My better half was recently diagnosed with RA. Whatever they specifically look for in blood work was very elevated and she basically matches all the early symptoms. She's only 34, so understandably she's been a bit down the last few days since she got the bloodwork back.
She has been referred to a specialist, so we are waiting for their office to call us back and get her in.
Mainly curious if anyone here, or any family members, have been diagnosed and if you might have any words of wisdom.
Not exactly the same, but I have Psoriatic Arthritis. I'm 28, and was diagnosed at 22, so I can definitely relate to the "I'm too young for this!" feeling. For me, finding a good medication was key, I ended up on Enbrel after trying Simponi (did nothing) and Humira (extreme fatigue side effects).
The best advice I can give is KEEP MOVING- it's going to hurt sometimes, things will ache and sometimes she'll wake up feeling 3x her age, but it will only get worse if you don't move. This also goes for the medical process, if her rheumatologist isn't moving things forward find a different one, and don't give up until she's at a point that she feels is sustainable.
I've dealt with arthritis since my knee blew up when I was 15. That was 24 years ago. Not sure what flavor arthritis that is. When it hurts, ice. Pack in ice Ibuprofen will only work so long, so save it for the days when the pain is beyond belief. You will have to learn to harden the berk up.
My MIL has RA. My wife takes after her quite a bit, and has shown some symptoms but tests have all come back negative for now (thankfully). Anyway, the MIL has prescription meds that help, but they do seem to lose effectiveness over long periods of time, and it took some rough trial and error to find the right one in the right dosage. She's also very careful with her diet to avoid foods that contribute to inflammation. She needs a lot of rest. She stays pretty active too.
All of this is palliative care. She still has pain, but the meds/diet/exercise help to dull it enough for her to live a fairly normal life.
EDIT: This response was for appleseed.
Rheumatoid arthritis is an auto-immune disorder with all kinds of nasty effects. Literal deformation of joints, heart disease, severe symptoms can take anywhere from 10-15 years removed from your typical lifespan. Because it's an auto-immune disease it makes the patient much more likely to suffer from other complications.
It's far different than just having arthritis in a joint because of injury, for example.
STM317 said:My MIL has RA. My wife takes after her quite a bit, and has shown some symptoms but tests have all come back negative for now (thankfully). Anyway, the MIL has prescription meds that help, but they do seem to lose effectiveness over long periods of time, and it took some rough trial and error to find the right one in the right dosage. She's also very careful with her diet to avoid foods that contribute to inflammation. She needs a lot of rest. She stays pretty active too.
All of this is palliative care. She still has pain, but the meds/diet/exercise help to dull it enough for her to live a fairly normal life.
Yes, same with my girlfriend and her mother. Her mother was diagnosed with MS years ago, and my girlfriend actually underwent testing for it about 1.5-2 years ago, but came back negative. We're starting to think that was the beginning of her symptoms, actually RA instead of MS.
My former business partner had Ankylosing Spondylitis, which is similar (in that it's a form of Arthritis), and the only time he wasn't complaining about it was when he was so busy at our shop to not stop moving. Not to diminish what he felt, but it drained on our relationship to hear about it all the time but to have him not do anything to make it better. RA isn't quite as extreme, and there are many more people with it than AS, so finding a successful treatment regimen should be pretty straightforward.
Just be the best support system you can, and keep her busy. It can be really hard to get the motivation to even get out of bed.
I will echo what others have said about the pain- there will always be some, and I could name 60 things that hurt right now (PSA vs RA but still, first hand experience hopefully is worth hearing about). That said, today is a pretty good day, and I feel fine, relatively speaking- on really bad days I'll take some sort of NSAID, but I try to keep that to only a few times a year. It doesn't have to turn you into somebody like stylingle's coworker, most people don't know I have it unless they ask about the marks on my forehead, which is the most obvious place that I show signs of Psoriasis.
For me at least, the diagnosis was sort of a relief- I had been hurting for a while, and being able to assign a cause to it instead of "maybe everyone feels like this and I'm just being a Bob Costas" was a confirmation that helped me move forward.
My mother was diagnosed with R/A about a year ago. It was most inflamed around her thumb--- constant pretty severe pain. Her Rheumatologist put her on a schedule of drugs that were actually a type of chemotherapy. The drugs were horrid, she lost energy, lost her appetite and my 4'11" Mom was soon under her H.S. weight. (115 lbs) She was miserable on the meds. Then she developed a 104 degree fever and had to be sent to the hospital. As it turns out, the R/A drugs also lower your immune system-- -on top of all of the other horrid side effects. After going through round after round of tests, her doctors took her off the R/A medications, as they were doing more harm than good.
After she got home, I bought her some CBD ointment--- sort of like Ben Gay, but made from Hemp oil extract. The ointment works well in taking the pain away, but is temporary, and there is no claim that it's actually doing anything to reverse the R/A. (as the pharmaceuticals claim) So far, so good though. Since going off the drugs, the R/A hasn't really returned. She still has a bit of pain, but the ointment helps with that. Now the doctors are thinking it may not have been R/A after all!
I'd be wary with the drugs they prescribe, as the side-effects can be severe. I'd keep all options on the table, and discuss with her Doctors. Hopefully the meds work for her---- they sure didn't for my Mom.
Here's the ointment I mentioned. No THC, no high, no side effects. It does help though.
Yes, RA and regular arthritis really aren't comparable, they're night and day. RA, as noted, is an auto-immune disease.
My college girlfriend had JRA (juvenile RA) . She had both hips replaced when she was a kid, neck fusion, etc... It wasn't pretty. She did well for herself, but had complications. This was 25 years ago. They have made a lot of advancements since then.
I have Crohns', which is an auto-immune disease too. It's not uncommon for people suffering from Crohns' to have signs of RA (or full blown disease). Thankfully, with my Crohns' in remission, I don't have full blown anything, but definitely have signs of joint problems. However, the medication they use for the two diseases are identical, so I haven't had RA testing done in years because if I have it I'm being fully treated for it anyway.
Very sorry to hear about the diagnosis. But hang in there. There are drugs that really do wonders now. Humira is a big one. The post above about the side effect of extreme fatigue is highly unusual. I've been on it for 10 or 11 years now (I was an early adopter of it) and have asked a bazillion questions about it. The real "side effect" to worry about is a reduced immune system, which leaves you open to infection. My doctors constantly are on my back to be careful about getting sick, especially upper respiratory infections. But other than that, it's been a miracle drug for me. Hope it can be for your wife too!
Klayfish said:There are drugs that really do wonders now. Humira is a big one. The post above about the side effect of extreme fatigue is highly unusual. I've been on it for 10 or 11 years now (I was an early adopter of it) and have asked a bazillion questions about it. The real "side effect" to worry about is a reduced immune system, which leaves you open to infection. My doctors constantly are on my back to be careful about getting sick, especially upper respiratory infections. But other than that, it's been a miracle drug for me. Hope it can be for your wife too!
Absolutely, I didn't mean to imply that was typical for everyone- just that it was for me and we kept shuffling things until something worked.
My wife was just diagnosed with RA a couple of months ago. She's in her early 40's. Took a long time and a lot of tests to nail it down and she was really hurting by the time it was figured out. It mostly shows up in her shoulders. She's on methotrexate weekly and a daily dose of prednisone, but they're still trying different meds.
The treatment has made a big difference so far - before, she couldn't lift her arms above her head and now she's just a little creaky. She's phyisically strong and fairly active, but I don't think she'll be running any more marathons.
z31maniac said:EDIT: This response was for appleseed.
Rheumatoid arthritis is an auto-immune disorder with all kinds of nasty effects. Literal deformation of joints, heart disease, severe symptoms can take anywhere from 10-15 years removed from your typical lifespan. Because it's an auto-immune disease it makes the patient much more likely to suffer from other complications.
It's far different than just having arthritis in a joint because of injury, for example.
Thanks for posting that so I don;t have to.
RA has some amazing drugs available now. They will only get better in the next couple years as well. I hear doctors sometimes say they prefer treating RA to Osto because the drugs are that much better.
¯\_(ツ)_/¯ said:Klayfish said:There are drugs that really do wonders now. Humira is a big one. The post above about the side effect of extreme fatigue is highly unusual. I've been on it for 10 or 11 years now (I was an early adopter of it) and have asked a bazillion questions about it. The real "side effect" to worry about is a reduced immune system, which leaves you open to infection. My doctors constantly are on my back to be careful about getting sick, especially upper respiratory infections. But other than that, it's been a miracle drug for me. Hope it can be for your wife too!
Absolutely, I didn't mean to imply that was typical for everyone- just that it was for me and we kept shuffling things until something worked.
Yep, I gotcha. People can have strange reactions to different drugs. When I was first diagnosed, they put me on Remicade (also used for RA). I was fine with it for about a year, then I started developing bad itching during the infusion. Then it progressed to getting very flush. Then it progressed to difficulty breathing...they nearly hospitalized me last time we tried it. They switched me to Humira 10 or 11 years ago, and it's been beyond phenomenal. But damn, that injection pen huts like a mofo.
Keith Tanner said:My wife was just diagnosed with RA a couple of months ago. She's in her early 40's. Took a long time and a lot of tests to nail it down and she was really hurting by the time it was figured out. It mostly shows up in her shoulders. She's on methotrexate weekly and a daily dose of prednisone, but they're still trying different meds.
The treatment has made a big difference so far - before, she couldn't lift her arms above her head and now she's just a little creaky. She's phyisically strong and fairly active, but I don't think she'll be running any more marathons.
Ugh...prednisone. It was a miracle worker for the first month or two after my diagnosis...but then the side effects kicked in and it was brutal, I couldn't wait to get off it. Hope they find something for her soon!
I worry that may be the cause of my constant ankle pain, gout treatment has done nothing for it.
Thanks for all the info everyone. Her PCP kind of told her the same thing, that there are lots of really good treatments available now. Of course, she was the one diagnosed not me, so I understand why she's bummed.
I keep trying to remind her that we have really great insurance through my work and we will get it figured out.
Thanks, everyone fir the clarification. I hand no idea there was a more sour flavor. I have my own auto-immune disease. I would wish any of it on anyone.
My aunt had RA but she lived to 92. It deformed her hands badly but it only stopped her from driving. Of course, there wasn’t any real treatment back in the 70s when she was diagnosed. There are much better treatments now.
Prednisone is not good for you long term so try to find a biologic or something else that helps.
Best wishes!
Rheumatoid Disease, perhaps more accurate than RA as it is truly an auto immune connective tissue disorder. In English that means it impacts skin, tendons, joints, anything with connective tissue in it. Your body attacks its own connective tissue, essentially. The strategy is typically to prevent damage and maintain joint range of motion. You want her seeing a smart rheumatologist, who she will get to know very well until they retire or she dies of old age.
All, and I do mean ALL the drugs for rheumatoid are nasty, a lot of them are old chemotherapy drugs. Trick is to get the right meds, in the right combination, where it mediates the immune response adequately for you to have a life, and does not make your liver turn into cottage cheese or something else untoward. This is different for every single person, and changes over the course of the disease. Some people are just on methotrexate or some other old school drug, and it works for a long time, others require more aggressive treatment. The immune system is out of whack, and the meds keep it tamped down. The meds are going to suppress the entire immune system, so people under treatment are more likely to get infections. When they do get infections, they may not get the redness and other signs of infection, so the infection can sort of take off before you are wise to it.
To put it in GRM terms
Imagine you have a car with no rustproofing and you are going to move to Michigan with salty roads. You would want to stay on top of washing the undercarriage, or your car rots out from under you, because rust never sleeps. Same deal with rheumatoid. It is always working on you, it is just a matter of mitigating the damage. You have to keep moving, or your joints freeze up on you. The old adage, if you don't use it you lose it, counts double for rheumatoid patients. You don't want to wear the joints out any faster than the disease is doing, so you stay away from running or other impact type of exercises. Better off with yoga, pilates, stationary bike, swimming, that sort of stuff.
Read up on it, find an RA support group, do all you can to educate yourself and act as her advocate in her treatment.
If you are on prednisone, be advised that you DO NOT want to just stop taking it. You have to taper off that scheisse or it is liable to kill your ass.
I also had RA as a kid, in my knees. Showed up around the time I was 4, this was in the 70s when Motrin was a prescription drug. Fortunately for me it went away as I got older, and by the time I was 10 or 12 it was gone. Auto-immune diseases tend to go in clumps though, so later on I wound up with Crohn's, for which I take Remicade now.
I'll reiterate the statements about modern drugs -- they have revolutionized auto-immune care. The "biologics" (Remicade, Humira, a number of others) are much more targeted than the previous generation of drugs, they work better to suppress disease symptoms and they have many fewer side effects.
Another thing to keep in mind is that auto-immune diseases are very personal, they vary a lot in terms of severity, mixes of symptoms, etc.
Toebra said:
All, and I do mean ALL the drugs for rheumatoid are nasty,
I'm 100% with you on everything you said except that. Humira is a live saver, and Remicade is for many too. I had a very unusual side reaction to Remicade, so I've been on Humira for over a decade now, but generally speaking there's nothing nasty about them. Yes, people on these biologics are more prone to infection, but using some common sense can go a long way with that. Without Humira, I wouldn't be where I am today...which is in incredible physical condition, and in deep remission with Crohn's. And I know there are many, many people with RA that have similar stories.
Thanks for the additional info!
Apparently here PCP told her it could take up to 8 weeks to get in with the specialist. Apparently OKC has much fewer EVERYTHING in the healthcare sector than what we are used to in Tulsa.
It took 1.5 weeks to get in with here PCP and I used to be able to get in the same day back in Tulsa.
Frustrating.
The newer stuff works great, no doubt, with much better side effect profiles for many more people than what has been used, a lot more good days than bad when using them. As you say, the biologics are better, easier to come up with a med profile that is tolerable and works for people, many of whom had reached the end of the formulary without much help, but all that stuff is nasty. For the drugs to do what they do, they cause some degree of immune suppression, which can have some pretty catastrophic effects. I appreciate the leap forward they have proven to be, but I still feel very fortunate that I am unlikely to find out myself the risks and benefits of the anti TNF class of meds.
Toebra said:The newer stuff works great, no doubt, with much better side effect profiles for many more people than what has been used, a lot more good days than bad when using them. As you say, the biologics are better, easier to come up with a med profile that is tolerable and works for people, many of whom had reached the end of the formulary without much help, but all that stuff is nasty. For the drugs to do what they do, they cause some degree of immune suppression, which can have some pretty catastrophic effects. I appreciate the leap forward they have proven to be, but I still feel very fortunate that I am unlikely to find out myself the risks and benefits of the anti TNF class of meds.
Yep, agree. Every time I go to my gastroenterologist, I'm reminded over and over and over and over and over that I have a weakened immune system. So there's that. Knock on wood, the past several years have been good...but I've had many upper respiratory infections, pneumonia, etc... However, generally speaking the modern medicines are fabulous, and there's more on the horizon.
I will say that the injection pen for Humira hurts like a bastard. It's one of those spring loaded jobs...put it against your thigh, press the button and WHACK!! Since I'm really into working out, I'm pretty lean and don't have a lot of "padding". The options are do it in the upper thigh or in the abdomen. I tried the abdomen once....never again. But the thigh still isn't pleasant either.
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