Date: 16.09.2015
From: Pippa
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Subject: No Meds
I was diagnosed with Sero Neg RA two and a half years ago.
I chose not to take the drugs on offer.
I am still OK , no pain , just mild stiffness in my feet in the morning that's gone within minutes.
Anyone else out there experiencing the same lack of horrific symptoms I was warned I would have, if I didn't take the Methotrexate prescribed by a rheumatologist ?
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Date: 16.09.2015
From: sleek fox
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Subject: Re: No Meds
It's the joint damage they are worried about, though that can be less invasive with sero neg. Also, the heart disease and lung problems. This stuff doesn't show up early on, though I have joint damage and I've had Sero Neg RA for 6 years and I've had treatment. The joint damage has only just started and it's very painful. You might be lucky and get away with it. Long may that last.
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Date: 17.09.2015
From: Pippa
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Subject: Re: No Meds
Thanks for your reply sleek fox.
May I ask where your pain mostly radiates from ? Do you get pain in your feet ?
The more I read , the more I tend to believe that sero neg and sero positive are two different diseases, every ones symptoms vary so much!
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Date: 17.09.2015
From: sleek fox
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Subject: Re: No Meds
There are 200 types of arthritis and many share the same symptoms and the treatment for sero neg and sero positive are similar. I have a number of friends who have the latter and their symptoms are identical to mine. It's true that different joints can be affected. I have one friend who only ever gets problems with her feet. I have problems with my shoulders, wrists, fingers, knees and sometimes my feet. Think of RA being on a line, some people have mild symptoms and some severe and lots in-between.
I also have lung damage that can be from the RA. It's not a disease to treat lightly in my view.
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Date: 18.09.2015
From: Pippa
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Subject: Re: No Meds
I agree its not a disease to treat lightly. I go for regular blood work.
Apart from the initial flare up 32 months ago, my CRP and SED rates are now normal. My rheumatologist confirmed Im in remission and said this was not presenting itself as true RA. Whats that supposed to mean ? I paid to have a private test to rule out AS but that too came back negative.
I have an aunt that suffers with inflammatory osteoarthritis and her fingers are deformed and look more like the hands of a rheumatoid. Its all so confusing !!!!!
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Date: 18.09.2015
From: Sleek Fox
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Subject: Re: No Meds
That's wonderful. You are very lucky. My bloods are always good but that is common with sero neg, I'm told by my consultant. I tried two months off steroids and immediately got into a lot of trouble. I think people do go into remission spontaneously (though I'm slightly confused you are told you are in remission if you still have symptoms in your feet.?)
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Date: 18.09.2015
From: Colin W
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Subject: Re: No Meds
hi Pippa , my sister is sero neg & sometimes take a anti-infammotory but nothing else , just be greatful you are lucky & dont need the stronger drugs , just be careful you dont get joint damage & that is the point of the stronger drugs
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Date: 18.09.2015
From: Pippa
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Subject: Re: No Meds
Sleek fox ,my rheumatologist told me that normal blood work, alongside stiffness or pain lasting less than half an hour in the morning is classified as remission.
Colin ,may I ask how long your sister has had sero neg RA ?
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Date: 18.09.2015
From: Sean
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Subject: Re: No Meds
Hi Pippa I also shunned drugs early in my disease - I have a suspicion that although MTX may work for some it is also renowned for causing intestinal damage (not a good idea in any autoimmune disease) - hence it is probably the cause of many needing stronger and stronger drugs. Once the gut barrier is broken then it pretty much any ones guess how the immune system will react to the bacteria, undigested proteins that flood in. It is the same with constant use of NSAID they are also strongly linked to intestinal permeability - and I now avoid them regardless of pain. Good luck with your brave decision!
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Date: 18.09.2015
From: sleek Fox
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Subject: Re: No Meds
That's great, Pippa. Gives me hope I might get to that point myself. I find a G&T quite helpful for pain. Or two...
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Date: 18.09.2015
From: Sean
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Subject: Re: No Meds
Pippa - if you have time please also read this article as I truly believe it is the start point to greatly reduced symptoms for many people! Just stumbled on this tonight,,, http://www.cleanandleanrevolution.com/wp-content/uploads/2013/11/Zonulin-IMCJ_ABIHM_Pizzorno.pdf It's not about being allergic to wheat it is about its affect on gut barrier regulation and then cross reactivity to bacteria that causes AS and RA. The science is clear and undisputed.. Yesterday I also found a website from an NHS GP in Cheshire who appreciates the possibilities of this new research and healing through diet - and I have sent her my story her website is here http://www.healthylivingsite.me/
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Date: 19.09.2015
From: Barry
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Subject: Re: No Meds
I have a lot of pain in my feet, same as in both knees wrists, lower back( arthritis and spondylosis ), same again in my neck, then arthritis again in my shoulders, upper part of my jaw both sides, thing is I also have very loud tinnitus, I can take very few meds, NSAIDs sends my tinnitus through the roof, it's as though tinnitus, apart from being a constant annoyance also warns me off drugs, like an internal alarm going off, I struggle with diet, I cut out gluten, try to cut out refined sugars and processed foods but on a low income and reoccurent depression from the whole affair, I need some god to help pave the way. With me I truly believe the diet won't cure, but it will relieve so much of my suffering, just such a struggle. I've only been basically diagnosed with OA, and spondylosis recently, don't really know what other arthritises I'm dealing with, doctors ,consultants, never discuss diet with me, I go it alone now, without medication, but in so many ways it's like treading in a minefield, I have frequent problems with allergy sensitivitys, continually stripping back my diet, fasting, gradually reintroducing foods, it's hard work at first, with all of us it's all about willpower
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Date: 19.09.2015
From: Barry
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Subject: Re: No Meds
And getting it right
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Date: 19.09.2015
From: Pippa
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Subject: Re: No Meds
Sleek Fox I am a red wine woman myself, but I was given a bottle of Hendricks recently. I found it very refreshing & cucumbery , I may yet be a convert !
Sean , thanks for the links ,wish this site had the facility to just tap onto them. Will be taking note and reading up. As for me being brave I think it was more a combination of fear, naivety & a dash of stupidity that stopped me taking the Methotrexate. I am hoping it proves to be less of the latter in the long run.
Don't get me wrong ,I haven't come on here to be smug by saying "look at me , Im drug free and a walking medical miracle *. Ive learnt since being diagnosed that these diseases are unpredictable and that's the scariest thing to deal with in my opinion.
Barry , when this all began it came out of the blue. I went to bed feeling feverish and woke up in agony , my hands, feet , knees looked like they had been pumped up with air, they were that swollen. Even my voice was effected. My fast track rheumatology appointment got postponed due to an admin cock up , I didn't see a rheumy for five weeks. By the time I went I was noticing improvements.
I am not sure about the effectiveness of diet, but I am a firm believer in adding friendly bacteria into the equation.
I too lack willpower when it comes to food. I look at my 97 year old gran who has flourished on a diet of full fat milk ,butter , cheese , cheap cuts of meat , minimal veg " rabbit food " she calls it, and I wonder where I have gone wrong !!!
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Date: 19.09.2015
From: Barry
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Subject: Re: No Meds
Pippa, my mothers the same, at 99, eats a whole variety of fats, piles the salt on everything, but she seldom gets stressed out, lives in a much smaller world, or so it appears, 3. Regular meals a day, sleeps at 9 pm, up at 6 am, methodical, she's had it hard in the past, expects little out of life now, and she's happy with that, you seem as though you've had a gut reaction to something, like something you've eaten, a shock of some sort, maybe even an insect bite, such a reaction, really hope it settles for you soon, this is no club too stay in, take care, barry
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Date: 19.09.2015
From: Colin W
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Subject: Re: No Meds
Pippa , dont realy know how long my sister been sero negitive but its a long time like 20 years , around when I started with RA , she dont like needles & wont take the anti-inflammatories unless she has to but I can see damage being done with her hands & her knee the differance with myself is they started sulpha 5 months after being told I had RA & methotrexate 18 months later but by then I needed surgery on my ankles , now they will start drugs alot quicker , generaly sero negitive tend to have it milder as long as its under control ,
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Date: 20.09.2015
From: Pippa
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Subject: Re: No Meds
Barry thanks for your kind words. Are you a full time carer ?
Colin, I too am needle phobic so can emphasise with your sister ! x
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Date: 21.09.2015
From: Barry
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Subject: Re: No Meds
Yes Pippa, unfortunately I am, at 63 with a 99 year old mother I find it difficult to cope, social services provide a basic cover for which I am grateful, but arthritis hampers all my efforts, I also strongly feel I could manage my arthritis far more efficiently had I not this situation, but such is life I guess.
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