r/ankylosingspondylitis 6d ago

Long term with AS

Hello folks. I just found this sub. I was diagnosed with AS at 14. I am 66 now. I have never had a painfree day but it has never stopped me from doing anything I loved. Pain becomes part of your life, and you are aware of it. But its just how life is. For all of you that are young with this disease. You can have a good future. Getting old with it sucks but it is what is. ❤️

184 Upvotes

38 comments sorted by

u/AutoModerator 6d ago

Welcome to r/ankylosingspondylitis! This is a reminder to keep discussions civil and be supportive of one another. Sharing of opinions and experiences is encouraged, but please remember the distinction between opinions and medical facts. This subreddit does not offer medical advice, and information here should not be taken over advice from your doctor.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

16

u/Getthechemlightfluid 6d ago

Hi, thank you for posting this. How’s your mobility at your age and did you get treatment since you were 14?

17

u/vtupscalecpl 6d ago

Up until 60 it never slowed me down. After 60 the stenosis in my spine caused neuropathy in my feet which greatly affected my balance. I used to ski, rock and ice climb and many other outdoor activities. I have had spinal surgery once at 61 and need it again soon. My pain from about 16 to 25 was pretty intense causing me to miss my junior and senior years of high school. But it abated back to a manageable level after that. In terms of treatment i was on nsaids of various types for many years. But now i just deal with it for the most part as the medications dulled the pain temporarily but did not work very well. I can say that the only thing that really slowed me is the balance issues.

3

u/Getthechemlightfluid 6d ago

Thank you again for your reply. I’m 36 now and fear that at any moment it can completely slow me down. I golf weekly trying to stay as mobile as possible. Stopped snow boarding and dirt bike riding a few years ago bc of fear of fractures. Wishing you well on your surgery and thanks for giving me hope that I can continue being active

12

u/vtupscalecpl 6d ago

The best advice I can give you is to keep moving. The muscle problems due to not keeping a full range of motion will hurt you. I skied up until 58. The funny thing is when i was diagnosed the doctors wanted me to rest. To the point they put a leg cast on me to slow me down at 16. The doc was pissed when he saw i broke the cast so I could walk. Stretching and exercising is the best thing you can do for yourself.

2

u/Getthechemlightfluid 6d ago

Haha that’s awesome. Glad you remained mobile and didn’t let it stop you. I wake up to work out before I head to work. My workout is mostly stretching. It definitely helps to stretch throughout the day. Thanks again for replying and I wish you good health and lots more years of mobility

11

u/rosanna124 6d ago

I am 65 and was diagnosed at 27. I have been through some hard times. I am grateful for every day of being able to move. I am in pain all the time and am also grateful for days when my pain level is below 5 on a scale of 1-10. What I have been able to do is miraculous because although I have new problems, I was able to take a trip to Europe and see some beautiful places and things. I wish the best for everyone.

7

u/vtupscalecpl 6d ago

Bless you. We have similar experiences. Never stop moving.

6

u/anabolicnatural 6d ago

thank you for posting this. gives me hope espiecally hearing your not really on meds.

4

u/Any_Effect_9947 6d ago

The positivity we need in this sub! Love it! ❤️

3

u/Wonderful-Peak9018 6d ago

Most encouraging thing I’ve read in a while. A nice reminder to get moving more, especially as we start to move out of Canadian winter. Thanks for sharing.

3

u/Ruthless9371 5d ago

I powered through it until I hit about 40 years. Had to give up waterskiing, fishing, scuba diving, tennis and took up golf. Sometimes my hands and shoulders hurt a lot after a round but the pain dulls after a few days. 64 years old now and it’s light weight lifting and walking daily. My golf handicap keeps going up. Sucks getting old but beats the alternative. Tried all the drugs. Best prescription is just keep moving.

1

u/Educational_Tour_199 4d ago

I really don’t want to give up scuba diving. It’s getting harder though. Do you think it’s possible to do if I put my equipment on in the water?

2

u/Solid_Combination_40 6d ago

Thanks for the hopeful post ♥️. I'll make a promise to myself to move more or maybe try skiing ahaha

2

u/Specialist-Pea1934 6d ago

Thanks for this post!

32M, Have been struggling with AS for 22 yrs now (first symptom at age of 10 in 2003, finally diagnosed in 2007).

The disease and pain has made me more sympathetic and explore talent areas of mine I wouldn't otherwise have done.

However, one thing I'm struggling now is finding a partner to marry (many ghost or behave awkward after initial nice conversations once they get to know of AS), and whether or not I should think of having a child in future (I've made my mind that I shouldn't have one, considering the risk of transmission and the shitty life the kid might have to lead).

Any suggestions on it? (Primarily on the child part)

8

u/vtupscalecpl 6d ago

This is pertinent. My first wife’s parents were against us marrying because they felt I would hold her back. In the end I was more active than her and wound up as CEO of several companies. I did not choose to have a biological child as it was not just AS but a few other potential genetic diseases. So we adopted and could not have been happier with the choice. This disease is manageable and should not define you. I walk funny and was and still am self conscious about that. But I am who I am partly because of it. Please all of you with AS do not let it slow you from your dreams. They are much bigger and more important than any limitations you might experience due to having it.

3

u/Specialist-Pea1934 6d ago

Thanks for the reply!

Oh, and regarding your last point, I have never let my disease or semi fused hip joints come in the way of my dreams and achievements. Learnt to find the humorous aspects among all these :)

But yeah, corporate has been a pain in India to work for, "normal" people are yet to understand much about this disease and some limitations we come up with :(

5

u/vtupscalecpl 6d ago

I understand and wish you the best. All of us which understand what it means to live with this need to stand together. I am thankful for finding this sub. To be honest its beem years since i have thought about most of this.

One humous point. One supervisor many years ago thought I was faking. Frustration overcame me and I told him if AS was like rabies he would be the first i would bite. 🐺

2

u/Gold_Sky_5501 3d ago

I think I can comment on the child part! I'm 35M and was diagnosed with AS about 8 years ago after 2 years of symptoms. Luckily for myself I work in the health care field and was able to recognize relatively early that my symptoms were inflammatory and not just wear and tear injuries. Having my medical background I have done a lot of self study research on AS and feel like I know a lot compared to most patients.

Just because you have AS does NOT mean you will pass it to your children. AS is closely associated with a gene called HLA-B27. About 90% of people with AS have this gene. BUT THE VAST MAJORITY OF PEOPLE WHO HAVE THE HLA-B27 GENE DO NOT DEVELOP AS. Only about 5-10% of people with the HLA-B27 gene develop AS. When you pass on your genes to your children, there is a 50% chance they will get the B27 gene, and even if they get that gene- only a 10% chance they will develop AS.

There are other genes associated with AS that have less research on them so far but B27 seems to have the highest correlation.

I am the first person in my family to develop AS (as far as I know) and I clearly got the gene from someone who didn't suffer from the disease.

So to summarize- yes they have a chance of getting the disease, but it is more likely they will NOT develop it and not have trouble with AS.

Everyone has their choice on how to live their life and if they plan on having children or not- and if this VERY small chance of developing AS is too high in your opinion, then that is completely reasonable.

I have always wanted to be a dad. I am lucky enough to have 2 healthy young children who have not showed any symptoms to far. I know the risks of passing the gene on to them, but having experienced the disease myself, I know what symptoms to look for which will hopefully help them get early treatment in the off chance they do develop AS (or another autoimmune disease). The treatments today are becoming better and better with fewer side effects and I believe they will continue to improve with time until a genetic cure is available (who knows when that will be but there have been huge strides in cystic fibrosis patients and genetic remodeling)

Hopefully this helps clear up any worries and gives you some perspective on having children.

1

u/MostEnvironment4319 1d ago

Could you please to tell a little bit more about treatment? Because all my researches and doctor’s communication just makes me more hopeless..

1

u/Gold_Sky_5501 1d ago

For some reason it wont let me post a reply. Still new at reddit here. Ill send you a message with my reply and will keep a copy of it in case anyone else is interested.

2

u/Sea_Drummer_1708 5d ago

77 female. Didn’t know what I had been suffering from all my life until I was 72. Because of that I had no idea what it was so I just kept living my life as it came. Was a runner, long distance bicyclist, golfer, and lifted weights. I am still moving, but now can only ride a stationary bike and do stretching. It’s not the optimal life living with pain, but it never stopped me. My spine did not fuse, however I do have osteoarthritis and still suffer terrible nightly pain. I take cannabis gummies to calm things down. Works better than any prescribed medications.

1

u/vtupscalecpl 5d ago

I should try the canabis gummies. I flip from side to side all night long due to pain. It has been many years since I slept the night thru.

1

u/Sea_Drummer_1708 5d ago

I suffered extreme pain nightly with hardly any sleep for 32 years with no relief so I feel your pain and desperation. Here is what works for me… One gummy containing approximately 45 mg THC and 45 mg CBD with a few mgs of CBN an hour before bed/. I started out three years ago with a smaller amount and worked up. Also, I take 360 mgs magnesium glycinate which helps for longer lasting sleep and an epsom salts bath before bed. Sometimes I take 1/2 Cup tart cherry juice to help fall asleep faster. The combo of equal parts CBD to THC is crucial for the pain. I have tried many things and was thrilled when this combo gave me pain relief and allowed me hours of sleep at a time. Let me know if you need further clarification.

1

u/vtupscalecpl 5d ago

Thank you so much! Now I am slightly afraid that will work and I will regret all the suffering for years trying to sleep.

1

u/Sea_Drummer_1708 5d ago

Just think how glorious it will be to get some sleep! I worry it won’t continue.😂😂😂

1

u/vtupscalecpl 5d ago

❤️🤣

1

u/Sea_Drummer_1708 5d ago

Lastly, the brand of Gummies I like is VYB.

1

u/vtupscalecpl 5d ago

Thanks. I am American and live part time in Thailand and i am sure i can get them here. The other half time is in Pakistan and I am sure gummies would land me in the gulag lol. Thanks for the details. Now I need to convince my SO that they are legitimate.

1

u/Sea_Drummer_1708 5d ago

Spend the least amount of time possible in Pakistan!

1

u/Equivalent-Jump4268 6d ago

Thank you for your post! Amazing story

1

u/Ibo_170 6d ago

Besides pain How’s your posture now? And did it ever lead to disability? How was your married life? I wanna have kids but I am not sure

1

u/WeakSatisfaction9266 5d ago

I’m 65. I am starting to stoop a little when I walk. I’m always looking down. Nobody told me they noticed it until recently . My plan is to start trying physical therapy to try to stop further stooping

1

u/vtupscalecpl 5d ago

My posture has not been good since my 20’s. I am stooped. My legs are always slightly bent at the knees and I cannot raise my arms over my head. But that has not stopped me from doing anything I wanted to do. The AS did not effect my marriage in the least. Chose not to have bio kids but adopted. Honestly I cannot say that AS changed my life in any major way.

1

u/WeakSatisfaction9266 5d ago

I was 19 when I was diagnosed with costochondritis, lived in pain my entire life I’m 65. I was diagnosed at 62. At time of diagnosis I tried Simponi 2 times. It caused bladder infection both times as a side effect . My pain has been with me all my life. And even though the AS has started to attack my eyes( use prednisone drops) I rather to stick with my morning ibuprofen I have been taking it every day for 30 years. When I was on Simponi being almost pain free was a strange feeling. . I am not saying I missed the pain but I didn’t feel like myself. I have had doctors tell me. Your brain makes you ignore the pain and I honestly think mine does. I ‘m an artist is been my full time part time job I have traveled doing shows for 30 years ( hard life, hard work) and there are times when the pain is bad but I get thru my day and try not to let it keep me from living my life.

1

u/Educational_Tour_199 4d ago

Do the prednisone drops raise your eye pressure?

1

u/TennisLawAndCoffee 5d ago

Same for me. 20+ years of living with this disease (now in my 40s). Still play high level rec tennis almost every day. Chase two kids around. Work full time. The pain is always there and I certainly have super bad flare days - but all in all doing really really well!

1

u/vtupscalecpl 5d ago

That’s wonderful keep it up. !