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Joined: Jan 2012
Posts: 199
First_Degree_AS_Kicker
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First_Degree_AS_Kicker
Joined: Jan 2012
Posts: 199
Read the full story on how I rebuilt my autoimmune system in 2014.

2012 and 2013 were the most difficult years of my life. 2014 was all about getting my life back together and rebuilding my autoimmune system by eating within the Autoimmune protocol + taking Humira.



Autoimmune Rebuilding with Humira

As much as I tried to not use a biologic, I realized that my body cannot rebuild and heal (without severe consequences) with a dysfunctional autoimmune system (due to the environmental factors that contribute to autoimmunity). Here are my inflammation blood test results from 2014 while on Humira compared to 2012 & 2013 (mostly without Humira but eating healthy):



The graph above shows two markers of inflammation. Normal SED rates range from 0 – 15 and CRP ranges from 0 – 4.9.


- SED Rate: Normal rates 0 – 15. In April 2012, highest was 101 (chronically killing me). My lowest was 4/4/14 which was a 2.
- CRP Rate: Normal rates 0 – 4.9. In April 2012, highest was around 142.8 (chronically killing me). As of 4/4/14, it is under 1 and I have never been that low.
- Fibrinogen Activity: Another marker of inflammation (not shown in graph). Normal Rates 193 – 507. 6/6/13 I was at 578 and on 4/4/14 which was a 203. I do not plan on taking more of the Fibrinogen tests as insurance companies are increasingly not accepting them.


2014 Humira Timeline

- From November 2013 to February 2014 I used Humira as directed (every 2 weeks). March to May 2014 the longest I would go without a dosage was once per month. The results from April are my lowest in inflammation.
5/30 – 9/2/14 I went off Humira for 3 months (94 days). On average, Humira will stay in your system 82.5 days as the average half life of Humira is 15 days X 5.5 (decay rate). The results were an elevated CRP of 6.3. Symptoms that started coming back were bloating, stiff neck (enough to start restricting my movement out of bed), weight decreasing to upper 140s, mucus in BM & and fissure was starting to occur. With these results and my doctor’s suggestions I went back on Humira but only taking one dosage per month.
Going back on Humira, the 1st month (September) still had the most symptoms (but issues above mostly cleared up within 2-5 days) and 2nd month (October) I was almost symptom free. By the 3rd month (November) things did clear up and I was back to normal.


Conclusion

My hope is to one day be off any medications but I accept this may take years. Until then I won’t give up on finding ways to fix my root causes and not just the symptoms.


My Autoimmune Blog - Ups & Downs with NSD & SCD, the NEED for Meat and STARCHES, and the Effects of Getting Off Enbrel (biologic) and Going on Humira: http://100percenthealth.us/
Joined: May 2014
Posts: 48
J
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J
Joined: May 2014
Posts: 48
are you still doing your blog?

Joined: Jan 2015
Posts: 109
Journeyman_AS_Kicker
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Journeyman_AS_Kicker
Joined: Jan 2015
Posts: 109
Hi could i please ask you a few questions i would be very grateful if you could answer them all thanks!
What age did you start experiencing symptoms of AS?
How long did it take before you were diagnosed?
What treatments have you been on?
How far has your AS developed (any fusion or hip fusion/ hip replacement)
Finally are you currently experiencing any symptoms?

Kind regards


Your not alone........ There's always hope!
Keep Strong, keep smiling and keep your head up.
Singh means LION!!! ROAARRRR!
Joined: Jul 2001
Posts: 3,334
Offline
Joined: Jul 2001
Posts: 3,334
It's great to hear you doing well. I tried Humira for 5 months and didn't notice any difference and yet others get relief immediately. My one Medical Law is that everyone's wired differently.
I then tried Enbrel and lasted 3 weeks with huge side effects so I had to stop.
Next is Remicade so fingers crossed smile

Good luck in the future!


Timo
Joined: Jan 2008
Posts: 21,346
Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346
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Qualitatively I can see a huge improvement on Humira, and I was one of the lucky ones to feel an effect right away, same day within hours I could feel an improvement in my feet while standing. Though I still flare, they are more manageable.

However, my CRP and ESR were never very high when measured so never had a good marker to use as comparison.

But thankfully a rheumatologist now who believes what I tell him. Too, the Humira nurses have wanted to hear how the Humira has helped me.

Just glad its helped me.

Your chart though is a good visual of how it has helped you, so long as symptom relief came with marker changes, which sounds like was the case.

Glad its helped you as much as its helped me.

TImo: hope the next drug is the answer for you smile



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)
Joined: Jul 2001
Posts: 3,334
Offline
Joined: Jul 2001
Posts: 3,334
Hi Sue. I think my "cold" is still working as my inflammation is still down. I even had a blood test for inflammation and for the first time I was in range at 2.1 where 5.0 was the upper limit. I was usually around 28 or so for years.
Plugged ears seems to be doing something for me smile


Timo
Joined: Jan 2012
Posts: 199
First_Degree_AS_Kicker
OP Offline
First_Degree_AS_Kicker
Joined: Jan 2012
Posts: 199
Originally Posted By Amrit_Singh
Hi could i please ask you a few questions i would be very grateful if you could answer them all thanks!
What age did you start experiencing symptoms of AS?
How long did it take before you were diagnosed?
What treatments have you been on?
How far has your AS developed (any fusion or hip fusion/ hip replacement)
Finally are you currently experiencing any symptoms?

Kind regards


Amrit,

I wasn't notified of any updates and just saw this.

I started experiencing and treating AS since 2003/2004 - late 20s. However, I didn't understand the ways of stopping AS (without medication) until 2012. I was diagnosed within months as AS was starting to be understood more then due to Enbrel coming out. 2003/2004 - 2012 was Enbrel and 2014-2015 Humira.

"Treatments" is a bit generic so I suggest you take a look at the "autoimmune tests" on the right side of all my blog pages: http://100percenthealth.us/

No fusion yet as I caught it early & continue to exercise / stretch. Symptoms are minor compared to what I was going through while off the biologics (read about those autoimmune symptoms.) . Mostly what I see now is bloating, varying stool consistencies, and some stiffness.


My Autoimmune Blog - Ups & Downs with NSD & SCD, the NEED for Meat and STARCHES, and the Effects of Getting Off Enbrel (biologic) and Going on Humira: http://100percenthealth.us/

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