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Joined: May 2013
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Hi there,

This is my first post on here, so I thought I would start off by saying hello everyone at Kick AS and I hope you are all having a manageable pain free day!

Ok now on to the nitty gritty. I started on Humira in Nov 2010 and was taking it up until this past Nov 2012, I stopped the drug without my doctors consent because I started eating a strict Paleo diet and I was feeling great for about four months without any flareups, I was active in bodybuilding and rock climbing and my body just felt so good during this time, I felt invincible. This past March I started to get a minor flareup in my SI joints (this is where it always hurt the most) I thought it would go away if I just kept eating well and exercising, but it just got worst and worst and I started to fall apart on my diet and my workouts took a huge downward spiral. Now I am back at stage one from two years of remission, you live and you learn right?

For the past two months I have been dealing with a flareup that just won't go away and has kept me from sleeping the past couple nights, sometimes I'm too scared to even get into bed because I can't even move when I am lying flat. This pain was so bad that I called my Rheumy and asked him if I should start Humira again, and he said yes. I am two injections in so far, and I am taking my third one today. I haven't felt much better, though I understand it takes some time for the drug to get into the system and start working. Then there is also the fact that my body could have built anti-bodies to the proteins in Humira and it won't have the same effect on me anymore, I am not too sure about this and I will try to keep my head up. My rheumy also told me that another reason I could have been in remission during those four months was due to the Humira still in my system keeping the inflammation at bay, so it's really hard to say whether the diet had a major effect on the inflammation or not.

My question to you guys is what steps should I take to get my health back and reduce inflammation so I can go about my happy and active lifestyle and not be such a lazy downer all the time?

Also for people that have been taking TNF blockers, have you noticed any tingling and needle pin sensations in your hands and ankles? I get it a lot in my right hand, but only when I've been on Humira, when I went off it I didn't get the same feeling in my hands and ankles. I have heard that there is a link to MS if you have those types of neurological pains, its been really bugging me lately and acts like a tick that just won't go away. Any experience with this?

I am a 22 year old male that has been active his whole life, so I hate the fact that I am back on Humira right now, but if its going to help and let me get back up to speed with my life, then so be it. Thank you for reading!

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Hi there,
This is disappointing- though probably a good reality check- to read as I too am on Humira (since 2011) and have been on a low starch diet for 2 weeks. Even if I achieve remission, I know I'll be hesitant about coming off the Humira. My worst symptoms are also SIJs.
What have you done with your diet? Are you continuing on the paleo?

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The only thing that finally helped my SI joint when it flared badly besides cortisone injections was a pred taper. But hoping going on Humira will put an end to needing the steroids.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Originally Posted By: BigCrunch
Hi there,

Also for people that have been taking TNF blockers, have you noticed any tingling and needle pin sensations in your hands and ankles? I get it a lot in my right hand, but only when I've been on Humira, when I went off it I didn't get the same feeling in my hands and ankles. I have heard that there is a link to MS if you have those types of neurological pains, its been really bugging me lately and acts like a tick that just won't go away. Any experience with this?


I would talk to my doctor ASAP about this, this could be MS related from others I have seen post here regarding these symptoms.

Regarding getting your health back... learn about AS and treatments and alternatives. It will be a personal choice... there are other TNF medications as well as other medications (I did well on azulfadine for several years). There is also the No STarch Diet that is similar to Paleo Diet.. so if you had success with that diet prior, maybe the diet does better as many here have had success with it. There are other alternatives as well.. fish oil/other supplements, some do fasting, enemas/colonics, some have visited radar mines...

Take your time to learn and make the decisions you feel are best to get to where you want to be. I purchased about 30 books on diet, nutrition and supplementing and read every chance I had when I had to come off of medications due to side effects. Was a great investment in my personal health as I learned a lot.

Take care,
Tim


AS may win some battles, but I will win the war.

KONK - Keep ON Kicking
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Originally Posted By: Killerwhale
Hi there,
This is disappointing- though probably a good reality check- to read as I too am on Humira (since 2011) and have been on a low starch diet for 2 weeks. Even if I achieve remission, I know I'll be hesitant about coming off the Humira. My worst symptoms are also SIJs.
What have you done with your diet? Are you continuing on the paleo?


Yes if the Humira is working for you and you aren't noticing any serious side effects I would keep going with it. I am still following a Paleo style diet so I have cut out all gluten products, wheat, grains, dairy, legumes, processed and refined foods. I try to eat as much whole foods as possible and the only starchy food that I really eat are sweet potatoes, I tend to eat more when I am active because I need to replenish my glucose post-workouts. Paleo has taught me a lot about understanding what I put into my body and how it will affect my AS, another great thing about Paleo is that it helped me learn how to cook for myself more often so I don't have to rely on other people or get lazy and buy food from outside. I hope that helps!

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Originally Posted By: Dotyisle
Originally Posted By: BigCrunch
Hi there,

Also for people that have been taking TNF blockers, have you noticed any tingling and needle pin sensations in your hands and ankles? I get it a lot in my right hand, but only when I've been on Humira, when I went off it I didn't get the same feeling in my hands and ankles. I have heard that there is a link to MS if you have those types of neurological pains, its been really bugging me lately and acts like a tick that just won't go away. Any experience with this?


I would talk to my doctor ASAP about this, this could be MS related from others I have seen post here regarding these symptoms.

Regarding getting your health back... learn about AS and treatments and alternatives. It will be a personal choice... there are other TNF medications as well as other medications (I did well on azulfadine for several years). There is also the No STarch Diet that is similar to Paleo Diet.. so if you had success with that diet prior, maybe the diet does better as many here have had success with it. There are other alternatives as well.. fish oil/other supplements, some do fasting, enemas/colonics, some have visited radar mines...

Take your time to learn and make the decisions you feel are best to get to where you want to be. I purchased about 30 books on diet, nutrition and supplementing and read every chance I had when I had to come off of medications due to side effects. Was a great investment in my personal health as I learned a lot.

Take care,
Tim


Yes next time I see my doc I'll have to bring it to his attention in a lot more serious tone, I haven't had the greatest luck with rheumy's unfortunately, they all seem to take these matters so lightly with little to not action.

I have been doing a lot of research on different alternatives for the past couple months, but its still tough because with all these meds and natural remedies, there is always to sides to the coin, never a win win situation unfortunately. Thanks for the advice Tim!

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Welcome Big Crunch!...Sorry to hear you are back in pain again.:(
I too have had a reaction to Enbrel that sounds similar...My Rheumi stopped the Enbrel...you can read my previous posts to see the details...I am not concentrating on diet and exercise and hoping the "dragon" stays asleep for awhile...My worry is that the same thing that happened to you will happen to me once the Enbrel is totally out of my system....I too have been eating Paleo for the last year and a bit. I love it and hope it's enough...Just did an apple cleanse for 3 days to help the body heal and now I am hoping for the best....Anyway, I think you should call your Rheumi and let her know...Have you looked up side affects for Humara?...I didn't read carefully the last time I read about Enbrel...went on Enbrel.com...and was shocked to find my symptoms...that prompted my call to my Rheumi...If the symptoms don,t go away in the next several weeks...I will need to see a Neurologist....
Take care.
L


Diagnosed with AS in 2007 Hx of episodic back pain since I was 13.
Fibromyalgia Diagnosed Feb. 2013
methotrexate and Enbrel
Started LSD Feb 2012
Vit B,C,D, fish oil, folic acid, 5HTP, Gabba,Magnessium.
I am so much more then my symptoms:)

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For those experiencing tingling, is that a tingling similar to what you would experience from sleeping on your arm, for instance? I'm on Enbrel and I get that sometimes, but almost exclusively when I'm lying in a bad position, so I don't think it's neuro-related but I'd still like to learn more.

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Originally Posted By: Laurel64
Welcome Big Crunch!...Sorry to hear you are back in pain again.:(
I too have had a reaction to Enbrel that sounds similar...My Rheumi stopped the Enbrel...you can read my previous posts to see the details...I am not concentrating on diet and exercise and hoping the "dragon" stays asleep for awhile...My worry is that the same thing that happened to you will happen to me once the Enbrel is totally out of my system....I too have been eating Paleo for the last year and a bit. I love it and hope it's enough...Just did an apple cleanse for 3 days to help the body heal and now I am hoping for the best....Anyway, I think you should call your Rheumi and let her know...Have you looked up side affects for Humara?...I didn't read carefully the last time I read about Enbrel...went on Enbrel.com...and was shocked to find my symptoms...that prompted my call to my Rheumi...If the symptoms don,t go away in the next several weeks...I will need to see a Neurologist....
Take care.
L


Hey there Laurel, I am happy you are following a Paleo style approach, diet definitely helps quite a bit with AS, but definitely not enough in some cases. You definitely don't want to be off meds and then suddenly start getting a flare again, it can really break you down and make you lose focus on day to day tasks, I have been a mess for the past couple months and it is very depressing. I suggest you check with your rheumy again and see if there is maybe some less intensive treatments you can do while following the paleo diet. Good luck, and keep in tune with your body! Even the slightest pain can gradually get worse and worse, so don't ignore it like I did.

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Originally Posted By: Wilhelm
For those experiencing tingling, is that a tingling similar to what you would experience from sleeping on your arm, for instance? I'm on Enbrel and I get that sometimes, but almost exclusively when I'm lying in a bad position, so I don't think it's neuro-related but I'd still like to learn more.


I am not sure about others, but for me it is definitely not my limbs falling a sleep. I can feel sharp, prickly need like sensations throughout my hands, especially in my knuckles and wrists, not so much in my ankles but it does happen. I had a talk with a nurse that came in to help me with my Humira injection today and we discussed my symptoms and she said that it is probably a good idea to hold off on the Humira until we get some feedback from my rheumy about the symptoms. This was something I ignored when I was on Humira consistently for 2 years, but now that I have started again, it has come back and it is really bothersome, especially when I am trying to get things done on the computer, just constant needle like sensations going on. I am curious to know if anyone else has had the same issue with their TNF blockers.

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