Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Enbrel & Day to Day Life

My only "law" in medicine is that everyone is wired differently and react in various ways to medicine, prescription drugs, exercise, supplements, Low Starch Diet etc.
Proof of that are the ever present warning/side effects labels on the medicine and on the advertisements. If everyone were the same, those warnings wouldn't exist
I hope you get quick and long lasting relief!

For the past 3 years, I've had, and still have, excellent results(98%) with enbrel. My attempts at weaning down met a medium-sized speed bump. Iritits. FYI it's not nearly as pretty as it's name would suggest;) I have been LSD for the past few months but completely pigged out on generic chocolates and caramels etc. over the hols. Maybe a combination of both brought it on? Added stress due to hols?
Anyways, being treated... now on with the program

I have a couple questions for Marion(but welcome feedback from everyone)

Am I crazy for wanting off of this "miraculous" drug?

I was on 50mg/week for 2.5 years years and weaned it down to every three weeks in the last 6 months. I injected at 2 and half weeks this time due to eye probs, though. I've been finding that my symptoms start to become apparent again at about the 2 to 2 and a half week mark.(from my last injection) As Timo said, everyone is wired differently and there are so many uncontrolled factors involved but how is your progress in weaning off enbrel?
Happy holidays all.

I wouldn't wean off a drug that works wonders for you. Untreated disease will likely be a worst situation than any drug side effects could be.

That makes perfect sense. I know that getting to the point of inflammation that will fuse my spine would be extremely unwise. What I would like to do is to take advantage of the calmness and mental clarity that enbrel provides and find a way to either;

A: enter remission through an onslaught of medically induced treatments. ie, anti-biotic protocall, DMARTS and/or new medical advances
http://www.rheumatologynetwork.com/treat-target-clears-ra-real-world-clinical-care

B: enter remission through LSD/NSD, supplements and re-populate gut with healthy gut microbiome. ie. fermented foods, drinks and fecal matter transplant or capsules.
http://coolinginflammation.blogspot.ca/2013/12/antibiotics-gluten-hashimotos.html
http://thepowerofpoop.com/

I was a constant 9.5/10 on the pain scale before being on enbrel. I know that I am very spoiled results-wise but I also haven't forgotten the pain. Although, I see too many people on these forums that say the positive effects of biologics and other meds have ceased to work after x amount of months/years. Others have developed MS, as well. I would like to prepare for the worst, I suppose.

Do you think I cheat the system and stay on biologics whilst on LSD/NSD? I've read that anti-biotics ravage the gut and all of its' good AND bad bacteria. Being NSD while on antibiotics might not fully make sense??? but what about biologics? Can't deprive the klebs starch over the next year(and ever after), exercise, eat well and find a way to manage stress and slowly come off of the biologics?
I will kick myself in the face(really hard) if enbrel,humira, AP etc stop working for me and realize that sitting on the couch eating donuts in my hay day might not have been the best use of my time.
On a side note, since I have started enbrel, I have had three separate attacks of iritis. One big, one small and then a medium attack just last week. Looking back, I think it was diet related because of the holidays but I just find it strange that iritis only started after the enbrel was in my system.

Although I repeatedly seem to use the words "I know","I know" I actually really don't know and every time I find an interesting article on one efficacious treatment/supplement/lifestyle there is another to argue against it. I'm much better at weeding through the crap than I used to be but I really love reading these forums and getting first hand responses from REAL PEOPLE that ACTUALLY have this condition. My rhuemy, "food has no specific relation to your condition whatsoever." So, outside of this magical website, I'm just some crazy guy who enjoys being difficult at dinner parties and likes to flex his will power.
I know this post is all over the map but I would really love opinions and thoughts as to my plan and would obv love to hear others' progress/pitfalls.
Just to re-iterate my main question, is the NSD/LSD as effective whilst on biologics?
Good luck to everyone

*Can't I deprive*
Can't deprive the klebs starch over the next year(and ever after), exercise, eat well and find a way to manage stress and slowly come off of the biologics?

You have the same outlook that I have on this disease and enbrel. It has worked wonders on the pain and stiffness that I have had for the last 20 yrs. I've been on enbrel for 8 weeks. I trying to stay on a nsd and want to look into the antibiotic therapy. I'm afraid the biologics will quit working.

All of these years I have taken NSAIDs prior to getting on enbrel. On e on enbrel I stopped them all. The weird thing I have going on now is that thru the last 25 yrs all of my pain and stiffness had primarily been in by upper back. After being on enbrel for 5 weeks I've started developing burning and aching in the SI joints at night. The is joint area hurts if is stand still for more than 20 min. My knees and ankles have started aching. I've never experienced these pains below the belt before. I'm asking my Rheumy about the antibiotic therapy at my next appt. I can't get any sleep at all. Not due to pain either. Just can't sleep im exhausted all day but can't sleep more that 4 hrs at night. The first 3 weeks on enbrel I slept like a baby. Then I stopped.

Am I crazy for wanting off of this "miraculous" drug?

I ask myself the same question often I have to say ! Here's my view on it : spoiler alert : it's going be a long post !!
Before starting Enbrel I was in constant pain for about 2 years (constant but getting worst & worst) in most of my peripheral joints : feet ankles knees elbows shoulder neck wrists fingers... Those were dark times with a lot of dark thoughts. Then I was put on Embrel & literally overnight got better. Within a couple weeks I felt "normal" and was full of beans !! I got my life back. Miracle ? Hell yeah !! However I still needed methotrexate and I tried stopping NSAIDs but I couldn't, the pain & fatigue would come back within a couple days. So over the next 3 years I stayed on that trio of drugs : Enbrel 50mg/week, mtx 20mg/week and mobic 15mg/day. I lived as close to a "normal life" as anyone with AS could wish for. I brushed AS under the carpet and enjoyed blessed denial.
Then over the past year, I've started "taking an interest" in my body and AS. I started taking those drugs when I was 25 (17 for the NSAIDS), and I don't think I can keep taking such strong drugs for the rest of my life. I don't think my body could cope with it for another 50 years or so (hopefully). After all MTX is low-dose chemo, can it really be a good thing long time ? And I also started to look at immunodepressant differently. A good metaphor I think is this one : it's like if your fire alarm starts blaring, and you take the batteries out : the noise won't bother you anymore but your house is still on fire ! That's why I feel about anti tnfs : they are doing a great job of covering the symptoms but are not addressing the cause of the problem. And that's exactly what I've been trying to do through diet. Understand why my immune system goes berserk. Listening to my body & working with it, not against it.
So I've started weaning myself off drugs, and when I started struggling following a very stressful time, I went NSD and was able to completely drop NSAIDs for the first time in years ! I'm now down to Enbrel 25mg/fortnight and MTX 7,5mg/week, no NSAIDs. I'm seeing my rheumy end of January and hopefully drop it altogether. I do have some pains although I'm fully functional and exercise a lot. I'm trying to determine whether I'm in more pain now than when I was on full dose but it's hard. Pain is so subjective I find it hard to remember how much pain you felt at a specific point. I think today's pain always feels worse than yesterday's pain. When I see my rheumy I'm gonna ask him for some imaging, to see if I've got any damage ( compared to previous ones taken before anti tnfs).
I've still got a long way to go diet-wise and plan to do a strict elimination diet/heal the gut plan in the next year (I've been a naughty girl over the holidays). I want to exhaust the "natural remedies" route (I'm also doing acupuncture & taking Chinese medicinal plants). Then & only then if I can't manage my pain this way, I'll get back on the hard drugs.
I'm also planning to start a family, so if I can't wean myself off drugs I'll have to explore other routes, like adoption.
I hope I've answered your questions, don't hesitate to ask anymore and let us know how ur weaning off goes !!
Stay strong !
Marion

Maybe we wouldn't be in this position, due to lack of modern food/medicinal/environmental toxins in the past?...but... how UNBELIEVABLY FORTUNATE are we to be in a time that we can be indoors, warm, dry and toasty on a wet winter's day, chatting with people from everywhere in the world with the same fairly rare condition with very similar thoughts and goals,...right from the tips of my fingers??? Unreal! The internet is awesome! You guys are awesome and it's been moving to hear from everyone!

Bax, as we all agree, any time away from the symptoms is highly cherished. No sleep on the other hand, can be pretty destructive in itself. I've also been through bouts of insomnia since starting enbrel. I think the max it lasted was 2 weeks for me. Maybe try some long walks,(rigorous exercise should be avioded when sleep deprived) mindfulness/meditation/vagal nerve stimulation? White noise or running water application for your smartphone? I work very hard at bettering myself but determination and obsessiveness are sometimes hard for me to tell apart. You are having good results with enbrel but are still seeking better. Maybe that obsessermination is hard for us to put to rest? Try to find out if it's the meds causing the insomnia. I honestly don't know in my case what causes it?

That sucks about your lower body pain. In my case, I'm not saying it's because of enbrel,.. or that it made me more susceptible,.. or that it wouldn't have happened without it,.. or that I don't have a tendency to go on huge chocolate binges but I didn't have Iritis before I started enbrel.


Marion, I'm excited to hear of your progress. My game plan is very similar to yours. I'm also going to have to do a strict elimination diet. Do u have any good resources for one?
We also plan to start a family within the next two years and wonder of any adverse effects of enbrel on unborn children and their future well being.(obv fathers and mothers will vary... but still)
Outside of finding out your trigger foods, what is your plan of attack for healing your gut?
Any help from the medicinal plants?


Happy new year everybody!!!

I just came off a 5 day water fast. My symptoms were much less but came back as soon as I started eating.

Aarghh. I hate to hear that it's back, Bax. One thing is for sure though...you are a soldier for doing a 5 day fast! That must give your will power a huge boost of confidence! It also Might make future fasts or restrictive diets etc. a bit easier to manage? Are you on a NSD/LSD?