What would be your first piece of advice to someone newly diagnosed with RA?

Please look back at your own experience and try to think if there’s anything YOU would have like to have been told

[GinaRoseD]

Breathe. Know that you will get through this. Document your symptoms. Do a food diary.Research. Let the doctor move aggressively to treat it. My hands, fingers, ankles etc, were damaged within a year of diagnosis.  Speak up. I was diagnosed 34 years ago. I am 48 now.

[Kjok in reply to GinaRoseD]

Hi Gina, I have been diagnosed 8 months ago, at age of 69, not on anything yet, had other health issues to deal with, I am currently just doing tons of supplements. When you say your hands, fingers etc. were damaged, can you explain what the damage was.  I am still gathering information and looking for a dr.  I had one who told me nothing about  RA.  My GP is trying to find new one.  Thanks to anyone who can answer my question. Trying not to get discouraged, but it's hard to come to this screeching halt.

[GinaRoseD in reply to Kjok]

The disease eats away at the cartilage of your joints. My fingers are disfigured and my wrists are almost fused. It turns into osteoarthritis which leads into more pain. Which is why you need to see a rheumatologist ASAP. This is not a disease to wait and see. I have had a great life, college , kids etc.. You just will learn to adjust. Take it day by day. Good luck and God bless

[Amy_Lee in reply to GinaRoseD]

Gina, I am very sorry to know your condition. Just within a year of diagnose, your joints were damaged? That is terrible.

[GinaRoseD in reply to Amy_Lee]

Yes. But remember back then it was "wait and see" before aggressive treatment. Now we know start aggressively which pretty much limits the damage.

[Amy_Lee in reply to Kjok]

Hi Kjok,

Gina is absolutely right to say that you need to be treated immediately to avoid any joints damaged. Joints damaged is irreversible therefore we have to avoid this. Our immune system is quick and aggressive, do bear in mind of that.

[Deb-h in reply to Kjok]

Are you close to a teaching hospital? If so, get there fast.

[dj2me]

Research research research and be your own best advocate

[Mairhi]

That you need to expect the unexpected. AND it will affect every part of your body, not just your joints.

[Fristrated]

Thank you for your common sense🙏

[Hidden]

What I wish I had known is....

It's NOT mind over matter anymore...You can't pretend it away...or pull yourself up by your boot straps...or push yourself through it. It's ok to nap. It's ok that you can't do what you used to. Wear a black wrist wrap of some kind when you have to be some place where people might shake your hand.

Slowing down was going to come sooner or later anyway. It just comes sooner for some of us.

And lastly, it takes time to find the right mix of meds that work for you. It's hard to be patient but the dr is going as fast as he/she can.

Gentle hugs to you all.

[Fristrated in reply to Hidden]

So so true,thanx for sharing,it's hard to believe that slowing down is part of life,but IT IS WHAT IT IS, hopefully one has some sort of supportive people all around them. IT IS SO TEMPTING TO BE A COUCH POTATOES, as the song goes,FIGHT,FIGHT,FIGHT, WITH ALL OF YOUR MIGHT, not easy,JUST TRUE

[Fristrated]

It seems to me,that RA IS definitely genetic, and if u want to live a quality of life,one has to give up major enjoyment eg:ike a margerita or salt or meat...or goodie deserts with lots of carbs. Then....in the case myself a female, putting on those tight stockings that keep the inflammation contained in your feet and ankles( in my case) difficult to not be depressed,but the options of not following a truly healthy diet is giant pain( exercise or not)

Diet and exercise are he MAINSTAY, WITH ENBREL ( or whatever)or whatever recipe your rheumy gives you,and then....constant blood tests....let's face it, the disease,as any disease sucks

[Penny-14]

Get ALL vaccinations done before starting treatment; especially the ones that are a live vaccine such as for shingles. You can't do the live vaccines after treatment has started.

[Deb-h]

That this a chronic illness that doesn't go away if it lasts longer than the first three years. The drugs take a long time to reach therapeutic levels in your system and that more often than not your blood work can be masked or not show what is truly going on. Keep track of any changes in a journal or on the computer. You can't remember everything you need to share with your doctor during your visit. Be your own best advocate. Fight for yourself and never, ever give up. Ask your doctor for the Vector C test - truest indicator I have ever seen. Record little changes in your health, i.e. more infections, low grade fevers, etc. Learn your triggers and know when to say time out I need rest. Find a good support group.... you are not alone.

[Kai--]

Kindly consider: 13 Bite-Size Thoughts for Autoimmuners -- Newly Diagnosed (or Not): healthunlocked.com/ra-warri...

[The post was originally a 'reply' under this post ("What would be your first piece of advice to someone newly diagnosed with RA?") under the heading: First piece of advice to anyone newly diagnosed with RA -- broken into 13 bite-size bits.]

Hope 🙏 it's useful to you & any autoimmuners interested in sharing thoughts 🤔. Best wishes on your autoimmune journey. 🙏 🍀 🌺 😌

[lovekittys]

Hi, be careful with any steroids you are given. Make sure they watch your A1C, I now have what they call steroid induced diabetes. The steroids do help, but just be careful with them. Good Luck and try to stay positive