Has anyone ditched the meds and felt better?

bing

Hi all,
Im currently on leflunomide for psa and I think its maybe making a bit of a difference plus its cleared my scalp of psoriasis. The thing is, I dont know how happy I am about taking meds like this for the rest of my life. Ive recently improved my diet, cutting right back on sugar and I take flaxseed, chia seeds, turmeric and wellwoman capsules (b vits, oils and such) which I think have made a difference more than the meds.
I was wondering if any of you have taken a more natural holistic approach and how successful have you been?
Julie x

ian3900

Hi Bing I'll be very interested to see the replies to your post. I have just been diagnosed with psa, very mild couple of dodgy toes and a swollen finger. Toes been like it for years and finger started up 6 months ago. Psoriasis has been minimal since diagnosed 35years ago in my teens. I have been asked to go on Sulfasalazine as drink too much for mtx. I am so keen to find a different way than scewing up the rest of my life by going on this horrible drug. Has the med done you any good? Ian

ian3900

Sorry meant Julie! Ian

dreamdaisy

I stop my meds when I get 'properly' ill with something that require anti-biotics and always feel better in myself for doing so despite being poorly. I soon physically feel the difference without them though, my already-limited mobility decreases.

Before I was diagnosed I tried all kinds, homeopathy, reiki, physiotherapy, diet and nothing stopped the inflammation in my left knee which is hardly surprising because they were not addressing the underlying cause of the trouble. The meds, however, do and that's why I need them. I once had three months off everything and ended up stuck in bed for ten weeks. I might not like taking them but I need them. DD

bing

Im kind of on a mission just now to research as much as I can so anyones experiences will be great!This is a personal thing for me but you never know I may be able to help others through this too.

My background is that Im quite passionate about nutrition with experience in people, equine and more recently canine nutrition and the most recent course ive taken and area of interest is herbs, I also use reiki a lot in my life. Im trying to use an holistic approach.
I do think the meds have taken the edge off the pain I get in my fingers, however unless I stop taking them for a trial I dont know if its the other changes Ive made.
I do agree that the key is to address the underlying problem of the immune system which in turn will alter the whole body. I do feel that if we dont give our bodies the best fuel we can we wont get as far. The other side of the coin is, of course giving our bodies toxins and unhelpful substances and its much harder to avoid than you might initially think. Im currently trying to avoid sugar but its near impossible to avoid altogether and current research about it is quite scary, especially as its so easy to be addicted to.
Please leave me a comment on your experiences,
Thanks

dreamdaisy

Over-active immune systems respond to triggers that do not affect others because theirs work as they should. Ours are faulty, end of.

I was born with eczema which Ma attributed to her having a curry in the early stages of pregnancy - this was back in the dark ages of 1959 As I grew my skin responded to dairy, Vitamin C and scented soaps etc. giving me appalling eczema (once my Ma worked out the links I lived on a very restricted diet and bath times were hell thanks to the salt she added to the water). My asthma was not as easily controlled because that was triggered by grasses, fir and birch trees, pet dander, a huge variety of pollens and low pressure weather, many of which are hard to avoid. (This was pre-inhaler days.) I remember my Ma took me to a faith-healer called Harry Edwards (this was back in the 60s when nobody knew anything of any value about intolerances) and his house reeked of cats. I didn't do well.

Spring, summer and autumn were the times when I could breathe out for ever but not breathe in. I don't recall the three occasions that I passed out due to lack of oxygen (obviously!) but I do remember waking up in hospital surrounded by plastic. The world was fuzzy.

I gained my eczema and asthma from Ma's side of the family and Pa generously contributed the psoriasis: they led healthy lives until old-age moved in. By the time I was sixteen more was becoming known about why things ran in families so the answer was obvious.

Sometimes things don't work as we think they should and there is precious little we can do about it - hence the role of the meds. DD

stickywicket

In all the years I've been on here we have had one person, as I recall, claiming to be able to control her autoimmune arthritis by diet alone and that is 'bitsinabag' who has simply eliminated gluten from her diet. There was, in addition, a woman in Inspire magazine, called Somerset King, who claims to have 'healed herself' of RA by eating just a plant-based diet. 'Bitsinabag' can speak for herself as she's still around the forum. Somerset King has a website http://tinyurl.com/zamhpt4

There is no doubt that a healthy diet and lifestyle make significant differences to anyone, let alone anyone with arthritis of any ilk. There is also no doubt that an autoimmune arthritis can, especially in the early years, go into remission spontaneously apropos of nothing. We are all tempted to attribute these remissions to whatever we did differently at the time. And then, just as spontaneously, the arthritis returns.

As I recall, you haven't been on leflunomide very long and, as all DMARDS take up to three months to kick in properly, I don't see how you can accurately attribute things feeling better to the altered diet and dietary supplements.

As regards toxins and nutrition, virtually any food can be toxic if we eat too much of it. That's why it's so easy to overdose on herbal supplements and vitamins when taken in pill form but virtually impossible to do so when just eating the actual foodstuffs.

I understand – and share – the fear of powerful medication. That's one reason why I keep pain relief to a minimum. That, at least, is within my control. But an autoimmune arthritis is a powerful disease. It won't be subdued by a couple of multivitamin tablets.

I think, paradoxically, the 'anti-DMARDS / biologics' attitude many people have is a direct result of the massive difference they have made to the lives of people with arthritis. Forty or fifty years ago, pre-DMARDS and such, I'd find my rheumatology clinic full of people with greatly deformed joints, many of them in wheelchairs. Now, when I go, I'm virtually the only one. My fellow patients all got on the right meds early enough to avoid my fate.

An autoimmune arthritis is a very 'toxic' disease. I wonder (and I don't mean this unkindly), if you had been diagnosed with epilepsy or diabetes, you'd be so keen to take the holistic approach and to avoid 'medication for life'?

ian3900

Hi Julie\Bing you absolutely have my support in your quest, for information about diet .Support is what these forums are supposed to offer. I am at the early stage of the journey so have little information to offer, but I completely understand your approach and support it.

As you will see from the thread, on 21st March when I got up I had not heard of PSA. Later that morning I was told that I had it (probably) and was given a life sentence to be on sulfasalazine. Subsequent discussions with my rheumy have established that the drug may or may not work (there is a 50 to 60 % success rate). It's highly likely to be life limiting both professionally and personally. It could be very dangerous, and the prospect of it has brought me to a recurrence of the depression I managed to beat twenty years ago.

It acts by suppressing the immune system, to my mind an evil thing to do to our bodies. My business life starts each day getting on a train of a thousand people who carry a multitude of different illnesses, including possibly chicken pox, a particular vulnerability whilst one is on the drug, and especially so for me, as I have never had it. If I don't conduct my business I dont get paid and if I don't pay the mortgage I lose my home.

My PSA affects two toes and a finger. Ultrasounds now show there is no bone or joint damage, and there is talk that it might be gout aggravated.

Rheumy insists that the benefits of the drug outweigh the disadvantages, without even being prepared to listen to the person and his concerns. Repeat, won't even listen. A classic case of treating the disease and not the person.

In such circumstances we have every right to ask the questions you are asking, and for them to be taken seriously.

I am afraid I don't know much about diet. What I do know is that I am seeing a counsellor who is helping my with my stress levels, which run quite high. Stress is a trigger of PSA so we will see if it has any effect. She is a clever woman and is gently guiding me to a less emotional decision as to what to do next. Maybe I do need to do the drug. But I am not going to pump this filthy stuff into my body without full understanding.

Regards previous comments on the thread, I know nothing about epilepsy, but if faced with early stage diabetes the first thing I would be is look at diet. I absolutely would.

Please do let me know Bing anything that you find out. I am glad you are asking the questions.

Ian x

dreamdaisy

Ah yes, the grey area of support; if you receive the replies you want to receive then it's there whereas if you don't it's not.

In my time on here there have been many people telling us that if we took more care with diet, supplements and general well-being we wouldn't be in the pickles we are: all well-meaning advice from people who are generally new to the whole malarkey and lack the long-term experience which the rest of us 'enjoy'. The assumption that we haven't tried to improve our lots is upsetting, to say the least.

It's not compulsory to take the meds. I take them because I understand what they are doing and I understand why they are necessary for me. DD

bing

Firstly, I apologise for not being on here for a while, sometimes life gets in the way to use one phrase. Also Im not always the best at explaining things so please bare with me.
Thank you for all the respones so far, very interesting and I will try to respond as best I can.
I have been taking leflunomide for 6 months now and as I said above I do think they take the edge off. I think more specifically the other changes I have made so far have helped my overall daily life. I feel less down and the depression which I could feel creeping on has for the most lifted now. Also unless I trial not taking the meds I dont know how my joints will feel.
Its not about taking a few vit/mins or pills and hoping for the best, its about making little changes and monitoring how it effects me. I am lucky in that its fairly early for my joints with this and I am not suggesting that anyone else hasnt tried whatever they can to help themselves. If the meds work for you thats great.
If I did have epilepsy (which I honestly dont know much about) or diabetes I would definitly be looking at it in the same way. There are a lot of things I cant change. A lot of external factors I can do nothing about however there are many things I can change especially my diet and lifestyle at home so I will try.
I had my most recent gp appointment this past week, it seems my vit D is low so thats another area to try to sort out. My gp however, when I told him my plan to eat the best food/diet I can and my trial of cutting out sugars didnt really have anything to say other than change the subject back to me researching vitamin D myself (his suggestion rather than him give me the info).
Going back to the immune system, I accept mine doesnt work the same as other folks, however until the last few years it chose not to attack my joints, so that gives me something to think about. It managed quite well without any meds I probably will never know why it changed but doesnt stop me trying things to help my body cope the best it can.
Ok enough of an essay for now, off to read the links above,
Julie

bitsinabag

Hi I`m bitsinabag. I posted on `living with arthritis` my experience of living drug free after taking a range of meds to combat RA. The post is `rhumatoid and food`earlier this year. By simply recording my inputs and how I felt each day 1-9 on an A4 it was pretty straightforward to identify the relationship between wellbeing and food/drink/drugs. It has for 9 years proved wholly successful for me and some of the others I have suggested this to - but not everyone.
Do let me know if I can help in any way.
All the best
bitsinabag

LignumVitae

I ditched the meds in order to clear them from my system so I could consider pregnancy. It was hell. I used accupuncture and other things to try and control arthritis but they didn't do anything other than provide very temporary pain relief and I became really rather ill very quickly. If you attempt to reduce or remove your meds I hope you have better success than that.

I have never found that changes in diet play a part in my arthritis whilst I do know that stress and how that is managed does impact on my arthritis. That said, I could meditate for days to reduce the stress, it won't stop arthritis, just helps me manage my approach to it. If you look on the internet there is LOTS of information and diets and supplements being offered as an alternative to meds, there is little evidence to back up the claims people make. When you attempt to 'dig' a little to uncover what meds people have replaced with their magic diet or supplements you often tend to find that people are a little hazy about it. I wish you luck in your search.

There is a chap called RA guy who blogs about living without meds. He works lots on acceptance and is quite entertaining to read. He does however seem to be in the situation quite different to most in that he doesn't seem to work adn when in a flare can manage to just hide away until it passes. He is also relatively recently diagnosed so who knows whether he will be able to maintain the drug free approach in ten years time and he has only been drug free for about 12 months, before that he was on a long term dose of steroids. He may be worth looking at though to give you ideas.

elnafinn

I was diagnosed with OA years ago. I have stopped the meds after taking painkillers and anti inflammatories for many years. I feel better in myself after stopping them a good year ago. .
I was suffering greatly with stomach and bowel problems which have greatly improved as a result of no longer taking them. I live with the pain and exercise and do walking every day.

I am awaiting to go in for a revision of my total knee replacement performed in 2010. Unfortunately it was only fine for three years.

Today I had a US Guided Aspiration of my knee which will be done again when I am in Theatre and my heart and lungs tested as on the day of my pre op assessment it was one of the junior doctors strikes so it could not be done.

Now I wait patiently for an op date.

Elna

Elna

elnafinn

After I stopped taking Etoricoxib (Arcoxia) on the advice of my GP as my BP was high my BP came down and I was able to stop taking the Lisinopril for high BP and now only take a water tablet. None of the other anti inflammatories he offered appeared to suit me. So that was that.

Elna

stickywicket

elnafinn wrote:

I am awaiting to go in for a revision of my total knee replacement performed in 2010. Unfortunately it was only fine for three years.

Today I had a US Guided Aspiration of my knee which will be done again when I am in Theatre

I'm sorry to hear this, Elna. That must be very disappointing for you. Have they any idea what went wrong?

I can't help wondering what's the point of a guided aspiration during a knee revision op? I'd have thought if the TKR is being replaced nothing further would be required.

I hope it all goes well. My knee revision was about 8 years ago now and, despite requiring bone grafts, is amazingly strong. I hope yours will be the same.

elnafinn

Hi Sticky

The surgeon is looking for infection hence the knee being aspirated today. He would like to know in advance if possible, what antibiotics I may need if there is infection which he seems to think is a possibility. In theatre once he has opened up the knee etc he said he would get fluid/tissue checked again for infection. This hospital has the facilities to do this quickly as he mentioned going for a cup of tea and then coming back to continue with the op. If there is infection I hope they know what to treat it with as he said I may be in 10 days until they work out what to do, which I do not really wish to do if at all possible.

Thank you for your good wishes.

Elna

stickywicket

I hope that's just worst case scenario.

The day before I was due to be discharged after my knee revision the new young registrar told me they'd finally, after several days' worth of trying, managed to grown a minute bit of culture on my removed TKR and so I'd have to be on anti-bios for 6 weeks and he wasn't sure they came in tablet form. I might have to stay in on a drip.

It was Dec. 23rd. I told him to look carefully for some. He came back with tons of flucloxacillin and I never looked back.

I hope yours proves as straightforward.

elnafinn

Thank you Sticky! I hope so too.

Elna x

dreamdaisy

Hello Elna, I was upset to read your last few posts, I sincerely hope that all goes as well as possible and that you make a full recovery. I send my best wishes, be kind to yourself and take care. DD

elnafinn

Thank you for your good wishes, DD. I hope all goes well too. I am rather nervous about it I must admit.

As I shall probably be laid up post op I may well return to bore you all with the details and for support.

Keep on, keeping on,

Elna x

bing

Elna, good luck and hope you are feeling better soon. I admit it is something I have no experience of.
Thank you for all your comments and links, Im just looking up RA guy.
For me I do think frame of mind has a huge impact on my daily wellbeing. Ive been a bit down this past week which seems to have come alongside a flare of joint pain and also alongside a cold wind which I know really drains me and starts off some aches.
Im still much better than I was though and still investigating what works for me. I think I also need to remind myself exactly what is going on in my immune system, I tend to forget details so will be looking at that again and which then leads to exactly what leflunomide is doing.
Ive also just found a small patch of returning scalp psoriasis, tiny just now but shall see how it develops, if it does.
I do know for a fact that it wont be one thing that helps me, it will be a collection of many small things which all contribute.
Right, better go feed my ponies and do some more reading later.
Thanks all.

daffy2

I do know for a fact that it wont be one thing that helps me, it will be a collection of many small things which all contribute.

I think you've hit the nail on the head here. It's what can make it difficult to work out cause and effect - makes me think about how difficult it is to do drugs testing effectively(setting aside all the issues around desired outcomes etc) since we're all individuals with our own responses to things and ways of living our lives, only some of which the drug companies can know about or control or even consider relevant.
It's human nature to attach importance to what may in fact be coincidence, and I suspect that is what is behind many(not necessarily insincere) claims of 'curing' disease A by method B.
If a drug controls a disease sufficiently to enable an individual to take on other ways of dealing with that disease does that mean the drug is unnecessary? Not sure it's as simple as that, but I wonder if there are cases where the drug input can be at a lower level than might otherwise be the case because other health issues are being corrected/improved by whatever the individual is doing. My take on it is that if I feel better in myself, for whatever reason, then it becomes easier to do other things which are likely to be beneficial. Feeling some element of control can be very important with chronic conditions and makes them a bit easier to cope with.

bitsinabag

daffy2 wrote:

I do know for a fact that it wont be one thing that helps me, it will be a collection of many small things which all contribute.

I think you've hit the nail on the head here. It's what can make it difficult to work out cause and effect - makes me think about how difficult it is to do drugs testing effectively(setting aside all the issues around desired outcomes etc) since we're all individuals with our own responses to things and ways of living our lives, only some of which the drug companies can know about or control or even consider relevant.
It's human nature to attach importance to what may in fact be coincidence, and I suspect that is what is behind many(not necessarily insincere) claims of 'curing' disease A by method B.
If a drug controls a disease sufficiently to enable an individual to take on other ways of dealing with that disease does that mean the drug is unnecessary? Not sure it's as simple as that, but I wonder if there are cases where the drug input can be at a lower level than might otherwise be the case because other health issues are being corrected/improved by whatever the individual is doing. My take on it is that if I feel better in myself, for whatever reason, then it becomes easier to do other things which are likely to be beneficial. Feeling some element of control can be very important with chronic conditions and makes them a bit easier to cope with.

Well said, a sense of regaining control is so important. It is the very reason that I advocate recording and reviewing one`s inputs and wellbeing for a couple of weeks at a time now and again.
It can be amazing what patterns emerge.
All the best
bitsinabag

Tubby

You might want to look at Jason Vale (juicemaster.com), Joe Cross (Fat, Sick & Nearly Dead) and Clive Padderson. All are using diet to control auto immune diseases. The first two have free documentaries you can watch.
I find diet is very influential on how I feel but I have not ditched the Meds entirely. I suspect they might be about to ditch me though (the Entenercept seems to be failing). I have a friend with RA and she is doing amazingly well controlling her condition with diet but she does't work so can spend all her time on being well (exercise, diet, stress relief etc).
Good luck.

bing

Thank you, more for me to investigate and follow up.

An update on where I am at. I stopped the leflunomide 2 weeks ago, and so far Im not doing too badly. Its early days yet but I have noticed a few improvements so far. I would wake in the morning with very painful feet and that just about gone now, so definitly a bonus. I suspect I have also been through a bit of a detox of feeling a bit yuck and achy but I seem to be picking up again (although my dodgy vertebrae are complaining not psa). My fingers so far are no worse and no better, still on and off with how painful they are.
I am also going to see a different GP to see if he has does at least undertsand where Im coming from. I suspect the rheumatology dept at Aberdeen have forgotten about me but I think that could be useful just now.

I am fortunate in that I dont go out to work so can go slow at home if I wish, however I do have to care for 5 ponies, 14 sheep, 2 dogs an adult daughter and hubby and am just starting my own business of nutrtionist and holistic therapies.
Im not totally anti meds but if I can manage as much as I can without and at least hold off for as long as possible then it can only be good for me!

daniivca

Sorry I'm a bit late joining this topic, I just want to say that for many years I went without any medication for my arthritis and it was awful for me personally, as soon as they diagnosed what it was and they got me on the proper medication I've been so much better. Don't think I could come off the meds all together as I don't think I could cope again to be honest with the level of pain I used to be in and the severity of it. Saying that I know what I should avoid food and drink wise as that can set my arthritis off so I suppose diet can have something to do with it but I don't think I could come off all my meds.