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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Numbness and tingling in one foot KatherineL16 11/20/19 05:27 AM
Thanks, Winston. I'll ask my rheumy to run a B12 test. I'll also be seeing a neuro and will post an update here with any results in case they can be of use to anyone else.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Enthesitis and COSENTYX Ucla08 11/20/19 02:03 AM
SSZ can be helpful for peripheral symptoms and even sometimes for axial symptoms but like any of the meds, it's very hit or miss and works for some, does nothing for others. The quality of most of the published research on SSZ is quite low so it's hard to draw any conclusions from the research. At the end of the day, it's a fairly safe and very cheap med so it's worth talking to your doc about trying it.

I have a great response to it but it gives me itchy skin so rheum has recommended starting Cosentyx. I was doing some reading on it and thought that I read somewhere they were seeking approval for something more related to peripheral symptoms but can't seem to find it now. It seems like for all of these, unfortunately, you kind of have to try it and just see how it works in your body : /
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Mattress suggestions? Mary Beth 11/20/19 12:52 AM
I have a hybrid mattress, a mix of memory foam layers over springs.

I highly recommend going to a place that can put you on one of those test mattresses that measures your pressure points and tells you if you should have a firm or softer mattress. I always assumed firm was better, but I'm a side sleeper so firm put too much pressure on the point of my hip (and in fact I was getting sore hips on my old mattress).

We love our new mattress. It is Sealy Copper II Plush
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Mattress suggestions? SouthernMoss 11/19/19 08:43 PM
I have a Tempurpedic and love it. Mine is an older model before they came out with the cooling layers, so it stays warmer than some of the new models. I actually like the warmth because it relaxes my back.

The search feature of our forum only searches 3 years at a time, so if you want to find posts older than 3 years, you have to change the date range to different 3 year blocks. Here are some threads from older years that may be helpful:
https://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=272710
https://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=268648
https://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=244726
https://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=235778
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Mattress suggestions? Imnotsure 11/19/19 12:34 PM
whichever company that you decide to buy from make sure that you are allowed to have at least two minimum or three exchanges.

It took me a few mattresses to find exactly what is best for my back. The combination for me was a firm mattress with a very thin pillow top. Too thick it was uncomfortable for my back to thin it was too firm so it's just like Goldilocks and the three Bears.

Casper beds or those memory foam beds destroy me. I think I lost it two nights and I had to send it back.

Buying a bed in the store it's so difficult to know which bed you need because it feels great but it takes a night to know if it's right for you or not. I'm sorry but there's no good answer to this other than mentioning I had a very very bad experience using the memory foam beds.

Another thing is do not use a bed frame. I would put your bed on the floor with your box spring that way you have full support for your back. I bet on a steel frame even with a box spring can cause dipping around your back as the frame will Flex. If it's too low to the floor build a frame out of wood using two by tens and space the joists 12in apart. For a bedskirt on it and you're good to go.

If you can afford a zero gravity bed by all means do that. For those if you are on disability I believe the government depending on which country you are from will pay for it.

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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Mattress suggestions? jdkpa 11/19/19 12:38 AM
Hello - I did a forum search before posting. I didn't see many hits so I hope you don't mind if this topic is addressed again.

Anyone with Ankylosing spondylitis find a mattress they recommend?

The mrs and I were on an expensive Sleep Number until that failed, and now onto a Pillow Top from Sealy "Victorious." This
mattress is less than one year old and hurting us. (One of us suffers from AS)

Thank you!!!
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Numbness and tingling in one foot Winston 11/16/19 03:28 PM
I had a similar thing happen in one hand and arm, but I'm on Enbrel, not Humira. My rheumy sent me to a neurologist, who ordered an MRI of my brain and nerve conduction testing on both arms. At the end of the day, it was determined to be unrelated to Enbrel. Best we can tell, it was the result of a mild B12 deficiency plus a pinched nerve in my elbow, which may or may not be related to AS inflammation. I started getting B12 shots, and the problem has almost resolved. (It takes a very long time for nerves to heal.) Two years on, I'm still seeing the neurologist regularly to keep an eye on the situation. Make sure they test your B12. It's very common for people with AS and related diseases to develop a deficiency. Pretty standard for neurologists to check that first these days.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Numbness and tingling in one foot KatherineL16 11/16/19 12:10 AM
I started having numbness and tingling plus a feeling of cold in just one foot. It’s the first time I have experienced this. It’s been going on about a week and has gotten more intense. I will be checking in with my rheumy and a neurosurgeon soon, but I wanted to collect some info here before my appointments. Has anyone had a similar issue due to AS or from taking Humira? If so, was it a type of demylenating neuropathy or something else? What treatments helped (stopping Humira, etc)? How long did it take to go away?
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Saturday’s online presentation SouthernMoss 11/15/19 08:46 PM
It's the SAA educational seminar that was held in Atlanta on Nov 9. it was broadcast live online.

iache, they usually post videos a couple of weeks after an event. If you registered, you should get an email once the videos are posted. Otherwise, just check the education page of spondylitis.org periodically.

For those who may not know, there are a lot of very informative educational videos on the SAA website.Once on the site, go to "About Spondylitis", then "Educational Materials and Resources". They also have videos on their YouTube channel (SPONDYLITISdotORG).
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Potential "Patch" for AS Caturday 11/15/19 05:50 PM
Originally Posted by PainintheAS
That's exactly correct and coupled with the fact that I mentioned that these trials indicated they "don't know what to screen for" in PsA/RA patients, this also a large risk to be taking. We are immuno-aberrant individuals. This is not simply combatting a C.diff infection (where most FMT's have been used.) As such, the reactions are likely to be much stronger than those who are simply in a state of acute infection. You mention you want to know how to reduce gut permeability and inflammation. There are MANY other suggestions here that carry far less risk by orders of magnitude that you SHOULD try before you start trying to inject an enormous volume of biological agents into your body. The list of items I've used to drastically reduce my intestinal issues has been mentioned before and they have worked for me by staying consistent. They consist of curcumin/turmeric, berberine, and skullcap (baicalein contained within.) Obviously Rifaximin isn't available to everyone, but it has worked well for me. Sulfasalazine is also an anti-inflammatory that seems to work for many, however, I stay away from it because I try to incorporate natural botanicals whenever possible.

Separately, I am not sure how helpful the infant FMT's will be. An infant's gastrointestinal tract is constantly undergoing RAPID change. One week to another the changes that are taking place are due to the fact that the immune system is currently "learning" how to defend itself from the assaults (bacteria delivered through the mouth by the mother's vaginal fluids, or by skin bacteria in the case of C-section babies, or foods/items being placed in the mouth) You would likely find more consistency in finding a healthy female and sampling the vaginal fluids as that should be relatively consistent in comparison to a baby's hyper-flux.

I would, as a risk-averse approach, try ALL these other naturals before trying an FMT.

Here is a paper stating exactly what I am stating; people with immune-based diseases that have a bacterial element respond far more variably than the successful FMT's for those with C.diff infections.

Link


Yeah, it's always a big risk. I hope they can figure this stuff out in the near future. Look into r/humanmicrobiome this whole sub reddit is focused driven on gut health news, scientific research, and FMTs I think you'll find some interesting information on there.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Saturday’s online presentation Caturday 11/15/19 05:48 PM
What presentation are you referring to?
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Saturday’s online presentation iache 11/15/19 01:10 AM
Is there anyway to access it since I missed it?
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Potential "Patch" for AS PainintheAS 11/14/19 11:29 PM
That's exactly correct and coupled with the fact that I mentioned that these trials indicated they "don't know what to screen for" in PsA/RA patients, this also a large risk to be taking. We are immuno-aberrant individuals. This is not simply combatting a C.diff infection (where most FMT's have been used.) As such, the reactions are likely to be much stronger than those who are simply in a state of acute infection. You mention you want to know how to reduce gut permeability and inflammation. There are MANY other suggestions here that carry far less risk by orders of magnitude that you SHOULD try before you start trying to inject an enormous volume of biological agents into your body. The list of items I've used to drastically reduce my intestinal issues has been mentioned before and they have worked for me by staying consistent. They consist of curcumin/turmeric, berberine, and skullcap (baicalein contained within.) Obviously Rifaximin isn't available to everyone, but it has worked well for me. Sulfasalazine is also an anti-inflammatory that seems to work for many, however, I stay away from it because I try to incorporate natural botanicals whenever possible.

Separately, I am not sure how helpful the infant FMT's will be. An infant's gastrointestinal tract is constantly undergoing RAPID change. One week to another the changes that are taking place are due to the fact that the immune system is currently "learning" how to defend itself from the assaults (bacteria delivered through the mouth by the mother's vaginal fluids, or by skin bacteria in the case of C-section babies, or foods/items being placed in the mouth) You would likely find more consistency in finding a healthy female and sampling the vaginal fluids as that should be relatively consistent in comparison to a baby's hyper-flux.

I would, as a risk-averse approach, try ALL these other naturals before trying an FMT.

Here is a paper stating exactly what I am stating; people with immune-based diseases that have a bacterial element respond far more variably than the successful FMT's for those with C.diff infections.

Link
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Potential "Patch" for AS Caturday 11/14/19 08:05 PM
I am already aware of those trails... but trails specifically using baby fmts I am not aware of any such study at this moment. And as for the patient dying to FMTs they didn't screen the donor properly because his gut was bacterial resistant to ecoli. So, they need to screen better but one death out of thousands of FMTs done in the amount of clinical trails done over the past decades... I think FMTs are generally safe but finding the right donor is the real trick that's where it becomes dangerous but someone dying from it is rare.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: ReA to AS, does it go away? Caturday 11/14/19 08:00 PM
Originally Posted by Imnotsure
Originally Posted by Caturday
Originally Posted by Imnotsure
You're not doomed. Problem is people don't want to change their lifestyle to accommodate AS. People keep trying to fight it and you're not going to win. The sooner you work with it the better you'll be physically and mentally. Doctors do not treat they only prescribe. If that were the case then there would be no need for doctors. Also the information provided by doctors and specialist on how to improve symptoms without medications is wrong.

my rheumatologist couldnt understand why my pain markers on the sheet I kept filling out was dropping 2 points every four months after I stopped my tnf blockers. She now asks me for information which she also now helps other patients along with their medications.

If you want some information to live better quality of life send me a message.



I pmed you.


Hi, i got nothing from you as of yet.


I messaged the wrong person! lol
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Alternative Treatment / Diet Discussion Jump to new posts
Re: Bromantane Imnotsure 11/14/19 05:00 PM
The supplement should be in today or tomorrow so I will be able to try this over the weekend and I can report either Sunday or Monday on how it goes. And an update as the week goes by. This medication also has systemic effects which I will also be monitoring.

Once it comes in I'm going to stop my current medication that it take daily. by the second day of not taking my medication my pain starts to set in and then this way I can use this as a baseline on how well this could potentially work as I do with all supplements. I eat a mono diet so how I feel everyday is basically exactly the same. this way there's no outside influences that can contribute negatively or positively to the supplements i test.

Also not only for the possible anti-inflammation of facts there's also a lot of other positive effects I seem to work quite well from other users in Reddit for other purposes.

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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Potential "Patch" for AS PainintheAS 11/14/19 04:15 PM
Originally Posted by Caturday
Originally Posted by PsSpa_M_1989
Originally Posted by Caturday
So, what would you recommend for hla-b27 negative and positive patients in terms of supplements they can easily acquire to stem the affects of inflammation? What would be your foundation that leads to a protocol? You've done so much research I think you should condense this info and create something like a protocol for people to follow I think this would be easier. I understand everyone is different but this anti-biotic stuff and the research you've shown on this thread has opened my eyes more.

I still think however, ultimately fecal matter transplant is the ultimate way to heal a leaky gut and reverse inflammation permanently in our biome. But, the donors have to be in perfect health and that is hard to find.


I think your last statement is one of the most curious currently on this forum. In infectious disease clinics, lives have been saved by fecal transplants from newborns to patients hours away from dying, usually due to anti-biotic courses almost obliterating the gut microbiome and thus arresting the function of the immune system.

Hopefully in a not too distant future, we can purchase personalized gut microbiome cultures in the pharmacy, and these ridiculous autoimmune diseases will be a thing of the past (wishful thinking - but here is hoping). Babies are maybe the best donors because their DNA expression is still relatively unspoiled by the stupid high-carb, high-processed diet of contemporary society.

Over and out.


Do you have any studies that show positive correlation on how babies fmt help people with autoimmune conditions like arthritis specifically?


A google search shows that clinical trials are being registered for PsA/RA and FMT's. They themselves note in the registration information that they are not sure how to define the proper targets for a "best fit" for each individual. There are also non-bacterial components like bacteriophages, etc. They are uncertain about how to incorporate those elements as well. I know that bacteriophages are used in other countries and have helped with countless conditions in order to fight some pretty powerful bugs. I will note, one person has already died from an FMT because a drug-resistant bacteria that was non-pathogenic in the donor was pathogenic to the recipient and happened to be drug-resistant. Some serious dangers to this option, simply because of differences in the immune system between the two people.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: ReA to AS, does it go away? Winston 11/14/19 03:45 PM
I'm not sure I would rely on the studies reporting a decreased life expectancy for AS suffererers given that there are no long-term studies on the impact of biologic therapy on disease prognosis. Many of the extant studies will include participants who suffered with the disease for decades before there was any effective treatment.That said, the increased mortality seems to be tied to the cardiovascular complications of AS. I have said repeatedly here that anyone diagnosed with AS needs to see a cardiologist regularly. That relationship should be almost as important as your relationship with your rheumatologist.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Infusion at center or home? FayeK 11/14/19 02:55 PM
Originally Posted by Roqufort
I enjoyed having the infusions at home when I was allowed. I would do it if I could!!!

Originally Posted by Roqufort
as far as the flu and getting sick, I have been getting remicade infusions for 6? years now, and i get the flu shot, i wash my hands and I have not gotten so much as a cold the entire time.

Carrie, thank you for the replies. Will you share more info on the at home infusion? Do you have a company that you worked well with and would recommend? My rheumy's office is trying to find a service in my area. I haven't checked in with them recently to find out where that stands. Also, what did the nurse do while you were getting the infusion, leave or stay? I've only had 1 infusion so far and it took 3 hours. The nurse there said the next one won't take as long. Thanks again.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: ReA to AS, does it go away? Imnotsure 11/14/19 12:36 PM
Originally Posted by Caturday
Originally Posted by Imnotsure
You're not doomed. Problem is people don't want to change their lifestyle to accommodate AS. People keep trying to fight it and you're not going to win. The sooner you work with it the better you'll be physically and mentally. Doctors do not treat they only prescribe. If that were the case then there would be no need for doctors. Also the information provided by doctors and specialist on how to improve symptoms without medications is wrong.

my rheumatologist couldnt understand why my pain markers on the sheet I kept filling out was dropping 2 points every four months after I stopped my tnf blockers. She now asks me for information which she also now helps other patients along with their medications.

If you want some information to live better quality of life send me a message.



I pmed you.


Hi, i got nothing from you as of yet.
10 321 Read More
General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: ReA to AS, does it go away? Caturday 11/14/19 03:31 AM
I think happiness for all of us would be functioning healthy individuals. I can accept limitations but I cannot accept being crippled by this disease nor do I want others to suffer severely. I get really sad there are people with AS that are essentially bed ridden and my heart goes out to them.

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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: ReA to AS, does it go away? KatherineL16 11/14/19 03:27 AM
Hi there, it seems like you are in a tough place mentally with your AS. I want you to know I am thinking about you and hoping you find things that bring you happiness.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: ReA to AS, does it go away? Caturday 11/14/19 01:06 AM
Originally Posted by worldofme
Originally Posted by sdot
It will never go away and can't be cured. So just like the rest of us you are doomed. I guess the key to it is to realize that there is only misery in this world for us. That being said, cheer up, with our lowered life expectancy, it'll be over soon enough and you can come back as a butterfly.



Are you serious? Low life expectancy?


For some people yes, but I think life expectancy is only reduced by several years. If you have psoriasis and AS then the life expectancy goes down much further to 62.3 years. Unfortunately, I have both.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: ReA to AS, does it go away? worldofme 11/14/19 12:37 AM
Originally Posted by sdot
It will never go away and can't be cured. So just like the rest of us you are doomed. I guess the key to it is to realize that there is only misery in this world for us. That being said, cheer up, with our lowered life expectancy, it'll be over soon enough and you can come back as a butterfly.



Are you serious? Low life expectancy?
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Women Only Message Board Jump to new posts
Endometrial Ablation for Heavy Periods on Biologic theyoungestmuse 11/13/19 10:39 PM
I have had extreme heavy blood loss since I've been on biologics. Did take a six month break and periods lightened. Gyn has suggestion an endometrial ablation. I have had to use Lysteda for the 3.5 years I have been on the biologics then this year had to add cytotec to get it to stop and stay out of ER. The meds work but at my age they are risky due to increased clotting. Just wondered if anyone has had the procedure. How did it work for you?
Danielle
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