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Date: 08.06.2013
From: Sue

Subject: What's happening

Hi I am new to the forum I wondered if anyone has some advice for me. I was diagnosed 4 years ago with sero negative arthritis lots of pain and put on steroids and mtx my liver function went screwy so taken off the mxt I have tried one other drug but it didn't work. My rhumatologist suddenly announced he did not think taking new experimental drugs would help as he now feels I don't have that condition but would like to continue monitoring me 4monthly in clinic... I have pain swelling and am finding it hard to work, (I am an artist) my blood work crp goes up and down and I am not sure what to do ... Please help
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Date: 08.06.2013
From: bsk

Subject: Re: What's happening

Hi Sue, welcome to the forum. Sounds as if you are in a bit of a bad situation. I am sero -ve as well so understand the difficulty in diagnosis but my rheumy now treats me as having RA.

A couple of things i want to say. Firstly, the drugs aren't experimental, they are proven to work and some of them have been around for quite a while. It's just they are expensive! In order to get them you have to have a certain score, called a DAS score (you can check this out in the internet.) It's something you might be able to ask him to do next time.

Secondly, the nature of sero -ve means diagnosis is hard but if you have inflammatory arthritis you have inflammatory arthritis!!! And it sounds as if you have some kind of inflammation and arthropathy so I don't understand why he is refusing you the drugs. Has he said what he thinks is wrong?

You could do one of two things. Either wait for your next appointment so he can see how bad things have got and insist on some treatment - there are other dmards apart from Mtx. Or you can go back to your gp and ask for a referral to another rheumy.

Can I ask if you are still on steroids? They can mask blood results and inflammation levels. I know as mine are always low in spite of obvious swelling and pain.

Some people might suggest you try an exclusion diet. I have a friend who went on one and it appeared to work but the arthritis came back with a vengeance. It also doesn't prevent underlying joint damage but it might help control the pain. There are a few books around about it. I tried it for a while, it didn't help and was extremely hard to stick to.
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Date: 08.06.2013
From: Sean

Subject: Re: What's happening

Hi Sue

Please take a look at this short video about one of e causes of autoimmune diseases - it elaborates on the science of what BSK mentions above.

It is hard to stick to - but this is real valid science and there are many thousands of us in the world taking this approach

http://youtu.be/IvUgcLQOUSA

Please consider when the man is talking about gliadin that other proteins can set off the same reaction - which can be bacterial or food molecules like gliadin.

I am 100% sure that my arthritis is triggered by food and bacteria.

I came across this the other evening - which follows some of the other measures that I am also now taking with fermented foods to ensure gut health.

http://www.autoimmunemom.com/diet/dr-k-autoimmune-hypothyroidism-diet.html

Hope you can find some relief.

By the way there are lots of reasons why some thing will work for a while and then don't work. Many forms of Arthritis are multi factorial - within multiple food intolerance on the one hand and a bacterial gut balance issues. Cutting out a few foods for a period of time without addressing other imbalances does not always work.
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Date: 08.06.2013
From: Bsk

Subject: Re: What's happening

I knew you would jump in here Sean!
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Date: 08.06.2013
From: Sue

Subject: Re: What's happening

Thanks Bsk no am not on the steroids am without anything swollen hands feet and wrists, feels like walking on broken glass when I get up and if I sit down during the day , I have seen the hand team who are surprised at his decision but think I needed the reassurance to go back to my GP. The rhumatologist was treating me for RA but in one appointment when I asked if there were other drugs available to try, he suddenly announced that they were experimental and he didn't feel they would help as he was now doubting his original diagnosis !! But I should continue you to see him every four months and monitor the condition and he would inject the worst of the joints at each visit.

Sean I am sure you have a point but right now I want to understand how this doctor can change his mind after four years and challenge that decision, I am not some nearing middle aged woman he can fob off and tell to go away. This is a relentless condition which I am fed up with. I am look at your video once I have sorted this out. Thank you.
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Date: 08.06.2013
From: Colin W

Subject: Re: What's happening

Hi Sue , liver function problems is one of the side effects of Mtx , I had it & had to come off Mtx, couple years later they let me try it again & same thing happened , my ALT went up to 170 & instead of coming off Mtx they raised my folic acid to six days a week taking 5mg & since my liver funtion is back to normal & taking 25mg Mtx now along with a Anti-Tnf drug

if your CRP is still high it means your arthritis is not under control & need better medicaltion & would consider taking Mtx again with high dose folic acid
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Date: 08.06.2013
From: Sue

Subject: Re: What's happening

Hi Colin I have tried the mtx three times and my lovely normal liver function goes threw the roof after about 14 weeks, no one has suggested upping the frolic acid thank you for that. My crp is all over the place completely inconsistent my GP says that this can be very normal I seem to have no less pain and swelling when it's low I never know what it's going to be anymore. Last blood test it was high but I don't feel any different to when the one before last was low..
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Date: 08.06.2013
From: Colin W

Subject: Re: What's happening

Sue the great thing with higher dose folic acid that it helps other problems with Mtx like hair thinning , still alot of the consultants dont like giving the higher dose because they think it will slow the effect of Mtx but with it we can take it & take the high dose of Mtx if needed , talk to your consultant about it , its a lot better than having high steriods , other thing is to maybe ask for one of the anti-tnf drugs
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Date: 08.06.2013
From: bsk

Subject: Re: What's happening

Sue, I wouldn't be so sure that middle-aged women get fobbed off by anything! Not this one anyway.
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Date: 10.06.2013
From: Linda

Subject: Re: What's happening

Hi Sue. I have Lupus/RA. I was sitting in the waiting room at the rheumatology clinic, when a lady with RA told me, after six months on Mtx her liver packed up. It put me right off.

Fortunately my Lupus/RA is mild because I was older when I developed it. So I have never been offered anything stronger than steroids and Hydroxychloroquine, the safest of arthritis drugs.

Like Sean, I also believe autoimmune diseases start in the gut, and elimination of certain foods can help.

My daughter is also an artist, she studied Illustration at Loughborough University. She has OCD and that also impacts on her work and her ability to function. Please let us know how you get on.
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Date: 10.06.2013
From: Colin W

Subject: Re: What's happening

just been looking up causes of RA , strange all these experts claim the causes are unknown when Sean can tell them

& Linda , problems with Liver inflamation causes by MTX are well known & one of the reasons they take regular blood test ( ALT test ) so there is no way of causing long term liver problems , if she did she would become jaundice & in hospital for test ,
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Date: 11.06.2013
From: bsk

Subject: Re: What's happening

Linda, you say 'nothing stronger than steroids'. I know all about them as have been on them for four years, unfortunately.

They can cause osteoporosis, cataracts (which I've had to have operations for on both eyes), diabetes to name but a few of the side effects. They are not a benign drug at all.

I don't know whether autoimmune diseases start in the gut or not but it is dangerous to give anecdotal information about drugs to people who might rely on them. If someone had liver failure they'd be extremely ill and if it had packed up entirely they would be dead. I didn't like Mtx but know of quite a few people who do well on it and have no side effects at all. It prevents joint damage and allows some people to live a full life.
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Date: 11.06.2013
From: Linda

Subject: Re: What's happening

I well aware what steroids do to the body bsk. I am taking 5mg which is a low dose. As I have been feeling pretty good for the last few months, I am going to ask my dermatologist if I can take an even lower dose when I see her in July. All drugs have side effects. Some worse than steroids.

My rheumatologist told me that steroids were the second line of drugs for autoimmune diseases, hydroxy, being the first.

I'm also aware from reading this forum that some people do very well on mtx. I personally prefer to take the least amount of drugs I can get away with.

There's no need to be hostile so bsk to any alternative that doesn't involve drugs. There's loads of people out there who use diets and supplements to try and improve their health.

I can't be asked to argue over what causes autoimmune disease, or offer proof from research articles and books that I have read. Just to say that the other week, in all the papers there was the same article about the causes of back pain. Researchers discovered that something like 50% were caused by bacteria.
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Date: 11.06.2013
From: Bsk

Subject: Re: What's happening

And how is my statement about steroids being hostile to an alternative that doesn't involve drugs? I am saying the opposite. I am NOT pro drugs but I am against spurious claims about them. Funnily enough, I am 'well' on steroids too but that doesn't stop the nasty side effects, which are well known.

I repeat myself, I don't know if autoimmune disease is started in the gut. I'm not asking for proof but I've said clearly here, and other places, that diet hasn't worked for me. I've no idea what works for you. Apparently not diet otherwise you wouldn't still be on the steroids and hydroxy.
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Date: 11.06.2013
From: Sean

Subject: Re: What's happening

BSK,

Why do you think that every post is aimed at you?

Looking at Linda's post to Sue - there is nothing aimed at you just a different opinion to the one you have. I believe that drug strategy would be altered for many people if diet was also used - exactly as Linda has stated and works for her.

Colin - let's be friendly eh?

There is an irony that the first thing that comes up when you google causes of ra - is UMM university of Maryland - as they are at the cutting edge of autoimmune research and I have read a lot of it.

http://www.news-medical.net/news/20090908/Scientists-solve-the-mystery-of-zonulins-identity.aspx?page=2

This is just information - not to tell anyone they they are right or wrong - just information. Read it and use it if you want to.

I am only posting as I care and I am sorry that I do see so many people post with bad side effects and still suffer despite their drugs and best efforts of a rheumatologist.

Type "LPS autism" in to a search and see what the effects of gut related bacteria induced autoimmune conditions can be. Keep the bacteria in the gut and not leaking through (google "zonulin wheat"). Your normal "expert" rheumatologist would never study this!

How many people spend there time googling research on the "motility of the proteus mirabilis bacteria" - the experts are out there but no one is joining up the dots.

Let's crowd source all of our experience and knowledge - and we might get somewhere.
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Date: 11.06.2013
From: bsk

Subject: Re: What's happening

I really don't know what you are talking about Sean. I did not think on any level the post was 'aimed' at me. However, this is an open board and I can comment on what I like, just as you do. And I'm allowed to disagree with a post, just as you do. Look to your own posts before you start criticising me.
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Date: 11.06.2013
From: Colin W

Subject: Re: What's happening

Hi Sean ,
I did look at what you posted but cant see how there is any link to Coeliac Disease & autoimmune Arthritis , these links you need to be medicaly qualifed to understand them

I can understand there is a link to autism & live viruses in the intestines but the truth is they dont know the reason children regress at a certain age

as for autoimmune arthritis , most of us got some understanding where it started , my problems started 7 years earlier when at work a aerosol can of paint exploded & covering me in paint , & had an alergic reaction & after couple weeks holiday off work , I developed Occupational asthma as soon as I went back , asthma is not linked to RA but think my autoimmune system was damage by it when I think but cant prove is what caused it

they understand RA so much better now & why the new biologic drugs work so well

quote from wiki
RA is a form of autoimmunity, the causes of which are still not completely known. It is a systemic (whole body) disorder principally affecting synovial tissues. There is no evidence that physical and emotional effects or stress could be a trigger for the disease. The many negative findings suggest that either the trigger varies, or that it might in fact be a chance event inherent with the immune response
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Date: 12.06.2013
From: Sean

Subject: Re: What's happening

Hi Colin

http://www.umm.edu/news/releases/zonulin.htm

It really is quite simple - gluten opens the door and bacteria can enter. In celiac it leaves the door open - but in non celiacs it still lets the bacteria get in to the blood stream.

Immune system sees bacteria - and mistakingly thinks its you and makes t-cells and lots of b-cells to kill it but also your tissue and bone.

Keep the proteins out by following diets for treating a leaky gut and inflammation will be greatly reduced.

http://youtu.be/cv5RwxYW8yA

Celiac is a disease like RA - and gluten sensitivity can be a trigger for both. Also Asthma is heavily linked to the same studies.

I use Wikipedia a lot - but it's fairly static. I would prefer to use research sites - that cite recent studies.

I'm not cured and you are right we don't know the full picture - but I know enough to not need drugs but have spent time in pain getting to this point. My diet has stopped my joint damage and I would be worse off on drugs. My father suffered so much despite best efforts of the medical profession - 2 hip replacements, fused ribs and spine - psoriasis.

I could switch all of my old symptoms back again on in 2 weeks by reverting back to wheat, corn, cows milk, soy, lager, Guinness - I could be limping around with sore hips, painful ribs, lumps in my back - flaky skin, recurrent migraine, unbelievable tiredness.

Believe me and thousands like me - there is a link between joint disease and gut permeability / bacterial and foods.
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Date: 12.06.2013
From: bsk

Subject: Re: What's happening

Colin, interesting about your experience with paint. I used cadmium paints for years without understanding how poisonous they are and I've read RA is one of the things it can cause. Stupid of me not to know about it at the time but I am sure that's what caused my problems as I test negative for auto immune disease.
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Date: 12.06.2013
From: Colin W

Subject: Re: What's happening

hi bsk , the can was red paint & never thought of it containing cadmium & just thought its the aerosol itself , I managed a foundry & we used to mark casting with red paint when they left the foundry & what I was doing at the time , know I cant prove it but sure its all linked
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Date: 12.06.2013
From: Colin W

Subject: Re: What's happening

Sean , I did look at the link but its very old & if there was the link to other autoimmune disorders ie: RA & MS like they claimed it would be proven by now , some people are allergic to gluten but most people are not & there is no way they suffer allergic reaction from it , the ones that do it may compromise thier immune system but why would one get MS other diabetes not a illness proven to gluten & the stomache like celiac

TNF inhibitor , the early research was done here in England with grants from Arthritis Research at Imperial College London & by George Kollias (biologist) at the National Institute for Medical Research London , those of us with RA know how well these drugs can work but its still not the total answer , the new research in trying to switch this off is some of the most interesting research going but its several years from being available to us & may only work on females as males dont get remission from RA
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Date: 12.06.2013
From: marlene

Subject: Re: What's happening

This is not a very friendly post. Bsk I read this post and it seems they have got you all wrong. There is nothing hostile on here.
Sean you need to stop being so forceful. If it was all about diet we would all be cured and that is not going to happen. You admit you are not cured but better. Well good for you that is what we all want in the way we choose.
I believe whatever suits you and whatever you believe is great.
I have been posting with BSK for a long time and she is nothing but supportive and informative. Hostile she definitely is not.
I read Colin's posts with interest he also is informative and knowledgeable.

Linda I take from your posts you are suffering and I truly am sorry. Bsk has first hand problems with steroids and she is only letting you know what the outcome could be. I had no idea how bad steroids can be for you. I hope you feel better to-day.
Play nicely it makes the world a better place!!!!!!

Take care and have a nice day
x
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Date: 12.06.2013
From: Bsk

Subject: Re: What's happening

Colin, it's hard to know what triggers many things but the research at Kings about switching off the immune response is being trialled now (that spelling looks wrong!) I didn't know about it not working for men though. I hope that is not the case. My new consultant is at the cutting edge of research, so I'm told, so I will ask her about this at my next visit.

Marlene, thanks for your support.
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Date: 12.06.2013
From: Sean

Subject: Re: What's happening

Interesting article - Cadmium is especially harmful because it increases the permeability of cells, and allows for other heavy metals to leak into the cells.

I wonder if they include Gut permeability.

http://www.positivehealth.com/article/environmental/heavy-metal-toxicity-an-unsuspected-illness

According to my allergy / alternative health practicioner 20 years ago - I had high heavy metal levels - I took selenium to detox from mercury and zinc for lead. I still take these periodically.

Same with some reactions to vaccines that contain mercury. So I can see how this could be a trigger for the body to develop a dislike to other proteins that could "leak" through a toxic gut.
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Date: 12.06.2013
From: Colin W

Subject: Re: What's happening

Bsk , its realy looking good at the research they are doing at King's , dont think Arthritis Research & the grants given out gets enough credit in the changes into RA & other immune diseases over last few years

I have never had remission from RA & read that men dont get it , & the research at Kings they only used women in it & thats why me putting 2 + 2 together , looking on the net now they claim 52% of men get remission , just trying to workout what is right or wrong & should stick to my own rules & only trust certain websites like NHS, AR , AC & NRAS
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Date: 13.06.2013
From: bsk

Subject: Re: What's happening

Colin, I'm wondering whether women are used in the research because RA is more prevalent in women?

Arthritis Research are a superb organisation and I support them when I can. Although there are hundreds of websites with info, I sort of believe that if there was anything new and efficacious, AR or NRAS etc. would know about it and AR would be funding research. As you say, you really have to pick through carefully and trust your sources. Anyone can post on the net!

You could ring NRAS and ask them about men going into remission. I'm sure they would know.
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Date: 13.06.2013
From: Sean

Subject: Re: What's happening

Colin / bsk

My belief is that the NHS is a reactive organisation - stretched to treat people with the drugs they are offered by the pharmacuticals.

Our hope for cures is based on pharma wanting to cure us - they are the proactive part - but their proactive efforts are to make money.

I am sure that your rheumatologist would like to cure you - or give you safer treatment but there is a clear supply chain established.

From what I am seeing in the research the next big push will be medications for all those people that have not got arthritis (or celiac, cancer or crohns or ?) but might get due to genetics.

Prevention through drugs! So they are working on drugs that can prevent the disease - but no one know what causes the disease? Mmmm?

Even Dr. Fasano at UMM whose research I greatly admire is looking at a drug (Zonulin inhibitor) to give to millions to allow them to continue eating wheat.

Pharma is also moving in to 'functional food' in a huge way - to challenge alternative health - whilst at the same time fighting alternative health through political measures. For example Novartis has patented the use of a beneficial bacteria in foods called "lactobaccilus reuteri".
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Date: 13.06.2013
From: bsk

Subject: Re: What's happening

Well, let's hope they react to this research then. I'm not quite sure what you expect people to do in the meantime Sean.
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Date: 13.06.2013
From: Colin W

Subject: Re: What's happening

hi Sean ,

I also beleive that what you eat can have some effect on your arthritis , if you are right & Immune system sees bacteria - and mistakingly thinks its you and makes t-cells and lots of b-cells to kill it in the blood stream , the drugs to control this should solve the problems with RA but those of us taking these drugs know this is not the full story

the Kings College & Imperial College along with National Institute for Medical Research all in London are the worlds top experts in T-cell & B-cell treatment , they developed the treatments & are still trying to find treatments for it , & if you are right they would be the ones to be working on this . the work on binding immunoglobulin protein (BiP) look so interesting & the work they are doing on cancer treatment . Kings has a Diabetes & Nutritional Sciences Division & doing research on Coeliac Disease etc. but cant see anything that links to arthritis/t-cell

http://www.kcl.ac.uk/newsevents/news/newsrecords/2013/02-Feb/First-in-human-trial-of-a-new-drug-for-arthritis.aspx
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Date: 13.06.2013
From: bsk

Subject: Re: What's happening

What adjustments do you make to your diet Colin? I tried gluten free but it didn't help me. I can't eat rhubarb as it causes a flare but haven't found anything else that obviously affects me.
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Date: 13.06.2013
From: Colin W

Subject: Re: What's happening

mine is loads of fuite like grapes, strawberrys , Tomatoes, oranges , anything with currents/saltanas & red meat , dont like red wine anyway so not a problems , only 1% of people in Europe have problems with gluten so pretty understandable why most people it dont help , every one is just different & its the same with the drugs

still dont understand why this blood anti-tnf golimumab I am on is not working , not much side effects with it but on Enbrel it did work realy well but with the side effects
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Date: 13.06.2013
From: bsk

Subject: Re: What's happening

What side effects did you get with Enbrel? I get occasional headache and more prone to infection,but that's the same with all of them. How long have you been on golimumab?
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Date: 13.06.2013
From: Colin W

Subject: Re: What's happening

hi bsk , its the preservative in enbrel that can cause problems with some people with orange peel like rash & some with pain with it , it was giving me more pain than the arthritis which seem a bit pointless but my CRP was down to 2

having my third injection of golimumab on monday , its once a month so last of three month trail but think they will give me few months more , side effects with golimumab is mouth sores & made my depression a bit worse but extra pill sorted that , its got realy good press & being one of the new anti-tnf's out you would think it would work well
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Date: 13.06.2013
From: bsk

Subject: Re: What's happening

I had problems with enbrel and a rash too - massive one so they put me on one without preservative, which is much better.

Wish you the best of luck with your injection on Monday. I hope it does the trick.
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Date: 13.06.2013
From: Sean

Subject: Re: What's happening

If you do gluten free - you should cut out corn, barley & oats too - as most supermarket GF food has corn in? They had some rather nasty biscuits with a main ingredient of gluten free wheat starch!

you must also watch for sugars that are derived from wheat and corn like maltodextrin, glucose fructose syrup. I now only eat anything that says plain and simple 'sugar'.

Corn has its own protein similar to wheat gliadin called 'zein'. It has been proven to be more reactive to people with RA than wheat - it's the top allergic food for arthritis from the Darlington research that we discussed a while back. Top of the list!

http://www.thorne.com/altmedrev/.fulltext/4/6/392.pdf

Then there is cross-reactivity where other proteins (milk protein called casein) are recognised as if they are similar to the wheat (gliadin) and cause a similar autoimmune response -

http://blog.primohealthcoach.com/blog/bid/79586/18-Gluten-Cross-Reactive-Foods

http://www.internethealthlibrary.com/nutrition/Foods-CrossReacting-May-Contribute-to-Rheumatoid-Arthritis-The-GutJoint-Axis.htm

So what would I have people do until research leads to mainstream treatment. I'll let people make up there own mind - it's just information to share - to be honest I feel guilty that I am mostly better and hope others can learn from 20 years of trial and error and non stop reading.
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Date: 13.06.2013
From: bsk

Subject: Re: What's happening

Thanks Sean. I know about cutting out other grains etc. I think the diet is too hard for me and not effective. I think I might wait for more mainstream approach. Not all of us have your tenacity you know!
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