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#505688 08/05/14 11:56 PM
Joined: Jan 2008
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Sue22 Offline OP
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Was just approved to take Humira once a week instead of once every two weeks.

Been on it since June 2013 with good effect, but first week is always better than the second.

Three visits ago, rheumy suggested maybe my going every 10 days.

Two visits ago, I was all set to do it weekly, but he wanted me to try diet just a bit more, eliminating yeast (bread).

This last visit, it was decided he'd get me approved for weekly and I should start out with every 10 days.

Over the last three months, I went dairy free (not just cow, but goat and sheep too) and egg free and yeast free (for 2-4 weeks) and it didn't make much of a difference far as we could tell. Though I will play some more with diet.

Because:

1. He said "you've already given up so much already" when I suggested I'd try the stricter diet again and see about allergy shots (to dust mites and molds).

2. I did so much better in week 1 than in week 2.

and

3. I really have had no issues with getting sick or infections.

It has been decided to do the shot every 10 days. He's afraid it would be too big of a shock to my system to go from 14 to 7 days.

So, 10 days it is. That's tonight! Yay!

Saturday or Sunday, had a rib "out" on the left due to loose joints due to fluid due to inflammation, with the right shoulder blade / rib area complaining. The chiro helped me with it. Hurt yesterday but today was a bit better. Still, the shot tonight will be nice.

So, for now, 10 days it is 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)
Sue22 #505691 08/06/14 02:07 AM
Joined: Dec 2010
Posts: 456
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Hi Sue - It sounds like you have a great Rheumy. Hope the diet changes and taking your Humira more frequently gives you more pain relief real soon.

Shari


Meds -Hizentra, leflunomide, Prednisone
Sue22 #505692 08/06/14 03:18 AM
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Hi Sue,
It looks good to notice that Rhuemy suggesting diet.
I consulted one ortho doctor for my hip problem a month back, he was suggesting me vegan diet and to avoid diary products.

Jay

Sue22 #505699 08/06/14 06:06 AM
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At least you aren't 'too quick' <wink> about the change....a whole year of waiting before bumping up the dosage. He's right about you giving up so much. That's a lot of research on food issues that might be causing your problems. Hope the q10 days works out well for you. But if you need it, you can still go to weekly. Good luck!


DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
Winter #505720 08/07/14 11:58 AM
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Sue22 Offline OP
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thanks winter,

got a shot tuesday night and yesterday, my bowels were immediately better, my upper back started feeling better, and the dry eyes went away.

I'm still tracking everything. That's how we got from 14 days to 10 days, but it was with a lot of careful consideration by my rheumy and me. I do respect Humira as the powerful drug that it is.



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)
jay_bharat #505721 08/07/14 12:00 PM
Joined: Jan 2008
Posts: 21,346
Likes: 1
Sue22 Offline OP
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Hi Jay,

I do think diet is a piece of the puzzle for sure. Don't think its the only piece. But every little bit helps.

For me, dairy I think is the biggest one, as the IgA or I gG was "off the charts".



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)
rumble #505722 08/07/14 12:08 PM
Joined: Jan 2008
Posts: 21,346
Likes: 1
Sue22 Offline OP
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thanks rumble.

i'm glad that i have a rheumy that seems to understand autoinflammatory diseases so well and people's responses to the biologics as well; like last august when I flared despite the Humira and he told me to take the methylpred to get me through the flare. I know you and I have talked about all of this before, how its important to know the difference between a biologic stopping working and a biologic just not being as powerful as some flares.

But this shot on tuesday night was a Godsend. It cleared the constipation right up, fixed the dry eye overnight, and after a day, my upper back is settling down.

What I don't completely understand is why for some people, every 2 weeks is fine, and for others, weekly seems to be key?

I still remember you saying that Humira worked really well for just a few days. I've seen that some injections, but for me, usually a week is very good, 10 days is doable, and often by day 14, it can't get here soon enough.

Big thing for me now is to make sure I don't get more infections. That's what the rheumy kept asking me in consideration for more frequent injections.

Too, I think we need to make sure we monitor the white blood cells; I remember that was why you stopped the Humira. So far, so good for me. But need to keep remembering that.



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)
Sue22 #505728 08/07/14 06:22 PM
Joined: May 2012
Posts: 17
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Okay guys. This is not a success story but the opposite. I have been on the low/no starch diet since 09/2013. I cannot say that I feel any better or have less
SI/neck/sacrum pain. No difference in fatigue. I have been somewhat disappointed. No doubt I had some slip ups and around the holidays was tough but I stuck to it. I have managed to loose about 25 lbs. but did not need to. I weigh 149, not enough for me. Not sure if I did something really wrong but can assure you I was not aware of it.
I do not want to discourage those that have had good success with the diet as I feel there is a definite connection with diet and the onset of AS. I have been diagnosed for almost 40 years. Have had to have a bowel resection and now shoulder replacement. SI joints are about fused and guess I will battle till the end.
This is a most insidious disease that is making retirement anything but good.

Sue22 #505732 08/07/14 07:40 PM
Joined: Nov 2002
Posts: 6,925
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Addicted_to_AS_Kickin
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Sue, I am so glad it works for you and glad your rheumy is understanding and works with you

I think I am feeling better with a stricter diet. At least I am better from something. smile

Hugs.




Possi
*********************************************************

RUN WHEN YOU CAN,
WALK IF YOU HAVE TO,
CRAWL IF YOU MUST,
JUST NEVER EVER GIVE UP!



"A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS."

"A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."

Possi #505781 08/10/14 05:51 PM
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Posts: 21,346
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Sue22 Offline OP
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thanks Possi,

Aug 1st and it was like my body knew it was august, ribs started acting up again, triggerpoint in intercostal muscle between ribs on right side made it hard to breath….very tight all over when went to the chiro, tighter than I realized, unil he started pressing on the muscles along the spine, etc……then took the Humira on day 10…..and when I went back to the chiro a few days later, my back was so much better……

too, dry eyes for 2 days before the Humira, now gone….

and as usual, helped with the bowels…..



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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