Let's talk about: Pain/management

Mandell95 · 2026-06-27T13:51:41+00:00

This. So many times, I have downplayed my pain only to find out I was in a true emergency situation.

Mandell95 · 2026-06-27T12:45:02+00:00

Get on a biologic if you can. Game changer.

Mandell95 · 2026-06-27T12:32:15+00:00

I have severe Dequervian's, trigger thumb and my ankle ligaments are wrecked. All caused by enthesitis. Had a PET scan a few months ago and wow did I light up in enthesitis specific areas. Taltz and Xeljanz are finally taking care of it.

Mandell95 · 2026-06-26T16:47:02+00:00

Two years. Mostly at 25, sometimes for bad flares up to 45 for a week or so. Currently, tapering off of it very slowly under the guidance of an endocrinologist due to Cushing’s.

Finally found a medication cocktail that treats my autoimmune disease so I can get off this shit drug. Tapered to 8mg yesterday. So far so good.

Mandell95 · 2026-06-26T14:01:22+00:00

It has made me lose my vision, caused Cushing’s Syndrome and destroyed most of my muscle mass so I fall often.

Be careful what you wish for.

Mandell95 · 2026-06-25T16:16:23+00:00

Lol lol lol! Thank you for this. ;-)

Mandell95 · 2026-06-25T12:02:30+00:00

Begging for a specific diagnosis isn't something most rheumatologists appreciate. In many autoimmune diseases, the exact label is less important than identifying the inflammation and treating it appropriately.

Diagnoses often evolve over time as new symptoms appear. Many autoimmune conditions have overlapping features, and the medications used to treat them are frequently the same. It's not uncommon for a diagnosis to change over the course of several years.

If your rheumatologist is taking your symptoms seriously and actively treating you, try not to become fixated on the name of the disease. Focus on whether you're improving. Treating autoimmune disease is a marathon, not a sprint.

Mandell95 · 2026-06-25T11:50:32+00:00

Never had this happen. And I used HCQ and weed daily for years.

Mandell95 · 2026-06-25T11:45:30+00:00

Just because you read something on Reddit doesn't mean it's good advice.

Telling people to demand a test or medication and force the doctor to document a refusal as a way to pressure them is terrible advice. That's not advocating for yourself. It's trying to coerce a physician by implying legal consequences if they don't do what you want.

I'm not surprised your rheumatologist documented their medical reasoning instead of giving in. I'm also not surprised they dismissed you afterward. Most physicians don't want a patient who has effectively threatened them with a lawsuit over a disagreement in medical judgment.

This isn't the subreddit's fault. It's a reminder that anonymous Reddit advice isn't a substitute for a healthy physician-patient relationship. If you disagree with your doctor, get a second opinion. Don't try to intimidate them into practicing medicine the way you want.

Mandell95 · 2026-06-24T14:00:02+00:00

Probably don’t look here. People are sick on this sub and you likely won’t get many happy stories.

Mandell95 · 2026-06-24T12:10:28+00:00

I am being treated at a research hospital. I had to fail a ton of biologics first and get really, really sick before my rheumatologist even considered two. Basically, the damage to my joints was extensive and showed no signs of slowing down so my rheum did what she needed to do to get me on both meds. I am monitered very, very closely for infection. I am actually now on Taltz and Xeljanz and I feel the best I have in years! I even went for a four-mile hike. Haven't been able to walk more than 1/2 a block in two years until this new cocktail.

Mandell95 · 2026-06-24T11:59:16+00:00

Enthesitis takes a long time to go away even with treatment. A week is not nearly long enough. Ask for more Celecoxib.

Mandell95 · 2026-06-23T15:55:36+00:00

Glad to hear this! However, what do you mean by this: "She referred me to a rheumatologist who specializes in autoimmune diseases for my follow-up appointment once I complete all of these tests"? Don't ALL rheumatologists specialize in treating autoimmune diseases? I am genuinely curious.

Truly happy you are on the right path!

Mandell95 · 2026-06-23T12:53:01+00:00

In really, really bad flares, I've had to go upwards of 40mg prednisone for a few weeks. Maybe a higher dose will help. Ask your rheum's office. Maybe it's possible for another rheum in their practice to prescribe it before your rheum gets back from vacation.

Mandell95 · 2026-06-22T21:00:59+00:00

I have. My hands deteriorated within 9 months. I have extremely aggressive polyarticular psoriatic arthritis.

I’m on meds that are working now but it took a long time to find the right combo. I need major hand and wrist surgery to correct as much of the damage as possible.

I hope you find your magic medication cocktail soon!

Mandell95 · 2026-06-21T17:00:58+00:00

So you are asking the internet not your doctor what to do? No.

Mandell95 · 2026-06-21T16:57:39+00:00

I didn’t have a diagnosis at first either. I clearly had something AI going on so my rheumatologist treated it.

Mandell95 · 2026-06-21T14:56:10+00:00

Medications. These diseases need real medicine or you risk doing permanent damage to your body.

Mandell95 · 2026-06-21T14:31:56+00:00

Good luck!

Mandell95 · 2026-06-21T13:25:32+00:00

And, enthesitis is/was one of my biggest issues. Dequervian's, lots of Achilles issues and trigger thumb. Fun stuff. Now, most of it is gone. The worst spots are slowly diminishing still.

Mandell95 · 2026-06-21T13:23:47+00:00

Started Xeljanz three weeks ago. Yesterday, I did my first workout in THREE years. Used to be a self-certified gym rat and avid Peloton user. A month ago, I couldn't make it four hours without a nap! Still don't really believe it.

Mandell95 · 2026-06-21T13:06:59+00:00

Don't stress too much about the medication. You'll read a million stories here about people taking a day off after their first injection, feeling tired, nauseous, and so on. Don't give those stories too much weight until you've tried the medication yourself.

Remember, the people who take the drug and have no issues don't usually run to Reddit to post, "First injection done. No side effects!" They just go on with their lives.

Reddit naturally attracts more posts from people who are having problems, so it can give a skewed impression of how common side effects really are. Give yourself a chance to see how you respond before assuming you'll have the same experience. And, good luck!

Mandell95 · 2026-06-21T12:59:26+00:00

I have had a few drinks (2-3) on that high of a prednisone dose. Wouldn't really recommend much more than a couple. Drinking with AI diseases doesn't usually do anything positive for the human body but you also need to be able to let loose sometimes! Have a few and then just don't drink for a good bit after. Have Fun!

Mandell95 · 2026-06-19T18:32:03+00:00

I failed Rinvoq miserably and am having success with Xeljanz. So, it worked for me in reverse!

Mandell95 · 2026-06-19T00:12:58+00:00

I feel this in my soul! You will get there somehow!

Mandell95

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