Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Visit to the rhuemie

Hi there folks, good to read all your posts and welcome to the new people who have just joined us. Best of luck with the diet. Question for the oldies on this site: has the traffic increased alot in recent times?

I just wanted to fill you all in on my trip to the rhuemie (I am just back). Went to the AS Clinic in Leeds and saw the head guy there. Well he reconfirmed my condition, said my mobility was quite bad though I was lucky it wasn't in the joints and said that I have a damaged disk further up my spine which was nothing to do with AS. Anyone else have this? I spoke to him about the diet and Ebringer and somewhere in the conversation the words 'junk science' were used (though he was speaking about 'these' type of treatments). He explained how it's very difficult to be able to judge the efficacy of any treatment/remedy because AS naturally moves into a remission by itself on a cyclical basis. He said that any AS sufferer should have their eye on the new drugs (of which Enbrel is one - can't remember the term - TKA or something) on the market in the US and currently being tested in the UK. He said they will be available here in the Autumn and they are the first drug developed that is really able to tackle AS. However, when I asked him how long you have to take these drugs for he said it wasn't known yet. I then asked him about Sulphalazine EN and asked him could he prescibe it to me. He said that if I was worried about the toxicity of NSAIDS then that this drug had much higher toxicity. He said that it was a very strong drug therapy, that it takes 3 months to have ANY effect on AS and really 6 months to work. Again I asked how long I'd have to stay on it for and he said indefinitely. He said that I should not think about getting pregnant on it and would have to be off it for 3 months before doing so (may think about it in the future!!!). He said I would have to get blood tests every 2 weeks for the first 3 months and that I would have to be in a place where that is possible (i.e. he advised against the drug if I was going to go out to Africa to continue the development work that I do). Also because it dampens your immune system. He said he does not prescribe antibiotics for AS as there is no proof that they do any good.

So basically, I came away pretty depressed and not really any the wiser. What do you guys think? Is sulphalazine EN that bad? If I want to get it I probably can - he said that - but he said to think carefully about it. Or should I go with antibiotics or is the diet enough on its own with supplementation?? I know these questions have been asked before (and answered!) but I just would love some feedback about what the man said as I am currently feeling like I have an incurable disease that I am going to have to live with forever - which is probably true but I so want to get cured.

Sorry for rambling, folks and have a nice weekend - you all. Make sure its got some lovely juicy steak (for the carnivores amongst us), definitely some vino, and maybe some sweet treats. Besides just have fun!

Ali

Ali,

yes, traffic has increased recently.

TKA? - probably tumor necrosis factor blocker TNF - I think it comes from cancer chemotherapy and suppresses the immune system. There is an article in the current Journal of Rheumatology about it and it refers to concerns about dangerous infections resulting in some cases from its use. The pharmies are pushing it because it costs a fortune and want to expand the market for it and the rheumies are starting to play.

Ebringer prescribed sulphasalazine EN in addition to NSAIDs, I took it to get my ESR down to managable levels then stopped. A few people are allergic but taken for a few months say could help a lot together with the diet. You wouldn't have to take it indefinitely, once your ESR is down and staying on the diet you shouldn't need it. Your bigger problem will be staying starch free in the jungle.

As for the junk science - its discussed in the latest textbooks; so we'll be kind and say the toss pot was responding to the internet...

Thanks Bilko - I am definitely still thinking about it. I have a stupid question - what is regarded as a high ESR? Mine is currently around 48. Is that considered high by you guys? On the diet - I believe there's lots of animals to eat in the jungle!!!!
Ali

Hi Ali,
Sorry about your disturbing visit! I don't really have any input but to try to encourage you to stick with the NSD. You do see an improvement, so hang in there!
I wanted to answer one of your questions that I do have knowledge of, that is because of personal experience. I have a point in my back (I believe 7th thoracic) where I had damaged to a disk. My chiro actually pointed it out to me about 4 years before diagnosis. I damaged my soft tissues he said when I was still a child. That is where my pain was for about 10 years on and off before my other AS all kicked in. My alternative Dr said that AS very often settles into an old injury, which I have also read is true. My lower back & hips did not start hurting until after I had my babies.
Hope this helps and keep us updated.
Janet

ali,

i have just started azulfidine EN. after only 1 week on it, i have noticed some improvement in my AS symptoms (not pain free, but improvement). i have been on NSD for 5 months so this may have something to do with the quicker results i have seen.

it is true that you need regular blood monitoring especially when you ramp up on the drug. in terms of pure toxicity, my feeling is that it is more toxic than nsaids, but definitely less toxic than mtx or these newer drugs like enbrel and remicade. however, i believe the azulfidine attacks the root cause of AS which is probably in your intestines. as you know, nsaids just treat the symptoms and the newer drugs are just fancy ways of short circuting the inflammatory response of the immune system. the nsaids may also weaken your intestines, adding fuel to the fire for the long term.

i disagree 100% that you must take any drug for the rest of your life. that is a choice the patient makes. i think you can take the azulfidine to get your disease under control and then experiement with dose reduction to see if you can control the AS naturally. why would your doctor say you must take azulfidine indefinitely when he earlier said the disease cycles and can naturally remit? why would someone want to take a drug when they are in remission? this is a reckless and contradictory statement made by your doctor.

-ken

Ali,

I can't answer your questions regarding Sulphalazine-EN or antibiotics but I will say this. Any doctor who isn't willing to open their mind to the possibility of people being healed by alternative methods is ignorant. Our bodies are designed to heal themselves if we give them the right tools. And any doctor who doesn't think nutrition and diet are a VERY important part of ANY healing process is doing you a disservice. It doesn't even sound like he knows that much about Enebrel or the long-term consequences. To me that is "junk science". Anyway, I've heard far more good things about Sulphalazine than any of these DMARDs. I guess my strongest motivator is my mother who has had RA since her 30s. She tried all kinds of new drugs that were supposed be "disease modifying" and stop the progression. Well, she is virtually crippled now and I feel strongly that years of these toxins advanced her disease and did little to stop it's progression. On the other hand, my father has had AS since his early 30s. He certainly went the more natural path by eating healthy, exercising daily and using NSAIDS only when absolutely necessary. He did go into remission for many years, but it has since come back. But I believe it would have been far worse for him had he followed the same path as my mother. (Bad gene pool I come from, huh?) Anyway, I think many others will agree that Sulpalazine-EN is a better way to go than Enebrel.

Just my opinion for what it's worth!
Meredith

Hi Ali,

I just typed a really long response but got disconnected - bummer! I'll summarise instead with my terrible shorthand.

Salazapyrine (Salaz.) is a sulfur drug and EN is enteric coated so the drug is activated after going thru stomach and into intestines. May work due to the antibiotic nature of the Sulfur or some bel. the immunosupressant nature. Can affect the liver (so "vino" or oth. alc. not to be consumed) BUT I see you're from Ireland so like me (Aust) you'll likely ignore this so my exp. has been on low dose I can have a couple of glasses wine or some light beers (2 - 3). Salaz. usually takes in most lit. 4 - 6 weeks to fully take effect but I started noticing diff. after about a week. Usual dose is 2 grams/day (1000mg/morning and 1000mg evening) but usually starts off at half this for first mth to see results of blood tests on the liver function test (LFT) and white cell count (WCC) as it can suppress immune system and therefore your WCC that is used to fight off other normal infections. I was on Salaz. for 2 years with no adverse reactions except orange urine which was quite novel at the urinal at the pub when observed by the bloke either side of me.

If pregnacy is antic. then don't take Salaz. Prob. no reason why you can't just be pres. 1 x 500mg to start with (although this may not make a huge diff. but maybe you need to weigh up rick v benefit.

Re. ESR mine is us, around 70 - 80. Has been over 100. I bleieve that anything below 30 for AS is quite good and around 50 would be middle of the road. This of course is my opinion.

If going to Africa it depends on whether you are rural or urban based I guess in relation ot disease risk.

Hope this helps - an alternative is garlic. Its a natural antibiotic - has high sulfur content.. Downside is its odour - upside is its fairly cheap and you can drink heaps with it . You can also get enteric coated garlic tablet (you can in Oz anyhow) that a) don't smell and b) work well for me. Ihave these in morning and fresh garlic with meal at night. You just need to do more chewing gum but this may be an answer if you are afraid of the Africa/immune risk. After all a billion Indians can't be wrong!!!



Don't think you can - KNOW YOU CAN

Ali, an ESR of 48 is high and indicates active AS. You should certainly be trying to get it below 20 initially, and eventually into single figures. Salazopyrin EN would help do that. I was wondering, do you think his reluctance to prescribe it could be due to the necessity and expense of organising blood checks and more appointments? When I was on Salazopyrin I went to the clinic every 3 months.

Bilko, I must say that I have been on the NSD for quite a long time (and fairly strictly) and if I could get mine back to even 20 I'd do cartwheels. I think the point is that some people have a very high active AS, others moderate and others I know personally in our AS Group in Australia you would hardly know they had AS.

I think there could be a number of reasons for this but the most obvious one I believe is that those who had a very active AS that required (or were "put on") immunosuppressive drugs long term as I was (Methotrexate and Prednisone) for 2 years, have a more difficult (but not impossible) task of getting the condition to a manageable level. When one is on these drugs things are usually a lot better but in my experience once you decide to come off them after an extended period, your condition is far worse than before. This could simply be because the body's immune system was not fighting the Kleb. and allowed it to get out of control.

I guess thats why I have been so supportive of probiotics. My aim is to get my intestinal flora back to a pre-AS condition and then I would suspect that it follows there would be no need for a NSD (but perhaps an LSD for some insurance)

Don't think you can - KNOW YOU CAN

Hi there all and thanks for writing back. Have to say I am a little confused now though. Its seems we have quite a range of opinions between us on what we should be taking along with the NSD. Obviously we are not going to all agree on this exactly and probably shouldn't as we all have different bodies BUT I do think it would be worthwhile having plenty of discussion and perhaps research into what goes best with the NSD.

On the probiotics - I had seen some people here talk about the benefits of probiotics so I thought I would invest (ouch!!) and get some. Did not feel any better on them - think I felt worse. Its so hard to know what causes our pain but certainly over the days of taking them I had alot more aches than usual. I also have a completely stiff and sore shoulder at the moment that is either AS related or stress-related (again I am not sure). I have had bad reactions to live yoghurt and now I have to probiotics so for those of you who cannot eat live yoghurt I would advise that you also stay away from probiotics.

On the immuno-suppressants and the TNF-factor drugs - what do we really think on this? Some say that it does you some good for a while and that there aren't too many side effects; others say that you will be good when you are on them but worse when you come off them; and others say don't touch them. I don't expect us all to agree on this but is there any way that we could try and reach greater consensus about these therapies. Also with antibiotics - my rhuemie said that there is NO evidence that antibiotics help AS - if there was they'd be prescribing them like mad.

Maybe I am way off the mark suggesting that we really try to tease this one out but seeing as we are all on the diet, could some of us agree to try and take EXACTLY the same supplements/drugs as a way of testing them.

Just a suggestion - maybe I am crazy

Ali