banners
Kickas Main Page | Rights and Responsibilities | Donate to Kickas
Forum Statistics
Forums33
Topics44,197
Posts519,917
Members14,178
Most Online6,185
Nov 2nd, 2025
Newest Members
BlueHoundie, PillarAdvocates, SupuSingh, sandyjrob, Lisa12345
14,178 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.

KickAS QR Code
Previous Thread
Next Thread
Print Thread
Page 7 of 9 1 2 3 4 5 6 7 8 9
Joined: Dec 2008
Posts: 5,231
WendyR Offline OP
OP Offline
Joined: Dec 2008
Posts: 5,231
Thanks Irish. Also thanks for all the humour you bring to KA.


Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil
Joined: Sep 2009
Posts: 1,236
Copper_AS_Kicker
Offline
Copper_AS_Kicker
Joined: Sep 2009
Posts: 1,236
Twice in the last month I forgot to take my a.m. meds, which include the prednisone. By the end of the day I couldn't understand why I felt so much pain and stiffness...until I saw at bedtime that I missed my dose.

I've been on it for 4 months and it doesn't seem to be doing much. Well, my oncologist said it made my nodes completely normal, but AS wise, it is helping a little with peripheral joints, but not SI. Or maybe it is the 10mg of prednisone.


Micki
Mom to 9
Dx'ed Ocular Herpes, Sept. '08
Dx'ed AS May '09, suffering on and off since 1979
Dx'ed Non-Hodgkins Lymphoma May '08, relapse Oct '11
Joined: Dec 2008
Posts: 5,231
WendyR Offline OP
OP Offline
Joined: Dec 2008
Posts: 5,231
Are you on mtx, Micki?


Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil
Joined: Sep 2009
Posts: 1,236
Copper_AS_Kicker
Offline
Copper_AS_Kicker
Joined: Sep 2009
Posts: 1,236
Yes, 20mg. At my visit in April doc mentioned adding an NSAID. So far all the NSAIDs I've tried have had undesireable side effects, so i don't know where he wants to go from here.

I'm so glad you can walk again. Tuesday I walked about 1km and not all at once either (shopping at Target, then 2 0.5 mile stints plus a little more), but on Wednesday, I could barely move until the late afternoon. If I'm on my feet for 20 minutes my thighs start getting numb and tingly and now pain is added.

I see rheumy in 10 days.


Micki
Mom to 9
Dx'ed Ocular Herpes, Sept. '08
Dx'ed AS May '09, suffering on and off since 1979
Dx'ed Non-Hodgkins Lymphoma May '08, relapse Oct '11
Joined: Sep 2001
Posts: 8,397
L
Lon Offline
Very_Addicted_to_AS_Kickin
Offline
Very_Addicted_to_AS_Kickin
L
Joined: Sep 2001
Posts: 8,397
Micki,
Along with DISH....
stenosis at L 4, bulging disk causes my thighs get very heavy, then numb, then dingle and then they / plus my ample behind, just hurt like a son of a gun!!!
have they done the x-rays//...

How are the kids?
Is it summer there?


I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
Joined: Dec 2008
Posts: 5,231
WendyR Offline OP
OP Offline
Joined: Dec 2008
Posts: 5,231
I'm taking celebrex as an NSAID but, as it's a COX2, it doesn't seem to be giving my any stomach issues.

Sounds like you are on a similar regimen to me - mtx plus pred. I'm up to 25mg mtx per week but I'm keeping my pred down to 6mg per day. When I start reducing again, it will be very very slowly. I just want to get off the pred. It seems so pointless taking a toxic drug like mtx if I also have to take pred.


Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil
Joined: Jan 2008
Posts: 21,346
Likes: 2
Very_Addicted_to_AS_Kickin
Offline
Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346
Likes: 2
hi micki,

i noticed that you said something, either the mtx or pred seem to be helping the peripheral joints more than the SI.

and saw you say you haven't found a NSAID yet that you could take (side effect wise).

not sure what side effects you have from the NSAIDs, but if its tummy troubles, Wendy's point of trying the Cox2 inhibitor might be worth considering. i was able to take vioxx a few times a week for about 3 years before it bothered my stomach, whereas every NSAID i have tried affects my stomach much quicker.

but an equally big problem for me is edema, and that is a side effect that i get from both the NASIDs and the cox2 inhibitors.

but still, if you haven't tried the celebrex, its worth considering.

for me, since i can't take either NSAIDs or Cox2 inhibitors but they really do help with my inflammation, i've been trying topical NSAIDs with some good effects. the LDN has helped all my joints so much except for the SI not as much, so started wearing a flector patch over it. the combo of LDN and flector patch seems to be helping a lot; not enough, but significantly. and i also have a triple NSAID topical creme. i don't usually use that, but last week my cervical spine was very bad, so i tried the creme and it helped a lot, finally after about a week it has calmed down, don't know if the creme calmed it down or just made it less painful while it was flaring, either way, its a lot better now.

don't know if any of these topical NSAIDs (patches or creme) could help you, but thought i'd mention them as options for people for whom NSAIDs help their symptoms but for whom the NSAIDs cause intolerable side effects.



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: Sep 2009
Posts: 1,236
Copper_AS_Kicker
Offline
Copper_AS_Kicker
Joined: Sep 2009
Posts: 1,236
Lon,
How wonderful to add DISH and a big butt to your medical CV. wink
Last x-rays were a year ago. Perhaps I need updated ones? All doc said after x-rays was that there is active arthritis. And in April when I explained the numbness, he said it was sacroiliitis. His focus is on reducing the inflammation, which will then reduce the pain. So far he hasn't offered, and I haven't asked for anything to treat other symptoms. Yet.

Summer is here. The kids have 4 more days of school. The middle school starts at 5th grade here, so my 4th grader is "graduating". It's a cool, cloudy, rainy day here. We like it.


Micki
Mom to 9
Dx'ed Ocular Herpes, Sept. '08
Dx'ed AS May '09, suffering on and off since 1979
Dx'ed Non-Hodgkins Lymphoma May '08, relapse Oct '11
Joined: Sep 2009
Posts: 1,236
Copper_AS_Kicker
Offline
Copper_AS_Kicker
Joined: Sep 2009
Posts: 1,236
If I felt more relief from the MTX. If I actually felt normal like doc said I would, then it would make sense to me to continue it, in spite of the risks. I don't know. aTNFs scare me because I've already had Lymphoma and I don't want to encourage it to return. Plus the lowered immunity doesn't sound cool when you are living with 7 children who bring everything.

Anytime I drop from 10 to 5mg I feel awful. Doc hasn't tried dropping 1mg at a time.


Micki
Mom to 9
Dx'ed Ocular Herpes, Sept. '08
Dx'ed AS May '09, suffering on and off since 1979
Dx'ed Non-Hodgkins Lymphoma May '08, relapse Oct '11
Joined: Sep 2009
Posts: 1,236
Copper_AS_Kicker
Offline
Copper_AS_Kicker
Joined: Sep 2009
Posts: 1,236
I tried Celebrex. NSAIDs give me edema, pitichiae and depression, or a combo of them. I've assumed that patches and gels would not be good for me, too, but maybe I'll ask doc.

You can't take LDN while on SSRIs, so it's a no-go for now.


Micki
Mom to 9
Dx'ed Ocular Herpes, Sept. '08
Dx'ed AS May '09, suffering on and off since 1979
Dx'ed Non-Hodgkins Lymphoma May '08, relapse Oct '11
Page 7 of 9 1 2 3 4 5 6 7 8 9

Moderated by  WendyR 

Link Copied to Clipboard
Who's Online Now
1 members (1 invisible), 2,061 guests, and 218 robots.
Key: Admin, Global Mod, Mod
Recent Posts
An Inconvenient Study about neuroimmune diseases
by Robin_H - 10/19/25 01:29 PM
SIBO and possibly a better solution
by DragonSlayer - 11/29/23 04:04 AM
Popular Topics(Views)
3,641,790 hmmm
1,461,716 OMG!!!!
837,803 PARTY TIME!
Powered by UBB.threads™ PHP Forum Software 7.7.5
(Release build 20201027)
Responsive Width:

PHP: 5.5.38 Page Time: 0.053s Queries: 35 (0.037s) Memory: 3.2610 MB (Peak: 3.4661 MB) Data Comp: Zlib Server Time: 2025-11-14 17:48:04 UTC
Valid HTML 5 and Valid CSS