Worst case scenario: Spondyloatropathy

[sunshinecloudy242]

I have had symptoms of Spondyloarthritis for the past two years, and it has progressed so rapidly, that I am almost disabled by it.  I am forced to work in a wheel chair due to pain in my feet, calves and knees.  It started off with pain and discomfort in my buttocks.  I was only recently given the right diagnosis, after receiving pain blocks (cortisone injections) and a course of Salazopyrin, which made no difference.  I have had my first course of Methatrexate, which has made no difference.  Last week the doc doubled my dose of Methatrexate and prescribed Nivaquine and Coxflam.  What troubles me, is What is the worst case scenario of this disease - if not brought into remission, can it permanently disable me?  It sure feels like it

[carolanivey]

According to the American College of Rheumatology:

"TNF alpha blockers (a newer class of drugs known as biologics) are very effective in treating both the spinal and peripheral joint symptoms of spondyloarthritis. TNF alpha blockers that the FDA has approved for use in patients with ankylosing spondylitis are...Remicade, Enbrel, Humira, and Simponi."

None of these are a "cure" but can be a godsend for many patients, so I'm not sure why your rheumie doesn't think it will work. If your insurance covers it, it's definitely worth a try if there's a possibility of improving your quality of life. I'm glad the meds you're on are having an impact, however if there's any possibility that "moving without a wheel chair" could be improved to "exercising regularly and returning to normal activities," go for it.

[sunshinecloudy242]

Yes, please forgive my comments.  I was disillusioned at the time.  Thank you for your advice and encouragement

[sunshinecloudy242]

Thank you for the encouragement and advice.  I did mention Humira as a possibility to my specialist, and he was of the opinion that it would definitely help to cure RA but not Spondyloatropathy.??

The doctor increased methatrexate and added Nivaquine as well as Coxflam, this has actually started making a difference, so that I have been able to move without using the wheel chair.  There are days when the pain returns aggressively, but at least I have more relief "in between"

[sunshinecloudy242]

Thank you so much for your interest!  I would really appreciate those links, and will get onto the subject without delay

You can e-mail me at ***@****?

[carolanivey]

Yes, biologics are expensive, however as I said, over the long run it makes more sense to spend the money up front to save even more money later in terms of disability payments, surgeries, co-morbid diseases, etc. Penny wise, pound foolish, as the saying goes. Of course, that will mean changing the philosophy of an entire industry that makes money on sick people, so good luck with that, eh? :)

[TheLightSeeker]

The cost for biologics is approx.$ 20.000+ USD annually & probably for life.
You can see why insurance companies don't approve them easily.

From my own research-I used to be a lab "junkie" anything science,lol!-
have come up with a natural TNFa inhibitor protocol without the potential
immunosuppressive effects of biologics- Enbrel,Humira and Remicade.

Anyone interested, I can forward this information in a pm.
Very inexpensive ingredients, but you will probably need an ND to source them and administer it.
I have friends, clients and relatives who are using this or a modified version
of it for RA, Psoriasis and even Ulcerative colitis.

This is not intended as a substitute for medical advice.

Best wishes.
Niko

[Soubs]

I would be very interested in your natural TNFa inhibitor protocol. I was put on Humira for a few months, then had to go off of it because the cost was prohibitive. My co-pay even with insurance would have been $800.00 per month. It's so sad because it worked wonders for me.

[carolanivey]

Hi sunshinecloudy,

Methotrexate can take 3-6 months in your system before you can determine if it's going to work for you or not. That's one of the frustrating parts about autoimmune disease - we spend a lot of time waiting to see if a drug is going to be effective. Very few of them have noticeable effects after the first or second dose.

Mtx works for a significant number of people, but honestly I wish doctors would go straight for the biologic "big guns" like Enbrel and Humira. The quicker you get the inflammation under control. the less likely you'll have long-term damage. Unfortunately insurance companies make us jump through less-expensive hoops before they approve the "big guns." To me, it seems to make more sense to treat aggressively, get things settled down, *then* back up and see if something older and less expensive will keep the patient's symptoms in check. In the long run, I think that would keep more people functional and less likely to file for disability. Just my humble opinion, though. :)

Anyway, it's tough to answer your last question because each patient is different. There is no one size fits all treatment for autoimmune diseases. For example, I've had RA since age 5 and don't consider myself disabled. Other people I know have had it for only a few years and have had to file for disability. I knew some kids in their teens getting joints replaced; I didn't get my first one until age 37. Your journey is uniquely your own and no one can tell you that you'll wind up disabled, because chances are just as good you won't. Hope is a powerful thing. Keep your chin up! :)

[TheLightSeeker]

Church, religion , christianity, manipulation for financial gain?
I don't quite understand. What am I missing?
Are you sure you have the right poster, as I made no mention, no reference nor any innuendos regarding these at all!

Cheers!

[Norm888]

Hi
This is my second attempt as in the first I posted a ink to another forum and that is apparently not allowed.
I was asking if you had ever tried a no starch diet. My son-in-law has AS and after a bit of research has found a possible link between AS and Klebsiella pneumoniae. If you are at all interested then PM me and I will give you links.
------------------------------------------
I myself am new to this forum but know of it through my wife. She suffers from MS. Through research I actually found this site for her when she was first diagnosed. She has found it to be of great value and has made many friends.

Thanks  Norm

[sunshinecloudy242]

Thank you, interesting.

Physical:  The spinal involvement is there, MRI scan indicated that the soft tissue between my lower vertebrae have degenerated and the enthesitis is where the spine connects with my pelvic bones, thus the buttock pain.  I get spasms in the muscles of my lower back and have had various unsuccessful physio sessions to attempt to release "nodules" in the muscles of lower back and buttocks.

Spiritual:  I prefer not to confuse myself about this matter any further :-\ as the subject is sooooo wide with so many variations of so many confused individuals or groups who chase sensation or even justify a financial gain by manipulating the feeble emotions of humans into submission of nothing other but this world.  We form the greatest religions to elevate ourselves beyond belief - in fact most churches or christians are so elevated that they are nowhere when you need them.  Sorry, a bit cynical

  

[TheLightSeeker]

I forgot to mention that your condition is more like a peripheral variant of
Spondyloarthitis, with no spinal involvement, from what you mentioned.

On a deeper level our feet have to do with our understanding of ourselves and our life as it relates to the past, the present and the future.
The buttocks represent strength and power, so weak or painful buttocks
represent loss of power or weakness.
The knees represent flexibility, so knee stiffness and pain indicates inflexibility or inability to bend or unforgiveness.

Do any of these relate to you in any way perhaps?

[TheLightSeeker]

Hi sunshine. I've taken the liberty to shorten your name a little. lol!

You are relatively young and I'm sorry you're going through this in your life.
Please stay strong and focused as I know there are things you can do to improve your health!

My educated guess for the worse case scenario regarding  your condition would be as follows:
The possible underlying and unaddressed factors
a. Infectious condition.
b. Inflammatory processes
c. Gene activating triggers
d. Suppressed emotions/ unresolved past traumatic events.
e. stress (often hidden)

would continue contributing to your imbalance/disease state affecting more organs and systems of your body, associated with Spondyloarthritis, such as other parts of the skeletal system (arms, spine),the skin, the eyes and the digestive/intestinal system.

So what would possibly help is to look at all of the above factors a,b,c,d,& e, from a holistic/naturopathic point of view, and explore all the options
of  how to effectively  minimize or eliminate them. (where and if possible)

Conventional medicine has not found the answers for curing any type of arthritis, however, there are natural therapies, based on newer research
that do work and may stop the progression of arthritis and promote recovery

There are a few things that I can suggest you look into regarding this, however, I would strongly  recommend that you seek out a very reputable Holistic Doctor or Naturopathic Doctor who is familiar with such conditions!

If you are interested in pursuing this, let me know and I can give you some
pointers.
You may post again here, or you may message me any time!

Please note that this is not intended as a substitute for medical advice.

Best wishes.
Niko