Just visited my sister

[andyswarbs]

After many many years with arthritis controlled by drugs, my sister has now been housebound for ten years and relies on drugs to function. Recently she had a fall and has had a steel plate inserted in her broken femur. Not nice, but at least she has a very positive outlook on life and I love her to pieces. Anyway I don't want to talk so much about my sister, especially as she is not here to defend herself.

Yesterday I went through the range of drugs she has, above and beyond the MTX. I feel very sorry for anyone who is taking drugs that correct the problems other drugs cause. With MTX you need to take folic acid, as almost everyone here will know. That is caused because the way MTX works is to inhibit the body's natural ability to produce folic acid. On top of this she is taking thyroid drugs and...

Every drug has side effects, hopefully small, but inevitably side effects build over time. Sadly the goal of main drugs for arthritis is simply to mask the pain rather than cure the problem. My sister's fall was made worse by osteoporosis. I think that if, years ago, she had had the benefits of my research & recuperation then she would be a much healthier person.

Of course, like me she has a very stubborn streak and that means she would not listen to my advice, as probably I would not listen to hers. I cannot influence my sister very much. But please anyone here who has an open ear and serious arthritic problems. Don't stop your meds, but do get your diet right. For my money that means stop the gluten, stop the dairy, stop the meat & fish, stop the oil, stop the nightshades incl tomatoes and potatoes. Replace them with fresh veg and salad every day. It takes three months for the gut to repair itself, at least. As the gut repairs then the joints can, with rest, to a larger or lesser extent repair themselves.

If the diet changes help you, then at some point you might be able to reduce your meds, with suitable advice from your doctor. Every time you do that your body will naturally be able to heal itself more effectively.

Actually I am in an argy-bargy with my doctor & rheumy who think, "ah the MTX is now working, so let's increase the MTX." Stuff that for a lark. If I want very bad inflammation and excruciating pain then I can have a normal dough pizza with cows mozarella cheese and a tomato base. This is a perfect storm for me, imo, and I would be housebound for a week at least.

A large dose of MTX and other dmards over several months is the doctor's recommendation. Mask the problem and create other problems later in life? No thanks!

[Barrister]

I'm sorry, but I have to disagree with one point you make - DMARD's and biologics are not taken to mask the pain, they are taken to reduce inflammation and to prevent further joint deformities.

[andyswarbs in reply to Barrister]

true, my apologies for my inaccuracy.

[helixhelix]

How sad that you both have rheumatoid arthritis, I know there is a small genetic component but both of you pulled the short straw. Although having said that both my sisters have other auto-immune diseases.

I'm pleased that you specifically said not to stop meds as I do so hate this diet:drugs debate often ending up as having to take one side or another. To me both have a role. We are each so different that we do have to find our own balance between them. And we shouldn't make people feel guilty for their personal choices.

Some time after I was diagnosed, and once the disease was better controlled, I started on lifestyle changes. Not just diet, but also exercise and stress reduction and so on. And yes, it helped. But not enough to be able to stop the drugs. For me the effect has been to make me tolerate the drugs with virtually no side effects - and I take three DMARDs plus the usual extras. About once a year I have another go at dropping one dose of one of my DMARDs, and it usually lasts a couple of weeks before I have a major flare and have to go back to where I was. I still keep to a pretty clean diet, and live an exceptionally healthy lifestyle up on my pollution-free mountain-top with my vegetable garden....but I still need the drugs too. And I agree with Barrister, they do a lot more than mask pain. So nice if food changes worked for everyone, but they don't sadly.

[EmmaS-NRAS NRAS]

Hi Andyswarbs,

Just to carry on from Barrister's point that the goal of DMARDs is to reduce the activity of the disease as much as possible which in turn can help reduce symptoms such as pain and inflammation by removing the cause. It doesn't just mask pain.

You can read more about DMARDS and how they work on the NRAS website: nras.org.uk/dmards

Kind regards

NRAS-Emma

[Fra22-57]

How I wish it was that easy.I do eat healthy and am about 9 stone in weight.When you are in pain you accept what these medical people say and take what they offer.I take 16/17 prescribed tablets a day which include warfarin for another auto immune disease.At least I can get out of bed now and walk down the stairs.Before I couldn't even turn in bed and had to come down stairs on my bottom.I wanthe to come off the steroids that I have been on for nearly 5 years.Consultant added Hydroxy chlorine to my meds yesterday so hopefully that will help me more and eventually I can start reducing.

We all hate taking medication and wish we were well and able again but you don't get these diseases by choice

[andyswarbs]

Fra22-57 you are dead right, when in great pain then meds are the thing - arthritic pain has its way of growing and building in both intensity and range, no matter how much we simply wish it to go away.

Looking back to my first days on the Paddison Program I remember now what "proved" to me that this approach might work for me. It was the detox. From several months of uncontrolled pain and inflammation before starting the program, simply drinking just water for several days I found my inflammation and pain disappeared. I was in seventh heaven! My wife caught me crying, I said to her they were tears of joy!

The detox started as just water, and I was so happy with relief from arthritis I felt I could have stayed on just water forever, but of course my body needed nutrition at some point. So the detox then moved on to cucumber and celery juice. And from there I added pseudo-grains dishes and at that point immediately pain and inflammation came back.

During the following couple of months whenever I added another food back in my body's initial reaction was pain and inflammation. Almost every food stuff caused me problems. And so to the meds... I felt a failure because at this stage because I needed the meds. However interestingly, with patience, I found my body began to tolerate the simpler foods.

This was a horrible phase also because there was no flavouring. The food was soooo boring. I hated looking in my food cupboards at home because I could not eat anything in them.

Starting with a detox and then building up ingredients one by one is not easy. It's boring and very few people believe that what you are doing makes any sense so you are largely on your own emotionally. The only thing that kept me going was a vague feeling that I was beginning to come back from a cliff-edge - and believe me I jest not about that cliff.

I have won a hard battle, probably the hardest in my 60 year life. And all the time in the back of my mind I ponder, why didn't my doctor EVER suggest dietary changes might help instead of keeping up the cry, "keep taking the tablets."

[Hidden]

Autoimmune diseases are scary and painful!! Everyone is different at how long these horrific diseases disrupt our lives. I personally have had 2 autoimmune diseases in my lifetime. I had MS when I was 23 and I was lucky that it just went away. I developed RA when I was 48 yrs old.

People should be happy and thrilled that their autoimmune diseases calmed down and went into remission.... I completely understand telling people our story of surviving autoimmune diseases...it just upsets me that people whose autoimmune diseases just go away and they feel they have the "secret"...Let your sister be and enjoy the fact that your autoimmune disease has started to go away. You did nothing to cure yourself...you are just lucky..

take care and I wish you well

Sue

[andyswarbs]

I am sure everyone here hopes, beyond hope, their arthritis just goes away. Just over a year ago I was working a night shift lifting very heavy parcels for eight hours a night: today I can hardly lift a full kettle. Just over a year ago I was doing several long distance walks at a pace: now I shuffle along the pavement. Just over a year ago I considered myself one of the best swimmers amongst my friends: now my feet seem to drag along the floor of the swimming pool. If Beheelzebub stood in front of me with an offer I would be sorely tempted.

As it is with the state of my gut as it is and my current diet limitations I know that any day I want to bring back extreme inflammation and pain I can just eat some cow's milk or cheese for instance. Then I can just wait up to 24 hours and I will be so stiff and suffering horrible fatigue, possibly lasting for several days if not a week.

Perhaps one day in the future, as my gut mends and strengthens I will get to the point of being able to enjoy one of the many fabulous cheeses, a croissant or perhaps even a sticky toffee pudding. Oh, and my drinks cupboard has a range of fine malts that are my pride and joy: all of which I dare neither touch nor even look at.

The digestive system is a miracle of engineering that no-one fully understands. Yes it is possible for some people to swill lots of cigarettes and beer down it and survive very happily.

Others are not so lucky, the digestive system goes awry and all manner of disorders burst forth. It can be any of a number of auto-immune diseases (ie enzyme disorder), for me it is a mix Hives, Rheumatoid, Osteo and Psoriatic Arthritis. Until Beheelzebub comes with that poisoned chalice I will live with my problems, accept them and deal with them.