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

Hello starshine,
I was wondering if you could give me an update on your progression with Enbrel. I've been taking it since the last week in Sept. (13th injection) and things seemed to be going well; mainly I was finally able to sleep at night without pain keeping me awake. However, since Dec. by late afternoon every day I get a fever and then I collapse with weakness. My brain gets fuzzy too.
My lower back pain seems to be controlled mostly with a low-starch diet but I wake up with trouble breathing, due to 'reduced lung capacity' or lung scarring (depending on which doctor I speak to).
It feels like I've been living with the flu for the past month... Can I hope for some more energy soon?

Hello Bax1,
I was wondering if you could give me an update on your progression with Enbrel. I've been taking it since the last week in Sept. (13th injection) and things seemed to be going well; mainly I was finally able to sleep at night without pain keeping me awake. However, since Dec. by late afternoon every day I get a fever and then I collapse with weakness. My brain gets fuzzy too. I'm doing my MA so it's really bothersome.
It feels like I've been living with the flu for the past month... Can I hope for some more energy soon?

Hello Coattails,

Sorry it's taking me so long to reply, what just busy with all those New Year's festivities :-).
I can see we are thinking of doing the same, for the same reasons. As far as pregnancies are concerned, I know there is close to no data available as to Enbrel being taken during pregnancy (by the mother), therefore, I'm not willing to take the risk of realising the hard way it's not good for a baby. However, I'm not sure if you're a man or a woman, so if you're a man, it might be different, I assume the amounts of the drug that would get into the sperm and be passed on to a baby might be small enough to be harmless ?
As for my game plan, I've read, on Betty Rawker's advice, "Breaking the Vicious Cycle", about the Specific Carbohydrate Diet and that seems to make a lot of sense so I think i'm gonna try and follow something along those lines.
That's how I think I'll go about it : start with a couple days water/bone broth fast (I'd go longer but doubt I'll manage it).
Then add animal proteins (unprocessed/uncured meat & fish) + more bone broth + a couple non-starchy veggies (spinach, fennel, leeks...) + jelly for snacks. Stay on that for a bit, realistically one week-10 days. If I've got minimal inflammation by then, I want to start reintroducing the following foods, one by one, probably 3 days apart, whilst keeping a food & symptoms diary : eggs, berries, coconut products (oil, milk, flour, flakes), low starch veggies (sprouts, cabbage, broccoli...), citrus, almond products (milk, flour, flakes), cured meats (ham, bacon), nightshades, other seeds (chia, flax, pinenuts, sesame...), avocados, asparagus, chillies & spices, apple & pears, honey, starchier veggies (carrots, beetroot, parsnip, green beans, courgettes, pumpkin...), tropical fruit, alcolhol, (wine, beer, cider, spirits) dried fruit, and then maybe attempt real starches like rice or sweet potato. Basically just see how far I can push it and still get good results.
That's the theory, now I realise it is gonna be demanding and I hope i can carry it out... I'm thinking of starting early Feb (the leftover Christmas Cake should be gone by then :-)...). When are you thinking of doing yours ?
Also I think at some point I'll have to try proper "bad" starch just once, to see what -if any- reaction I get...
Hope that's helpful, let me know if you have any other questions, and what you're thinking of doing as well !
All the best !
Marion

That sounds like an awesome plan! Looks very unlikely that your strategy could do you any harm and should only help you out. It will be nice to have a list of foods that you absolutely KNOW will not give you negative affects. Similar to what "Light" from this website has listed in her signature.
I promised my wife that I would stop smoking two years prior to us having a child. I also told myself that I would like to be off of enbrel before we have one as well. I stopped smoking a year ago. Through stopping smoking and now a strict NSD has me realizing that I have the will power of a lemming:) My Wife is back in school right now, which might make us push back the date a bit?

I have Dr. appointments left, right and center this month. After speaking with all of them, reading as much as I can from all points of view and mainly getting advice from fellow kickas'ers, I'll arrange(or more likely be given) a battle plan. What I'm leaning towards at the moment:
-strict nsd
-get off enbrel
-stay strict nsd and will eliminate other foods like dairy, nuts, nightshades etc if need be
-antibiotics(I've read that they are very harsh on gut bacteria but I believe that is the point?)
-slowly re-introduce healthy gut bacteria through fermented foods, fecal matter transplant and being less hygienic(hooray for no showers;)! (not so hooray for the former)

John's(Dragon Slayer) "important as resources" link is a gold mine of information. I'm going to get to the point where I feel in control of AS and its ugly cousins. There are so many here but Dragon Slayer and Dotyisle are two shining examples of the progress I plan to achieve.

I wish you the best of luck, Marion and everyone else reading.
It would be really nice to eventually start a new post or what have you so that we and others could follow the journey. Unfortunately, I have a feeling the future and this website will be seeing a lot more people in our position.

Yeah my plan is great isn't it ? How it's actually gonna pan out might be a different thing… I do wonder if I'll have the willpower to carry it out. What I'm especially worried about is removing sweet things (fruit, honey, chocolate). I have got a really sweet tooth, and am quite an emotional eater, so fruit and honey are my go-to foods when I'm stressed, bored, anxious…
But on the same token, like you I've quit smoking, gone NSD and also carried out a 2 week juice fast, so obviously I do have some willpower, I hope it will be enough, because I would really like to know which foods agree with me and which don't !
Your plan seems good, although personally I beware of antibiotics, i don't like the idea of something wiping out all of the bacteria in my gut. Also I was on antibiotics for most of the summer because of a recurring skin infection, and I didn't notice any difference, but that's just my personal opinion. And as for fecal matter transplant, i don't know that much about it, but i thought it was just being researched at the moment and not widely available ?
I will start mine mid-feb and will probably start a new thread to let you know about my progress or lack thereof !
When are you planning on coming off enbrel ? I have got 2 fortnightly doses left and don't plan to buy another box. Will see my rheumy early feb, hope he'll agree with that.
Let me know how you get on.
Marion

I have been off of Enbrel for 16 days. The longterm back pain that I have always had, hasnt came back yet. The ankle, knee, elbow and SI pains, that developed during the 5-6th week of Enbrel are still with me, but seem to be subsiding a little. Now for I while, just like you I had flu like fatigue. I wasnt sleeping at all. Before quitting the enbrel I had my General Practitioner prescribe me some Xanax, because I was comepletly freaking out. I take one before bedtime and starting sleeping, the fatigue began to subside after that, but is much better now that I am off enbrel.

I just came back from a appt with my Rheumy last week. after advising of the new pains, she took xrays of my wrists and ankles. lower lumber and thoracic area. + new blood work. Since I quit taking the Nsaids when I started enbrel, she wanted me to restart the nsaids to see if it helped the new pains that I have. I dont think they are helping any. If they subside, she wants me to restart the enbrel along with the nsaids to see if the pains return. If they do, then we will back up and try something new. I am not happy taking the nsaids I have been taking them since the 1/8. I cant tell that its helping, and I am now pretty constipated.

I have talked my GP into prescribing Low dose naltrexone, for me I am gonna try that. I am pretty low in Vit D too. I just wish I had known 20 yrs ago with what I was dealing with. I went 25 yrs thinking it was some kind of nerve inpingement from an accident. The enbrel did lower my CRP from 14 to .6

I hope I helped you out.

The last injection I took was a little more than 2 and a half weeks ago. For me, this is the exact time that my back pain starts to rear its ugly head. AS pains in my back. It's always at around the two week mark that I have an insatiable desire for sweets, breads and dairy products. I've held off except for a bit of cheese and yogurt. Very stiff and sore this morning but I did play hockey the last two nights. Always an asterisk with me;) I'm thinking of taking enbrel in a few days again. I've ordered a bit of stuff for cleanses as well as a juicer. I think I need a bit more time on NSD and I'm still on prednislone for my eye.
I'm starting to think and understand that antibiotics might just be the answer? Others here and elsewhere have had fairly good success with them.

Dragon Slayer's antibiotic protocall.

http://www.rheumatologynetwork.com/articles/treat-target-clears-ra-real-world-clinical-care

http://www.roadback.org/forum/viewforum.php?f=1&sid=6ea7ab2b5f26d7848dda4138d86c39ac

https://chronicillnessrecovery.org/index...10&Itemid=5

I've read that antibiotics pillage the gut but it is possible to re-establish healthy gut microbiome, based on what this genius says;

http://coolinginflammation.blogspot.ca/2012/06/dr-oz-on-gut-flora-repair.html


He briefly touches base on fecal transplants in this article as well. I'm pasting these articles that are posted elsewhere on this site already;

http://coolinginflammation.blogspot.ca/2013/12/antibiotics-gluten-hashimotos.html

http://forums.phoenixrising.me/index.php?threads/fecal-transplant-study-58-70-recovery-rate.20430/

http://www.rheumatologynetwork.com/arthr...ay-promise-cure


Lindyap, in the "alternatives, fecal transplant & helminthic therapy" thread is currently trying it. Another is preparing and obviously I'm hoping for everyone's sake that they have great results.

I'm sure we can't go wrong with a NSD, though. For some, it's mostly enough in itself. Good luck everyone. Please keep me posted and I'll do the same.

I have been juicing off and on along with a low starch diet. Im trying to be NSD, but I will let a little startch through. The antibiotic therapy is very intriguing for me. The fact that I was on the enbrel for roughly 2 months then at all of then new joint pains that I have never experienced before has, in my mind, to be associated with the suppression of my immune system. I have contacted roadback.org and got the name of 2 doctors with in 2 hrs of my that administers the protocol. I am going to make an appt with one of them and talk to them about it. I done a 5 day water fast, then followed with with several days of juicing, now I am just eating fish, salds or juices. This has pretty much finished off all of my cravings. I generally have to make myself eat or I will get weak. I really need to start food journaling and rating my pain.

Bax, It's pretty amazing what this condition forces us to do, isn't it. I remember the good ole days when I would kick back with two grill cheese sandwiches drenched in margarine, dusted off with some table salt, spicy korean instant noodles and a side of sour cream and onion pringles. Just the THOUGHT of eating that stuff sends me into flares.
As Marion, I also tended to eat unhealthy foods in excess. As soon as I found out that diet may be the answer, it all seemed to make sense.

I said this to someone else on these forums before but wow! You are both soldiers! 2 week juice fasts, 5-day water fasts followed by juicing fasts. I thought I was tough doing 24 hours last week based on this guy's article;
http://www.marksdailyapple.com/why-fast-part-six-choosing-a-method/#axzz2qS2OQXUG
Today I did this guy's fast aimed at reducing inflammation;
http://www.bulletproofexec.com/wp-content/uploads/2013/10/Bulletproof-Diet-Infographic.pdf

Just recently(yesterday) I was directed from kickas.org to this web site which also advises we do fasts;
http://perfecthealthdiet.com/
That same website also has a great!!! podcast that I'm listening to that specifically addresses what we are trying to do, Marion. Safely weaning off meds like ours and how to approach your rheumy etc.
http://www.superhumanradio.com/download-the-autoimmune-panel-discussion.html
I'm thinking of getting his book.
There are some great apps for food diaries that should be able to graph times and pain. I can't think of the name but should be easy to find one.
My rheumy wasn't there today. I'll have to discuss a plan with him another time but I would also like to contact the road back to see what they have to say.
Hope you get better soon, Bax.

Hello again !
Yes I agree with you, what a difference a few years make. A few years back my usual breakfast was Haribo sweets, full fat Coke and a cigarette... Don't know if I'm getting wiser but I'm definitely getting older...
Thank you for all the links I'll check them out later ! As for your suggestion of an app for food diary thank you, that is genius I hadn't even thought of that (yep, definitely not wiser...). I've checked the Iphone appstore and there's one that's called My Symptoms Food & symptoms tracker and that looks really good, i'll download it later !
As for the 2 week juice fast, it wasnt as difficult as I thought it would be, i didnt get hungry at all and i got used to it very fast. By the end of it, starting having to chew food again felt very odd !! I also had loads of energy and the best sleep since being a toddler ! I personnally am a bit cautious about juice fasting now though because i started getting some odd symptoms whilst fasting (recurrent skin abcesses, knee injury, fatigue...) and I wonder if it was a coincidence. Maybe it was part of the detox process (payback time for the sweets & coke & fags...) or it might have been too many uncooked, cold foods for my constitution (that comes from chinese traditional medecine). So i don't think i'd try fasting for that long again. It's very personal this journey isnt it ? YOu really need to find out what works for you, which could be so different from the next person.