Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
Consequences of not taking medication #275362 07/15/16 07:21 PM
Joined: Jul 2016
Posts: 6
M
maryshell Offline OP
Registered Visitor
OP Offline
Registered Visitor
M
Joined: Jul 2016
Posts: 6
New on this board. Had AS symptoms since I was a teenager, but was diagnosed in my late 30s. There were days when I couldn't get up and put my shoes on. Since I was diagnosed, I changed my lifestyle: diet, yoga everyday, chiropractor every two weeks, reiki, meditation, massage, you name it. Since then, I haven't had any pain for about 9 months. Actually, haven't felt better since my 20s. My doc insists on medication. My question is what would happen if I don't go on medication? I understand that this period can be just a remission. When remission ends, not being on medication right now, would that somehow affect me badly?

Re: Consequences of not taking medication [Re: maryshell] #275363 07/15/16 07:58 PM
Joined: Mar 2013
Posts: 2,167
S
SouthernMoss Offline
Registered Visitor
Offline
Registered Visitor
S
Joined: Mar 2013
Posts: 2,167
Pain does not always correlate with disease progression. So even though you may not be feeling any pain right now, your disease may still be progressing in the background, causing damage that cannot be repaired.

What medications are you on? Biologic medications (and to a smaller extent, NSAIDs) can help prevent or delay damage from the disease.

I'm glad you are getting a break from the pain. Fingers crossed that you remain pain-free for a long, long time!


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Consequences of not taking medication [Re: maryshell] #275364 07/15/16 08:13 PM
Joined: Oct 2015
Posts: 387
S
Shippingnews Offline
Registered Visitor
Offline
Registered Visitor
S
Joined: Oct 2015
Posts: 387
Hello, Glad you are feeling good about your AS. There can be changes happening in your body which you can not feel and they can come back with a vengeance. I had this remission period too, although that was before I was diagnosed. Can you do both (medication and yoga/etc.?) chiropractor is not generally advised because there is a chance it may break your calcification and which will be extremely painful once that happens, and may be even worse than you can imagine. I think it will not harm if you take your time to decide about your medications. But I think you should immediately stop going to Chiropractor. There was a seminar by Angelo Papachristos MBA BScPT HD where he said so, to avoid chiropractic adjustments. I am at work right now so cannot go through it and let you know where exactly he said that.
https://www.youtube.com/watch?v=TWSHUmMhluU

Also please read this
https://www.spondylitis.org/Learn-About-Spondylitis/Alternative-Treatments



Chiropractic Treatment
Some people with spondylitis swear by regular chiropractic sessions, but doctors do not recommend this treatment for ankylosing spondylitis.

"Anyone with limited spinal mobility due to [ankylosing spondylitis] should avoid manipulation of their back or neck by chiropractors and masseurs because it can be dangerous," claims Dr. Muhammad Asim Khan, rheumatologist, and AS patient. Dr. Khan explains that chiropractic treatments have sometimes inadvertently led to spinal fractures and neurological complications, especially in individuals with fusion (extra bone growth) due to spondylitis.
"Ankylosing Spondylitis: The Facts (Oxford Medical Publications)" by Dr. Muhammad Asim Khan, member of the Spondylitis Association of America Medical and Scientific Advisory Board.

I was diagnosed by a chiropractor and I almost fell for getting treatment from him, but he made me worse on day 1. And then I went to rheumy. I am thankful he did not make me feel good, else it would have ended bad for me, since I have clear fusion in my spine and SI joints.

All the best!!


Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16
Re: Consequences of not taking medication [Re: maryshell] #275365 07/15/16 09:26 PM
Joined: Jun 2003
Posts: 2,951
T
Tacitus Offline
Registered Visitor
Offline
Registered Visitor
T
Joined: Jun 2003
Posts: 2,951
Hello, maryshell:

It depends upon the medication and also Your overall disease activity.

Certain medications can do more harm than good.

HEALTH,
John


Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

Re: Consequences of not taking medication [Re: maryshell] #275368 07/15/16 11:19 PM
Joined: Jun 2012
Posts: 630
RAHMBA Offline
Registered Visitor
Offline
Registered Visitor
Joined: Jun 2012
Posts: 630
welcome to the forum. This is a great question and one that gets asked at every support group meeting.

as far as consequences for not starting right away: 1. There is some evidence that some meds (biologics) are most effective for reducing the progression of the disease if started within the first 10 years of disease. also correlated if have high inflammatory blood test results. 2. loss of quality of life in pain when didn't need to be. 3. permanent fusing (some people fuse very fast, some never fuse).

Treatments including medication is a personal decision. as others have already said, there could be inflammation and permanent damage happening without your knowledge. There can be long term consequences to uncontrolled inflammation, some of them are familiar such as fused spine (and risk of fractures), the co-management of IBD, uveitis and PsA (if those are issues for you). some long term consequences are nasty (cauda equana syndrome, heart and lung issues).

Of course, there short and long term risks to medications. For most people the serious risks appear to be very low. but, for some unlucky people it didn't matter how low the risk was.

personally, I had a rare life threatening reaction to sulfasalazine (which at the time was a treatment for AS and has subsequently been found not effective. this reaction was severely exacerbated by negligent docs). so, a bit gun shy when it comes to chronic meds for chronic pain and relying on docs. I'm very happy with my decision. actually it is a decision I made/make with my spouse. Still I wonder about the long term consequences of my decision.

I hope that helps.

kindest regards,
Rich


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: Consequences of not taking medication [Re: maryshell] #275369 07/16/16 12:12 AM
Joined: Jul 2016
Posts: 6
M
maryshell Offline OP
Registered Visitor
OP Offline
Registered Visitor
M
Joined: Jul 2016
Posts: 6
Thank you for your responses! I actually never went on medication since I was diagnosed about a year ago. That's why my doc is so adamant about me going on meds. She wants me to take sulfasalazine which, as I can see from above, is not the most effective? Now I am concerned. Concerned if my doc is a good one. One reason I don't want to do medication is that I am already on medication for another condition. Have been for years. I want to reduce strong medications to a minimum.

Shippingnews, thank you for the info on chiropractic care. I did not know that! My rheumatologist told me it may help. I actually have it in writing from her!

Another huge problem for me is medical insurance. I will loose mine in a few months and as I am self-employed, I can't get good coverage. I am afraid how much more I'd have to pay for my meds. My other medication for another condition costs more that $1K per month, currently covered by insurance (I pay only $50).

Re: Consequences of not taking medication [Re: maryshell] #275370 07/16/16 12:13 AM
Joined: Jul 2016
Posts: 6
M
maryshell Offline OP
Registered Visitor
OP Offline
Registered Visitor
M
Joined: Jul 2016
Posts: 6
Forgot to add. I'm going to see my rheumatologist next week. I want to get as much info as I can to prep questions. I know she took xrays of my back before and I also had scans done, but I don't remember her telling me anything about fusing. She just said everything was OK. Now I'll know what to ask about.

Re: Consequences of not taking medication [Re: maryshell] #275374 07/16/16 03:46 PM
Joined: May 2010
Posts: 1,544
W
WhiteCell Offline
Registered Visitor
Offline
Registered Visitor
W
Joined: May 2010
Posts: 1,544
I would strongly encourage you to seek a 2nd opinion in a major city and/or major med center.


Diagnosed AS 2001.
Started Remicade 2002 - 5mg/kg every 7 weeks.
Right Eye Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Cardiac Stent to RCA 9/2020

ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
Re: Consequences of not taking medication [Re: maryshell] #275404 07/18/16 10:24 PM
Joined: Jul 2016
Posts: 6
M
maryshell Offline OP
Registered Visitor
OP Offline
Registered Visitor
M
Joined: Jul 2016
Posts: 6
I'm in Houston where we have a huge med center. How do you find a good doc? I looked through the posts here and there are no recommendations for my specific city.

Re: Consequences of not taking medication [Re: maryshell] #275407 07/18/16 11:37 PM
Joined: Jun 2012
Posts: 630
RAHMBA Offline
Registered Visitor
Offline
Registered Visitor
Joined: Jun 2012
Posts: 630
patient to patient recommended docs: http://www.spondylitis.org/Learn-About-S...ogist-Directory

I don't want to second guess a doc. there may be a good reason for an individual to be on it. In the treatment guidelines for AS, sulfasalazine Is strongly recommended against using in the management of active AS (unless peripheral arthritis or there are contraindications to TNFi). http://www.spondylitis.org/About-Us-Our-...ondyloarthritis

Basic AS infor(including fusing): http://www.spondylitis.org/Learn-About-Spondylitis/Ankylosing-Spondylitis


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Page 1 of 2 1 2

Moderated by  ElinAslanyan, RyanMiyamoto 

Powered by UBB.threads™ PHP Forum Software 7.7.3