banners
Kickas Main Page | Rights and Responsibilities | Donate to Kickas
Kickas Links
·HOME
·Forums Main Index
·Register!
MEDICAL CENTRE
·Medicine Contract
·AS Patient Guidebook
·Pain Map
·Disease Modification
·Ask your doctor
·AS and RA Papers
·AS Acronyms
DIET CENTRE
·London AS Diet
·Molecular Mimicry
·AS Dietary Primer
·AS Food Guide
SUPPORT CENTRE
·In Memorium
·KickAS Stories
·KickAS Banners
·Donations
Forum Stats
13,767 Registered Members
28 Forums
43,766 Topics
518,663 Posts

Most users ever online: 1,568 @ 06/29/16 02:25 PM
Newest Members
fvia, bhodi, jianghs, Bibek, Rosa_2021
13767 Registered Users
KickAs Team
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)

Moderators:
- Tim (Dotyisle)
- Chelsea (Kiwi)
- Megan (Megan)
- Wendy (WendyR)
- John (Cheerful)
- Chris (fyrfytr187)

QR Code
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.
Page 3 of 4 < 1 2 3 4 >
Topic Options
#492954 - 08/08/13 12:57 PM Re: severe pain, not sure what to do.. [Re: lulu12]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21346
Loc: Upstate NY
My chiro does ART along with other soft tissue work.

Molly's suggestion of Celebrex is a good one; I couldn't take it due to side effects unrelated to gut (made me tired and spacey, mobic does that to me as well, but that's not a really common symptom). It is a lot easier on the gut, but over time, even that gave my mom an ulcer. Vioxx, a cox2 inhibitor, finally gave me gastritis, but it took a lot longer for that than it does for the nsaids.

Fish oil is another possibility (or flax seed oil if vegan). You have to take at least 3-4 grams of it to notice an effect. It doesn't help me much, but good for my cholesterol, so I continue to take it.

Topical nsaids can be effective and don't bother my gut. Voltaren gel is 1.2% dichlofenac; its not strong enough for me. But KIP gel (ketoprofen / ibuprofen / piroxicam) that my compounding pharmacist whips up for me is pretty powerful stuff. I save it for my neck. Other things I use ice, contrast hot/cold, and/or ultrasound. And I wear a flector patch over my SI joint. The blue icy gel (menthol is the active ingredient I believe) can also help. Basically I've had some help from topical things. Though it doesn't do anything internally, so doesn't help the GI inflammation, etc.
_________________________

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)

Top
#492958 - 08/08/13 01:12 PM Re: severe pain, not sure what to do.. [Re: lulu12]
an0thermike Offline
First_Degree_AS_Kicker

Registered: 08/26/12
Posts: 184
Loc: SF Bay Area
lulu, I don't know how long you've been on the no starch diet, but it just doesn't work for some people, no matter what they do. The longer you wait to get on the meds, the worse your prognosis may get. I'd say if you feel like you've given the diet a shot to do something and it hasn't done anything, then its probably time to call your rheumy. I mean I understand the hopes you have for the diet, but do you really want to torture yourself forever if you don't see improvement?
_________________________
Mike / 35yo / HLA-B27+ / diagnosed with AS march 2012 / Dermatographic Urticaria since 2017
FODMAP diet, Enbrel, Meloxicam, Tramadol PRN, Xolair for chronic hives.

Top
#492973 - 08/08/13 05:57 PM Re: severe pain, not sure what to do.. [Re: an0thermike]
lulu12 Offline
Fifth_Degree_AS_Kicker

Registered: 07/07/13
Posts: 376
Thanks everyone. If I didn't have Lyme in the picture I would probably just try the enbrel. But because of the Lyme I am afraid.

Today was just awful. The pains in my hips and SI joints just won't let up. My stomach feels a mess , so much gas. Not sure how to calm it down. One of my hands had sore painful joints as well and I kept getting awful chills.

I know I need to make some decisions as I can't go on like this.

Top
#492977 - 08/09/13 12:54 AM Re: severe pain, not sure what to do.. [Re: lulu12]
an0thermike Offline
First_Degree_AS_Kicker

Registered: 08/26/12
Posts: 184
Loc: SF Bay Area
How were you diagnosed with the lyme? I went down the whole lyme road last year, so I'm curious. Did you actually have a test that showed an infection? If so, do you know the name of the test that showed it?
_________________________
Mike / 35yo / HLA-B27+ / diagnosed with AS march 2012 / Dermatographic Urticaria since 2017
FODMAP diet, Enbrel, Meloxicam, Tramadol PRN, Xolair for chronic hives.

Top
#492979 - 08/09/13 03:24 AM Re: severe pain, not sure what to do.. [Re: lulu12]
MollyC1i Offline
Very_Addicted_to_AS_Kickin

Registered: 01/21/04
Posts: 9843
Loc: Brittany, France (since Nov 08...
lulu - you could try the biologic for a short while? Get this major flare under control? At least go see your rheumy again and discuss the whole matter with a concerned professional.

Wish you the best in this - take care
_________________________
MollyC1i - Riding OutAS

Top
#492982 - 08/09/13 06:59 AM Re: severe pain, not sure what to do.. [Re: lulu12]
jhnii Offline
New_Member

Registered: 08/15/10
Posts: 23
Loc: Blackfoot, ID
I was apprehensive about a biologic too but I couldn't walk. My feet hurt so bad it was all I could do to get to the bathroom from my bed. Enbrel gave me my life back, for a while. I am looking into a clinical trial with my rhumy and if that doesn't give me any positive results I will be starting the Humira. I was taking Indocin but my stomach said no. The pain is getting worse again, mainly in my SI but also runs down the back of my legs and to my feet. This is such a frustration disease. Thank you so much for this site, I know I don't post much but it is so comforting to see that I am not alone.
_________________________
Heather

diagnosed AS 2010
enbrel

Top
#493001 - 08/09/13 05:20 PM Re: severe pain, not sure what to do.. [Re: an0thermike]
lulu12 Offline
Fifth_Degree_AS_Kicker

Registered: 07/07/13
Posts: 376
Mike I went to a Lyme Literate practitioner and had a western blot done. The results would not be considered positive by CDC standards but were by ILADS.

Top
#493040 - 08/11/13 12:54 PM Re: severe pain, not sure what to do.. [Re: lulu12]
raj Offline
Active_Member

Registered: 08/15/07
Posts: 57
Loc: India Mumbai
Hi Lulu
I really doesn't know much about the medicines u mentioned above, but one thing is common- I had around 100gm of corn one evening and I had a severe pain next morning...seriously highest during this disease in last 10 yrs!
After this I have stopped eating it.
So it looks some connection here!

Here in India, and being veggie I have really less choice of food....specially NSD diets frown
I hope, soon researchers/docs should come forward with some cure.
_________________________
-Raju

--Diagnosed with HLA-B27(By PCR method), Pain since last 15 yrs. Looking for suggesstions & important advices here!

-Every morning I wake up only because I look forward to spending another day with my princess- my Wife! Will love you forever and ever.....
--------------------------------------------------------------------------------

Top
#493041 - 08/11/13 01:10 PM Re: severe pain, not sure what to do.. [Re: lulu12]
an0thermike Offline
First_Degree_AS_Kicker

Registered: 08/26/12
Posts: 184
Loc: SF Bay Area
Originally Posted By: lulu12
Mike I went to a Lyme Literate practitioner and had a western blot done. The results would not be considered positive by CDC standards but were by ILADS.


If they weren't considered positive by cdc standards than why were they considered positive by ilads? How the criteria different. I'm trying to understand because I'm pretty sure I was in your situation when I was first diagnosed with AS. I went to lyme literate doc too and he told me I had lyme. I ended up finding out over time and a lot of pain, that that lyme literate doc was, frankly, full of crap and I just had AS. If I had just taken the enbrel when my rheumy first prescribed it and not waited 6 months or so until my disease got really bad, I might be in remission right now.

I'm not saying your lyme doc is wrong, but I'm saying you should be careful. A lot of these non standard tests these lyme docs sell aren't exactly legitimate.
_________________________
Mike / 35yo / HLA-B27+ / diagnosed with AS march 2012 / Dermatographic Urticaria since 2017
FODMAP diet, Enbrel, Meloxicam, Tramadol PRN, Xolair for chronic hives.

Top
#493043 - 08/11/13 05:38 PM Re: severe pain, not sure what to do.. [Re: lulu12]
Ktrob Offline
New_Member

Registered: 06/02/13
Posts: 20
For what my answer is worth, since I am only newly working out how to treat myself. I find that I have to follow not only LSD but also pay attention to any other allergies I have. If you have an allergy to corn you would really need to investigate this sice corn is hidden in so many things, like toothpaste and many foods as a thickener etc. Cornstarch is used in so many things. I just thought I'd mention this because it may help you at some point.

Top
Page 3 of 4 < 1 2 3 4 >

Who's Online
0 registered (), 100 Guests and 0 Spiders online.
Key: Admin, Global Mod, Mod
Recent Posts
Electromyography (EMG) test
by Magician
09/30/21 10:03 PM
Vaccination effect on AS
by WilliamA
03/27/21 12:57 PM
How many of us had / have covid?
by DonCA
07/23/20 03:19 AM
(Views)Popular Topics
"FITNESS" TEAM! - All Physical Activity & Sports 62,016,196
hmmm 2,987,692
Has anyone had Pedicle subtraction Osteotomy ? 2,522,313
What to do about healthcare? Can it be fixed? 1,747,555
User names revisited 1,320,263
A.S and beds, What do you find best? 1,304,018
Medicinal Marijuana 1,245,347
OMG!!!! 1,183,180
No/Low Starch Diet Success Stories 965,973
PARTY TIME! 601,258