Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group sulfasalazine, erosions, acupuncture and physio

Hello KickASers. I am a new member.

Hoping for some help. (Sorry in advance for a long post)

I am in my late 30s. Married with two children.
Up to my early twenties I was very active in sport/fitness, but onset of variously ankle, shin, knee, back pain stopped that. I spent years shuffling between doctor, podiatrist, physio, osteo, etc.

Finally approx six years ago and after a battery of the usual tests my Rheumatologist diagnosed AS. I experience AS in the lower back (some degeneration in SI joints) but primarily in my ankles, feet, wrist, hand and knuckles. There is a spot on the back of my head which frequently hurts - apparently it is a nerve ending or something (?). I have had one flare up in my chest.

Until now I have made do with NSAID (Orudis) for periods of time including in event of flare-ups and then dropping back because I didn't like the idea of being on it long-term.

I have pain and reduced function esp in my ankles, knees and hands but had basically resigned myself to this. I am so busy balancing work and family that I just allowed myself to live with it.

I am embarrased to say that I never really spent a lot of time researching the condition - and I have never met anyone who had heard of it let alone with direct experience....until now.

The turning point was that after another bad flare-up (left hand) my Rheumatologist identified Erosions in two fingers (one on each hand). Now he wants to put me on Sulfasalazine.

This (Sulfasalazine) has freaked my wife out, and worries me (to a lesser extent than her). But it has lead me to this site among others in trying to learn more about the condition and possible other treatments.

So (finally) here are two questions...
1) Is it realistic to think that acupuncture, diet, vitamins, appropriate stretching and exercise can reverse the erosions and give me back function - or at this point I do need a DMARD?
2) I have a good naturapath and acupuncurist but I am on the search for a Physio or OT or similar (in Sydney) who has experience with AS. Any recommendations appreciated. [I might create a separate post since I probably lost many readers some chapters ago..]

Thanks for anyone who stuck around for this long post. I guess it is a kind of therapy to get all this off my chest - thanks for the opportunity.

Hoping for some feedback.

hello and welcome!

that spot on the back of your head: sounds like the occipital muscle / occipital nerve. was a real b u g g e r for me for the longest time. but PT and finally sleeping on my back with a thin feather pillow did the trick. now it flares only rarely.

when it does, i focus on treating the muscle spasms in my upper back and neck, mostly heat and ice and ultrasound and stretching, and antiinflammatories for the inflammation of the joints that is causing the muscles to spasm......a real domino effect.

you ask the question, can you do it "more naturally" or do you need the dmards? i'm still trying to do it "more naturally" or well, as much as possible, and do think i'm better between flares, but still can't prevent the flares. still i'm working on it. its nice to know the sulfasalazine is there if i want to start taking it. that makes trying the supplements, healing the gut easier, just knowing i have a safety net if i need it. so for me, the jury is still out on that question, but i too am trying.

for me the things that have been most effective have been trials of naids (but side effects so not an option), pred (but again don't want to resort to that long term due to side effects), cortisone shots as needed (again, i try to use them only as a last resort when i have to). thus far none of the supplements really seem to be helping with the inflammation, though the high doses of fish oil is only about 2-3 weeks in. but things like Ca/Mg/D/CoQ etc help with other parts of the disease (like the bone loss or muscle tightness). but hoping the probiotics (2-3 weeks into that as well) might help; have immediately noticed an improvement in my bowels. LSD for the last few years helped my insulin resistance but not my inflammation, now trying paleo. LDN (low dose naltrexone) has helped me quite a bit, especially between flares. and a flector patch (topical nsaid) over my SI for the last year has given me much needed relief; not perfect, can't compete with a flare, and my butt does hurt a bit most days, but compared to without, like night and day.

don't know if anything "heals erosions" as you say. but anything to prevent new inflammation would be a good thing

Hello. I have fairly severe AS, but i also am a chiropractor and have a biological sciences degree. I feel that i know about this disease a lot not only educationally but experientially.

The advice that i will give you is stemming from my education and my personal life and observation of what works and does not.

If you want to take the natural route, i do believe that with the right combination of supplements you can profoundly improve your symptoms... but only to a point. It is worth trying first to see how well it works for you... then if you notice that your still not coping well and it is still too painful then you need to utilize the medical system and take medication unfortunately.

You want to avoid a long term medication that you need to take orally... such as NSAIDS like advil. These have side effects that lead to stomach ulcers, and liver problems. You also want to take the best type of medication that will give you the biggest bang for your buck. So will not only be relatively safe to take, but also the most effective. This will be a TNF blocker. Enbrel, symponi are examples. I recently took this. Within 3 days literally (it works faster if your younger)... i was jumping, hoping, summersaulting, running, and moving like i havent moved in years. I thought i would NEVER do those things again. I was barely even walking before and almost had to give up my career and now i have literally ZERO pain and disability. However, they do not come without side effects. People have problems with fungal and bacterial infections when on this drug as it decreases your immune system. However, if you are careful and notify your doctor of any changes (cough that doesn't go away, increased levels of fatigue) then it should be no problem to catch early and treat. You need to make the decision if the risks outweigh the benefits for you. So if you take the drugs you could get sepsis, lung fungal infection, increased amounts of sicknesses throughout the year... but you have no pain, you can keep your job, you can be happier, you preserve your spine! This is one of the only sure ways of preventing spinal fusion is to take the TNF blocker. Also, once you can see the erosions happening on x-ray and MRI, you want to start taking this much more seriously. Once this happens, it can be much harder to get it under control so you need to start being very active in your treatment and ensure you have this under control as soon as you can.

Also, you can look forward to the fact that this disease tends to burn out and go away by 45-50 years of age.

It is my opinion as an educated person medical provider and a sufferer of the disease that to think that acupuncture, diet, vitamins, and appropriate stretching and exercise can reverse the erosions and give back function is very unrealistic. This is not to say that it does not help substantially. Let me explain this. Firstly, erosions do not reverse. You can only prevent them from getting worse. The only way to prevent the erosions is to bring down the inflammation. Exercise will help you to get your function back, but if your inflammations are really bad you wont even get a chance to exercise! it will be too painful. It is in my experience that diet/supplementation can only eradicate MILD/MODERATE inflammations. So if you have mild/moderate AS then you can be substantially helped by this and may avoid DMARDs most of the time. However, if the disease is bad enough that it is eroding, spreading, very painful, affecting activities of daily living, beginning to cause fusion... you need help with stronger medications. BUT you do not have a DMARD as your only option. In my opinion... i would do the supplements and diet changes, the exercises and acupuncture. If it does not help you get to a good functional level with no more further erosions you have to turn to something else. The goal is to prevent the erosions from getting worse. NSAID and DMARDS have nasty side effects and you want to try to aviod these. The best option, in my opinion, is the TNF blocker. As long as you are careful and watch out carefully for fatigue, cough that doesnt go away, etc. you can be substantially helped by this drug. I was unable to work or function, after taking the TNF blocker i am normal. I went from barely walking to running marathons if i want to. Talk to your doctor about that option. Aside from the problems with lowered immunity, the TNF blocker is the safest choice compared to long term NSAID and DMARD use... and those wont even work as good as TNF blocker. The TNF blocker was shown in the research to be the best at preventing further progression of the disease and it works particularly well in AS.

I received substantial amounts of education in nutritional health and i tried on myself at the most extreme inflammatory times in my disease combination of supplementation and i found a combination that worked for me. This completely eradicated my mild and moderate inflammations and reduced the amount of times i was in severe inflammation each month. When the inflammation is high or severe there is nothing stopping that but a TNF blocker... but i noticed that these supplements at least decrease how many times you reach that point.

-#1... attempt to reduce the amount of dairy and wheat/grains that you are eating and replace it with other alternatives as much as possible.

-8 capsules of omega 3 per day (NO OMEGA 6) -preferably very high EPA:DHA ratio.
-3 ginger capsules per day
-drink 3 green teas per day (decaffeinated or caffeinated)
-1 vitamin D per day
-6-8 capsules of CURCUMIN (turmeric) per day
-1 multivitamin
-you can also look into taking Quercetin on top of all that as well.

Stick to it and after a couple of months i looked back and realized i was less stressed from the pain, crying less, no more pain in the mild/moderate joints, no more bouts of mild/moderate pain, less occurrences of high/severe pain. The thing is you have to take it for awhile. The omega 3 needs time to replace all the other inflammatory causing fats in your body.

Good luck with everything i hope this helped

Welcome to KickAS.

Like you I dislike taking med's unless absolutely necessary. I have had very aggressive AS since my early or preteen years depending on what you consider a manifestation of having AS to be.

My mother has had AS manifested in her 20's and now 50 years later she is still very well off for someone who had AS very severly in her 20's and 30's. Her mother also had AS but it was never diagnosed or treated. With no med's or treatment she had horrible later years, due to other health consideration she did not live a long life.

My mother was put on Sulfasalzine in her early 30's and it was a miracle drug for her, essentially haltingh the progressio of her AS and reducing her flares greatly. She still takes it all these dacades later.

The same med did nothing for me, that is no ill effect or benefits, just nothing. I have found relief after much of the damage to my body was done at a young age through dietary change when I am consistent, acupuncture and massage. I never tried the biologics because by the time they were available with some results to make them seem less risky I had too much structural damage to want to risk any infection or problem since I am accustomed to my current pain levels.

I wouldn't fear the Sulfasalazine, some folks have immediate negative reaction but everyone knows their won comfort level when it comes to risks and med's to be tried. It just seems like there are many different options that work differently on each of us. I hope you find the ones that work best for you.

Hi Sydney and welcome to KA!

Hugs,

i think you should read my thread

Hi Izunia,

Thank you for sharing some of your knowledge and experience. I just wanted to address one thing in your post. AS does not burn out and go away around ages 45 to 50. Perhaps in some people it does (this disease is maddeningly arbitrary in nature), but it certainly doesn't in a lot of people. Me included. My disease is only being controlled by Enbrel at this point, as well as dietary changes, exercise and the odd Celebrex and/or asprin. If I have to go off Enbrel, as I have to this week because I'm on antibiotics for a chest infection, believe me, at age 47 I feel as bad as I did when I was diagnosed almost ten years ago. And my disease is still progressing; albeit at a much slower pace due to the biologic meds.

Anyway, not trying to cause a dispute (or indeed hijack another thread today). Just trying to clarify that there are no hard and fast rules when it comes to AS. We are all different and will all experience this disease in our own ways, with our own set of symptoms and prognosis. You're young enough that you probably never heard, "Women don't get AS." Too many of we women of a 'certain age' heard that when it was 'common knowledge'. Luckily, as with many things, the medical community has changed its tune and now recognizes that women do, indeed, get AS. I expect that the idea that AS burns out in your mid to late forties will go the same route eventually.

Anyway, thank you again for your input.

Hugs,

go to phoenixtears.ca, go to testimonials, click ctrl+f(find) and type in ankylosing. You will read an amazing article of how the "new" chemotherapy called hemp oil can change your life. Its a fountain of youth

G'Day Sydney Guy,

I am a Physio in my 30's with AS and am on anti-tnf meds. They have given me my life back (including getting back to doing triathlons). Research has shown them to be the only meds that can stop radiological progression of the disease (i.e. changes in joints that can be seen on x-ray/MRI. Sulfasalazine has been shown (again through rigorous research) to help peripheral joints (e.g. hands, feet, knees) for people wth AS but not the spine/SIJ. I think the post from Izunia is excellent.

No harm in giving the non-tnf route a go. It didn't work for me and by the time I went on the anti-tnfs the potential benifits well-outweighed POTENTIAL side effects. I have been on them for 6 months and have only had one sinus infection. The real risk of serious illness (e.g. sepsis) is actually really low (you are probably more likely to die in a car accident!).

Feel free to PM me if you want to discuss more and all the best with your journey.

i apologize if my information is incorrect. I only felt comfortable writing that because 2 rheumatologists have told me that one of them being an AS researcher.