I kind of don't think diet even needs to come up in a rheumatology appointment. Because that's not their specialty. I mean, maybe they ask if you are eating well. Some of their patients may eat twinkies for breakfast, followed by numerous ciggies! If you are following a paleo/low or no starch diet, well, it seems to me that you could try and discuss this with your doc or just say, "yeah, I'm eating great: I eat more vegetables each day than you probably see in a month, all natural, un-processed food fresh from mother earth." if he asked, "Are you eating well?" Maybe someday all rheumatologists will be trained in how nutrition helps or hurts recovery of arthritis. Until then, I think rheumies specialize in medicine. That being said, if you want to taper your meds I'd do it with the support of the doc, since this is what he lives/breathes. Best wishes and the most important thing is that you are feeling better!!

My sed rate lowered 18 points in 3 months on NSD, I believe it is not a placebo effect.I agree that there hasn't been many studies so how would doctors know diet except from the few studies and maybe their patients testimonials. Alot of patients try a diet and then tell their rheumy that the diet did not work, but they never were on the right kind of diet and/or didn't stick with it.

I hope it works for you and you can add your story to the success story list.Take care.

Hi everyone-

Thanks so much for all the helpful and insightful replies!

I had a good day today - I didn't cheat at all on my 100% starch free diet - yay! Of course, today is only my 4th day, so I guess that isn't saying much. I'd kill for a PB&J sandwich -- ha-ha! This is a difficult diet, but I am determined to stick with it. I can't find iodine to save my soul! I've checked every pharmacy and store. I'm going to check online tomorrow and see if anybody has any for sale. All I could find locally was a 10% antiseptic solution of iodine. The pharmacist said it is no longer available from the wholesaler. Wierd huh?

My husband is so supportive. We spent a couple hours at Costco last night reading labels and putting most everything back on the shelf. It's nearly impossible to find stuff with no form of starch in it. I have gone back to 'real' cooking again like I used to. He sort of does his own thing for breakfast and lunch but for dinner he eats exactly like me - isn't that sweet?

Well, tomorrow is my bi-monthly checkup with my rheumy. Because of our small population, we don't have a lot of specialty doctors, and we have zero rheumatologists. Mine comes over from another island twice a month to see all of us AS and RA patients. It's him or nothing, so I guess I'm on my own.
But, that's okay - I've learned more good things here on this forum that I have from any other doctor. I wish I had known about you 10 years ago when I was diagnosed with AS.

At my Dr. appointment tomorrow morning I'm going to tell him my plan to cut back on MTX and explain the theory of the diet - even though it will fall on deaf ears. And, I can already imagine the 'eye roll' he will do when I show him the literature you said to print out for him. I'm taking my Carol Sinclair book with me too. I marked a few pages with post-its for him to look at. Actually, I have already cut back on the dosage a litle bit, and I can't tell that I am any worse. On my last visit with him, I didn't tell him that I had cut back the number of MTX pills I take each week - was too chicken to tell him. Tommorow he will tell me what the numbers are on my latest blood tests. If they are bad again, I suppose he will blame me and my diet plan. Oh well - like you say, the doctor is there to assist, not control me. I just have to remind myself of that when I see him tomorrow.

Yes, you are right that most doctors are finished learning and don't want or appreciate any advice or theories from us. I guess my eye doctor is the exception - he is the one who realized that I might have AS and who made the referral to a rheumatologist for my initial blood work, x-rays, etc. He loves to read medical journals and just the night before I saw him for an eye problem (Episcleritis), he had been reading an article about AS. When he saw me the next morning, he said, "I think I know what you have". Thank heaven for him!!! If not for my eye doctor I would have spent many more years undiagnosed and going to doctor after doctor telling me that "it's all in your mind", or "you are just depressed". Well...duh, of course I'm depressed when I'm in pain 24/7!!! Anyway, I say a little prayer for my eye doctor every day for being such a smart guy and helping me get some pain relief.

Well, time for me to go home. Have a lovely evening (or morning depending on where you live).

Thanks again for the replies. I'm armed with my book and print- outs for my doctor, so I'll let you know how the appt goes tomorrow.

Marta

Marta, be sure that you don't decrease the MTX until you have been on the NSD for a while and that you are being quite strict with yourself about not eating any foods with starch in it. Read all the posts here and do some digging into the recipes and comments that other posters make. It is better to take your time and make sure you have the diet well in hand and then slowly lower the MTX.

last visit, when my rheumy and i were discussing my elevated liver enzymes (and fatty liver as seen with US), and i told him it was probably fatty liver due to metabolic syndrome / weight gain and/or nsaids last year. he asked me then why one of my other enzymes wasn't elevated, and when i told him what i had read in many places, told him how much i went out and read to educate myself, including finding an answer to that question, he thanked me for teaching him something new. it being outside of his area of expertise, i didn't expect him to know it. but since drugs he might give like ssz can affect the liver, he understands that this information is important for him to know.

bottom line, a doctor that is receptive to learning from his patients.

i also know how well read he is.

and my gastroenterologist goes to a lot of conferences; is always up on the latest research.

so there are doctors out there who are always learning, and receptive to learning from all sources, including us if we have something important to share.

like your eye doctor, it was my stepdad's GP that dx'ed his crohns, that he had been suffering from needlessly for years. that GP sent him for xrays, and when the xray report from the radiologist said everything was fine, his GP looked at the xrays himself, saw a mass the size of a grapefruit, sent him to a gastroenterologist to get treated for crohn's. prior to that, doctors just went him home with lame excuses for why he was having bowel issues. thank goodness for doctors that go the extra mile.

or the Doc won't endorse some thing that has not gone through rigorous testing since if it didn't work he could be sued for malpractice for endorsing a treatment plan that is not throughly tested. Seen this before a Doc prescribes an untested treatment, patient gets worse and sues doc for not using FDA approved treatments. Perhaps we should rant at the sue crazy society we live in and the way the health care system is structured by the conservatives to ensure profit over patient care.

way to broad a brush there

Happy Thursday!

Well, my Dr.Appt today went exactly as I predicted - he said that he did not want me to lower my weekly dose of methotrexate. He doesn't care what kind of diet I want to try as long as it's not unhealthy.

Yeah, John, what you said is so true. My husband says that the insurance companies "own" the doctors which prevent them from deviating from the allowable treatments outlined in the insurance contracts with their liability insurers. A doctor friend of ours who is a general surgeon said his policy is about a 1/2" thick and full of very specific language that spells out what he can and can't do under the terms of the policy. These doctors cannot afford to be sued and/or have their insurance companies drop them as clients - frustrating for us though, when we are willing to try something we know will work and they can't back us up. I like your signature quote too! Another friend, a local pharmacist, takes NO drugs, ever! He said he would never dream of taking the #@*% they put in our pills!

My husband said to me, "You're not stupid; you know your body better than anyone, so if this feels right do it". So, with hubby's encouragement and on the advice of several other members, I'm going to be extremely faithful to the no stach diet but I'm also going to cut back a tiny bit on the MTX. The first couple days, I thought that I would never be able to commit to the NSD, but now that I have a couple more days under my belt, I am okay with it. I already feel so much better in my gut and I can't help but think this is going to be good for me overall. I just have to find some tasty recipes so that my husband and I won't feel deprived. I haven't had a lot of time to explore recipes this week, but plan to do so soon. I see that there is an area on this website that has recipes which I will explore soon.

Doc said my SED rate was down 2 points, and the CRP went up 3 ponts. Not a lot of change, and pretty normal for me. My next blood test and appt is in two months, so it will be really interesting to see if the numbers go down next time--another reason I am willing to stick to this diet.

Good evening,
Marta

I am always confused when people tell me they have to keep taking a drug they know is not helping, and that is making them sick. Celebrex did nothing for me and started making me sick. So i stopped it. I called my doc and told him to findsomething else but celebrex wasnt going in my mouth anymore. He did. and he faxed my pharmacist. Then a few months later i have a bad reaction with that new drug that had been working and i ended up in emerg. Now no emerg doc will say that my reaction (vomiting non stop violently with increasing frequency to the point of dehydration in 1 day) is a side effect of the NSAID but its happened twice and he only similarity is NSAIDs... so thats that Have been NSAID free for 2 months now. if i have a bad headache and am tempted to take Advil, i take it with gravol just in case.

I replaced NSAID with Gigner and Tumeric Pills to help control inflamation. Works pretty good sofar. I told my doc of the change.

When he switched me from Tramacet to tridural 100 day after 2 weeks i upped it to twice a day and called to tell him. I needed to and why (cause i was taking just as much tramacet as i had been before so clearly it wasnt enough at 1 a day)

He has not yet once sent the police or called my pharmacist to stop me from taking them. He has noted it in my chart, No one shows up to make sure i take the pills. sometimes i miss a dose. with Tridural it is dependant so if i wanted to wean offf i would seek advise from him or the pharmacist as to how to do it. But I choose what i do with my body.

That being said. I would not be in a rush. NSD is hard to stick to and you might want to have a couple of months routine down pat before you start weaning. then consult your Pharmacist about what could happen shouldyou MISS a dose by accident and then on purpose on a regular bassis.

REach out and ask here too, chances are someone can help you with dosage and posssible side effects of weaning.

I think you should wait until you are weaned off or lowered meds and seen success with this and then tell him what you did. Since he clearly thinks he knows it all, time to teach him with real life experience, not anecdotal from a book or brochure.

Also alot has been in the news re oxycontin and how when it comes to drugs, its the drug companies that teach the doctors NOT medical school. So of course they are not going to believe NSD works because there are no NSD reps going around buying coffee for the nurses and whispering sweet nothings and leavings NS treats for them to hand out and share...

Your doctor gave you sound advice. Regardless of what you may read here, there is no independent clinical evidence supporting diet. At least there is clinical evidence supporting the use of MTX in inflammatory arthritis (though not specifically AS).



Liability or Malpractice insurance policies do not forbid doctors from prescribing unproven treatments, they just spell out the fact that the insurance will not cover them if they do prescribe an unproven treatment that hurts someone. This would be similar to your homeowner's policy that spells out the terms under which they will and will not cover the costs of replacing your home or belongings. Blowing up your house in the commission of a crime would NOT be covered. (Edited to add: This was NOT to suggest that there is anything criminal about diet. It was just an example of a clause in an insurance contract. I do follow a modified diet myself. I just don't expect a doctor to prescribe or endorse it.)



I certainly would not allow this person to fill my prescriptions. It is incredibly unethical to work as a pharmacist dispensing medications that you believe are harmful or full of #@*%.



As you know, you have free will and are free to make any dietary changes you wish. As you reduce your MTX, keep in mind that MTX is a long acting drug that takes months to build up to full effectiveness and months to completely lose effectiveness. You could flare 2 or 3 months after reducing or eliminating MTX, These sorts of flares often appear to come from out of the blue, but they are actually a reaction to reducing/stopping Methotrexate.

Good Luck with whatever decision you chose.