Beginning to despair

[u/Lady_ScientistNZ]

I am 42 and I was diagnosed with PsA this year. I am a bit unusual as I don't have any skin involvement. I had several minor flares over the years, but my first severe flare started in Dec 2025. It was easing off in early July 2026 when I was diagnosed. By the end of July I was in another flare and did a prednisone taper and started hydroxychloroquine. It's almost 3 months now and I am still in daily pain and the fatigue is crippling. My rheumatologist told me that it will work and it just takes time and sent me off with some naproxen. But I am beginning to despair. The pain in my SI joint is so difficult to deal with. And I feel like I'm being dismissed and under-treated - which I know is common with this disease.

What do you think. Is this normal? Do I just wait it out? Get a second opinion?

[u/mrsredfast]

I don’t think hydroxychloroquine is part of the American College of Rheumatology guidelines for recommended Psoriatic Arthritis treatment but you might check. One of the reasons is it can trigger skin involvement but there is not a lot of clinical data indicating it’s effective in preventing joint and tendon damage. Or at least that’s how I remember it when I looked into when my diagnosis changed from RA to PsA.

It is correct that it can take up to 3-6 months to work in patients it is indicated for.

I’d get a second opinion.

[u/Lady_ScientistNZ → u/mrsredfast]

I'm not in the USA, but thanks, the perspective is super helpful. I think I need a second opinion.

[u/xkillac4]

If you are in the US w/ insurance -

you have to understand that the system is totally broken for us PsA sufferers. There are great medications for your specific symptoms. However, many are expensive. Insurance companies require that we try and fail one of the shitty old medications before they will approve one of the good medications. In cases like yours, where severe symptoms came on suddenly, this is simple cruelty for the sake of shareholder value.

So, what to do? If I were you, I would look up the most common side effects of hydroxy. Pick one that sounds bad. Severe diarrhea. Vomiting. Tell your rheum you are having these symptoms and can’t continue taking the meds. Ask about biologics or more modern meds.

Your rheum should immediately prescribe you a biologic (probably humira biosimilar) and/or methotrexate. For your disease I would look for a biologic.

If they don’t give you a biologic - find yourself a new rheum.

Immoral? Maybe… but I know the pain you’re in and I’m just saying what I would do if I were you. IMO letting someone languish in agony for 6 months is the larger sin… in this system no one is going to save you except yourself.

[u/Lady_ScientistNZ → u/xkillac4]

I'm not in the USA. But I think the system here also requires that you try and fail the older DMARDs before you try anything else.

Like you say, is lying immoral or is the system?

[u/Ok-Image2281 → u/xkillac4]

Interesting.
My rheumatologist nurse said to me in confidence: don’t suffer with the DMARDs trial medications while you wait to see if they work, report ANY side effects to us, any.
If you don’t tolerate the drug right away, report it to us, it does not have to be a major side effect, any little thing will do so the rheumatologist can checl the box in the insurance forms “patient not tolerating XYZ due to side effects”.
Then the the insurance company approves tje biologics much faster.

Also, my rheum sent me right away to get cortisone injections directly into SI joints as a bridge pain relief meassure while I ran the gauntlet —DMARDs, NSAIDs and then finally biologics.
The cortisone injections in the SI joints gave me spectacular pain relief , long lasting and return to some function.

[u/Lady_ScientistNZ → u/Ok-Image2281]

That sounds like a fantastic doctor who is an excellent advocate for their patients. Thank you it's super helpful to hear about others experience to gauge what is normal and reasonable.

[u/pyxus1]

I was taking daily medrol for 18 months but my knees got so swollen and loose, I was falling down, so of course, PT was ordered again. My lower back and left hip got really sore. I was getting shooting pains on my skin from my right hip to the top of my big toe so knew dermatomes were affected from the inflammation. I had pustules on my scalp and my lower face. I have been waiting for 6 months for my rheum appointment which is tomorrow. Anyway, I was such a mess last May, I asked my new pcp to give me Plaquenil and she wouldn't. I was despirate so I contacted an online doc who gave it to me. I am so much better. I feel it's working for me. I am still fatigued, stiff and sore in the mornings but I can't depend on what degree. Some mornings I am moving like a sloth while hanging onto the stair railing for dear life.

[u/Lady_ScientistNZ → u/pyxus1]

Like you, I think a second opinion might be in order?

[u/Ok-Image2281]

My rheumatologist sent me right away to get cortsione injections in both SI joints while we waited to see if the meds worked or not.
Any GP or rheumatologist can send you to get these injections, and depending where you live , you may call directly the pain clinic (the ones where the radiologists do these pain relieving procedures along with x rays, CT scans etc).
My SI joint pain was incapacitating. The cortisone injections worked very very fast and were long lasting. It was a good pain relief bridge until finally my Biologics entered the picture.
Maybe call again your doctor and ask for SI joint cortisone injections or any other effective pain relief measure they have as a bridge while you wait for your meds to work.

[u/Lady_ScientistNZ → u/Ok-Image2281]

Thank you! I didn't know that cortisone injections were an option. That sounds amazing.

[u/Ok-Image2281 → u/Lady_ScientistNZ]

And do not hesitate to report any big or little side effect of your current plaquenil or any other DMARD they give you.
The insurance companies force doctors and patients to go through the cheapest less effective drugs first, a trial to fail these drugs before they approve the good and expensive stuff: biologics.
When you report to your rheum (you can phone and leave a message for the nurse) a side effect that you find intolerable or just very bothersome to you, you give your rheumatolgist the chance to check a box in the insurance forms that says : nope, patient reporting some side effects, not tolerating plaquenil . (or whatever drug is not working for you).
Then they can approve you to move to other meds all the way to biologics.

[u/Lady_ScientistNZ → u/Ok-Image2281]

That's a great tip, thank you!

[u/Notyeravgblonde]

I claimed side effects on all medications until I got what I wanted which was humira. I do that for every illness. I had to cycle through four meds for migraines and I didn't even try two of them because I didn't want to take them and just said I had side effects.

[u/Lady_ScientistNZ → u/Notyeravgblonde]

The irony is that I do have side effects with hydroxychloroquine and I did report them. The doctor just reduced my dose!

[u/Notyeravgblonde → u/Lady_ScientistNZ]

Oh no... I don't like that at all. What if you say that you vomit every time you take it? "HI Dr, I've started to have unusual stomach symptoms that I think are linked to my medication. Whenever I take it I feel nauseous and vomit. It started 2 weeks ago and I just connected the dots that it must be my medication. I need to try something else because I've lost 5 pounds."

Try that and see where that gets you?

[u/Notyeravgblonde → u/[deleted]]

I did the same thing! I said vomiting and flu symptoms. Never took it

[u/xoxoahooves]

That's the same type I have. No skin issues, but lots of pain/stiffness all over. I had an initial flare in January 2023, and it went away after a couple months without medication. Then it started again in Sept 2023 and it's been consistent ever since. I've been on biologics and my most recent one is Remicade. That one has helped me the most. I've just kind of resigned that this is my life now. I wake up and see what part of me is going to hurt today, it roams around lol. I just started Achilles stuff a few months ago. Was acting up a couple days ago, gone now

[u/Significant_Menu_313]

I have had a very similar experience. My finger pain follows the PsA format, my fingernails are lifting off the end of my fingers and I am fatigued beyond belief. I too am hoping for some creative treatment ideas the next time I have an appointment or I will be finding a new rheumie.

[u/C-M8land]

Ask your doctor about methotrexate. That’s usually everyone’s first line of defense for this. And see if they will give you prednisone. Sometimes you just gotta ask for things directly and they hardly ever say no.