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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: My Past Week AS and Cardiac WhiteCell 10/12/19 02:55 AM
Originally Posted by Sean O
How is your eye WhiteCell? My iritis gets triggered with stress so I thought it might be what is happening to you given how stressful the last while has been for you.
Take care.
SeN


Point of fact I had a new flare and had to see the Ophthamologist. She added an antibiotic and increased my other drops. It was very stressful.

Thank you for your question.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: CBD contraindicated with NSAIDs Imnotsure 10/09/19 11:05 AM
Originally Posted by Jacruz
Thanks for the info!
Update: I'm fortunate to live in a state where cbd cannabis, medical marijuana and recreational marijuana are all legal, so it was easy to try it out. I got some free samples of CBD plant in capsules, and started with 25 mg. It is only supposed to last 4 hours or so though. I took it a couple times a day and also used a typical cbd salve if I noticed pain or stiffness. I also smoked a CBD joint with a tiny amount of thc in it one night, as thc is supposed to increase the effectiveness of the CBD. I tried the CBD for a couple days, taking a total of 100 mg, plus salve and joint. It's now been 4-5 days without Meloxicam and amazingly I'm not having much pain or stiffness at all. The salve worked very nicely for stiffness in the moment that I felt it. All this seems very promising. I mostly felt quite well and didn't find it made me sleepy, which is one side effect for some people. Unfortunately, it seems to have possibly triggered a migraine that I've had since last night. This may be my own reaction or a side effect, not sure. I wanted to take one more of the capsules to see how it affects the headache but I can't find the last one I had. (I attribute that to the thc 😑 lol)


Give another update in a week. This way the meloxicam is out if your system as its an accumulative drug. I really hope you have success with this. But if you're still having plus pain and inflammation after two or three weeks then that's awesome. And usually takes one to three weeks to see if something's really working. Fingers crossed for you.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: CBD contraindicated with NSAIDs Jacruz 10/08/19 08:59 PM
I found out that CBD is available in a patch that you wear for continual release over 4 days. Unfortunately, it is super expensive, so I won't be trying that, but that sounds like the ideal way to take it for chronic inflammation purposes to me.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: CBD contraindicated with NSAIDs Jacruz 10/08/19 08:23 PM
Thanks for the info!
Update: I'm fortunate to live in a state where cbd cannabis, medical marijuana and recreational marijuana are all legal, so it was easy to try it out. I got some free samples of CBD plant in capsules, and started with 25 mg. It is only supposed to last 4 hours or so though. I took it a couple times a day and also used a typical cbd salve if I noticed pain or stiffness. I also smoked a CBD joint with a tiny amount of thc in it one night, as thc is supposed to increase the effectiveness of the CBD. I tried the CBD for a couple days, taking a total of 100 mg, plus salve and joint. It's now been 4-5 days without Meloxicam and amazingly I'm not having much pain or stiffness at all. The salve worked very nicely for stiffness in the moment that I felt it. All this seems very promising. I mostly felt quite well and didn't find it made me sleepy, which is one side effect for some people. Unfortunately, it seems to have possibly triggered a migraine that I've had since last night. This may be my own reaction or a side effect, not sure. I wanted to take one more of the capsules to see how it affects the headache but I can't find the last one I had. (I attribute that to the thc 😑 lol)
6 201 Read More
General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Hi all, newbie here. WhiteCell 10/08/19 02:18 PM
Glad to hear that the trees have parted. The thread is very helpful. TB is a curious mix of ancient illness and a modern challenge. Best of luck with the Simponi.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: CBD contraindicated with NSAIDs RAHMBA 10/07/19 06:39 PM
We've had a MD speak on cannabis for AS at the Los Angeles Educ/Support Group, and I don't recall him saying that it was contraindicated. I do recall him saying that he believes it would be helpful and that some THC may also be needed to be effective. His slide deck is here: https://www.spondylitis.org/Portals...011%201622.pdf?ver=2018-10-15-161231-463

Hope that helps.

kindest,
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Viable jobs with Spondylitis/Enthesitis pain? Winston 10/07/19 06:30 PM
I've sent you a private message.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Viable jobs with Spondylitis/Enthesitis pain? Alex140 10/07/19 05:41 PM
Originally Posted by Winston
Alex140, who told you that? Was it, perhaps, some attorney you were consulting? When Social Security sends you for a consultative exam, they pay for it, not you. And when you have a long, well-documented medical history, consultative exams usually aren't even necessary. (Occasionally you will draw a bad judge who might order one, but it's not typical). If you absolutely must have that form filled out, you can just take the form to your own doctor to be filled out.


Welp, too late for that. I really need to check back here more often. I paid $300 for a disability work assessment, which is supposedly a cheaper version of a FCE. It was garbage, barely tested my capabilities at all. Worst of all, they determined after the fact that I am totally capable of an 8 hour work shift, which is completely not true. So now I have "proof" that I can work when I can't.

I looked it up, and I can't find anything that says social security pays for the evaluation. It just says they pay for transportation to it.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Hi all, newbie here. FayeK 10/07/19 11:47 AM
Just to close out this thread...
After 2 Quantiferon Gold blood tests (1 positive/1 negative result), a chest xray (negative for TB) 2 PPD skin tests (both negative), no symptoms and no know exposure to TB, "the powers that be" decided I don't have TB or latent TB. I'm relieved, sort of. I had convinced myself I had reactive arthritis caused by the TB and treating the TB was going to cure my pain. Alas, my dx is now officially AS. Rheumy is ready to put me on a biologic, Simponi as soon as my insurance approval goes through.
Thanks all for you help with this. Hopefully this discussion is helpful to others.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: CBD contraindicated with NSAIDs Jacruz 10/07/19 01:43 AM
Thanks for sharing your experience!
That sounds awful. frown When you had the flare-up, were you also discontinuing meds or still taking them? Do you know what is the specific type that causes the flare-up or have any idea why?
Has diet and supplements helped? What diet and supplements are you using?
Thanks
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: CBD contraindicated with NSAIDs Imnotsure 10/06/19 11:17 PM
Hi, I tried CBD oils and CBD isolate powder to vape and it causes me massive flare up as well as severe Costochondritis.

If you don't have the right receptors in your body for CBD it will wont work. Some Cannabis gives me a flare up but if I vape distilates I don't get a flare up. For AS it doesn't do anything for pain of inflammation for me. If you smoke enough of it you just kind of forget about it but it doesn't take it away. I do MMJ before bed so I can sleep.

I am on Meloxicam as well. I was on 2 biologics in the past but I've managed to get off them through diet and supplements. I'm working on getting off meloxicam as well. I am close to getting off of it.

All you can do at this point is to try it and see.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
CBD contraindicated with NSAIDs Jacruz 10/06/19 07:44 AM
In my efforts to find alternative treatments that might allow me to one day go off meloxicam, I looked into CBD (cannabis derivative that does not get you "high"). I was hoping to use this as a complementary therapy to try to dose down on the mobic, but I found out that it is contraindicated, considered potentially unsafe. :-/
So that is disappointing. It is supposedly great for pain and inflammation both.
I wonder if anyone on here has tried CBD to treat their condition and how your experience was. My doctor also offered me a medical marijuana card, but I am assuming this would be the same deal--- I would need to stop my meds to do it. Also, both are expensive for me, where my medication is free.

Thanks for sharing your thoughts
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Alternative Treatment / Diet Discussion Jump to new posts
Re: What type iodine for testing food for starch? FayeK 10/06/19 03:33 AM
Hi John,
Thank you very much for the info. I went across town to a large chain store and showed your reply to the pharmacist. They understood and had some in stock. It is their store brand so when I was home I tested dozens of foods. Known starchy things turned dark as expected.
Health to you.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Sulfasalazine for Peripheral AS Sean O 10/06/19 01:02 AM
Originally Posted by RAHMBA


I wasn't aware of this protocol. it seems strange to me. AS is a clinical diagnosis. in the USA, SSZ is not indicated to treat AS. but TNFs are indicated to treat AS. If not managed by NSAIDS, then I would think a biologic would be offered to you.

Treatment guidelines:
https://www.rheumatology.org/Portals/0/Files/AxialSpA-Guideline-Early-view-2019.pdf

info:
https://www.spondylitis.org/Treatment-Information

https://www.spondylitis.org/Medication-Guide


The guidelines you quote from 2019 in Table 2, Recommendation 4 seems to say SSZ is appropriate sometimes for peripheral arthritis. I may get it because peripheral arthritis is a growing problem for me as well.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: My Past Week AS and Cardiac Sean O 10/06/19 12:43 AM
How is your eye WhiteCell? My iritis gets triggered with stress so I thought it might be what is happening to you given how stressful the last while has been for you.
Take care.
SeN
16 593 Read More
Alternative Treatment / Diet Discussion Jump to new posts
Re: What type iodine for testing food for starch? Tacitus 10/05/19 03:28 AM
Hello, Faye:

I use a 1% solution called "Atomidine" or "Atomic Iodine," available from the Baar's or Heritage (Edgar Cayce products). In a pinch I can dilute a 7% tincture considerably--doesn't have to be exact but 1-3% works best.

HEALTH,
John
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Young Adults - The 20-Something Club Jump to new posts
Re: Pain & Fatigue Imnotsure 10/04/19 07:36 PM
Fatique was a major problem for me as well. I was a zombie and barely functional after work but I might have a fix your and everyone else that fixed 80% of mine.

AS wrecks havoc on you entire bodily fuctions and as a result the oxidative stress is a major cause of the chronic fatique.

Ubiquinol & L-Carnosine.

Your body naturally makes these 2 supplements. I figured out the sweet dosing spot trying different doses and read several studies to ensure too much wont have negative effects.

Take 400mg of Ubquinol in the morning, 500mg of L-Carnosine in the monring and another 500mg L-Carnosine before 4pm.

The reason for spacing out the Carnosine is that an enzyme quickly breaks it. Taking 1000mg a day allows it to stay in your system as the enzyme can't break it down fast enough and thus getting the benefits you need. **** DO NOT TAKE IF YOU ARE TAKING SATINES Medications**** Beyond that the 2 are perfectly safe and no side effects.

When you buy the Ubquinol make sure it is made with Olive oil as many come with Sunflower which is not good for those with AS. When you buy the L-Carnosine make sure it has no other supplements added such as Vitamin C in it.

I Take my supplements in powered forms because its cheaper and NO FILLERS. Mix the Ubquinol in olive oil as its a fat soluble. Meaning you cannot absorb it with out fat. The Carnosine is water soluble. The Ubquinol that you buy at the store is already mixed with Olive oil so no need to worry unless you buy it in pure crystal form as I do.

The recommended does of Ubquinol is 100mg but that is for a normal person and that dose will do nothing for you. Again Start off at 400mg.
Both of these supplements change everything. Here are 2 links to read up on and when you read it, it sounds too good to be true and for once it is true. You should notice something the same day but as the days go on you start to notice more and more changes.

Both of these supplements are not VEGAN free so your SOL. Ubquinol is derived from Yeast and Carnosine is from Meats/fish


https://selfhacked.com/blog/ubiquinol-benefits/

https://selfhacked.com/blog/carnosine/

I'm going to put putting together list of supplements that actually help you improve your quality of life and your welcome to contact me for information.


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Alternative Treatment / Diet Discussion Jump to new posts
What type iodine for testing food for starch? FayeK 10/03/19 12:46 AM
Hi all,
I tried to get iodine (for testing food on the NSD) from my pharmacist. They have to order it and wanted to know what type I wanted. I didn't know. Can someone suggest a type and/or brand?
Thanks in advance for your help.
2 61 Read More
General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Taking Celebrex Daily for a Long Period of Time Imnotsure 10/02/19 10:45 PM
Originally Posted by PainintheAS
Originally Posted by Imnotsure

A new supplement I'm gearing up for is Butyrate. I'm going to be doing high doses of this supplement as it has been very promising for other autoimmune diseases and several other symptoms caused by the autoimmune disease such as depression, anxiety, ulcers, oxidative stress. From what I read like all supplements claim this is the Holy Grail. On a side note 905% of all supplements is a waste of money.


Be VERY careful with Butyrate. I've used it to help my guts too. However, tons of research shows time and again that a little Butyrate is good...and a lot can do much more harm than good and increase intestinal issues. I'd suggest starting low, and building up until you feel good, and stopping there. Propionate is another helpful item. Firmicutes and Bacteroidetes are the two classes (at a high level) of bacteria found in the gut. In HLA-B27+ people (such as myself) the ratio of these bacteria is skewed so that the production of butyrate and propionate is skewed in comparison to acetate. It makes perfect sense that too much acetate would be detrimental to the lining of the guts. Without the propionate and butyrate as an energy source for the intestinal cells (crypts etc.) then you will have breakdown. Add acetate in higher concentrations to the mix...and you have a recipe for disaster. Take a look into propionate, too. There a good deal of studies showing the firmicutes/bacteroidetes ratios being out of balance, what each produce and, subsequently, their effects on intestinal health. I found that sometimes taking butyrate can actually make me worse. So, word of caution, as well as a recommendation to check out propionate as well. Good luck!


So, I did what I said what I would do:P

I had success in other areas but it's not sustainable.

I took 2 in the morning and 2 at night. After 2 days I started to flare up. I pushed through it and kept taking but then I had to quickly stop. Besides the flare up I ended up in the hospital as my mucus lining in my large intestine was being stripped away with blood in it. It felt like my appendix was going to explode. They took blood work and came back clean. They did an ultra sound and came back clean but the stool sample was not. It as full of bad bacteria. So what had happened was the butyrate killed off overgrowth bacteria that was an underlying problem I had before. Prior to my taking butyrate I was having some major issues with my gut. Now it's all fixed. It cleared everything up and better than before. It's a shame I can't keep taking it as my AS reacts to it. So it was a win for me! I had a colonoscopy Yesterday and everything came back perfect. All healed up. My symptoms are gone prior to taking Butyrate.
.
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For Parents and Teens Jump to new posts
Diagnosis protocol Imnotsure 10/01/19 11:52 AM
Hello,

If a child is diagnosed with AS, is the treatment out of the parents hands? Is the treatment enforced on the child who is under the age of 16 regardless of what the parent wants under medical law? (Canadian Law)

Thank you
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: My Past Week AS and Cardiac SadieP1989 10/01/19 02:24 AM
I'm sorry to hear about Chevy.
It's profoundly relieving to read that you are safe and recovering.
Rest well.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Biologic Holiday theyoungestmuse 10/01/19 01:44 AM
I stopped Cosentyx in April after two years. I was having worsening sacroiliitis plus other things(chronic cough, skin growths, and abdominal swelling) I felt better by July. The year long cough was gone and I dropped a pants size. Now I have worsening sacroiliitis again, sore ribs and tiredness but I am losing weight and the skin growths are almost gone.
My rheumatologist had agreed that I could try Taltz when it got approved and it has. I think the Cosentyx was messing with my stomach and intestines. The cough had been at night and seemed to be reflux from the abdominal swelling.
The sacroiliitis now keeps me from being able to bend or squat. When I was on the Cosentyx I hurt but yet I could squat. it is strange that the pain and the weakness does not necessarily go hand in hand.
My question is does anyone have any experience with going off a biologic and not realizing that it was helping until you get worse again? I wonder if I will have the same issues with Taltz? Has anyone been able to try it yet? I am also thinking I may do better with less frequent injections.
I am having to take the celebrex every day and the tramadol most days since the beginning of September.
I am realizing that I will need to keep trialing biologics. I can't take TNFi but I would like to trial an IL6i. Here's to one of them getting approved for AS so my insurance will pay for it.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: My Past Week AS and Cardiac SouthernMoss 09/30/19 04:28 PM
Oh I'm so sorry about Chevy. An unexpected death is the worst. Hang in there, and take care of yourself.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Helminthic therapy for AS butters 09/30/19 09:20 AM
Haha, I'll try my best. I hope that posting about my experience with helminths on an AS forum hasn't activated the disappearing curse. wink

That's a good point about school. There's no way I could have done a regular job or full time study during the main side effect period (weeks 4 - 7) so the timing is definitely something to consider.

If I was to start over again I would only do 5 rather than 10, and I would have antihistamines and methylprednisolone ready to go for when the side effects fist kicked in as trying to tough them out without any medication wasn't much fun.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Helminthic therapy for AS Jacruz 09/30/19 05:59 AM
Thanks for sharing about your experience, Butters. I hope you find more improvement. Please do keep me posted no matter what happens because I'm kinda freaked out by all these disappearing worm people. 😂
It was interesting to read the threads although no one had the kind of results I'm of course hoping for. That is, before they disappeared.
Given what I'm learning about the side effects I'm thinking of maybe waiting to try this until I'm done with school. But ugh, I don't know. It's not like life is going to hand me a time perfect for me getting debilitatingly ill again. Once you've been there, it does not sound appealing to go back there, even for the promise of recovery ... My nsaids are working great, I just want to be off meds because of risks/potential side effects.
Anyway, keep me posted!
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