Managing Rheumatoid Arthritis during pregnancy
in Health ·
http://www.trudnoca.net/forum/viewto...p?f=12&t=34397
Give this a read and good luck—you got this!
Give this a read and good luck—you got this!
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mistyranger51 › Posts
Posts by mistyranger51
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Spa town recommendations?
in Health ·
Alexander Lewis, man, you're lucky you aren't dealing with some serious illness or a major injury. If you were—honestly, you wouldn't even be calling this "boring" anymore, because at that point, it’s all about You and Your life. Just keep having fun while you still can.
Cheers!!!
Cheers!!!
Michelle Ortiz said:My husband had a glucose reading of 7.2 at his checkup—though he did eat something around midnight the night before. Then when he went back for the OGTT test four days later, his fasting glucose was 6.8, but after the sugar drink, his 2-hour mark dropped to 6.4 (!!!). He’s never had high blood sugar before... can someone who actually knows this stuff explain how that 2-hour result could be okay?
It sounds like fasting glucose intolerance to me. Just a heads up—whenever you're getting fasting levels checked, you really shouldn't eat anything for at least 12 hours beforehand.
He probably just needs to cut out the concentrated sugars for a bit, then get tested again—that should bring things back into the normal range.
My own fasting levels always hover around 6.0, though I hit 6.5 once.
But my OGTT came back totally fine.
And once I started watching what I eat, I stayed right around 5.0.
Finger Deformities
in Health ·
restlesstiger10 said:She had some labs done back in 2004—
ASTO: < 200IU
Latex RF test: negative
Waaler-Rose: < 8 IU/ml
They told her she just had a mild case of RA.
She's 52.
Looks less severe than the photo, so I'm guessing it really is a milder version.
It’d definitely be smart to get an anti-CCP test. My own RA tests came back negative, but my anti-CCP levels were through the roof—crazy, right? It's huge for actually confirming an RA diagnosis. If the anti-CCP comes back positive, she could get onto therapy that stops the finger deformities from getting worse. I take MTX once a week and my fingers are totally straight.
Finger Deformities
in Health ·
restlesstiger10 said:About five years ago, my mom noticed her fingers starting to curve—sideways and toward her palm. Her physical therapist told her there’s no stopping it, just that it'll hit a certain point and plateau. She’s doing electrical stimulation therapy now to keep her hands mobile, and she takes Advil Dual Action for the pain—her fingers really act up when the weather changes. Lately, little bumps have popped up on her finger joints too... she's been taking UnitedHealth Group for those, and they seem to be shrinking quite a bit.
Diagnosis: M25.5 Arthralgia
Dx-Osteoarthritis of the hands—Heberden's nodes, FDA
Is there any way to actually stop the curving?
Honestly, this all sounds like arthritis to me—probably rheumatoid arthritis.
Before she starts any meds to try and halt that curving, she really needs a solid RA diagnosis first.
Has she had her RF, CRP, or anti-CCP levels checked? That's how you prove or rule out RA once and for all.
If I were her, I wouldn't just stop there—I'd definitely go get a second opinion.
How old is your mom?
Scleroderma: Morphea vs. Systemic Diagnosis
in Health ·
Systemic sclerosis—or systemic scleroderma—is this chronic condition where the skin hardens and internal organs get hit too, which usually leads to death after a few years.
It’s pretty rare, popping up in maybe three to twelve cases per million people, and women deal with it three to five times more often than men.
Nobody really knows what causes it, but basically, the body goes into overdrive creating connective tissue in the skin and organs.
Skin hardening usually kicks off in the fingers—think "maiden's fingers" or sclerodactyly—and the face. At first, the skin looks red and swollen, but then it gets so tight you can't even pinch it. It messes with facial expressions, making someone look almost mask-like... you know? The nose gets pointy, lips don't fully cover the teeth, and the mouth opening narrows. Then there are those painful finger cramps where the hands turn blue—that's acrocyanosis, or Raynaud's phenomenon. Eventually, the skin over the whole body can harden. As for the internal stuff, it hits swallowing because of esophageal sclerosis, breathing issues from lung fibrosis, plus digestive problems and damage to the kidneys and heart muscle.
A Diagnosis is made through exams and confirmed by skin biopsies and lab work.
There isn't a real cure yet, so treatment just focuses on managing symptoms. If swallowing is an issue, you need a specific diet, and if joints are involved, physical therapy helps.
The prognosis isn't great. You'd see an internist, immunologist, or rheumatologist for this.
Now, Morphea is different—it's a localized version that only affects the skin, not the organs. It's way more common than the systemic kind, twice as common in women, usually hitting folks between 20 and 40. It rarely turns into the systemic version, and the outlook is actually decent since it usually settles down after a few months, leaving behind some thickened, darker patches of skin. You'll typically see a few sclerotic spots—about the size of a coin or a palm—on the torso. Changes on the limbs or face can be linear, which can really mess with how someone looks and cause a lot of emotional distress, especially since treatment options are so limited. There's also a rare generalized version where huge areas or even the entire skin is affected.
We don't know why Morphea happens, but they say it might follow a tick bite (like Lyme disease), or show up in people handling pesticides, epoxy resins, or certain organic solvents.
Sometimes Morphea shows up where silicone was injected for breast or lip enhancements. For the localized version, you'd go to a dermatologist.
It’s pretty rare, popping up in maybe three to twelve cases per million people, and women deal with it three to five times more often than men.
Nobody really knows what causes it, but basically, the body goes into overdrive creating connective tissue in the skin and organs.
Skin hardening usually kicks off in the fingers—think "maiden's fingers" or sclerodactyly—and the face. At first, the skin looks red and swollen, but then it gets so tight you can't even pinch it. It messes with facial expressions, making someone look almost mask-like... you know? The nose gets pointy, lips don't fully cover the teeth, and the mouth opening narrows. Then there are those painful finger cramps where the hands turn blue—that's acrocyanosis, or Raynaud's phenomenon. Eventually, the skin over the whole body can harden. As for the internal stuff, it hits swallowing because of esophageal sclerosis, breathing issues from lung fibrosis, plus digestive problems and damage to the kidneys and heart muscle.
A Diagnosis is made through exams and confirmed by skin biopsies and lab work.
There isn't a real cure yet, so treatment just focuses on managing symptoms. If swallowing is an issue, you need a specific diet, and if joints are involved, physical therapy helps.
The prognosis isn't great. You'd see an internist, immunologist, or rheumatologist for this.
Now, Morphea is different—it's a localized version that only affects the skin, not the organs. It's way more common than the systemic kind, twice as common in women, usually hitting folks between 20 and 40. It rarely turns into the systemic version, and the outlook is actually decent since it usually settles down after a few months, leaving behind some thickened, darker patches of skin. You'll typically see a few sclerotic spots—about the size of a coin or a palm—on the torso. Changes on the limbs or face can be linear, which can really mess with how someone looks and cause a lot of emotional distress, especially since treatment options are so limited. There's also a rare generalized version where huge areas or even the entire skin is affected.
We don't know why Morphea happens, but they say it might follow a tick bite (like Lyme disease), or show up in people handling pesticides, epoxy resins, or certain organic solvents.
Sometimes Morphea shows up where silicone was injected for breast or lip enhancements. For the localized version, you'd go to a dermatologist.
Scleroderma: Morphea vs. Systemic Diagnosis
in Health ·
SCLERODERMA IS ON THE RISE
The cause behind this disease is still a total mystery—so we have no clue why it’s popping up more often in the US, especially out in coastal areas. It’s actually pretty weird how much it shows up along the coast when you consider that cold weather triggers it, not the heat or the sun. People dealing with this really have to stay out of the cold, since the disease basically shuts down circulation in the affected parts of the body—says Dr. Matucci Cerinic
Over the last few years, scleroderma has been spreading through the US—it’s a dangerous, hard-to-treat, and even deadly condition. It shows up as swelling and thickening of the skin until it gets hard, and that same thing eventually hits the internal organs too. Professor of medicine and rheumatology Marco Matucci Cerinic, who hails from Brač, teaches at a medical school in Florence and has been studying scleroderma for a long time.
A CONTINENTAL ISSUE
— We don't really know what causes this disease, so we can't say why it's becoming more common in the US, particularly in coastal regions. That frequency along the American coast is all the stranger when you realize cold weather triggers it, rather than warmth and sunshine. Patients have to be extremely careful with the cold, because the illness already kills the circulation in those specific areas. All of Europe is now launching a joint fight against this disease. Under the name Eustar, experts from across Europe are teaming up for research, and our representative is immunologist Dr. Duška Martinović at the Split Split hospital.
Symptoms usually show up first in the fingers—sometimes the toes, or both. The fingers start turning pale and eventually turn a deathly white as the skin hardens. Basically, the blood flow stops, which can lead to gangrene and amputation over time. That process spreads up the arms, then hits the face, before finally moving to the internal organs—affecting the digestive system, esophagus, causing lung fibrosis and heart arrhythmia, and it can even lead to total kidney failure.
There are two ways this plays out: a rapid version that can be fatal within four to five months, and a second type that develops over a lifetime and can last decades if managed with treatment. No age group is safe here—severe symptoms can hit little kids just as hard as adults.
UNCERTAIN OUTCOMES
Treatment is a bit of a gamble. They try using cytostatics, though at lower doses than what's used for cancer. They also use meds for circulation and to protect the stomach and esophagus—treating the symptoms—but there's still no guarantee the drugs will work. Autologous transplantation, basically resetting the immune system, seems to be much more successful. Stem cells are taken from the blood or bone marrow, purified using immunological agents to strip away the diseased layers, and then those healthy cells are put back into the body. These refreshed stem cells create a brand new, healthy immune response to the disease, according to Prof. Matucci Cerinic's explanation of how a cure might work.
Just like with the latest leukemia treatments, this method often leads to a cure—and even if it just pushes the disease back five or six years, that still leaves enough time for other treatment attempts.
The cause behind this disease is still a total mystery—so we have no clue why it’s popping up more often in the US, especially out in coastal areas. It’s actually pretty weird how much it shows up along the coast when you consider that cold weather triggers it, not the heat or the sun. People dealing with this really have to stay out of the cold, since the disease basically shuts down circulation in the affected parts of the body—says Dr. Matucci Cerinic
Over the last few years, scleroderma has been spreading through the US—it’s a dangerous, hard-to-treat, and even deadly condition. It shows up as swelling and thickening of the skin until it gets hard, and that same thing eventually hits the internal organs too. Professor of medicine and rheumatology Marco Matucci Cerinic, who hails from Brač, teaches at a medical school in Florence and has been studying scleroderma for a long time.
A CONTINENTAL ISSUE
— We don't really know what causes this disease, so we can't say why it's becoming more common in the US, particularly in coastal regions. That frequency along the American coast is all the stranger when you realize cold weather triggers it, rather than warmth and sunshine. Patients have to be extremely careful with the cold, because the illness already kills the circulation in those specific areas. All of Europe is now launching a joint fight against this disease. Under the name Eustar, experts from across Europe are teaming up for research, and our representative is immunologist Dr. Duška Martinović at the Split Split hospital.
Symptoms usually show up first in the fingers—sometimes the toes, or both. The fingers start turning pale and eventually turn a deathly white as the skin hardens. Basically, the blood flow stops, which can lead to gangrene and amputation over time. That process spreads up the arms, then hits the face, before finally moving to the internal organs—affecting the digestive system, esophagus, causing lung fibrosis and heart arrhythmia, and it can even lead to total kidney failure.
There are two ways this plays out: a rapid version that can be fatal within four to five months, and a second type that develops over a lifetime and can last decades if managed with treatment. No age group is safe here—severe symptoms can hit little kids just as hard as adults.
UNCERTAIN OUTCOMES
Treatment is a bit of a gamble. They try using cytostatics, though at lower doses than what's used for cancer. They also use meds for circulation and to protect the stomach and esophagus—treating the symptoms—but there's still no guarantee the drugs will work. Autologous transplantation, basically resetting the immune system, seems to be much more successful. Stem cells are taken from the blood or bone marrow, purified using immunological agents to strip away the diseased layers, and then those healthy cells are put back into the body. These refreshed stem cells create a brand new, healthy immune response to the disease, according to Prof. Matucci Cerinic's explanation of how a cure might work.
Just like with the latest leukemia treatments, this method often leads to a cure—and even if it just pushes the disease back five or six years, that still leaves enough time for other treatment attempts.
Scleroderma: Morphea vs. Systemic Diagnosis
in Health ·
Brian Campbell6 said:So, someone really close to me is battling this disease. When they first got the Diagnosis, the doctors were basically counting down—saying they had maybe six months to a year and a half left. Well, it’s been 14 years since then, so I guess the prognosis was... off by a little bit.
Anyway, I’m looking to hear about your experiences and what you all know—specifically if there’s any hope for a cure, or even just getting things under control.
The lab results are pretty rough, and honestly, the symptoms seem to be getting worse as the years go by. We're talking joint pain, skin spots, that whole thing...
I heard there's some kind of medication being tested in Italy right now that’s supposedly showing some good results.
Any insight or help at all would mean the world to me.
Thanks.
You can't cure it, but you can definitely manage it.
I've had localized scleroderma (just on one leg) since I was 7, and now I'm 36.
Back in the early stages before it stabilized, I was on corticosteroid injections. After that—thank God—the disease stopped progressing. I still have some lingering effects, though; my leg is about 1.5-2 cm shorter and thinner, with no subcutaneous fat left. But with an insert, I walk fine and do everything normally. The only thing is I can't really wear skirts or anything like that. I'm not even taking meds for SKL anymore. My ANA is negative.
I'm guessing your loved one has systemic scleroderma—you know, affecting the whole body. What's the name of that drug? You've gotta try everything—maybe it'll work for them. Back in the day, there were no treatments at all, so it's honestly a miracle mine actually stopped.
I read in Free California that SKL can be carried by ticks on sheep over on a Dalmatian island. When my disease first started, I actually was on a Dalmatian island. Did your loved one have any connection to those islands or ticks? I can try to dig up that article if you want.
Biologics: Enbrel, Remicade, Humira, Actemra...
in Health ·
wanderinglynx24 said:The medication is pretty pricey and only recently made it onto the approved list (you can check the details on the Medicare website).
Approval usually depends on which hospital district you live in—for instance, if you’re based in Indianapolis, your local hospital is the one responsible for covering it. Since this stuff is incredibly expensive and hospital budgets are tight,
getting access is actually a bit of an uphill battle. They generally require you to exhaust every other treatment option first; only when those fail can you even start the conversation about this specific drug. In my case, since I'm dealing with diet-related issues, it was a slightly smoother process, but honestly, it doesn't change much after spending three years cycling through corticosteroids and Methotrexate. Corticosteroids definitely do the heavy lifting, but you aren't supposed to stay on them for very long.
At the end of the day, you have to trust your doctors; they know the clinical landscape better than anyone. There is definitely reason to be optimistic, though, because before this drug came along, managing this condition was a nightmare. Of course, it isn't a silver bullet—there are side effects starting to surface, likely because it's relatively new. When you consider that we're talking about biologics (genetic-based drugs), the uncertainty can be a little intimidating. These are often called "smart drugs," and there is a massive amount of hope riding on them.
I hope this gives you at least a little bit of clarity. You’re going to need a lot of patience dealing with this. Fingers crossed for you.
Best.
Best.
Thanks, seriously!
What I really want to know is... what are the side effects for Enbrel?
Everyone talks about the good stuff, but nobody seems to mention the downsides.
How did things end up turning out with Methotrexate for your child? From your experience, what were the worst parts?
All I know is that it hits the liver, so I'm getting bloodwork done every two months.
And since it affects fertility, I have to be on birth control. Is there anything else I should be watching out for?
Thanks again, take care.
Biologics: Enbrel, Remicade, Humira, Actemra...
in Health ·
wanderinglynx24 said:My kid has been on this for about a year and a half to manage juvenile rheumatoid arthritis, and honestly, it’s been a game changer.
Since starting this treatment, she hasn't even needed to touch corticosteroids anymore.
Thanks for chiming in. I have RA myself—not juvenile, just regular adult onset—and I'm 35. Right now, I'm stuck on Methotrexate. I've heard about this therapy, but I just can't seem to get access to it. It feels like whenever you ask, they tell you "it's not for you yet" or that it's reserved for later on. But what does "later" actually mean? I'm at my limit with this daily pain. I've actually been out on disability for two weeks now and haven't felt any better. Today, I can barely even stand up without it hurting. My left elbow is acting up too. Either my joints lock up or the pain is just driving me crazy.
How is it administered? How did you guys manage to get the meds? Is it covered by Medicare or do you have to pay out of pocket? And how often do you take it? Thanks for any info
Do I have a right to access my medical records?
in Health ·
If we’re talking about the specialist, I’m not handing over a single test result. She can take a look, sure, and I could even make her a photocopy—but I’m keeping all my results myself so when I need to send copies to insurance or a medical board, I actually have them on hand!
They don't even use paper files anymore, either—she just pulls everything up on her computer when you walk in.
The only thing she ever asked was if I could make her a copy of my discharge papers from the Mayo Clinic, nothing else.
They don't even use paper files anymore, either—she just pulls everything up on her computer when you walk in.
The only thing she ever asked was if I could make her a copy of my discharge papers from the Mayo Clinic, nothing else.
Pulmonary hypertension
in Health ·
Thomas Jackson9 said:I mean, I know the system isn't exactly known for being generous, but I would be so incredibly grateful if they’d at least approve some kind of vocational retraining, because honestly, trying to start over from scratch is such an uphill battle😕 after nearly ten years of contributing to the workforce... and as for my old career, I might as well kiss that goodbye entirely... it feels like pensions are reserved only for those with deep pockets or people who are facing truly dire health crises...👎
Honestly, they really ought to be giving you that—no question about it.
Pulmonary hypertension
in Health ·
Thomas Jackson9 said:Hi there! I just received your private message, and I really wanted to say thank you so much for reaching out🙂I’ll be sure to get back to you once I have some actual news—basically, once I’ve cleared my next round of medical checkups and the official disability assessment from Social Security. To be honest, if there were any other way to handle this situation, I wouldn’t be looking at retirement at all... I can't help but feel like 28 is just a bit too young to be calling myself a retiree, don't you think? Anyway, I'll catch up with you next time I'm online. Warm regards!👋
Don't sweat it—it's all just paperwork anyway... you aren't exactly getting that Social Security check tomorrow, right?
Pulmonary hypertension
in Health ·
David Morris86;18338874 said:David Morris86 said:I check this forum every single day—but seriously, is everyone just silent? Did you all magically recover overnight? That’d be awesome, but I'm thinking maybe this gray weather just hit everyone with a wave of depression and nobody has the energy to even read or type. Come on, get moving—things will look up. At least with Pfizer, breathing feels a little easier. I'll swing by again tomorrow to see if you guys actually listened.🤷
Hey, David Morris86. How've you been? What's the latest?
I wanted to ask you—how old were you when you were diagnosed with RA and started dealing with PH? I've been battling RA for two years now.
Hormonal Contraception: The Pill [General Discussion]
in Women's Health ·
I mean, I’m totally with boldsurfer32 on this one—I never actually touched them until last year when my doctor basically forced my hand for health reasons. At first, I was constantly spiraling over a pulmonary embolism, you know? But now, I don't even stress about it. As long as my liver panels, coagulation tests, and antithrombin III come back clean every couple of months, I'll keep taking them. Plus, I don't smoke.
So, if someone doesn't smoke, they just need to get all those labs done, and if everything looks good, they can talk to their OB-GYN about starting birth control. Just check your bloodwork every few months, see the doctor every six, and it should be smooth sailing.
So, if someone doesn't smoke, they just need to get all those labs done, and if everything looks good, they can talk to their OB-GYN about starting birth control. Just check your bloodwork every few months, see the doctor every six, and it should be smooth sailing.
Biologics: Enbrel, Remicade, Humira, Actemra...
in Health ·
Sam Hall15 said:If you could write about why you take your medication, what your experience has been like, or any concerns you have regarding its use...
I haven't started on it yet, so I'm totally in the dark.
Biologics: Enbrel, Remicade, Humira, Actemra...
in Health ·
Scott Allen10 said:Honestly, Google clearly isn't your best friend here, because if you just type the name of the medication into the search bar, you’ll get nearly a million results... you can even find the official drug website itself. Maybe try doing a little digging before starting a new thread? It would be super helpful if you could google it first and then give us a more detailed breakdown in your opening post about what specific issues you're having with the meds...
No need to get all defensive right away. I was just asking nicely because I really wanted to hear from people who have actually used it—not here in the States, but back home. If you think the topic is stupid, feel free to just delete it.
Biologics: Enbrel, Remicade, Humira, Actemra...
in Health ·
Is anyone here actually using this medication? What’s the experience been like for you guys—any weird side effects I should watch out for? Also, what condition are you taking it for, how do you actually administer it, and what kind of damage does it do to the wallet?
Side effects of Ramipril?
in Health ·
Amanda Gomez47 said:Hey, have you actually checked your blood work lately? Has anything shifted since you started drinking?
I was reading up on it, and apparently, it can trigger leukopenia—basically dropping your white blood cell count—not to mention messing with your liver enzymes, creatinine, and all that other stuff...
But honestly, what really spooked me was the risk of catching hepatitis or some kind of serious inflammation. Just thinking about it totally kills my appetite for a drink.🙂
I get checked out every couple of months—everything looks good so far.