- Ankylosing spondylitis Forum
- Living with ankylosing spondylitis
- Are you satisfied with the care you've received for AS?
Patients Ankylosing spondylitis
Are you satisfied with the care you've received for AS?
- 69 views
- 0 support
- 4 comments
Hi @Avro560, thank you for sharing with us. That's great that you've done so much research that that you've been advocating for yourself! It must be frustrating to feel like your doctor isn't really listening to you.
For our other members, what do you think of the treatment you've received for your AS? Did it take a long time to get your diagnosis? Do you feel like your doctors listen to your questions and concerns? Did you have any say in the choice of treatment?
@Cwaters @Badbones @js05763 @Cdionne1089 @spond568 @Kerryross @Kanna3 @w2007sara @JayLynn @Tinamaria @jrobinjrob @Andreeag @stain2319 @Gbeltz @zmgwedli @brownie17 @EmilyJP @Kmartin143 @pnj0113
See the signature
Courtney_J, Community Manager, Carenity US
I am on gabapentin for my neuropathy and I don't know anything about il-17 or il-10. But I will adress the issues about Drs. not listening to me with my issues,
I have gone 50 yrs without a diagnosis. I was told I had bad back and they put me in traction at the hospital , I "threw" my back out off and on several times yet none of my doctors recognized my A.S. symptoms. I had a hip replacement because of my pain. Finally a new orthopedic told me I had A.S. based on my xrays. By then my back and neck were totally fused together. He didn't say anything else about where to go, what to do, etc. I then found it difficult to find a rheumatologist. (We live in a large city) I had to wait a couple of months to see one at a large and wonderful teaching hospital. All the Dr. wanted to do was to take a lot of xrays on both of my appointmants. But there wasn't any suggesttions of what to do.. So after another 2 years I found another rheumatologist. Again with lots of xrays and after three visits, he said to try Humira. We had to get financial help as this is $1000 a month! I have been on it over a year with no relief. He then wanted to try Enbril(?) My insurance said I had to pay $500 a month for that which we couldn't do. (My wife and I are retired now) So I am now w/out any medicine for my pain. I might try another rhuematologist in a year.
My back is so bad now I can not get on a table for pain shots, On my own I bought a rollator and a lift chair. I have a bar on the side of the bed to help me get up. My wife has to help me get dressed esp. with my shoes and socks. We moved from our house to an apt. that has a walk-in shower and all maintence covered as I can't do anything physical around the house. I can't even take care of my bowel cleanups since I can't twist my back to wipe. I can not get up from any chair that doesn't have arms and it is still difficult even with the arms. Because of this, we have quit going to friends' homes and go out only to pick up meds and food which my wife goes into the store. We can't use the drive thrues because I can't turn my head.
I have great difficulty in getting in and out of cars, So we had to buy a used car that I could get into and have a place for 2 rollators. I used to use my rollator when I went out but now I use it around the apt. as well. I can no longer take out the garbage or get mail so my wife has to so this as well using her rollator.
So basically I am without any help from any Drs., I have had to pay for all of my equipment. They haven't help me with my pain and have basically ran out of ideas to help.
My doctor only did blood tests for the last 3-4 years since diagnosed and finally got a CT scan on the last appointment and I kept trying to tell him that the pain was getting worse and now my back/spine is much worse than before and still I don't have any Biologic only Inocin 75mg 2 times daily a long with Tylenol 500mg. I'm starting to think that my doctor doesn't know what to do or something.
See the signature
You need to go to a rhuematologist altho I have been to 2 of them who didn't help me. However, I am in the last stages so they said the damage is already done. However it hasn't affected my ribs yet so I think I should have something to help slow that progression down. It takes a while to get into that type of DR. Sadly, you may have to go to several before you find someone who knows what he/she is doing. You could contact the AS association for info or go a pain clinic since you have had the CT done. Get a copy of the scan to take with you. May have to go to the emergency room to help you with the pain and get a referral to a local rheumatologist. Keep in touch and let us know how you are doing. :)
Give your opinion
Members are also commenting on...
Living with ankylosing spondylitis
Ankylosing spondylitis and sleep problems: Have you experienced this?
Articles to discover...
12/19/2022 | Advice
09/04/2022 | News
How does ankylosing spondylitis affect your relationships with others?
10/16/2018 | Testimonial
Ankylosing Spondylitis: More Than Fifteen Years of Pain to Finally Live a Better Life
06/15/2020 | Testimonial
Testimonial: "More than two months later, I'm still not completely recovered!"
07/16/2021 | Advice
02/10/2022 | Advice
Ankylosing spondylitis: What are flare-ups and how to manage them?
You wish to be notified of new comments
You have been subscribed
Has anybody looked into interleukin cytokines in the human imune system?
I am not a doctor, but I am an engineer, specialising in electronics, computers and software. After researching the imune system, I found that the similarities are incredible. I have started to approach my condition of A.S. from an engineering perspective. Everyone with A.S. will be familiar with il-17. This is the interleukin (that is what I.L. stands for) that is the marker used for A.S. although not everyone with high il-17 has A.S. But after researching the interactions with other parts of the immune system is no less than amazing. In my own case, I also suffer with seizures. These started shortly after I started taking cosentyx, which of course down regulates il-17. Unfortunately for me, downregulaing il-17 also down regulates il-10. But il-10 is an anti inflammatory interleukin that is required to prevent inflammation of the blood brain barrier. In turn, this prevents what are known as T-helper cells from crossing the blood brain barrier and attacking neurons of the brain. The particular T.H. cell is t.h-17. This is a killer cell that is required for other parts of the immune system. So you just can't get rid of it. However, il-10 can be raised to basically prevent the th-17 cells from crossing the blood brain barrier. Thus preventing the seizures. I have tried explaining this to the doctor I was under for A.S. but she wouldn't listen and took no notice of me.
I think the medical profession (especially in the U.K.) needs to take more notice of what their patients tell them. Instead they just go off a scripted set of questions such as the bandai scores, and think that this will tell them everything they need to know.
Is it just me, or have I just been unlucky with the doctors that have dealt with my case. I would be interested if anyone else has had the same so called treatment as I have.
In the meantime, I found another doctor that I managed to get to prescribe me gabapentin, which up regulates il-10, to at least reduce the seizures considerably.
I just wish that someone would listen, instead of doctors thinking that they know everything and nobody else knows anything medical, unless they are also a doctor.
Another finding quite recently is that by up regulating il-13, down regulates il-17 in a il-10 dependent manner. Does anyone know of a particular drug (or natural foodstuff) that would do this?
Please let me know.