Tell me about life with Rheumatoid Arthritis

[Anonymous]

OP here - Thank you so much for the responses! Some of the answers are very sad but it’s helpful to know why the drugs are so important.

To the PP who has a different autoimmune arthritis, what is it? Is there treatment that helps you?

[Anonymous]

Methotrexate and a biologic put my RA in remission. And a short initial couse of steroids. I don't have any pain anymore. I run and lift weights with no issues. If you don't treat it, it will get worse and worse. Pre biologics many people with RA ended up on disability. Why do that to yourself?

[Anonymous]

Anonymous wrote:
I have reversed my osteoarthritis with the elimination of sugar and dairy, and greatly reducing gluten. I also do frequent effective exercises recommended by my physical therapist. I wasn’t onboard with the recommended drugs and surgeries.

It’s taken a few months, but I succeeded.

You reversed RA?

[Anonymous]

Anonymous wrote:OP here - Thank you so much for the responses! Some of the answers are very sad but it’s helpful to know why the drugs are so important.

To the PP who has a different autoimmune arthritis, what is it? Is there treatment that helps you?

It's basically crohn's arthritis-there's a more formal term for it. Mine was in my hands and shoulders but then has been in remission. I'm fortunate in that mine is considered non degenerative. Mine seemed to just go away on it's own -- however, the drug treatments have many overlaps with those for ra

[Anonymous]

I have Psoriatic Arthritis (but generally not psoriasis, interestingly). Very similar to RA but presents a little differently—causing pain asymmetrically, in the smaller joints, and causes something called enthesis which is inflammation where bones and connective tissue meet. Over the 15 years I have had it (7 before diagnosed, 8 yrs since) the biologics are by far the best treatment.

My DR who is otherwise very conservative said that front-line treatment is a DMARD as soon as someone is diagnosed, so that any damage can be stopped or even reversed a bit. There’s a lot of damage that can happen before it’s symptomatic. The way he described it to me is that he’d like me to still be playing the piano in a decade, and i wouldn’t be able to without a DMARD.

For me, i had inflammation/bone loss that occurred prior to diagnosis, that has basically been reversed since I’ve been on DMARDs. It’s an incredibly outdated clinical recommendation to try and manage inflammatory arthritis with just steroids or pain meds. You should be on a DMARD, 100%. Read any clinical or patient education website.

Now, for DMARDs, I started with methotrexate, had to max out the meds, couldn’t handle losing 1 day a week to chemo brain and mouth ulcers, switched to humira, failed through in about 2 years, and have been on cosentyx for about 3/4 years. Had to double the dose, but still worth it.

I can hike, do yoga, play guitar and piano, stay awake until 10 pm, don’t get eye infections that can cause blindness, etc. Life changing. Please consider it. There’s so much benefit.

[Anonymous]

My MIL had it for 30+ years and died at 87 on unrelated issues. She had discomfort and took a variety of meds, but was reasonably active until COVID hit. So not a contribution to the meds discussion, but wanted to say it's not definitely a life shortener.

[Anonymous]

Did you have recurrent pregnancy loss? Many women with undiagnosed auto immune disease can't conceive easily too.

[Anonymous]

Anonymous wrote:

Anonymous wrote:
I have reversed my osteoarthritis with the elimination of sugar and dairy, and greatly reducing gluten. I also do frequent effective exercises recommended by my physical therapist. I wasn’t onboard with the recommended drugs and surgeries.

It’s taken a few months, but I succeeded.

You reversed RA?

Osteoarthritis is a totally different disease

[Anonymous]

My grandmother had it and it crippled her, it was awful to see. There are much better treatments now. You should

[Anonymous]

Anonymous wrote:Did you have recurrent pregnancy loss? Many women with undiagnosed auto immune disease can't conceive easily too.

OP here - I did actually. Many miscarriages. I have wondered now whether it was because of RA and if my doctors had paid more attention to treating me maybe could have diagnosed much earlier. My ob practice never even tried to figure out what was going on with all the miscarriages. Just attributed to older age.

[Anonymous]

Anonymous wrote:I went through a terrible period where I thought I had RA. (I actually have a different autoimmune arthritis that is prayerfully much more manageable). I did a deep dive into the research and there are some books out on people who dramatically improved (cured) their RA with an all natural vegan diet with no oils, sugar, etc. That being said, I would both take the biologics and do a hard-core diet cleanup, for the greatest chance of an extended quality of life. Also, don't push your joints with too much vigorous exercise because yhat can also lead to damage...swimming would be a great exercise to add to your routine.

Could you share the name of it? I’d like to ask my doctor if I might have that. My finger joints are swollen and have been but no doctor seems to know the cause.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP here - Thank you so much for the responses! Some of the answers are very sad but it’s helpful to know why the drugs are so important.

To the PP who has a different autoimmune arthritis, what is it? Is there treatment that helps you?

It's basically crohn's arthritis-there's a more formal term for it. Mine was in my hands and shoulders but then has been in remission. I'm fortunate in that mine is considered non degenerative. Mine seemed to just go away on it's own -- however, the drug treatments have many overlaps with those for ra

Does this mean you have Crohn’s?

I have arthritis in my hands and my shoulders have issues…

[Anonymous]

I have PsA. I was afraid of the potential side effects of biologics, but they really are a game changer.

A word of caution about delaying medication. I was unemployed and underemployed for 10 months, and stopped some of my medication. I am going to see a GI in another month, but it appears that my year of limited medical care has brought on Crohn’s disease, or something very similar to it. The risk of not taking medication is very high, in my experience. I have insurance starting next month, but it will take a while to get this sorted out. I’ll likely be dealing with this for the rest of my life.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I went through a terrible period where I thought I had RA. (I actually have a different autoimmune arthritis that is prayerfully much more manageable). I did a deep dive into the research and there are some books out on people who dramatically improved (cured) their RA with an all natural vegan diet with no oils, sugar, etc. That being said, I would both take the biologics and do a hard-core diet cleanup, for the greatest chance of an extended quality of life. Also, don't push your joints with too much vigorous exercise because yhat can also lead to damage...swimming would be a great exercise to add to your routine.

Could you share the name of it? I’d like to ask my doctor if I might have that. My finger joints are swollen and have been but no doctor seems to know the cause.

In my experience, rheumatologists aren’t always big on pinning down an exact diagnosis. I was diagnosed with inflammatory arthritis, then likely rheumatoid arthritis, then psoriatic arthritis. It was a 6 year progression. The treatment is pretty much the same for all, and identifying the specific disease name isn’t all that helpful. Over time, the answer will become clear.

[Anonymous]

As I read more about my health issues (swollen joints, tinnitus, skin issues, and more), I keep reading inflammation is the cause.

Much of what people are writing here supports that inflammation is a huge issue—PSA, Crohn’s, RA, etc.

I read there is some connection between hearing loss and RA and inflammation can cause both.

Thank you for this thread. This made me consider visiting a different rheumatologist because she seems to consider only RA yet I never heard about arthritis related to Crohn’s Disease. All I know is my joints are swollen and no doctor has given me a definitive answer despite years of visiting different doctors.

There’s interesting research about the brain’s microglia going haywire due to inflammation and causing health issues. Worth a google to read the studies.