Tell me about life with Rheumatoid Arthritis

[Anonymous]

Anonymous wrote: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.

In my experience, many doctors do not consider spondyloarthritis for women because of the outdated notion that it is a men's autoimmune disease. Spondyloarthritis encompasses a number of sub-types. Ankylosing spondylitis is generally the most extreme form, and men are more prone to get it. Other sub-types are psoriatic arthritis, which occurs with psoriasis; enteropathic spondyloarthritis, which occurs with Crohn's and inflammatory bowel disease; and reactive arthritis, generally transitory and occurring after an infection. There is also what used to be called undifferentiated spondyloarthritis, which is now more refined to axial (affecting mostly the spine and back) and peripheral (affecting joints more distant from the spine like shoulders and neck).

There is a genetic test they do for spondyloarthritis for HLA B27. A large mistake many less informed doctors make is to think a patient who is negative for this gene does not have spondyloarthritis--this is now known not to be true, though a positive test points to a stronger possibility of having it; positive rates, however, are quite high for the ankylosing spondylitis subtype. An MRI of the sacroiliac joints can confirm a diagnosis, but a skilled rheumatologist can make a pretty accurate clinical diagnosis.

The number one misdiagnosis for women with spondyloarthritis is fibromyalgia.

[Anonymous]

I have RA and have been on biological for13 years. There has been no joint destruction progression during that time. I could barely move when I was first diagnosed.Biologics mean I am living a normal life.

[Anonymous]

Anonymous wrote: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.

I’ve always heard if you have one autoimmune disease, you will likely develop more. I have celiac disease and militantly stick to a gf diet but did develop 3 more (one of which is RA).

[Anonymous]

I’m not sure if I have RA (yet?)—my rheumatologist is calling it PsA for now. I’ve been on a variety of meds—failed or had reactions to them. Currently on Cimzia, but have recently done a few steroid tapers (6/5/4/3/2/1) due to unbearable joint pain.

Just took my next dose a week early and doing the “heal your gut” no sugar/gluten thing to see if that helps. All tests point to zero gluten sensitivity, but it can’t hurt.

How does your rheumatologist measure joint damage? (Do they?)

[Anonymous]

Anonymous wrote:My rheumatologist says to get on medicine. The earlier the better so I would not mess around and wait if it were me.

I have high RA factor and swollen joints but it’s not yet RA. We are in wait and see.

My doctor also told me eating sugar makes RA worse for a lot of her patients. I have reduced my sugar to almost zero.


If you have a high RA factor how did your doctor determine you don’t have RA yet?
If I drink wine or eat sugary foods, I wake up in pain.

My understanding is that RA and other autoimmune diseases can go into remission. A supportive autoimmune diet — without sugars — can help along with any medicine a doctor says to take.

My doctor is supportive of nutrition helping. For example, extra virgin olive oil contains components in ibuprofen so it’s anti-inflammatory. I incorporate two tablespoons a day. Doctor says go for it if it helps and it does.

[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.

what are examples of what you do eat?

[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.

Learn to read dumb dumb. Osteoarthritis and RA are not equal.

[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

Enteropathic spondyloarthritis