Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; TNF plus NSD

How many of you are on TNF's. I am due my Simponi shot in a week. It was starting to not work so I'm reluctant to take it but I'm afraid of feeling worse and regretting it.

Not on TNF blockers here; there are enough downsides and unknowns associated with powerful stuff like TNF blockers that I consider them a last resort for those who are already in serious trouble with their disease. I hope never to get any of the really dangerous stuff like heart involvement -- and don't have severe pain ruling my life. Have a lot of fusing already, but according to some of the members here, things could be much worse than fusing mostly straight. The side effects for long-term use of prednisone are often worse for instance, and who knows what the long-term effects are for TNF blockers? (Answer: nobody, because they haven't even been around 20 years yet)

On the other hand, I think it's likely that some people could do really well using them short term while trying to address underlying causes such as damaged gut. I'm not likely to be one of those people though... because my primary care doc scared me off of them with his full disclosure policy (he personally knew a couple people who died from reactions, as well as amazing results for some RA people who previously couldn't even walk from the pain).

Hi, finnari:

Some of our members have used Enbrel in combination with their own modified LSD and had great and lasting success, perhaps lowering their basic dosage or time between. "LadyZ" has been able to use Enbrel this way for more than ten years.

I don't know whether Simponi has had reports of halting efficacy, but some of these drugs do cause us to develop antibodies to the agents, so they become less effective.

Ebringer says it is a "mass-action" issue, where sometimes no matter how much tnf-a we could take it would not be enough to offset the immunoglobulin action of AS, usually triggered indirectly by the amount of starch consumed.

Because NSD plus antibiotics was so effective for me, I have not tried the tnf-a suppressors, but these can be a good option for some people and in my opinion much better than NSAIDs when they work and when they are safe. Sometimes, to prolong the effective life of these drugs, MTX is used, but for the risks and hassles with another poison I would rather get by on the diet and find antibiotics to use.

Good Luck,
John

Speaking of antibiotics plus NSD...

Dragonslayer, I requested a copy of your protocol but didn't get a reply yet. Don't know what state your inbox is in... could my request still be waiting in a backlog? I sent it on Feb 27 and resent on Mar 2 for good measure.

I'm currently combining LSD with a double dose of enbrel and prednisone.

I started off with just enbrel, and then it started wearing off so I gradually weaned off it while I went NSD. NSD worked very well for me for awhile. Then I ended up with porphyria symptoms and had to ditch fasting and add lots of carb back to my diet. So, of course, back to enbrel. Only it doesn't work for me as well, so I need double the normal dose for it to do anything. So once I figure out a high carb/high glucose diet that's starch-free, then I'll try to wean off the enbrel again. Fun times.

Wow!!!

Sorry, SJLC if You have. I get too much mail, but apparently that's not the problem? I just checked those two dates and got no AP request. Just to check my email address is anzaltopo@yahoo.com.

Think we're just not connecting if You have old address or something. I think my PMs are working so You could send PM with Your email, if You wanted.

Be in touch soon, I hope,
John

Actually, I tried that too; it says "This user is not accepting private messages". Sounds like it's not on purpose though, so maybe you'll update your preferences to turn them back on?

Thanks for your help!

I wasnt exactly asking for a philosophical debate on TNF but I feel I need to say a few things in response.

My experience has been TNF's have been great for me. They worked for a long time. THey gave me mobility and no pain so I can prevent fusing and live a quality life. After all that's what I'm here for. The question one must ask is are the POSSIBLE side effects of a drug worse then the "side effects" of the disease your fighting. You might be comfortable with your fusing and other's take a stand based on whatever they feel right for them. I make my decisions not on a boogyman list of possible bad future side effects but an intuition. NSAID's? Now there's a drug I wouldnt touch along with prednisone. But that's personal.

Seems that some people around here manage to share their opinions without making others feel criticized, but maybe I'm not one of them

Hope you don't think I was criticizing your experience with TNFs; meant to give a perspective on why some of us aren't using TNFs despite very heavy pushing from rheumatologists. I know I've got a minority view, but I don't have a chip on my shoulder, anxious to start a flame war about it. So I'm not even going to provide my response to any of your points -- you started the thread and you can have the last word

I am on Simponi and trying NSD for another time. I finally went on Simponi after 6 months of no results on NSD diet and about 3 years of limited results on LSD. CRP just would not come down much no matter what the diet was.

I will wean off the simponi after a very strict NSD, no dairy over 6 months. If still no help I will go for another 3 months for a total of 9 months on NSD. (everything tested very simple diet)

I hope diet works better this time than the last. But it does not seem to work for everyone. I regret not going on Simponi or a TNF sooner. I don't think they will stop fusing but they have been shown to stop joint damage for those of us with peripheral involvement. I like my knees and my son does not want a hip replacement before 30. The TNF's have been around awhile now. Frankly I think they look pretty safe with rare side effects.