Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group problem with doctor

Hi everyone. I was diagnosed in 2012. On NSAID and tramadol. AS in spine plus peripheral joints. Was on methotrexate which was great for my joints then critical in hospital - pulmonary toxicity from methotrexate - nearly died . Drug stopped immediately now back to square 1. Allergic to prednisone and sulfasalazine makes me sick. GP just wants to treat the pain & says to stay away from all these other drugs because of side-effects. Im sick of the pain again. Seeing Rheumo this friday to get help again. Is it wise to 'bite the bullet' and take these riskier drugs or continue taking high doses of painkillers that in the end can wreck your liver.? Im feeling frustrated with my gp. Would like to hear advice and experiences please. Thanks everyone.

Hello, Sigrud57:

With Your history, I do not understand why You have not been offered a biologic trial.

But I would not stop there, in this disease, "diet is everything" and getting a copy of Carol Sinclair's book "The New IBS Low-Starch Diet," would be the best next step.

In fact, my experience with diet+antibiotics has kept me in solid remission for 15 years and during the most recent half of that time my actual AS has vanished, but I am stuck with damage from years of improper medication (NSAIDs) and improper diet (vegetarian/SAD).

You can overcome this disease, as so many of us already have, but it takes much patience and long perseverance.

HEALTH,
John

John's right, you should try a biologic. They definitely have their risks, but for most peopel they are pretty safe and well tolerated. Also look at changing your diet. Not every diet works for everyone, but some can help.

In addition, I would see a Pain Specialist for your pain control right now.

Hi Sigrud, I second everything the others have said. Treatment of AS must be truly holistic in that it should include lifestyle changes as well as medical treatments.

I, too, would encourage you to take a hard look at the biologic medications. There are scary headlines, but look at statistical fact - real life potentials. When I checked, I realised that my chances of being hit by a bus while crossing the road were greater than my chances of contracting a serious side effect from biologics. Also, very often, that increased chance of cancer is a minute increase. If the general population has a 1% chance of contracting a cancer, you might have a 1.6% chance. Do the heavy-duty adverse effects occur? Damned straight they do. However, your medical history needs to be taken into account, your family's also (ie. cancer history). And once you are on these meds, the international criteria call for checks at the rheumy every six months to make sure everything is all right and blood work every two months is recommended.

If your GP only wants to treat pain then he/she is on the wrong track. The inflammation must also be treated. It will progress without treatment - how quickly depends on your individual case.

I've been on biologics for almost ten years now - other than the odd infection or cut that doesn't heal as quickly as it should, I've had nothing go wrong. I've changed my diet to exclude wheat as much as possible. I make sure to do at least range of motion exercises every day, but endeavour to do pilates several times a week. I take Celebrex as needed and amitriptylene to help with my restless legs while I'm trying to sleep. Also, I have a favourite muscle relaxer.

I hope that helps.

Warm hugs,

I would certainly try the biologics. I tried several and regretfully they didn't work for me but I am certainly glad I tried. I have a lot of problems from long term steroid use and we are just doing pain management right now AND I am trying to get my food plan worked out.

Best wishes.

thank you everyone for the great advice. Saw the rheumo - he has changed my pain med from tramadol to Targin (which i had in hospital). He strongly advised not to try anything else until I get my lungs problem sorted (having ct scan and breathing tests done early december). Heart/lung specialist not happy with last breathing test (using less than 68% total lung capacity). still having breathlessness issues. Dr is concerned that I may have lung disease issues from pneumonia/methotrexate/spondylitis issues. so hopefully scarring in lungs not too bad - crossing fingers and toes!! Tried the Targin today - pain is high with diarrhoea - maybe from stopping tramadol then taking Targin?? Feeling a bit better tonight tho which is good. Will research the diet and give it a go - can only help!

agree with what others have said.

can understand the doctors waiting til lungs better; they won't consider biologics if one has a current infection or such.

i'm on humira; i still flare a bit, still have issues with joints that have permanent "arthritic degeneration" due to the years of untreated inflammation. but really humira has been a gave changer.

for me, the big positive dietary change has been no dairy. blood work indicated that i'm very allergic / sensitive to casein (similar to celiac for gluten, but for casein instead). Too, more IgA / I gG testing ordered the rheumy indicate that i'm also allergic / sensitive to S. cerevisiae (baker's yeast (beer and bread yeast). turns out a high percentage of people with crohn's have this allergy / sensitivity. I already was avoiding most bread due to my low carb diet for diabetes and I don't drink beer, wine, etc. Too, egg protein was another one that came up positive (but only slightly) in the blood work. So, improving my diet, based on testing, has helped some....improved my gastritis right away by avoiding dairy. I eat coconut milk yogurt instead and coconut milk ice cream when I just gotta have ice cream.

Too, though I take a probiotic, can't wait til the day that the FDA says we are allowed to have (the pill form of) fecal transplants. Its something I want to try. Just thought I'd mention it, not so much to suggest you do it now, just to say there are things that I think are down the road as possibilities for us.

For me I do think its a matter of "heal the gut" to help the spondy.

Prior to being dx'ed and treated, I spent years in PT (no a gentle chiro that does similar things) and years being treated by physiatrists and orthopedists, etc.

Now even, I have an interventionalist who has done cortisone injections into my neck (cervical facet joints) and that helped my neck a lot. He said he'd shoot my SI joint as well if I ever felt I needed it.

Another thing to consider if really out of options: LDN. I started LDN before I could find a rheumy that would dx and treat me. It immediately helped my enthesitis. I went from tearing tendons and ligaments, some rather badly. Never a rupture, but tears, yes, that took years sometimes to heal, definitely some took many many months. and once I started taking LDN, no more tears and a lot less tendonitis. I still take the LDN to help keep my immune system healthy.

I also take a muscle relaxant, zanaflex; its very helpful when I need it.