Spondylitis Association of America
Posted By: maryshell Consequences of not taking medication - 07/15/16 07:21 PM
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?
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!
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!!
Posted By: Tacitus Re: Consequences of not taking medication - 07/15/16 09:26 PM
Hello, maryshell:

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

Certain medications can do more harm than good.

HEALTH,
John
Posted By: RAHMBA Re: Consequences of not taking medication - 07/15/16 11:19 PM
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
Posted By: maryshell Re: Consequences of not taking medication - 07/16/16 12:12 AM
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).
Posted By: maryshell Re: Consequences of not taking medication - 07/16/16 12:13 AM
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.
Posted By: WhiteCell Re: Consequences of not taking medication - 07/16/16 03:46 PM
I would strongly encourage you to seek a 2nd opinion in a major city and/or major med center.
Posted By: maryshell Re: Consequences of not taking medication - 07/18/16 10:24 PM
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.
Posted By: RAHMBA Re: Consequences of not taking medication - 07/18/16 11:37 PM
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
Posted By: RAHMBA Re: Consequences of not taking medication - 07/18/16 11:42 PM
the link to the treatment guidelines: http://www.rheumatology.org/Portals/0/Fi...Spondylitis.pdf

sulfasalazine is discussed on page 7.
Posted By: WhiteCell Re: Consequences of not taking medication - 07/19/16 03:14 PM
Good question. I found this but cannot vouch for any of them.

https://www.ratemds.com/best-doctors/tx/houston/rheumatologist/

I have been in that position before and here is what I did. 1st I went to the medical center and asked some nurses who the best doctor was. I also looked under best doctors in US News and called the top doc. She was in Maryland and I asked the office for a referral to my area. They were very helpful. You may want to try that. It worked out well for me.

Johns Hopkins is rated #1 in Rheumatology. You could call that department and explain your situation and ask for a referral in Houston. You may be surprised how helpful they are.
Posted By: Banana Re: Consequences of not taking medication - 07/19/16 04:08 PM
I went many years without treatment. My disease would come and go and thus, they thought nothing was wrong. I thought various diets cured me, but it would come back.

By the time the disease was severe I still had to get a doctor and then start treatment. The delay prevents me from having a normal life. Every time it came and went, it chipped away at my ankles, hips and lower back. You can't fix that. Prevention is the key.

Plus, long term inflammation damages your arteries, read the cardiac issues that can start in your 20's/

Good luck seeing a good dd.

Anna
Posted By: drizzit Re: Consequences of not taking medication - 07/19/16 09:22 PM
Tough one. Exercise is most certainly a treatment for AS for some.

The medications we take carry risk but for most of us the reward is well worth the risk. If I felt great with no pain and the MRI showed no fusion and the bloodwork showed no inflammation. I doubt I would take any meds, but that is just me. I would sure keep an eye on it and see a rheumy I trust regularly.

Good luck. Sulfasalazine would not be one I would just take though.
Posted By: Sean O Re: Consequences of not taking medication - 07/20/16 07:00 PM
My experience with this disease was that it can come and go over time. I have had quiet periods and periods where it came back with a vengeance.

In relation to drizzit's advice, sulfasalazine type drugs are (from my limited understanding) sometime used for GI issues so if you are on them for GI issues or other issues you do not want to stop them.

It is a problem when you are still in the phase where you are learning how much to trust your rheumatologist. Some of them keep up with the research and guidelines and some are just not up to snuff.

Exercise really does help if you can manage it and I understand that yoga can be helpful to (anything that maintains strength and range of motion and keeps your body weight in the healthy range is good).

I have had this disease for more than 30 years.
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