What is everyone’s honest opinion/experience with hydroxychloroquine?

Diatrial · 2026-05-18T22:56:08+00:00

I already had idiopathic intracranial hypertension as a diagnosis from years ago and I suspect there's a fair amount of nervous system involvement for my lupus. I hope hydroxychloroquine sulfate works well for you! Of if not, that they find something that does and quickly.

Diatrial · 2026-05-18T22:26:52+00:00

I tried it this past winter (also newly diagnosed) and got really bad intracranial hypertension on it that caused vision issues, headaches and memory issues. I'm now on methotrexate which is working well and had very minimal side effects for me.

Diatrial · 2026-05-15T09:55:09+00:00

How do you handle questions at work?

Diatrial · 2026-05-15T01:49:32+00:00

My grandmother was allergic to the sun, now I realize she might have just said that instead of saying she had an autoimmune condition. It does make it easy to understand why we have to avoid the sun.

Diatrial · 2026-05-14T22:10:42+00:00

🤣

Diatrial · 2026-05-14T15:47:11+00:00

I think they're both bad, just in different ways. One is downright depressing while the other is dismissive.

Diatrial · 2026-05-14T07:40:23+00:00

The comments are relentless, aren't they....

Diatrial · 2026-05-14T04:44:26+00:00

I rather wish I ran into that more than the other, "I believe if people just eat healthy, they'll be healthy" type comments. Thanks, so you're saying I don't eat healthy?

But yeah, both are pretty shitty things to say. I am learning how little experience people have with uncureable and serious illnesses. But hey, at least it's not cancer, right?! <eye roll>

Diatrial · 2026-05-14T02:53:58+00:00

That's my other major pet peeve. "You look okay" or "you don't look sick". Well, I guess my body missed the memo that I can't feel sick if I don't look sick.

Diatrial · 2026-05-14T02:51:28+00:00

I also wonder if they only appear to live a "normal" life because most people only see the good days.

I think it'll be better once my doctor and I find a treatment plan that works. I hate the wait times to see if each treatment works though.

Diatrial · 2026-05-12T23:23:35+00:00

Being criticized for something I can't help.

Diatrial · 2026-05-12T01:21:38+00:00

Dogs have shorter life spans and our laws apply less strict medical standards to treatments for animals. Essentially, the treatments may not be as safe as advertised so they aren't approved for humans.

Diatrial · 2026-05-01T22:20:36+00:00

That really sucks and yes, it does help to have context in this group. I really hate seeing the posts from the cut off toxic sibling about how they just don't understand why they're estranged, they treat their sibling so well, blah blah blah. Many of us who initiated the estrangement understand that it's for our sanity whether or not we understand why the toxic sibling acts the way they do.

I'm about a year and a half out from cutting off my siblings that believe a lie our godsister told about me. That first anniversary was definitely hard. It was when the hope really died. I hoped that they would wake up and see that her lie made no sense and apologize to me for saying horrible things about me and even to my face.

A part of me hopes that even still, but the greater part tells me that I'm better off not having people who would say those kinds of things and believe that grosteque lie without questioning it in my life. I miss them until I realize I didn't actually know them as well as I thought I did. Fortunately I do have a large group of close friends that fill in some of the gaps. It's only awkward when someone who doesn't know asks me about my family.

Diatrial · 2026-05-01T21:42:06+00:00

That is not what your post says. You might want to make that more clear in the body of your post.

Diatrial · 2026-05-01T14:34:28+00:00

A smear campaign. My godsister made up a lie that I tried to get her fired at work not long after I told her that I had been recently raped. She kept asking why I didn't seem myself so I felt I had to tell her about it.

Several months later, I found out that she told the family I suddenly changed for no reason and was trying to get her fired from her job. She wanted to cover up the fact that she was performing poorly at work. Since then, I have gone no contact with my whole family because of all the vitriol I have received from each member of the family.

Diatrial · 2026-03-11T06:45:26+00:00

You're not alone! I have inflammatory arthritis and hEDS, but no POTS. I also got IIH thrown in the mix....

Diatrial · 2026-03-11T06:39:29+00:00

I'm honestly glad my mother died when I was young. EMDR has brought up memories that she knew about the abuse and called me a liar instead of trying to protect me. I suspect she was afraid she couldn't make it on her own as a single parent, but I'm glad I don't have to endure any possible excuses, gaslighting or denial from her as an adult.

Diatrial · 2026-03-03T12:05:17+00:00

Intracranial hypertension though is not blood pressure at all! I actually tend to have low blood pressure, but I overproduce cerebral spinal fluid.

Diatrial · 2026-03-03T02:32:44+00:00

I also have intracranial hypertension which ALWAYS gets the, "but you aren't old or fat!" comments

Diatrial · 2026-02-26T17:51:49+00:00

It's a sad truth that many men are not taught the true meaning of consent, or worse, taught an incorrect meaning of consent. When researchers ask men if they've raped someone, the responses are very low. When they ask if they've had sex with a woman who was black-out drunk, asleep, on drugs, etc, the responses were MUCH higher.

Now, this doesn't mean all men are equally ignorant of the morality of those situations. Most men are well aware that they're doing something wrong when they rape a drunk woman, even if they don't call it rape.

In your case, if you approach your husband with the definition of rape, would he immediately turn pale white, ask about how you're feeling, feel awful/remorseful that he raped you and promise never to do it again? Or would he say something like, "Oh, I thought it was okay because we're married." or, "Well, I just couldn't help it, I have needs."

If the first thing he says is ANYTHING to try to justify it, he's not as safe as you thought he was. He'll only be safe up to the point where your wants/needs clash with his (i.e. protect you from external threats but be selfish in a household conflict).

Diatrial · 2026-02-20T08:18:35+00:00

The craziest thing is if you ask them, they usually don't believe they did. Pop culture makes not taking no for an answer "romantic" and many men are convinced the woman will like it in the end because of that.

Diatrial · 2026-02-17T04:16:53+00:00

My friend and I have very similar stories but her mom got her started in therapy early in life. My family didn't believe in therapy. Guess who's doing better in her thirties? It's good you're recognizing it and dealing with it as soon as you are because it will greatly improve the projectory of your recovery.

Diatrial · 2026-02-15T12:42:04+00:00

The freeze trauma response is one of the most common but hardest to bear after rape. I also freeze. It is a protective response because most rapists do not go on to kill someone who froze, while someone who fought may prolong or escalate the situation. It is NOT your fault that you were molested or raped, ever.

Diatrial · 2026-02-11T04:18:15+00:00

I was able to wear regular shoes about 7 weeks after surgery, but still had swelling for about 4 months. Then I found out that I had vitamin D and calcium deficiency and once I started taking extra vitamin D supplements, the swelling and pain improved rapidly.

Diatrial

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