Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group AS AND PAIN MANAGEMENT--NEED SUGGESTIONS

First off I am lost with this diagnosis. When I was told in Feb 2016 that the debilitating pain I'd been experiencing since Nov 2015 was another autoimmune disease to add to my ulcerative colitis diagnosed in Aug 2014 no one explained anything. Tylenol? Let's take some Percocet for a month and you'll be fine? Sorry physical therapy didn't work so let's try some SI joint injections...what, those haven't helped either? Maybe a drug like Humira...oh, you've been on Simponi since April 2015 for UC...hmm, uh, yeah. Sorry, we've given you the diagnosis, we've already reduced the prescription pain killer & want you off it before the end of summer, & have a nice day.

Every step is agony. A knife feels as though it has lodged in my lower spine, grinding itself into my right hip and down my right thigh. Sitting too long (translation: 20 minutes) in any one position may not feel like that knife, but standing up turns that knife into a machete. I gave birth to an almost 9lb/22" boy 23 years ago w/o any medication, had spinal fusion from L5-S1 using bone scraped from my hip 16 years ago & returned to work FT w/in 6wks, hysterectomy 10yrs ago and also back at work a couple weeks later. This pain has me nearly down for the count and ready to give up.

How do I manage this pain? Do I ask for more injections? Request an extension on the pain meds? Try another biologic hoping my UC stays at bay? Make a voodoo doll of myself and massage its lumbar and thigh? Pray more than I already do (omitting the cuss words I've resorted to of late, of course)?

Just don't know what to do to manage the pain.

The Simponi should have been managing your AS pain. You theorically shouldn't be in pain with AS if you have been taking Simponi all this time. I am not sure why you would even be in pain.

Are you sure that they are unable to find another source?

How do you find Simponi in dealing with your UC

Hi Missjoo the biologics don't work for everyone I took Sinponi ARIA Simponi for infusion and it did nothing good or bad. There is as high as a 40% fail rate on the biologics. There are other things to do including getting referred to a pain management specialist I am lucky my Pcp gives me pain meds and gets how bad AS is. Most other doctor s are too scared to give me them. Also worth considering the no starch diet it really works when strict. Also not all biologics are the same humira and enbrel are different then simponi also worth trying Cosentyx new il 17 drug for AS. You have other options some get good relief from radiofrequency nerve ablation. Good luck.

WELCOME, Missjoojoobee:

I was able to completely eliminate pain from AS through diet plus antibiotics, but long before these I used long-term fasting to get out of the worst flares.

Regret one time the hip bursitis was so bad I was unable to walk and then made the terrible mistake of starting NSAIDs; these helped for many years but eventually ruined my skeletal structure, so I'm stuck with much lowered mobility and deformation.

I have tried the standard medical methods and they let me down BIG TIME, so I had to take control of my own therapy. I got very lucky and have not had active AS in over 15 years and no longer require very strict diet or antibiotics.

HEALTH,
John

I started with Humira and it worked right away, but took about 3 years to really work. For 2.5-3 years, it was good for about a week but now I'm pretty good for almost 2 weeks. Too, bad flares would still break through, not so often now.

On the other hand, my aunt started with Remicade and it did nothing for her, so after almost 3 years, they switched her to another. Can't remember which one, but its one advertised for psoriasis. Now she makes statements like "I finally have my life back!"

I know others on here that had to try several before they found one that worked.

Please don't give up on biologics after trying only one.

It took me 12 years to find a rheumatologist who would diagnose and treat me. Thus I had to do a lot of other things those 12 years.

I went to PT 1-2 times a week for years.

Ultrasound at the PT was so helpful, I bought a home ultrasound unit from MendMeShop.

Ice and more ice. I still use a lot of ice.

Hot showers or baths for the muscle spasms.

Some cortisone shots as needed...in my SI joint (2), in my wrists (2), in my cervical facet joints(3-4). I only let doctors I really trusted do them. And in total only had a few.

Between years 12-15, we used methylprednisone for flares. It was really helpful, but I needed it too often, hence the Humira.

Aleve for really bad flares. But I can only take it for a few days before it gives me edema and gastritis. A few other NSAIDs I could not tolerate the side effects at all (Ibuprofen hurt my stomach with one pill for example). A few NSAIDs did nothing. Aleve was the best compromise, but it was not a long term solution.

LDN did help the enthesitis. I stopped tearing tendons and ligaments. Tendonitis got better too. Started it in 2009 and still take it even the Humira.

Blue icy gel. CVS brand worked as well as the name brand.

Capsacin cream can help some. I am too sensitive to it; it gave me a chemical burn pretty bad.

I tried Lyrica but it gave me migraines. But its worth trying.

I still wear a flexor patch over my SI joint; I change it every 12 or 24 hours.

I have KIP gel (ketoprofen, ibuprofen, piroxicam) made by the compounding pharmacist. I rarely use it now.

Prior to Humira, I was managing my symptoms, but as the commercial says, "but managing my symptoms was all I was doing."

Humira puts all those things to shame. Though I still do some of them too.

Hi,
I was taking Remicade for 8 years and now the efficacy had down. Presently I am in flare. I have taken generic of Humira (Exemptia) 10 days back and waiting for results. So far no any changes observed. How much time it takes to show results?.

Regards.

Jay

If you've already got damage done in your spine/hip, biologics might not take away all the pain. I've got damage in SI, spine and feet, which my current biologic (nor the ones before it) can take away. I still have the occasional flare and still require MTX, Mobic and some pain meds. With all that, I'm working full time. Take away one or more, and that gets difficult.

It might be that a sensible combination of modalities is needed. And it could also be that your biologic isn't working for you and another might be better. I went through 4 and found the 5th was the best one so far. Hopefully, you'll do better than that, though. For me, Simponi did okay for a couple of weeks out of the month, but not the whole month. I gave up after 9 months of trying it out. Currently on Cimzia for PsA.

You can see in my sig the varied pain management procedures I've done. My doc is very astute and has kept me going in the areas where the meds haven't worked.

I have taken generic of Humira (Exemptia) 20 days back and waiting for results. So far no any changes observed. How much time it takes to show results?.

Regards.

Jay

internet says its working in you but the result will show very slow in about 3 months......benifit is that if it works slow than side effects chances are also low ..i also want to start it pls join me on fb
https://www.facebook.com/deepeshjikhare