to rely on her sons and daughters for all her daily needs . She died prematurely 49 years as RA had effected her heart.She didn’t smoke she didn’t drink ate a good fresh diet ( lived on a farm) no processed foods .
Not for me I’d take the medication as would my dad and his siblings.
in reply to
Similar to my gran J1707. She had Rheumatic Fever then aggressive RA, followed by Osteoporosis. In the 1930s with 6 children 5 singles an a set of twins. One singleton died of Pneumonia in infancy. My mum (the eldest) looked after her siblings and did practically all the housework. She lived in the country too and always ate fresh vegetables, free range meat (mostly home reared rabbit) and eggs. Her heart was affected too and in the absence of the powerful drugs we have now, she was a tiny lady with severe disabilities caused by Ulnar drift, bunions and damaged spine , knees and hips. I can only imagine the pain she suffered. 
I think you need to head over to the Cure Arthritis Community on healthunlocked, where there are more people trying non-conventional routes and a much more mixed bag of arthritic complaints. AndySwarbs and Kai hang out there.
There have been people on here who have tried the non-meds or diet + route, but all the ones that reported back have not been entirely successful with the alternatives. Lucy11 springs to mind who tried absolutely everything and is now doing well on biologics and slowly tapering off. Shalf also popped back in recently, and if my memory is right she was trying to keep things under control with diet and so on, but is now on Rituximab as well.
My suspicion is very much that most of the people who say they have been successful have been mis-diagnosed and actually have reactive or palindromic arthritis, or such a mild and non-erosive form of RA that it is bearable with just pain drugs. Success has never been reproduced under clinically monitored conditions. I believe Clint Paddison was aiming to do this but I’ve not seen any results.
I do have active inflammation and very aggressive too at times. I found a list of things I had written, bought and consumed when I was in agony in the early days. I feared RA drugs would make me worse due to the list of possible side effects. I do become stressed easily and believe this hugely impacts my condition. I work on controlling this every day.
There are many drugs and equally many trials and errors with all of us. I don't know how Rheumatologists work out how much of the immune system they need to suppress but I will be asking my Consultant next month. I don't know of anyone who has good quality of life with RA on solely a clean diet. I tried it, sadly it failed. Perhaps others with less active inflammation may well be ok but I'm doubtful. I still eat healthy and try to exercise daily but the Fibromyalgia hurts like hell. My right wrist/ hand is damaged due to RA. I wont take any chances with this disease and encourage everyone to leave treatment to the experts. (Rheumatologists)
I’m glad you posted that. And I’m sorry it didn’t work for you as you tried soooo hard.
And keep eating healthily, I really believe it helps a lot.
I do every day. Thanks Helix
Dear Shalf I know you tried so hard and believe so did I. And RA did it destruction on me until I believe I found help in science and now I actually see that my RA symptoms are diminishing and I have less need for pain meds or meds in general. This is happening without meds. It has been long and painful journey and I am not recommending it for anyone but there is in my mind still scientific show in back of it. So I am still following it to see where it ends.I feel good and better in many ways.
I did try hard and I'm glad I did because now I know ( for me) a clean diet alone is just not effective enough in controlling my inflammation. I am very open minded and always keen to hear others experiences. I would be wrong to judge anyone, each to their own. I would love to not have to take drugs, I would love even more to not have RA at all. My Rheumy is aware of my efforts and appreciates reasons for trying but she has advised me at this time to continue as I am doing with Rituximab and methotrexate. I think its wise to do so. I am still waking up to pain and swelling and the bone in my wrist sticking out like it's getting choked so not feeling fabulous with or without meds at this present time.
Pleased to hear you are doing well. Just dont detach yourself from your Rheumy team. I think of this disease like the movie Jaws!
Just when you think it's safe to get back in the water....... the shark ( disease) strikes again!!
Good to hear from you Simba 
x
But you say you are still taking Prednisolone. That is like saying I am not getting wet when you are using an umbrella......you just don’t feel what is happening.
7mg . Have far less ill effects than the package of different meds most sufferers are forced to take. And the process of decreasing symptoms is very encouraging.As I said I am still working to get rid of the pred. I am quite sure many of us would be happy with 7mg as the only med needed.
Hello stranger! I think we were diagnosed around the same time. I also have a cupboard full of all the vitamins, minerals etc....under the sun. I even have three bottles of something called Bitter Melon (what possessed me). What even is bitter melon? It’s about as much use as the proverbial chocolate teapot.
There was a really poignant post on a healing naturally site recently. Written by a widow. Her husband was determined that he was going to overcome RA without meds and followed strict protocols. Docs begged him to try dmards as the RA was getting worse. He refused. Last November it attacked his lungs aggressively and there was nothing that anyone could do. He died in December. I wept when I read it. She was literally begging people to listen to their rheumatologist so it wouldn’t happen to them.
Thankfully we all have free choice....but some just don’t want to listen......very sad about the man you mention, but as we read on here, some folk think they know better than scientists & doctors.
Of course that is their right.
But as my grandmother said ...” Don’t come running to me when it hurts I told you it would”.
Harsh but true.
It's awful isn't it - the poor lady was distraught as her husband thought he knew best even when it hit his lungs. He still believed he didn't need the meds and he died in his sixties. The whole post was absolutely heartbreaking. If I can find it again, I'll perhaps post it up here as a salutary lesson.
What confuses me about the OP is that she's taking Pred, so it taking a drug anyway. I know that Pred works like a demon for me too, but thankfully, not on it now.
But as I said in my reply to Agl....it stops the hurt but not the damage.
Maybe some people are able to cope with that ?
I don’t want at the back of my mind....what is happening I don’t know about?
I must admit, for some time it was like a miracle drug for me. Except thinking back, my right hand was still like it was on fire and I seemed to be permanently wearing compression gloves. Benpali was a life saver. I'm definitely not back to how I used to be and walking isn't great, neither do I have any strength in my left knee which is awkward. It's kind of become my new normal. I'm at my office now so I must be pretty OK I guess
I was diagnosed just as I was retiring and at that time there was no way on God’s good earth that I could’ve gone to work.Now of course I’m that much older & will never know what condition I would be in now had I not had RA. But apart from the very occasional flair I’m in just as good a condition as my peers,& a helluva lot better than those who eat and drink too much!
I was prescribed Prednisolone..... I did know what it was & and I knew I should not become dependent on it ....but literally in a week I had such bad neurological symptoms I was taken off it and told never to take it again.
When I mention this to new doctors they all look at me as if I’m some mad old woman and write me a prescription .....which I promptly return to their desk and politely say - Sorry can’t take it - what else is there ? To date, there has never been a time there is not something else.
Back then, as it really took the edge of my pain I was disappointed, but now I am so thankful that happened and I have had to rely on regular RA drugs to keep me in a reasonably comfortable position without what I call the drug from hell.
Think I must have been lucky as I had no side effects at all except for wanting to eat 24 hours of the day. It did take 3 attempts to come off, mainly as I wasn't taking biologics at the time, so the RA just came back big style. The third time it was easy as Benepali kicked in after 3 weeks or so.
When I see how disabled and in pain some people on here are, I'm grateful that the meds work for me.
That is the trouble with Pred it takes away the nasty Pain, but leaves you with what seems like far worse Nasties down the line.
It is a good stop gap if you can just dip into it in an emergency...but long term ..No Way!
Benepali allowed me to taper off pred too Cwendyn, never been able to before that.
Hi Cwendyn, I have been a bit of a stranger on here but not intentionally.
How are you doing?
This story made my eyes fill up. Poor couple
A lesson to us all !
Yes, we were diagnosed around same time and definitely re everything under the sun! I was even taking extra virgin oil straight out the bottle! OMG!
Krill tablets Yuk! Synovital hyaluronic sachets ( which are great for dry eyes) Anything and everything really. I'm still in pain. See Rheumy end of Feb.
Mushrooms unfortunately aren't that magic! Still like them though!
Good to hear from you and great to read your back at the office xx
Hahahaha - olive oil out the bottle. Eurrrgggghh! I remember your magic mushrooms and did think, should I try those too. It's nuts isn't it that we'll try anything the minute it's mentioned.
I'm sorry you're still in pain - that's awful for you. Thankfully, I'm not really now. Like a flipping wooden top much to my friends amusement and can really only walk short distances. Probably because I've forgotten how to walk!
I love seeing your humour's still intact though. I hope you feel much better soon xxxx
It is nuts!!
I must have been desperate to drink olive oil from the bottle! I did feel like the tin man and thought oil would lubricate my joints 😂
Could have been worse, the WD40 was staring at me in the kitchen.
I understand the forgetting to walk thing. I've never tripped and fallen so much in my life. Don't know if its wonky joints or muscle weakness or fatigue. Probably all three with my luck!
Gives me hope that you are feeling better. Long may it continue. xxx
I have seronegative RA and do not take any drugs for it anymore. But I also have fibromyalgia and I do take Tramadol for that.
The reason I gave up on the RA drugs is that none of them worked well enough to offset the side effects. I have had everything under the sun before you ask - from methotrexate to humira and everything in between.
Yes, I still have problems. I’ve had three knee operations. And I do try to manage it through diet etc - but it’s not great.
But, yes, there is someone who has RA and does not take DMARDs on this forum 🙂
Same here. DMARDS didn’t seem to make a difference.then compAre risks of s ide effects. Agree not perfect. I need to make up my mind as I think hospital will discharge me if not f ollowing treatment. Are you getting any medical checks or are you discharged completely and on your own?
Honestly, I just dip in and out of the system when I desperately need something. I currently require another knee operation, so back on the radar for a while.
But I found the care system and the emotional rollercoaster of drugs that never worked was just too much to bear. Feeling dismissed and let down by the “professionals” just wasn’t worth it anymore for me.
I know this isn’t the right approach for everyone - especially those with very severe RA. But, for me, it’s the lesser of two evils xx
I keep asking for meds but have to go elsewhere to a RA specialist before my hematologist will prescribe anything, can't take nsaids at all.
AgedCrone in reply to
If you haveRA you do need a proper diagnosis from a rheumatologist.
You will not have to take NSAIDs...the drugs a rheumatologist will prescribe are called Dmards ...a different drug altogether.
See your GP & get a referral to see a rheumatologist .
Thanks Shalf for your informative responses - I bow to your effort and integrity!
I have only ever been on MTX (since September 2014) and last year nudged it down from 20mg to 12.5mg but 12.5mg has proven too low so now I am levelling at 15mg which seems to be my optimum dose.
The book ‘Take me to the Oscars’ by Christine Schwab opened my eyes re the risks of no suitable med and has me truly respecting what is on offer these days. The meds give me the opportunity to continue to live a full working life whilst I continue to learn how best to live positively with RA beyond the support of meds and consultants.
All the best
Ali
I've tried it a couple of times but the pain just gets too much after a couple of months then I have massive flare ups
I had bad moment a few weeks ago and stopped all my meds. I felt physically fine but overwhelmed with the various meds i now take
Mtx, hydroxy, folic, avamys and now amlodipine for high BP. I stopped the lot.
Anyway..an increasingly painful knee and burgeoning elbow ache have brought me back to MTX.
I took two this week and will go back to my full dose in next two weeks.
The blood pressure meds have settled in and i ve joined weight watchers to lose weight.. my mtx should hopefully ease things again.
Meds are the only thing that helps RA and of course its wise to watch your diet .
My dad has RA nd wont show us how deformed his feet are due to not getting meds until late in life.
I'm not on meds now. Mostly because the side effects were horrendous. I'm certainly better than I was, but I suspect the steroids I've had may well have kicked it into touch. My last IM steroid was end November. I have no plans to take any RA drugs atm. That may change though...I'm open minded. Things aren't right, but I'm not in the state I was in a year ago.
I'm not sure, but the disease seems to be burning itself out. It's left me with some awful damage though. My spine, hips, knees and feet are a bit messy.
bambooinlondon in reply to
Dear Bunty62
Do you mind me asking how old are you? When RA can burn itself out ?
in reply to bambooinlondon
I'm 58, and I actually have PsA not RA. I'm not suggesting it might burn out in everyone, only that this seems to be the case for me.
Agoodlife in reply to
This is the first time I have heard RA burning it self out after taking RA meds. Could you please tell me more what meds you did take before this happened?🤓🤓🙏🏻
My first rheumy said this could be a possibility, most often for people in their 60’s, which is why she agreed to be trying to taper off drugs. She said she had had a few patients where this happened in the 20 years she had been practising.
Tapering off Pred for those not on meds has been possible for those not taking meds with pregnelone and progesterone ( natural) My following project.
in reply to Agoodlife
See also answer to kittyj.
I took all the dmards. I was allergic to sulfasalazine, had awful side effects with methotrexate. Took both tabs and injection. Leflunomide did nothing, neither fid benepali. Had several shots of steroid.
KittyJ in reply to
But Bunty steroids are drugs 😊 Why do you think that they aren't? Please be careful with only having steroids as they can mask the damage that could be being done. Does your rheumy plan this drug regime for you long term?
in reply to KittyJ
Yes I'm aware they are drugs. I wasn't clear. I have gone from 3 steroid shots a year down to one steroid shot only. Considering the state I was in despite taking steroids, dmards and biological drugs, this is somewhat miraculous. I have no current active inflammation. My inflammatory markers have gone from in the hundreds down to two. I'm no longer anaemic and my white cell count is good. I do have very low vit D though.
I actually had no current active inflammation before the steroid in November. MRI showed previous damage only. However, I was in pain and was going away for Christmas, so my rheumatologist agreed (reluctantly) to give a shot of steroid. In hindsight I'm now wondering if the cause of pain was due to vit D deficiency. We shall see.
I'm hoping that the steroid I had in November will be my last. My rheumatologist is in agreement that I do not at this time need strong meds. The next option for me would have been a jak inhibitor. I'm honestly not bad enough to warrant it. The agreement I have with my rheumatologist is that we will wait and see.
If my bloods had been all over the place, and there was inflammation I would have tried the Jak inhibitor. As it stands I don't need it. I wouldn't meet tge requirements anyway.
KittyJ in reply to
Ok thanks for that 😊
AgedCrone in reply to
But IM steroid is a drug you took only 2 months ago.....so that is probably masking any symptoms.
Before I was on Biologics I would have a Depomedrone IM injection that could last 10/12 weeks....but unless I was then prescribed another RA med all the RA symptoms returned.
I have been treated conservatively by my rheumatologists for over 20 years consequently I have very little joint damage. I’m sure if I had just relied on steroid injections I would not be able to say that.
I would urge you to make an appointment with your rheumatologist and talk things through before the effect of the steroid injection wears off.
in reply to AgedCrone
See above answer AgedCrone. 😁
AgedCrone in reply to
Sounds lovely....but come back & tell us where you are this time next year.
You say your rheumatologist was reluctant to give you your last steroid injection....maybe there was a reason?
But Rheumatologists don’t have time to persuade patients ....who for various reasons ......would rather have steroids than RA meds.
.They advise... but that is as far as they can go.
in reply to AgedCrone
I hadn't had a bone density scan at the time, and he was worried about that. Since had one and all normal. And you clearly did not read my answer to kittyj. I am not eligible for anything else. It's not a case of prefering steroids (I'm not an idiot!). I had a long chat to my rheumatologist and we discussed at great length what my options are. My current situation does not warrant taking strong meds. I can't take dmards so the next option would be a jak inhibitor. I certainly do not meet the criteria for that, and why would I want to put myself through more side effects if I don't need to? That money could be spent on someone far worse off than me!
I really don't understand this need to pigeon hole everyone into the same box. We are not all the same. I am actually quite a smart person...I can read books and everything. I've made an informed decision based on advice from my rheumatoligist, my current health situation, and research. I have noticed you are quite snippy with folks who have a different view to you. Kindly keep your sarcasm to yourself.
AgedCrone in reply to
I just saw you were only diagnosed March 2019?
I guess wait & see is how you arev thinking?
To newly diagnosed or those looking for advice on prednisolone etc , please read the advice on the National Rheumatoud Arthritis Society website NRAS. This is evidence based research and hugely informative about drugs used and diet and exercise. It is a free site so you dont need to buy books, drugs, or anything xx
Hello
I am not on any RA medications except painkillers and at times steroids when I get really bad
This is because I have had RA for over 10 years and now diagnosed with fibromyalgia I have tried all sorts of treatments over the years and at the end the tablets did very little but to damage my kidneys which put me in hospital for a month and has taken me years to recover and leaving me with damaged kidneys so I am fearful of any such treatments
Judith
Anxiety can have a huge affect on how people deal with auto immune diseases.
Maybe if you saw a counsellor you could overcome your fears?
Thank you I am willing to try all just worried about my kidneys because it was so bad I was at the intensive care unit at Stevenage hospital for weeks and was brought back to life gradually but I shall never give up
Thanks again Judith
I think maybe if you can get an appointment to have a discussion with your doctors to find out what they recommend and why, that might be helpful for you.
If you are left in limbo without any guidance that is really stressful ...hopefully talking things through would give you a clearer picture.
Totally agree about help. I was in a really bad place end of last year for about four months. It just got worse and worse and I became more anxious and stopped going out, always making excuses. It was a client that said try CBT which I did. Two sessions and I’m much better now.
Startrek65, it’s worth considering, it really is. What’s the worst that can happen? You’ve lost an hour and had a cup of tea 😊. Off topic, have you seen the new Picard on Amazon. It’s great!
I literally shook when I was told I had RA. I cried when I was presented with leaflets on information about meds I was being asked to take. I was about to ask for anti depressants after reading the possible side effects!!
Everything associated with RA especially at the start is devastating for a lot of us. We try to become our own doctor, try to manage our own symptoms and so on.
Many of the hospitals and gp's don't have the time or the resources to give/show compassion. We are ultimately left alone with this 'news' that could change our lives. Questions and thoughts going round and round the mind. The biggest hurdle was learning that close one's didn't understand our pain or our feelings. Take your pills and you'll be fine was one response I got.
RA is presently incurable. I personally tried everything with and without the drugs in an effort to heal my body from RA. I had/have some better days but cannot know why that is! The triggers, the elimination of certain foods and so on is alot to think about. It became stressful for me. Once you learn to accept you have RA, let the Rheumatologist do the work in terms of controlling this disease. My only wish is that there was adequate emotional support. The care system ( in my opinion) isn't great and probably is the cause that some of us take our treatment into our own hands. This site is great though! And there is always someone to talk to here. I will continue with drugs for my RA. I will also look after myself and will try to be part of this group more often to give support and to receive it which I am truly thankful for.
Suzie x
I do not take meds
Can I ask why you don't and how you are coping/feeling without them?
I don't take RA drugs though RA was diagnosed eventually, for a variety of reasons.
Do tell us if you already haven’t. I get very confused with all these questions and answers all over the place.🙁
The only "drug" I have taken for RA is hydroxychloroquine. The consultant told me this week that hydroxychloroquine is not a proper Dmard and does nothing to alter the course of the disease.
Quite bluntly, I was messed around so much initially, that I feel the opportunity to alter the course of the RA was lost. First, I had to wait six months for an NHS appt yet my hands were almost paralysed, I had a frozen shoulder; forearms, elbows, upper arms badly affected; knees and feet slightly affected; one lower leg numb. I saw a cons rheumatologist privately on account of the wait and he was useless, diagnosing gout and tried to get me to pay £5,000 for his private gym, without conducting any sort of investigations.
The RA started suddenly in 2014 at the age of 65, so I was not a good candidate for RA drugs. If they had been offered within the three month timeline recommended by NICE, I would have tried them, but the consultant said he felt it was too late and they do have toxic side effects.
I did not even get a diagnosis for a year. Meanwhile, I got enormous relief from Chinese herbal medicine (tablets) and electro acupuncture. There are clinical trials being conducted in Holland on something very similar to electro acupuncture and a guy on here was participating.
I have tried hydroxychloroquine three or four times and it has helped and I get a quick response - the consultant was puzzled by that as he said it normally takes 6-8 weeks. I am very sensitive to medication though. I am allergic to prednisolone (and steroids in general). I had a cortisone injection in my shoulder which brought 90% relief for ten weeks but it caused dreadful thrush, to which I am prone. Cortisone injections impair glucose tolerance so you can only have a maximum of about four anyway. Naproxen and a brand of hydroxychloroquine called Quinoric contributed to gastritis and a stomach ulcer from which I am still suffering - I already had a bug called h-pylori. I was not prescribed an acid reducer when I took Naproxen and Quinoric as I should have been but, when I did take Omeprazole to treat the ulcer, on every occasion I had a flare up of a stomach bug and felt as if I was dying. I tried it again early Jan in a half dose (10 mg) and I felt quite ill - this has been going on for three years.
My understanding is that the purpose of Dmards is to switch off the immune response that causes RA and the drugs should therefore stop the RA or cause it to go in to remission. Yet, on here, the majority of people have been taking Dmards for years which I could not tolerate. I have a kidney gfr which is dropping like a stone.
The only reason I go to the GP/rheumatologist on the NHS is that I get the blood tests and investigations done free. Otherwise, I found the NHS too slow to be able to provide beneficial treatment in a timely manner.
Hope this helps for whatever you appear to be researching. By the way, I asked the consultant if he considered I was going to get joint damage in my hands if i left the RA untreated and he did not think so. Quite frankly, I don't think anybody knows and it is a personal decision - if you can tolerate the drugs, fair enough but I am afraid I can't.
The waiting times can be very long on the NHS, but long waiting lists do not mean you cannot be treated with DMARDs if needed, when you are eventually seen.
Why were you told you were not a good candidate for RD drugs ?
What investigations did you have ? Bloods ? XRays?
Any scans ?
Did you recieve a diagnosis ?
You say you have only ever had HDQ, why is that? Why have you never been offered an alternative DMARD ?
Sorry for all the questions ! It just seems odd not to treat someone! Plenty people over 65 years old commence treatment for RD.
Remember most people with RD are not on this forum, they are off leading reasonably normal lives. This forum is not representative of people with RD, medication works for most people.
I have given the answers to most of your questions in my initial post if you read it again. In addition, I have a chest problem and every time I have taken Hydroxy I have developed a serious chest infection, coughing up blood.
NICE guidelines clearly state that RA should be treated within three months of onset, or onset of severe symptoms, to succeed. The consultant said it was too late - the condition had advanced rapidly during the six month wait - and I would be saddled with the toxic side effects. I was 66 by the time I was seen and I am prone to allergies. Most doctors are astounded that some people cannot take prednisolone - which shows their ignorance. I e-mailed the medical info officer of the drug company who confirmed a range of side serious side effects.
You are quite wrong to say people can still be treated after a delay. Yes, they can take the drugs but they often won't work after a delay. If I had been offered them within three months, I would have taken them.
People should not have to wait six months for an appt, in a state of disability. On re-referral, the delay was ten months - what sort of a joke is that?
I had blood tests (largely normal), ultrasound on affected areas, MRI scan on hands. The MRI scan was not done for a year and the diagnosis of RA was reluctantly confirmed even though it showed an improvement on the ultrasound of six months earlier when inflammatory arthritis had been diagnosed.
It is all very cavalier. An acid reducer like Omeprazole ought to be given with Naproxen and Quinoric but it wasn't. I had tested positive privately for h-pylori so there was no excuse. Half the population has h-pylori so if these drugs are prescribed, patients should be tested for it. Because of GI symptoms at my age, I then had to have a colonoscopy/endoscopy, which diagnosed gastritis and stomach ulcer which has not cleared up after over three years.
The private rheumy, physio and osteopath all said that anyone else they have known in my state would have gone to A&E but the NHS saw fit to keep me waiting all that time. Others were seen in a week or two so it is not a case of "waiting lists". Quite frankly, I have been caused so much damage, I want nothing to do with them except to get the free tests periodically.
I am sorry to hear of what appears to be a most strange RD journey. I think you will find many people with RD do not begin treatment for many , many months after onset of RD, its probably the norm. Some wait years to get through the system and are treated successfully.
To deny treatment because the 'optimum' window of opportunity has been missed is most bizarre and I believe would go against every medical guidline known. Tantamount to medical negligence and should be challenged.
Medical treatment is not denied because of a late presentation, irrespective of the reason.
I my own circumstances I waited for months, but still shorter than many people.
It was a very dramatic onset and came on overnight. It seems that with most people who are left waiting that it comes on gradually. I have already told you the side effects of the mildest drugs which I experienced. I cannot take these drugs. I was offered them this week. I don't want the risk, given my experiences so far. In particular, I am not willing to take Methotrexate. I have a neighbour (who is coming to see me at 12 noon) who developed breast cancer and the oncologist said the trigger was Methotrexate and she had to stop taking it. I know a good many more who variously have liver damage, have lost a kidney, have lung damage etc. They are all in the older age group. Are you seriously suggesting that with impaired kidney performance, I should take Methotrexate? If so, I don't believe you know what you are talking about.
My mother developed RA overnight - could not get out of bed one morning. She was referred to hospital the same day as an emergency. It seems the NHS has lost the plot nowadays.
How do you know most people wait so long and then are treated successfully? Are you a specialist in the area? If that is the case, then the RA must be extremely mild. I should have been seen in a timely manner, in line with everybody else and that is the end of it.
Many people on this site report long waits to be seen, as does NRAS and the NHS itself. All the information is freely available and widely publicised. NRAS run campaigns for more timely treatments. There is no need to an expert and.... no most don't have mild RD to have a successful outcome, again all the information is freely available to read online. NRAS publicise regularly on referrals, treatment....all on the website.
Many rheumatologist despair at the wait many patients have too, the information is also available to read on line. Some of us have personal experience of apologies about waits.
The best outcome for many, not all, is timely treatment, yes. But that's not what is being said here.
No one should expect others to tolerate serious side effects from drugs, but again that is not what is being said. MTX is not the only drug, it caused me much in the way of side effects. I dont take it anymore, I've tried most cDMARDs.
My point is delayed treatment is the norm.
But delayed referal does not preclude treatment, otherwise the vast majority of people with RD would not be treated.
Delayed treatment may be the norm on here but from what others on here have said their symptoms were gradual. Mine were not. It came on overnight. I therefore consider I should have been seen sooner than six months later. In fact, when I posted on here that RA came on suddenly, I had responses that stated that the norm was that it came on gradually, sometimes taking years.
It is not the norm at the hospital I attended nor the norm in my area, according to my GP. The norm is to be seen within three months as specified by NICE.
There were people in the waiting room who had only waited a week or two.
The drug manufacturers state that treatment should be within three months - obviously it can't be if it is so mild that a diagnosis cannot be made. A diagnosis was made instantly in my case on seeing the NHS rheumatologist. Even the GP told me it was RA the instant I saw her. I got the impression that they could hardly believe it.
I don't know what point you are making but it seems to be that I ought to take Dmards. I was told I had to take Methroxate before I could be offered anything else. I don't find that acceptable, nor do I want to see people who are so cavalier about my suffering that they keep me waiting six months when there was no private option either.
I really don't want to keep this up - it is history and I posted initially to help someone.
Last point.....treatment is not denied because of late referal. I think it important that people waiting to be seen, or are in the early stages of being referred/ investaged/ treated know this.
Early referal offers the best outcomes, but everyone, no matter at what stage of their disease will be offered treatment.
That's my point.
Yes, they will be offered "treatment" but the "treatment" does not work.
If you have a point to make, then please do not make it by misconstruing my post.
The "treatment" comes at a huge cost in side effects which are worse than the RA itself and does not even work at a late stage. I've not only seen and experienced that, but others have told me including doctors.
in reply to DelicateInput
I waited a year for my GP to even refer me to rheumatolgy despite having swellings, raised inflammatory markers and anaemia etc. I will never see her again! I then waited a further six months to be seen by rheumatology, and then another three months for actual treatment. The NICE guide lines are a crock quite frankly.
Unfortunately none of the dmards worked, infact they made things worse. I was messed about left right and centre. I made a complaint. I now have a decent GP and rheumatologist.
I feel your pain.
DelicateInput in reply to
Yes, thanks. I'm not going to try these Dmards at this late stage but especially not Methotrexate.
Even making a complaint does not get you anywhere - they simply don't care.
in reply to DelicateInput
I think some do Delicateinput. Unfortunately if you get dome bad docs it can colour ones view. Took me a while to trust my current GP and specialist.
Really sorry about your experiences.
I also had a bad experience with the nhs after sudden onset of pain and stiffness.
I woke up on a weekend morning with excruciating pain in my shoulder. I phoned nhs24. Fast forward weeks later and numerous painkillers, I was diagnosed with a rotator cuff tendinitis and bursitis and was given a cortisone injection into shoulder which caused me to collapse with adrenal failure. I was taken to hospital with critically low blood sugar and was admitted to endocrine ward for almost two weeks. They misdiagnosed me with Addisons disease which is a chapter or two in a book in itself. Fast forward weeks into months again, the shoulder 'specialist' diagnosed me with a frozen shoulder and I was referred to regular physio. I still wasn't tested for RA. I also paid a private shoulder specialist who said I didnt have a frozen shoulder and she wrote to my gp. Time went on waiting , taking painkillers, waiting and so on. Then one evening my forefinger swelled up and the pain was indescribable. I went to A/E. I was then taken to the Western General hospital where blood testing took place and I was told then that my bloods are indicating Rheumatoid. I was referred swiftly to Rheumatology. It was confirmed after months of waiting and much pain. I was told my disease was aggressive and accordingly was treated aggressively with MTX , quinoric, and sulfasalazine. I was not given steroids nor did I want it due to my reaction to them. The pain I suffered at that time was torture. I recall crying on the phone to NRAS helpline who were very supportive. Sulpha was stopped and Leflunomide given. Fast forward 4 years, my disease remains uncontrolled. Every dmard and 4 biologics. Pills, injections, mushrooms!! still no relief!
I do understand fully where you are coming from. I also suspect the delay in treatment has caused Rheumatoid to win the race against drugs.
The shoulder ' specialist' in writing, apologised profusely stating she should have seen the red flag! She failed to consider my symptoms may have been Rheumatoid. I was too weak and unwell to take this further.
For all that has happened, I am neither for or against drugs for this disease because with or without them I am no better in regards to the activity of inflammation. I had awful side effects with dmards, stomach problems, shingles, urticaria, eye, mouth dryness. I do feel aggrieved with the waiting for my diagnosis of Rheumatoid and feel it has caused my disease to progress so rapidly that it is now difficult to control.
Our experience is very similar.
I see my Rheumy this month following two infusions of Rituximab. I have asked to have a scan of my right wrist/hand.
The next chapter is yet to be seen!
Thanks for the info. I had a similar experience with the cortisone injection. It did work on the shoulder but for over 40 years I have suffered horrendously from thrush and it brought on a bad episode. There is some problem with glucose tolerance as regards thrush and cortisone injections.
I had my shoulder problem diagnosed by an osteopath early on. He did dozens of different exercises on it and said it was tendonitis (suprasinatus tendon), rotator cuff inflammation etc. My forefinger swelled up at the same time, then the rest of my hand, then the other one, then the wrists and forearms, upper arms etc. so there was no excuse not to know what it was.
If Dmards help some people then that is fine but personally they are not suitable for me because of all the side effects.
Almost identical, shoulder and forefinger! I have also had thrush problems!
What do you take now in terms of controlling pain? Sorry if I have missed something in earlier posts.
I find the best thing is to keep moving and do as much exercise as possible. I am having difficulty in that I am working full-time in an office and I really need to go out and walk around at lunchtime. Swimming is one of the best exercises, particularly backstroke for the shoulder. People think I am mad when I say swimming reduces the pain and swelling in my hands.
My shoulder has been 100% OK since 2016 but recently I've been having some stiffness and pain.
My hands have never resolved - I get flares. I do notice though that anti histamines help. I seemed to have a trigger finger initially - with nodules on middle joints of the forefinger and middle finger. These showed up on the ultrasound as pieces of tendon that had popped the tendon sheath. The tendons were hugely swollen which just shows that RA affects the tendons as much as the joints. I've got a nodule on the middle finger middle joint right now and I showed it to the consultant on Tuesday but he was not interested. It only came up in the last couple of weeks.
I've got a reserve of hydroxychloroquine but I do get side effects with it. Therefore, I only take it for a month or two at a time. I am going to have to bite the bullet and pay for some electro acupuncture. I tried that initially and it got my jammed fingers moving. It is expensive though - now £80/hour whereas when I bought a course before it was only £30/hour. There is something similar under clinical trials in Holland.
I have tried Devil's Claw in the past and found it about 70% effective for pain in my hands. It was recommended on the Arthritis UK website. I do not have any osteo arthritis - my problem seems to be largely with tendons. I have tendonitis in my thighs just above the knees and it is quite sharp - had it for about a year.
I do worry about getting atherschlerosis as RA causes inflammation in the arteries, hence I think it is best to do as much exercise as possible.
As regards the thrush, I use products by Biocare including Replete which is a probiotic - thrush is a natural inhabitant of the bowel but it overgrows. Ever since I started those around 30 years ago, I have been able to eat normally. Up until then, I was starving on a special sugar-free diet. A couple of glasses of red wine per week helps to keep the sugar level down and stave off thrush.
Thanks!
Can I ask, on severity of RA, how severe would you describe it?
When it came on initially in July 2014, it was severe and totally disabling and continued to worsen for nine months. I then had the electro acupuncture in March 2015. I took Chinese herbal tablets from May 2015, being careful to see the results of the tablets and the acupuncture separately. Both worked very well but were best together. I also had "hot drug oil" which I rubbed into my hands and arms and I had shoulder patches impregnated with the same herbs.
I had hydroxy together with the Chinese medicine and electro acupuncture in 2016 and all three combined together to relieve the shoulders completely. Both were affected, one being worse, but I did not realise that until resolved. Until mid 2016 it was severe and disabling.
I have had flare ups in my hands and odd pains since last Easter in my thighs, lower leg going numb again (which had happened in 2014 around October). I perhaps would describe it now as either mild or middling. I can do most things. In 2014, I could not write my name, pour from a kettle or teapot, turn the tap, open the door with a key, handle coins. I could not pull a zip or do up a button or get a bra on - there was weakness in my forearms and the shoulder stiffness also prevented all this in addition of stiffness in my hands. I could not reach to close or open a window. I really was disabled but I am not now and quite frankly conventional medicine has proved useless. Pain has never been the overriding factor for me - it was always disability. I did get pain which made me scream and occasionally still does but it is momentary. the hospital always try to take credit for relieving the shoulders but this was not the case - it was largely the acupuncture and Chinese medicine.
I forgot to say that anti histamines relieve the pain in my hands and I use them regularly - Fexofenadine from the GP or else just Loratadine.
Was just reading your reply, thank you so much.
It's very interesting what you say about Chinese medicine. I'm actually taking antihistamines daily prescribed by gp. They help with urticaria. I don't have relief in my hand with Desloratadine.
Great to read you have found a management therapy which works for you.
I wish you continued good health xx
Hello Everyone,
Quite a heated subject rather like the pain we all suffer. I cannot take any RA meds as I am on several other medications which interfere with each other negating the good the RA meds can provide. My specialist knows all of these complications and I manage as best I can. My choice is help the RA and die of organizing pneumonia or keep me alive but manage my RA through meds. Guess which one I have chosen.
Feel for you!
There is some science behind baking soda, which is why I take it.
Good read here. I was diagnosed in Jul 2014 and in remission in Nov 2015. My rheumy did mention the drug free remission but she also worried the possible flare after that. Today I am still with 7.5 mg mtx and 10 mg letflunomide and I strongly suggest to follow the instruction and treatment of our rheumy as they are the experts.
I don't take any medication, I tried in the beginning but didn't like the side effects.
Please tell me more.
I have more good days than bad,unless I have a flare,which I really don't have to often. I walk alot to keep my joints from stiffening and swelling. I also put apple cider vinegar in water every day and drink that which helps with swelling also. The only problem I really have is my hands in the morning are so stiff and sore so I run them under warm water, that usually works. But of course it's best to listen to your doctor everyone's situation is different.
Agoodlife/Simba:
In your previous incarnation, you were taking low dose naltrexone. I periodically post on this subject as it has worked extremely well for me. I just started a new thread on it.
I took aspirin the first year (of which 8-9 months I was un- or mis-diagnosed,) until a few months into the LDN, but stopped due to gastrointestinal side effects. (Still slowly healing that w/ diet etc.) So aspirin was the only other drug I have taken--no pred (for RA; single previous use decades ago for an injury was disastrous.) And no DMARDs, no biologics, no antibiotics, no anti-malaria drugs.
I managed my MS/fibro w/ diet and lifestyle alone for decades, and still do. But they were no match for this RD. Maybe I'm lucky that I was contraindicated for all RD drugs; it forced me to be brave, to read the literature, and since there were no clinical trials, to do one on myself. Actually, I was lucky there, too, because you can't titrate in a clinical trial, and I believe that the individual's optimal (Goldilocks) dose is the secret of making LDN work.
Four years now on LDN, and I am still in 95% remission of late/polymyalgic-onset severe systemic RD. Please check my other posts, and reply to the new thread with your recent experience with LDN, or if you've quit, why. I don't believe I can quit yet, but since I seem only to have good "side effects" from the LDN, I'm not worried.
So I guess it depends if you consider LDN to be a "drug." It is, it just isn't a mainstream one.
Disclaimer: I am well aware that people's experiences with this drug vary. However, I do believe it should be an option off-label.
Thanks.
I am so glad to hear that LDN is working for you👏yes I am stil using it. For me it has been working with pain, sleep and new neck problems.Not connected to RA. What dose are you taking? How much aspirin are you taking? I will look at your thread most certainly!
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