Ankylosing Spondylitis + Osteoporosis

Posted by tspoon3 @tspoon3, Sun, Jun 23 4:45pm

Hi, a friend recommended this discussion group to me but I did not see people with Ankylosing Spondylitis listed separately. I would love to discuss this condition with others who may be experiencing the same things. I also have Osteoporosis together with the AS. I am working very hard to address both conditions through food, infection identification, gut, homones, toxins and stress management (exercise and meditation). Yikes, it can be overwhelming! Does this sound like anybody else???

Hello @tspoon3, Welcome to Connect. I'm tagging our director @colleenyoung to see if we should move your post to the following discussion where it will have greater visibility and you can meet other members that share your symptoms.

> Groups > Spine Health > ankylosing spondylitis
https://connect.mayoclinic.org/discussion/ankylosing-spondylitis/

It sounds like you are doing an excellent job advocating for your health and learning as much as you can to find out what helps. I'm sure it can be overwhelming trying to figure out what will help. Are you able to share any steps you've taken so far with nutrition and stress management?

I did find an article that may be provide some helpful information.

Osteoporosis Management in Ankylosing Spondylitis
https://link.springer.com/article/10.1007/s40674-016-0055-6

REPLY

Thank you for your quick response! I started off almost 20 years ago with the Osteoporosis diagnosis and took Fosomax for 7 years. After this time my bone density scores have slowly gotten worse. My last test was hip -2.5 and spine -3.1. I am a small (5'2" and 108 lbs), white, 63 year old woman. My mother also had Osteoporosis. I have had no fractures at this point. I started extreme autoimmune symptoms in 2014. My inflammation numbers were very high and I could hardly move including breathing. So, it has been a long road! I have eliminated gluten and most dairy and sugar. Of course no processed food. I also try to eat "cleanly". I take supplements such as tumeric, fish oil, D3 with K2, Vit C, Zinc, Magnesium and Biost. Currently I am taking 150 mg of Cosentyx for Ankylosing Spondylitis. Before taking Cosentyx I tried all the other drugs but nothing worked or I was allergic to it. For stress management I journal each morning, walk in nature, dance and enjoy friends and family. I also try to meditate and use a sauna whenever possible. For the Osteoporosis I attend a weight lifting class 3 times per week and use bone broth when possible. I am open to suggestions. I really don't want to take medication for Osteoporosis but my doctors are recommending it strongly. So far I have held off but I am wondering if that is the smartest thing to do??? I appreciate any feedback.

REPLY
@tspoon3

Thank you for your quick response! I started off almost 20 years ago with the Osteoporosis diagnosis and took Fosomax for 7 years. After this time my bone density scores have slowly gotten worse. My last test was hip -2.5 and spine -3.1. I am a small (5'2" and 108 lbs), white, 63 year old woman. My mother also had Osteoporosis. I have had no fractures at this point. I started extreme autoimmune symptoms in 2014. My inflammation numbers were very high and I could hardly move including breathing. So, it has been a long road! I have eliminated gluten and most dairy and sugar. Of course no processed food. I also try to eat "cleanly". I take supplements such as tumeric, fish oil, D3 with K2, Vit C, Zinc, Magnesium and Biost. Currently I am taking 150 mg of Cosentyx for Ankylosing Spondylitis. Before taking Cosentyx I tried all the other drugs but nothing worked or I was allergic to it. For stress management I journal each morning, walk in nature, dance and enjoy friends and family. I also try to meditate and use a sauna whenever possible. For the Osteoporosis I attend a weight lifting class 3 times per week and use bone broth when possible. I am open to suggestions. I really don't want to take medication for Osteoporosis but my doctors are recommending it strongly. So far I have held off but I am wondering if that is the smartest thing to do??? I appreciate any feedback.

Jump to this post

@tspoon3 I have osteopenia and can relate to not wanting to take any more medications if there is a natural way to help. I have no medical training or background but I feel the same as you do about not wanting any medications unless it's absolutely necessary. Here is another page that offers some information and includes some of the things you are already doing.

Naturopathic Approaches to Preventing and Treating Osteoporosis
https://www.naturalmedicinejournal.com/journal/2010-11/naturopathic-approaches-preventing-and-treating-osteoporosis

Have you had a discussion with your doctor on weighing the risks of not taking medications? Here's some more information that may help you weigh the risks.

Shunning osteoporosis treatment isn’t a wise decision for most women
https://www.health.harvard.edu/womens-health/shunning-osteoporosis-treatment-isnt-a-wise-decision-for-most-women

Mayo Clinic Medical Science Blog — Finding what works best to stop osteoporosis in its tracks
https://advancingthescience.mayo.edu/2019/06/17/finding-what-works-best-to-stop-osteoporosis-in-its-tracks/

REPLY

Hi tspoon3! You don't say how old you are, and this would help me better understand where you might be in your AS progress. I am 72 and I too have AS and have had symptoms going back into my 30s. I was misdiagnosed until the last 5-6 years, so my disease is fairly advanced. (They were treating me for DISH). I now have an amazing rheumatologist who has managed to get things well under control. I am assuming you have had a positive HLA b27 test to further confirm your diagnosis? If you do not currently have a really good rheumatologist who is well acquainted with AS, I would encourage you to find one as soon as possible. (By the way,) I also have fibromyalgia likely secondary to the AS. At any rate, I have learned that it is important to catch this disease as early as possible to help arrest it and keep it from worsening. You are doing all you can through supplements and diets to control your inflammation and not aggravate your AS, but the underlying disease is still present and needs to be addressed separately. It is also advisable to acquire a really good Pain Management Specialist to help you manage this portion of the disease until your AS is under control.

Once I was firmly diagnosed by an excellent rheumatologist, I was started on Humira, which helped but did not completely manage my disease. I am currently on Remicade infusions every 6 weeks, which has essentially arrested the progression of the AS, as well as Lyrica for the fibro. I also have medication from my Pain Management specialist for my lower back fusion pain due to the cascading bone associated with the AS, my neck pain secondary to multiple anterior osteophytes present in my neck, and to manage flares. I am very fortunate not to have osteoporosis and am sorry to hear you are needing to manage that as well.. Should I have a flare with my joints swelling and the resulting extreme mobility issues, I have been put on short-term, very low-dose prednisone to decrease the inflammation and get me mobile again. When I am not in flare, I am essentially pain-free on this regimen and have reduced my pain management medication significantly. Will be glad to try to help with anything else if I can. Hang in there tspoon3!

REPLY

You are so kind…. thank you.
I am now 63 yrs. old
I also tried a bunch of medications, one of them Remicade infusion 1X/month for 9 months, but they did not work. Finally I tried Cosentyx and it has been working for 2 years so far. I understand about needing prednisone but I try very hard to stay away since it is hard on the bone density. At this point I sparingly use Meloicam for pain. I am trying to wean off Cosentyx with the help of my rheumatologist but she is not hopeful that I will be able to beat this thing! I am glad to hear that you are pain-free sometimes or most of the time. What causes your flare ups? Do you know? I am investigating alternative treatments. I have tried so many things including but not limited to accupunture, chiropratic, removal of mercury fillings, sauna, consistent exercise, epson salt soaks etc. If course figuring out food is a big one.
I wish the best for your journey, Thanks for responding with such support!

REPLY

Hello. I was diagnosed with A.S back in 2010 and continue to learn about this illness as my symptoms progress. Lately I've been experiencing loss of feeling in my legs, extreme fatigue, pain and swelling in my joints and spine, and overall weakness. I've ran a low grade fever, and upset stomach. I've been miserable. Of course it is the change of seasons too where I am at. This always kicks me into a flare up.

REPLY
@tspoon3

Thank you for your quick response! I started off almost 20 years ago with the Osteoporosis diagnosis and took Fosomax for 7 years. After this time my bone density scores have slowly gotten worse. My last test was hip -2.5 and spine -3.1. I am a small (5'2" and 108 lbs), white, 63 year old woman. My mother also had Osteoporosis. I have had no fractures at this point. I started extreme autoimmune symptoms in 2014. My inflammation numbers were very high and I could hardly move including breathing. So, it has been a long road! I have eliminated gluten and most dairy and sugar. Of course no processed food. I also try to eat "cleanly". I take supplements such as tumeric, fish oil, D3 with K2, Vit C, Zinc, Magnesium and Biost. Currently I am taking 150 mg of Cosentyx for Ankylosing Spondylitis. Before taking Cosentyx I tried all the other drugs but nothing worked or I was allergic to it. For stress management I journal each morning, walk in nature, dance and enjoy friends and family. I also try to meditate and use a sauna whenever possible. For the Osteoporosis I attend a weight lifting class 3 times per week and use bone broth when possible. I am open to suggestions. I really don't want to take medication for Osteoporosis but my doctors are recommending it strongly. So far I have held off but I am wondering if that is the smartest thing to do??? I appreciate any feedback.

Jump to this post

Hello. Have you found the Cosentyx to work well for your pain and inflammation?

REPLY
@alrod

Hi tspoon3! You don't say how old you are, and this would help me better understand where you might be in your AS progress. I am 72 and I too have AS and have had symptoms going back into my 30s. I was misdiagnosed until the last 5-6 years, so my disease is fairly advanced. (They were treating me for DISH). I now have an amazing rheumatologist who has managed to get things well under control. I am assuming you have had a positive HLA b27 test to further confirm your diagnosis? If you do not currently have a really good rheumatologist who is well acquainted with AS, I would encourage you to find one as soon as possible. (By the way,) I also have fibromyalgia likely secondary to the AS. At any rate, I have learned that it is important to catch this disease as early as possible to help arrest it and keep it from worsening. You are doing all you can through supplements and diets to control your inflammation and not aggravate your AS, but the underlying disease is still present and needs to be addressed separately. It is also advisable to acquire a really good Pain Management Specialist to help you manage this portion of the disease until your AS is under control.

Once I was firmly diagnosed by an excellent rheumatologist, I was started on Humira, which helped but did not completely manage my disease. I am currently on Remicade infusions every 6 weeks, which has essentially arrested the progression of the AS, as well as Lyrica for the fibro. I also have medication from my Pain Management specialist for my lower back fusion pain due to the cascading bone associated with the AS, my neck pain secondary to multiple anterior osteophytes present in my neck, and to manage flares. I am very fortunate not to have osteoporosis and am sorry to hear you are needing to manage that as well.. Should I have a flare with my joints swelling and the resulting extreme mobility issues, I have been put on short-term, very low-dose prednisone to decrease the inflammation and get me mobile again. When I am not in flare, I am essentially pain-free on this regimen and have reduced my pain management medication significantly. Will be glad to try to help with anything else if I can. Hang in there tspoon3!

Jump to this post

Hello. I have found that the prednisone works wonders for me and I wish I could stay on it. My doctor says it is only used for flare ups, otherwise too much can be harmful. It is about the only thing that truly works for me.

REPLY

I have been on one of these discussion pages re chronic pain/Fibromyalgia before but reading between the lines when having a discussion with the Dr at the pain clinic who hasn't come out and actually given me a diagnosis I think I might have ankylosing Spondylitis. I am female will be 66 in Nov (2019). I started with pain on May 10th 1985 so 29yrs old this was just hrs after giving birth to my 4th and final baby I have had pain issues ever since. I know for sure I have OA having already had joint replacement surgery to both thumbs,the 2nd and my dominant one didn't go so well. I have such bd pain when sitting for any length of time in my spine ,ribs and muscles around my torso also. My whole thoracic spine hurts even between my scapula if I put my shoulders back. My hips, my knees,my feet/toes are all affected but it's my spine I am worried about.I have to fly home to UK from Canada at Christmas and I just don't know how I am going to able to sit still for 10hrs. I have shots into the facet joints that work amazing for about 2 weeks but can only have those twice a yr. I am due to have Cervical spine MRI in Nov due to chronic pain and worse ROM.I think I need to ask for a thoracic one too but feel like a neurotic old woman and dare not ask. I also have had the nerves in my lower spine burnt which does help the pain down my legs but not so much the low back pain. so when I sit I am in constant pain from shoulder blades to hips and if I stand or walk for any lenght of time my lumbat area is affected,I'm damned if I do and damned if I don't. If I had an MRI or the blood test for inflammation and it showed I have AS could I get refered to a rhuematologist ?

REPLY

Hi @anniebrook you may have noticed I moved your post to this existing discussion on Ankylosing Spondylitis and osteoporosis so that you can connect with others you may have similar experiences. Simply click VIEW & REPLY in your email notification to get to your post.

That must be so frustrating to have pain for so long and being unable to find any answers.

I'd like to introduce you to fellow Connect members @brie @alrod and @tspoon3 as they may be able to offer you support and help answer questions.

Back to you @anniebrook, are you currently on any medication or treatment plans for your pain?

REPLY
@anniebrook

I have been on one of these discussion pages re chronic pain/Fibromyalgia before but reading between the lines when having a discussion with the Dr at the pain clinic who hasn't come out and actually given me a diagnosis I think I might have ankylosing Spondylitis. I am female will be 66 in Nov (2019). I started with pain on May 10th 1985 so 29yrs old this was just hrs after giving birth to my 4th and final baby I have had pain issues ever since. I know for sure I have OA having already had joint replacement surgery to both thumbs,the 2nd and my dominant one didn't go so well. I have such bd pain when sitting for any length of time in my spine ,ribs and muscles around my torso also. My whole thoracic spine hurts even between my scapula if I put my shoulders back. My hips, my knees,my feet/toes are all affected but it's my spine I am worried about.I have to fly home to UK from Canada at Christmas and I just don't know how I am going to able to sit still for 10hrs. I have shots into the facet joints that work amazing for about 2 weeks but can only have those twice a yr. I am due to have Cervical spine MRI in Nov due to chronic pain and worse ROM.I think I need to ask for a thoracic one too but feel like a neurotic old woman and dare not ask. I also have had the nerves in my lower spine burnt which does help the pain down my legs but not so much the low back pain. so when I sit I am in constant pain from shoulder blades to hips and if I stand or walk for any lenght of time my lumbat area is affected,I'm damned if I do and damned if I don't. If I had an MRI or the blood test for inflammation and it showed I have AS could I get refered to a rhuematologist ?

Jump to this post

@anniebrook You sound like me . I hurt from shoulders to low back also my legs are weak. I think I have A.S. although the Dr. has given me very little information. I do think I'm changing Dr.s as there is no rheumatologist in there plan but love my pain Dr. so am going to have to investigate to see what I can find. Wishing you well Let me know what you find out . We all care her .

REPLY
@anniebrook

I have been on one of these discussion pages re chronic pain/Fibromyalgia before but reading between the lines when having a discussion with the Dr at the pain clinic who hasn't come out and actually given me a diagnosis I think I might have ankylosing Spondylitis. I am female will be 66 in Nov (2019). I started with pain on May 10th 1985 so 29yrs old this was just hrs after giving birth to my 4th and final baby I have had pain issues ever since. I know for sure I have OA having already had joint replacement surgery to both thumbs,the 2nd and my dominant one didn't go so well. I have such bd pain when sitting for any length of time in my spine ,ribs and muscles around my torso also. My whole thoracic spine hurts even between my scapula if I put my shoulders back. My hips, my knees,my feet/toes are all affected but it's my spine I am worried about.I have to fly home to UK from Canada at Christmas and I just don't know how I am going to able to sit still for 10hrs. I have shots into the facet joints that work amazing for about 2 weeks but can only have those twice a yr. I am due to have Cervical spine MRI in Nov due to chronic pain and worse ROM.I think I need to ask for a thoracic one too but feel like a neurotic old woman and dare not ask. I also have had the nerves in my lower spine burnt which does help the pain down my legs but not so much the low back pain. so when I sit I am in constant pain from shoulder blades to hips and if I stand or walk for any lenght of time my lumbat area is affected,I'm damned if I do and damned if I don't. If I had an MRI or the blood test for inflammation and it showed I have AS could I get refered to a rhuematologist ?

Jump to this post

Hi anniebrook! Sounds like you have been on a very long road and are getting weary. AS is a systemic autoimmune disease, and it sounds like it has not been addressed as such. In other words, if you have AS, it can get very frustrating treating the individual symptoms and neglecting the actual systemic cause of most of your pain. I definitely would suggest a rheumatologist. He/she can truly evaluate you and make a definitive diagnosis. After that, there are a number of ways AS can be addressed and finding the best one for you should help alleviate your overall pain and discomfort issues. I am being treated by both a rheumatologist and a pain management specialist. Without treatment, I am unable to stand erect, must walk with a cane, and must endure constant debilitating pain. My regimen includes a Remicade infusion every 6 weeks, Lyrica b.i.d. to address the fibro issues as well as the AS, occasional very low dose (under 5 mg) prednisone for flares (all from my rheumatologist), morphine sulfate ER 15 mg b.i.d. ( a very low dose, I am told) and multiple breakthrough meds as needed. With this regimen, I do extremely well and can do most anything I want. I would encourage you to find a rheumatologist who has a strong AS treatment background as well as a pain management specialist who also understands AS well. With the right regimen from these docs, you truly can find a much more comfortable and manageable life. Good luck and please let us know how you are progressing. Blessings! alrod

REPLY
@anniebrook

I have been on one of these discussion pages re chronic pain/Fibromyalgia before but reading between the lines when having a discussion with the Dr at the pain clinic who hasn't come out and actually given me a diagnosis I think I might have ankylosing Spondylitis. I am female will be 66 in Nov (2019). I started with pain on May 10th 1985 so 29yrs old this was just hrs after giving birth to my 4th and final baby I have had pain issues ever since. I know for sure I have OA having already had joint replacement surgery to both thumbs,the 2nd and my dominant one didn't go so well. I have such bd pain when sitting for any length of time in my spine ,ribs and muscles around my torso also. My whole thoracic spine hurts even between my scapula if I put my shoulders back. My hips, my knees,my feet/toes are all affected but it's my spine I am worried about.I have to fly home to UK from Canada at Christmas and I just don't know how I am going to able to sit still for 10hrs. I have shots into the facet joints that work amazing for about 2 weeks but can only have those twice a yr. I am due to have Cervical spine MRI in Nov due to chronic pain and worse ROM.I think I need to ask for a thoracic one too but feel like a neurotic old woman and dare not ask. I also have had the nerves in my lower spine burnt which does help the pain down my legs but not so much the low back pain. so when I sit I am in constant pain from shoulder blades to hips and if I stand or walk for any lenght of time my lumbat area is affected,I'm damned if I do and damned if I don't. If I had an MRI or the blood test for inflammation and it showed I have AS could I get refered to a rhuematologist ?

Jump to this post

@anniebrook Sounds like you’ve been on a long, rough road. You mentioned a pain doctor, but what other doctors are you seeing? Have you mentioned the problems with taking a long flight to your primary doctor? What does he/she say about managing the pain?

REPLY
@anniebrook

I have been on one of these discussion pages re chronic pain/Fibromyalgia before but reading between the lines when having a discussion with the Dr at the pain clinic who hasn't come out and actually given me a diagnosis I think I might have ankylosing Spondylitis. I am female will be 66 in Nov (2019). I started with pain on May 10th 1985 so 29yrs old this was just hrs after giving birth to my 4th and final baby I have had pain issues ever since. I know for sure I have OA having already had joint replacement surgery to both thumbs,the 2nd and my dominant one didn't go so well. I have such bd pain when sitting for any length of time in my spine ,ribs and muscles around my torso also. My whole thoracic spine hurts even between my scapula if I put my shoulders back. My hips, my knees,my feet/toes are all affected but it's my spine I am worried about.I have to fly home to UK from Canada at Christmas and I just don't know how I am going to able to sit still for 10hrs. I have shots into the facet joints that work amazing for about 2 weeks but can only have those twice a yr. I am due to have Cervical spine MRI in Nov due to chronic pain and worse ROM.I think I need to ask for a thoracic one too but feel like a neurotic old woman and dare not ask. I also have had the nerves in my lower spine burnt which does help the pain down my legs but not so much the low back pain. so when I sit I am in constant pain from shoulder blades to hips and if I stand or walk for any lenght of time my lumbat area is affected,I'm damned if I do and damned if I don't. If I had an MRI or the blood test for inflammation and it showed I have AS could I get refered to a rhuematologist ?

Jump to this post

Can she go see a Neurologist that sounds more like Sciatica or Nerve pain. I got My husband into seeing a Neurologist & they gave him generic Lyrica/pregablin for the nerve pain feet back legs etc. Maybe try a Neurologist 1st.

REPLY
Please login or register to post a reply.