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Living with Spondyloarthropathy

Started by Raymond Harris11 · · 👁 4 views · 59 replies

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Participants Raymond Harris11Melissa Moore39granitecanyon2Kyle Diaz28Benjamin Mitchell3Nicole Nelson55Amy Fowler5mistyhound2Steven Booth65bluerider62restlesscanyon16granitemaker72placiddrifter86Matthew Morgan7Joseph Doyle38ruggedcobra6
Raymond Harris11 Raymond Harris11 MemberOP
12 messages
joined Jun 2007
#1 ·
I was wondering if anyone here has experience using methotrexate for treating rheumatoid arthritis (or spondyloarthropathy).
My 17-year-old son is about to start taking it once a week. He’s already on a regimen of sulfasalazine, Indocin, and Cortisone, so I can't help but feel a little anxious about adding something else to the mix. If anyone has any insight or personal experience they could share, I would truly appreciate it.
Melissa Moore39 Melissa Moore39 Member
31 messages
joined Sep 2007
#2 ·
I’m currently on corticosteroids myself—I actually know a guy who takes them too, though I guess he isn't seeing much improvement either. Regarding your son, what exactly is his diagnosis? That term you used is a bit broad, don't you think?
granitecanyon2 granitecanyon2 Newcomer
9 messages
joined Apr 2008
#3 ·
I’m dealing with seronegative spondyloarthropathy, so I’ve just been sticking to Advil for the pain. I tried Indomethacin once, but it made me feel pretty terrible. I’m still waiting on a definitive diagnosis because "spondyloarthropathy" is such a broad umbrella term—and from what I understand, rheumatoid arthritis isn't even part of that group. Try to find some alternatives; the fewer pills, the better. I assume they were doing tissue typing? Is there an HLA B27 genetic factor involved in rheumatoid arthritis?
Raymond Harris11 Raymond Harris11 MemberOP
12 messages
joined Jun 2007
#4 ·
I have to admit, I’m still pretty confused by all this myself. I don't really grasp the nuance between spondyloarthritis and ankylosing spondylitis—it feels like here in the States, doctors seem to toss those diagnoses around interchangeably quite often.
Mainly, he was dealing with intense pain in his heel and Achilles tendon, but he never actually had any issues with his spine.
Honestly, I haven't the slightest clue what they're basing their conclusions on, other than the fact that he tested positive for HLA B27.
What kind of symptoms or pains are you all dealing with? How did your doctors conclude you have spondyloarthritis, and what does the treatment look like for you?
granitecanyon2 granitecanyon2 Newcomer
9 messages
joined Apr 2008
#5 ·
Rheumatic diseases are among the most common ailments affecting people, specifically targeting the musculoskeletal system. It feels like there isn't an older woman in America who hasn't complained about "rheumatism." Consequently, medications for these conditions are some of the most frequently prescribed drugs out there. Rheumatism actually encompasses a broad spectrum of symptoms; while it typically hits the joints, it can also affect muscle and connective tissue.
We categorize them as follows:
inflammatory rheumatic diseases (such as rheumatic fever, rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, lupus, scleroderma, etc.)
degenerative rheumatic diseases (chondrosis, osteoarthritis, osteochondrosis, spondylitis, and spondyloarthritis)
extra-articular rheumatism (fibromyalgia, bursitis, tendinitis, tendovaginitis, panniculitis, etc.)
Inflammatory rheumatism can be triggered by infections or injuries, but the most frequent culprit is an autoimmune reaction against the connective tissue in the joints or other organs.
Degenerative rheumatism is essentially the result of aging and the general "wear and tear" of the joints—specifically a decline in glucosamine and chondroitin levels as we age. In plain English, people often just call it "bone hardening."

Rheumatoid Arthritis
Rheumatoid arthritis is a serious condition. It affects roughly 2-3% of the global population, which translates to about 180 million people worldwide. It’s characterized by chronic joint inflammation, lack of joint mobility, pain, and morning stiffness. In severe cases, patients may end up immobile and dependent on caregivers. In this disease, the immune system attacks its own protein structures within the joints, causing them to degrade. Eventually, the cartilage wears away entirely, leaving bone to rub directly against bone. At that point, the joint becomes non-functional.
The exact cause of rheumatoid arthritis remains somewhat elusive. There are two main theories. One suggests that T lymphocytes—cells of the immune system—interact with an as-yet-unknown antigen. These T cells are responsible for both triggering the disease and maintaining its chronic nature. This theory is supported by research linking rheumatoid arthritis to the HLA antigen system, high counts of CD4+ T lymphocytes, and disrupted T lymphocyte receptors in the joints. The second theory posits that T cells only kickstart the process, and the ongoing chronic inflammation is actually driven by macrophages and fibroblasts. Genetic predisposition plays a vital role in the development of rheumatoid arthritis. Due to errors in the joint cartilage cells, T lymphocytes begin treating the cartilage as if it were a foreign invader. This sets off a complex, poorly understood inflammatory cascade involving macrophages, tissue fibroblasts, B lymphocytes, neutrophils, and a whole host of inflammatory mediators (like prostaglandins) and cytokines (interleukins, TNF-alpha), along with proteases. These mediators and cytokines—specifically interleukin IL-1 and TNF-alpha, which are key drivers—fuel the progression of the disease, while proteases (collagenase, stromelysin, and gelatinase) actively destroy the cartilage and bone. Beyond local joint symptoms like pain and swelling, sufferers often experience systemic issues like fever, loss of appetite, and muscle weakness.
The destruction of joint structure leads to complete dysfunction and physical deformity, which is most visibly seen in the fingers.
Treatment strategies for rheumatoid arthritis involve using anti-inflammatory drugs such as NSAIDs (which block prostaglandin synthesis), corticosteroids, and immunosuppressants (like leflunomide or methotrexate), as well as sulfasalazine and gold therapy. More recently, monoclonal antibodies have been developed, including specific TNF inhibitors (etanercept, infliximab, adalimumab) and interleukin IL-1 receptor antagonists (anakinra).

Juvenile Idiopathic Arthritis
This is a version of rheumatoid arthritis that targets children between the ages of 6 months and 16 years. Since most people associate arthritis with the elderly, parents often find themselves confused or in denial, struggling to accept that such a condition can strike an infant. There is an acute form that might flare up for a few weeks or months before vanishing. However, there is also a much more serious, chronic version that can persist for years. It can affect a single joint or multiple joints; generally, the more joints involved, the less likely it is to resolve on its own. Juvenile arthritis is a nasty disease that can cause severe, lasting impacts on a child's growth and development. In extreme cases, a child may face significant developmental delays or permanent disability.

Psoriatic Arthritis
Some individuals dealing with rheumatoid arthritis also develop psoriasis, a severe autoimmune skin condition. Given that both are autoimmune disorders, it stands to reason they share a common cause. Research suggests a strong genetic predisposition plays a major role here. While the exact mechanism isn't fully understood, it appears T-cells and certain cytokines are the primary culprits. A key diagnostic detail is that the rheumatoid factor—a protein found in classic rheumatoid arthritis—is absent in patients with psoriatic arthritis. This condition cannot be cured, but symptoms can be managed; essentially, you don't "cure" psoriatic arthritis, you just control it. Interestingly, TNF-alpha inhibitors, which target a cytokine crucial to arthritis progression, work to treat both the skin and the joints, reinforcing the idea of a shared biological pathway.

Osteoarthritis
Osteoarthritis is a degenerative form of arthritis characterized by the breakdown and loss of cartilage between the bones in a joint. It is the most prevalent type of arthritis out there. In the US alone, roughly 20 million people suffer from it. While typically associated with aging, it can manifest earlier, even before age 45. It’s more common in women among older populations. This condition tends to hit the hands, feet, spine, knees, and hips. It is closely linked to the aging process and changes in cartilage, which loses its elasticity and becomes more vulnerable. Decades of heavy joint use eventually take their toll, leading to irritation and inflammation. People who have spent their lives in physically demanding roles—like manual laborers or farmers—are frequently affected. Professional athletes and weightlifters are also prime targets due to previous injuries. Overweight is another major risk factor.
Unlike other forms, osteoarthritis is strictly a disease of the joint cartilage. It starts with the cartilage fraying and developing cracks. After pushing an affected joint too hard, a patient will feel pain that doesn't subside the next day, but actually worsens. Inflammation sets in, and you might start hearing clicking or grinding sounds in the joint. Even periods of inactivity, like sitting through a long movie, can result in stiffness and pain. Eventually, the cartilage between the bones can deteriorate entirely, causing the bones to rub directly against each other. This results in intense pain and limited mobility—every movement hurts. The resulting inflammation can trigger new bone growth, leading to joint deformities, especially in the fingers. This condition often runs in families, suggesting a genetic component.
Treatment for osteoarthritis typically involves NSAIDs and corticosteroids injected directly into the joint. Supplements like glucosamine, chondroitin, and hyaluronic acid may also help improve the quality of the degenerating cartilage.

Ankylosing Spondylitis
Ankylosing spondylitis is essentially chronic connective tissue inflammation. It attacks the spine and the sacroiliac joints, and about a third of patients deal with damage to other joints too. It typically hits younger men. We still don't fully understand the causes, but genetics is the heavy hitter here. The disease triggers excessive connective tissue growth, which eventually destroys cartilage and bone. As the body tries to rebuild, the spinal structures deform—leaving the spine stiff and curved. In advanced cases, this results in that characteristic hunched posture. Early warning signs include pain and stiffness in the back, specifically along the spine. The condition tends to move from the upper spine down toward the lower section. In severe cases, the spine and its connected joints can become completely fused. 🙂
granitecanyon2 granitecanyon2 Newcomer
9 messages
joined Apr 2008
#6 ·
Seronegative Spondyloarthropathy:

Often referred to as ankylosing spondylitis, this is a
chronic, progressive inflammatory condition affecting the musculoskeletal system—primarily
targeting the spine and limb joints. It typically surfaces in younger
adults and is diagnosed 3 to 10 times more frequently in men. From a lab perspective,
it’s defined by the absence of rheumatoid factor in the blood, which is why
we categorize it under seronegative spondyloarthritis.

It’s unfortunate your son is HLA B27 positive on top of everything else, especially since he inherited it from a relative. I picked mine up from a grandparent; my parents don't have any rheumatic issues.
Diet plays a massive role in how the disease develops. My advice? Cut out all the "junk"—pizza, burgers, deli meats, canned goods, you name it. Stick to fresh fruits and vegetables. Also, dairy can trigger inflammation in the joints.
Raymond Harris11 Raymond Harris11 MemberOP
12 messages
joined Jun 2007
#7 ·
Thank you so much for providing such incredibly thorough information. I’ve actually come across some of this while digging through medical encyclopedias and searching online, but honestly, it’s just so hard to wrap your head around such a heavy diagnosis. It feels like a constant uphill battle; just when you think things are finally settling down and you can catch your breath, the pains start creeping back in, or he gets that tightness in his heel and everything feels off again.
Now that he’s on these medications, I find myself watching him under a microscope, and we’re both starting to drive each other crazy with the sheer anxiety of it all.
I’m constantly second-guessing what kind of reactions are actually normal, but the doctors feel so distant—it’s like they aren't able or willing to give us the specific answers we really need right now.
He just developed this sort of rash on his arms, and despite my best efforts to figure out if this is a "normal" side effect from the meds (like the Salazopyrin or the Cortisone... I haven't had any luck getting a straight answer), I'm still in the dark.
Do you happen to know anything about this? I would be so grateful for any insight you might have.
Melissa Moore39 Melissa Moore39 Member
31 messages
joined Sep 2007
#8 ·
I suspect that rash might be a side effect from those medications—but just to be safe, you should probably go through the list of side effects on the label; honestly, they list pretty much everything there is

granitecanyon2, do you happen to have ankylosing spondylitis??
Where exactly are you feeling the pain? For me, it’s my entire lower back area. 😠
Kyle Diaz28 Kyle Diaz28 Newcomer
7 messages
joined Sep 2007
#9 ·
Could anyone recommend a reliable rheumatologist in Washington, D.C.? I am 19 years old and haven't had a checkup in a year and a half because my pediatric rheumatologist stopped seeing me once I turned 18. I deal with seronegative spondyloarthropathy and I am HLA B27 positive. I'm not currently on any medication because I used to take Advil, but it caused severe stomach pain. I did buy a TENS unit, which helps quite a bit when my back hurts; I apply it to my lower back and it provides a nice "massage."
granitecanyon2 granitecanyon2 Newcomer
9 messages
joined Apr 2008
#10 ·
Rashes can definitely be a side effect of medication. I don't have Ankylosing Spondylitis because that primarily targets the spine, whereas my issues involve every single joint in my body. To make matters worse, the doctors here seem clueless about what's actually happening—they haven't even bothered to find a real diagnosis. I'm currently seeing an immunologist at Mayo Clinic, Dr. Markel, though I’d jump at the chance to get a second opinion. This whole process is moving at a snail's pace, so if anyone knows a decent rheumatologist, please send them my way. Back in December, I had scans done on my sacroiliac joints at Mayo; they sent over the images, but somehow "forgot" to send the actual report.
My entire spine is aching, but the thoracic section is the biggest nightmare. It's even worse when my neck starts acting up, because then I'm stuck dealing with these brutal migraine-style headaches.
Melissa Moore39 Melissa Moore39 Member
31 messages
joined Sep 2007
#11 ·
granitecanyon2, I know those pains all too well....
Do you deal with any shortness of breath, or maybe find yourself getting winded quickly when you're walking fast or heading up stairs?

Ever since I started taking Medrol and Sulfasalazine, things haven't been quite as unbearable—though, I wouldn't say they're great either—but I still struggle with this constant low-grade fever around 99.5°F, which I just can't seem to pin down for anything for three years now,,,,,,

I’m currently seeing Dr. Anica for my Rib issues, though everyone seems to insist that Dr. Bosnic is the one to go to.
granitecanyon2 granitecanyon2 Newcomer
9 messages
joined Apr 2008
#12 ·
I’m having some trouble breathing, though I haven't run a fever once.
Most doctors have just told me my joints lack lubrication. Honestly, I'm just looking for information on the progression of this disease and what to expect. No need for false hope about getting better—we all know things only go downhill from here.😳
Raymond Harris11 Raymond Harris11 MemberOP
12 messages
joined Jun 2007
#13 ·
Kyle Diaz28 said:Could anyone recommend a reliable rheumatologist in Washington, D.C.? I am 19 years old and haven't had a checkup in a year and a half because my pediatric rheumatologist stopped seeing me once I turned 18. I deal with seronegative spondyloarthropathy and I am HLA B27 positive. I'm not currently on any medication because I used to take Advil, but it caused severe stomach pain. I did buy a TENS unit, which helps quite a bit when my back hurts; I apply it to my lower back and it provides a nice "massage."


Wait, how can you not be taking any kind of treatment? I guess I wonder if you're feeling better so you don't feel like you need it, or if they just didn't prescribe anything specific to you?

My son actually went through a similar phase where he wasn't taking anything for a while, and things seemed fine for a bit, but then he started getting this pain in his foot and heel. We eventually took him to see a different rheumatologist who put him on some pretty heavy-duty medication.

I honestly can't say for sure myself whether all these medications are strictly necessary, but I suppose you really have to trust your doctor's judgment regarding the treatment plan.

Has anyone here ever tried using Cortisone or methotrexate? They seem like pretty intense drugs, so I was hoping to hear about people's experiences with them. Like, how long do people typically stay on them? And what kind of side effects should I maybe look out for?
Kyle Diaz28 Kyle Diaz28 Newcomer
7 messages
joined Sep 2007
#14 ·
I have opted out of my medication regimen because I find the side effects of these pills to be quite severe. If anyone chooses to take them, I would suggest limiting it to once a day. While the pain persists, its frequency has certainly diminished. My main issues now are swollen joints and those persistent lumps along my lower back that seem immune to any pharmaceutical intervention. I will reiterate: TENS truly does make a difference.
Benjamin Mitchell3 Benjamin Mitchell3 Newcomer
3 messages
joined Jun 2007
#15 ·
Hello everyone,

My boyfriend has been dealing with ankylosing spondylitis for about seven years now.
It all kicked off with pain in his heel—he's tested positive for HLA B27.

He initially tried sulfasalazine (I think that’s the spelling), but he didn't tolerate it very well. His doctor, Dr. Bosnic, eventually switched him over to methotrexate; he's been on it for five years now, currently at about 15 mg per week.
He also used Aleve back before they were pulled from the market, and honestly, that was probably when he felt the best.
Nowadays, instead of the Aleve, he's alternating between Voltaren and Indomethacin—taking one or the other every single day.
On top of that, he’s taking 10 mg of Cortisone daily.
While methotrexate was incredibly effective when he first started the regimen, it seems like his body has developed a resistance to it lately. He's been recommended for biologic therapy, but we're just sitting around waiting for the insurance board to approve it. His immunologist mentioned a young guy she treated who also had AS, but he neglected to mention he wasn't taking his methotrexate—which ended up leaving him completely stiff and feeling absolutely miserable.
So, my take is that no matter how tempting any "alternative" might sound, when you're dealing with something this serious, you really shouldn't play games.

I was reading on www.kickas.org about something called the NON STARCH DIET. The idea is that cutting out starches—which are supposedly responsible for triggering immune responses—can help. It's become quite a cult phenomenon, but results are hit-or-miss, and frankly, it sounds like a massive challenge to actually stick to.

Despite all the medication, his ESR is still hovering around 60 and his CRP is near 40 (though they don't bother testing the CRP much lately since it's expensive and the results are always predictably high).

He generally tolerates the methotrexate well without major side effects, though he is a bit anemic, looks somewhat pale, and his immune system is definitely compromised—he's constantly sniffing and dealing with colds. Then again, the whole point of the drug is to suppress the immune system because, in an autoimmune disease, the body is essentially attacking itself.

We feel like biologics are going to be his best bet, but since those are typically only approved once the standard treatments fail, we're basically just waiting for the clock to run out. Hopefully, it's just a matter of time.

What exactly is your son suffering from? Has he been officially diagnosed with ankylosing spondylitis (Bechterew)? And does he deal with eye issues, specifically uveitis?
Raymond Harris11 Raymond Harris11 MemberOP
12 messages
joined Jun 2007
#16 ·
granitecanyon2 said:Rashes can definitely be a side effect of medication. I don't have Ankylosing Spondylitis because that primarily targets the spine, whereas my issues involve every single joint in my body. To make matters worse, the doctors here seem clueless about what's actually happening—they haven't even bothered to find a real diagnosis. I'm currently seeing an immunologist at Mayo Clinic, Dr. Markel, though I’d jump at the chance to get a second opinion. This whole process is moving at a snail's pace, so if anyone knows a decent rheumatologist, please send them my way. Back in December, I had scans done on my sacroiliac joints at Mayo; they sent over the images, but somehow "forgot" to send the actual report.
My entire spine is aching, but the thoracic section is the biggest nightmare. It's even worse when my neck starts acting up, because then I'm stuck dealing with these brutal migraine-style headaches.

granitecanyon2, what specific diagnosis were you given? What did they tell you was causing all that joint pain? I think my son is dealing with something similarly vague.
Does anyone happen to know how an Ankylosing Spondylitis diagnosis is actually confirmed? Is an X-ray required, or is there some other way they determine it?
granitecanyon2 granitecanyon2 Newcomer
9 messages
joined Apr 2008
#17 ·
Seronegative spondyloarthropathy.

The diagnosis was based on this report:

Thoracolumbar X-ray shows alignment of trunk concavities with osteopenia and high trunks. Calcium incrustations in the anterior annulus ligaments at the level of Th10, Th11, and Th12 L1. Blunted contours of the small facet joint articulations at the same level.
Hand X-ray: dominant para-articular osteopenia with hypertrophic bone atrophy; maintained joint space width in the radiocarpal and small carpal joints, as well as the MCP, PIP, and DIP joints.
Foot X-ray: diffuse osteopenia in the visualized bones. Left hallux valgus with widening of the IV and V metatarsal head spaces and soft tissue swelling. Maintained joint space width in all levels. Marginal apposition of the left great toe terminal phalanx.
Sacroiliac Joint X-ray: bilateral sclerosis on the iliac side, though no definitive erosive process is visible. Reduced joint space.
HLA Typing: HLA A2/28, HLA B17/35, HLA DR 1/2, HLA DQ 1/NT.

If anyone here actually understands this medical jargon, please break it down for me...

Now I need more testing to nail down the exact diagnosis so we can start targeted treatment. I've been dealing with this pain for six years now without taking any medication. Regarding Ankylosing Spondylitis, I don't think your son fits the profile since that specific disease targets the spine and sacroiliac joints. I thought I had it too, but they told me no because my issues involve all my joints. 😕
Nicole Nelson55 Nicole Nelson55 Newcomer
8 messages
joined Jun 2007
#18 ·
Raymond Harris11 said:Wait, how can you not be taking any kind of treatment? I guess I wonder if you're feeling better so you don't feel like you need it, or if they just didn't prescribe anything specific to you?

My son actually went through a similar phase where he wasn't taking anything for a while, and things seemed fine for a bit, but then he started getting this pain in his foot and heel. We eventually took him to see a different rheumatologist who put him on some pretty heavy-duty medication.

I honestly can't say for sure myself whether all these medications are strictly necessary, but I suppose you really have to trust your doctor's judgment regarding the treatment plan.

Has anyone here ever tried using Cortisone or methotrexate? They seem like pretty intense drugs, so I was hoping to hear about people's experiences with them. Like, how long do people typically stay on them? And what kind of side effects should I maybe look out for?

The medications mentioned are incredibly aggressive, and let's be real, the side effects can be pretty serious. You're looking at a potent anti-rheumatic (Indomethacin), a cytostatic (methotrexate), and a corticosteroid (Cortisone). Beyond just stomach issues or digestive trouble, methotrexate can mess with fertility, suppress your immune system, and could even cause minor disorientation when you're driving or operating machinery. It’s just too much for someone that age.
I’d suggest starting with something lighter—maybe more natural supplements. Things like devil's claw, nettle leaf, or black currant have proven effects that could definitely help. Plus, you really ought to focus on a three-week liver detox beforehand; after all, the liver is basically the organ responsible for the whole "glitch" where the immune system decides its own joints are foreign invaders and starts attacking them.
Benjamin Mitchell3 Benjamin Mitchell3 Newcomer
3 messages
joined Jun 2007
#19 ·
Of course, we shouldn't just toss alternative options out the window without a second thought...

Speaking from what I've seen firsthand with people close to me—and believe me, I've witnessed enough to know—skipping out on your prescribed treatment isn't just a minor oversight. It can lead to some pretty severe joint damage, potentially even landing someone with a permanent disability. It’s one of those things you really shouldn't gamble with.

When you start venturing down the rabbit hole of alternative medicine, it’s honestly hard to know what to believe. Everyone seems to have an opinion—one person swears by this supplement, another insists you need that specific remedy, and half the crowd is just trying to figure out how to get your money. It becomes this endless cycle of "try this" and "pay for that." Meanwhile, while you're busy chasing these unproven fixes, the underlying inflammation isn't going anywhere. You're essentially watching the fire burn while looking for a bucket, and all too often, people end up facing serious consequences that could have been avoided entirely if they had just stuck to their prescribed medication.

Hey, Nicole Nelson55—listen, I’m coming to you because I need some insight. If someone is sitting there with a sedimentation rate around 60 and their CRP is also through the roof, what kind of supplements or treatments actually make a dent? I'd really appreciate any advice you can give; I'd owe you one.
Without those medications, his sedimentation rate would be sitting somewhere around 150—which, frankly, sounds like a disaster waiting to happen.
Raymond Harris11 Raymond Harris11 MemberOP
12 messages
joined Jun 2007
#20 ·
Benjamin Mitchell3 said:Of course, we shouldn't just toss alternative options out the window without a second thought...

Speaking from what I've seen firsthand with people close to me—and believe me, I've witnessed enough to know—skipping out on your prescribed treatment isn't just a minor oversight. It can lead to some pretty severe joint damage, potentially even landing someone with a permanent disability. It’s one of those things you really shouldn't gamble with.

When you start venturing down the rabbit hole of alternative medicine, it’s honestly hard to know what to believe. Everyone seems to have an opinion—one person swears by this supplement, another insists you need that specific remedy, and half the crowd is just trying to figure out how to get your money. It becomes this endless cycle of "try this" and "pay for that." Meanwhile, while you're busy chasing these unproven fixes, the underlying inflammation isn't going anywhere. You're essentially watching the fire burn while looking for a bucket, and all too often, people end up facing serious consequences that could have been avoided entirely if they had just stuck to their prescribed medication.

Hey, Nicole Nelson55—listen, I’m coming to you because I need some insight. If someone is sitting there with a sedimentation rate around 60 and their CRP is also through the roof, what kind of supplements or treatments actually make a dent? I'd really appreciate any advice you can give; I'd owe you one.
Without those medications, his sedimentation rate would be sitting somewhere around 150—which, frankly, sounds like a disaster waiting to happen.


I really wish alternative treatments worked for everyone; it would be such a wonderful thing. I tried just about everything with my son, but unfortunately, nothing seemed to make much of a difference.
Regarding medical treatment, as difficult as it is to accept a heavy regimen,
inadequate care can lead to some really devastating outcomes.
I know this firsthand because, despite having a sedimentation level of 40 or more and a CRP over 30, the doctor we were seeing wouldn't prescribe any treatment at all. Because of that, he suffered major setbacks within just two years, including erosive changes in his heel bone. So, here we are now.
I just really hope we haven't waited too long to start proper therapy, because I honestly don't know what the future holds.

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