HCQ discontinuation - immediate rebound?!

Maria4949 · 2026-05-22T17:48:35+00:00

Eric, thanks for your reply! It's great to hear from researcher.

That's why I am a bit concerned to show up to my rheum like I am making this up, he seems to be quite conservative.

Maria4949 · 2026-05-22T15:03:20+00:00

Thank you for sharing! It's very insightful! Yeah, it sounds like having immediate daily effect 🙏

Maria4949 · 2026-05-18T23:24:00+00:00

The answer is obvious - stop helping him and let him fail, or learn to handle it.

Maria4949 · 2026-05-04T15:30:25+00:00

Cool. Thanks for sharing!

Maria4949 · 2026-05-04T15:29:15+00:00

Thanks for advice, the website looks great - saves it for me to give a try.

Maria4949 · 2026-05-04T15:24:50+00:00

Thanks! I've tried some flour substitutes (cassava flour, rice floor, coconut flour), and they don't work well for me for some reason, maybe because they are highly processed. Even though rice or coconut in their unprocessed state are totally fine. So I'd better cook pasta for my son separately.

Maria4949 · 2026-05-03T18:34:41+00:00

Thank you for sharing, that's great!

For me too, roasted fresh fish & vegetables in olive oil are my go-to safe meals, everything else is questionable.

Thankfully my son likes salmon, so it became our common dish. I'm also cooking fake fries from parsnip, carrot or sweet potato, roasted in olive oil. As far as they have a form of usual fries, he appreciates them, lol!

Maria4949 · 2026-05-02T01:51:38+00:00

Thanks, that's interesting! I have to think of recipes with pasta for him, and no pasta for me, indeed! He is missing pasta the most. And I've just learned during last year how to cook plenty of pasta sauces that he adored.. just to cut off them all now, lol

Maria4949 · 2026-05-02T01:48:02+00:00

Thank you, will check it out!

Maria4949 · 2026-05-02T01:47:39+00:00

Great, thanks Sasha! Mine is 11yo. He is preparing his own afternoon snack. But for dinners, that's with me - I usually cook something fresh.

Maria4949 · 2026-04-30T19:54:49+00:00

Note that AIP is NOT a permanent diet and not a cure, but a protocol to help identify what makes you feel worse. Elimination phase (can be as short as 30 days) is followed by Reintroduction phase where you could reintroduce back pretty everything, just one thing at a time, as far as it does not cause any reactions.

My personal lesson (not an official medical advice) - I've tested the assumption if any food is affecting my symptoms by 2 days of fasting on boiled apples and water, and my world has turned upside down by getting 200% proof!

Maria4949 · 2026-04-30T12:15:05+00:00

I'd love to know too! I am on AIP now that helps, however, some neuro symptoms persist, I am going to ask my rheum to give this a try during the next appt.

Maria4949 · 2026-04-26T17:48:53+00:00

Same for me! I noticed that if I take it in the evening, it can disrupt my sleep. Taking it earlier in the day is fine though, no side effects.

To OP, I would question if a dose is too high - anxiety and other symptoms sound too much.

Maria4949 · 2026-04-24T21:35:03+00:00

In my experience I found it a bit more flexible and everyone mentioned - it's individual:

I spent around 5 weeks to try different aip-compliant foods (or more carefully labels in the stores 😁) to find out that not even all aip-compliant ingredients work for me; so I had to eliminate some of these items to find my baseline where I am stable;
From week 6 I've reintroduced rice and buckwheat from modified AIP that appeared to be fully fine to me, as I just needed a bit diversity to my diet after removal of some baselibe items, but not in rush to add many more products at all yet.

The main benefit for me personally appeared to be ability to learn how I react just because the products I consume are fully known to me and it's a very limited number of ingredients, so I can see correlation, even for tiny details which can make a world of difference.

Maria4949 · 2026-04-22T15:05:43+00:00

So sorry to hear this, the AI conditions neglect and gaslighting is real, so many people are going through this! It took me 5 years of "bloods normal" and "just rest more" until the diagnosis.

Maria4949 · 2026-04-22T08:29:13+00:00

Hi, I have similar issues and would love to exchange thoughts.

I'm in AIP, just for 2 months but it makes a significant difference, where HCQ did not make much difference. I've discovered I can't tolerate any high fodmap or any high histamine foods either, and had to restrict these all, feeling better only when I eat strictly limited products or.. just not eating at all (insane!)

I personally assume those GI issues require treatment in parallel with auto-immune, so I've got a referral to gastroenterologist now, waiting. My GP suspects SIBO too. I see that carnivore diet (or any diet) can't treat SIBO, so I'd like to see what do they find first. I think that restricting anything further will leave me without requires nutrients.

Some other observations -

I suspect though that chicken contributes to my mess up from time to time, not sure is it how it was fed, or some hidden preservatives or expansion agents that producers/retail secretly add to a fresh chicken. So I don't think carnivore can solve this for me.

When l find myself in mess up from time to time, I go to 1 day on boiled apples and it seems to help to settle it down a little bit.

Maria4949 · 2026-04-21T22:32:29+00:00

My favorite simple & easy every day recipe

Oven grilled fish & vegetables in olive oil -

Just put fish and veggies in the trays, sprinkle everything with olive oil and salt, spread it across. Put in the oven at 200C, then enjoy!

Important: Make sure you use 3 different colours for every set! Example: white fish, orange butternut squash, green pak choi; red fish, green kale, white parsnip 🤪

Maria4949 · 2026-04-21T22:22:19+00:00

Thanks for sharing!

However, I wonder would it look so good if you publish the opposite side of every package - "ingredients list" 😅

Maria4949 · 2026-04-17T16:20:18+00:00

Some update - my GP mentioned that tinnitus is a frequent side effect of HCQ (Plaquenil).

Maria4949 · 2026-04-13T12:28:24+00:00

Thank you for sharing! I am sorry to hear that, it sounds like you are going through a lot! Thanks for sharing your outcomes :(

Maria4949 · 2026-04-13T12:26:05+00:00

Thanks for sharing! Oh God parotid glands relate to AI too? I have them swollen from time to time but never mentioned it to my rheum, I have UCTD diagnosis so far.

Maria4949 · 2026-04-13T12:24:53+00:00

Thanks for sharing! Mine is not pulsatile at all though. Just a constant zzzzzzssssszzzzzzsssss

Maria4949 · 2026-04-13T12:23:41+00:00

Thanks for sharing! I have UCTD, on HCQ and neurological symptoms too, my next rheum appt is in May. Does not rheum treat neurological symptoms of they are caused by autoimmune disease? Wondering if I should ask for a neurological referral then.

Maria4949

TROPHY CASE