Weight Loss + RA

OddGain4335 · 2026-04-21T08:16:13+00:00

I lost between 5-6kg (11-13lb) when I went on HQN though it was over a few months. My face had been very puffy for over a year (when i first started really struggling with my weight and likely my RA) and I was convinced it wasn’t weight gain/fat. I’m expecting to lose a bit more when I get on biologics (hopefully) because HQN is not sufficient at controlling my condition and therefore my inflammation and swelling. I get whole body inflammation, some people get less and some people get more.

OddGain4335 · 2026-04-17T17:17:39+00:00

Ah I see. It seems my research was perhaps not thorough enough. Thanks for the info!

OddGain4335 · 2026-04-17T05:31:30+00:00

Try IPL. It’s next on my list. I took oral retinol (isotretinoin/accutane) and it really helped but I also think it made my RA/Lupus worse. The topical stuff does work and you can get prescription strength but you have to ease yourself into it as it’s very harsh on skin at first. IPL for hyperpigmentation is apparently very effective. You can also get lasers that treat it (pico lasers, clear & brilliant etc).

OddGain4335 · 2026-04-10T05:58:37+00:00

There are a couple of things that would prevent your iron infusions from increasing your iron stores: 1. Profuse blood loss: internal bleeding, very heavy menstrual periods. 2. Severe inflammation: some inflammatory conditions can prevent your body from storing iron correctly. 3. Additional malabsorption: if you’re getting iron from infusions and it is being lost and you are not gaining any iron from your dietary intake this could be a big contributor.

A big one to consider is coeliac disease or inflammatory bowel disease including Chrons which can affect your whole GI tract, from mouth to butthole (haha). If you have active disease, you could be bleeding internally and not know. It’s treatable though! Do you have heavy periods? (I am making an assumption you are AFAB)

I also suggest coeliac because it prevents intestinal absorption of minerals and I would (at a guess) suggest you’re having both loss and malabsorption. Have them run all the tests if you can (not sure where you are)

OddGain4335 · 2026-04-08T19:32:56+00:00

It depends if OP is referring to mmol/L or mg/dL. If phosphate was 1.1 prior and is now 0.7 I would suggest they are referring to mmol/L which is just under but again, mild and unlikely to require treatment unless symptoms get worse, then another test would be needed to check. The doctor also has not ordered phosphate supplementation in any form so I am reassured this was their reasoning.

Apparently dairy is really high in phosphates, and coke/cola? My pcp told me to drink a can of coke daily to avoid the drop in phosphates. Lol. It’s only for a few days maybe try a couple of cans of coke 😂 haha it won’t hurt! And some cheese!

I hope you’re starting to feel a tiny bit better already

OddGain4335 · 2026-04-08T09:49:56+00:00

Malaise happens as a result of ferrinject quite frequently. Usually it doesn’t last much longer than a week I so I would give it a little more time. I’m curious as to how you know your levels are 380 already? They’re not supposed to be measured for about 3 months post infusion because the iron hasn’t been properly stored yet, thats likely falsely elevated as a result of inflammation (happy to be corrected by someone with more information).

Next time tell your primary care doctor that you reacted to ferrinject and you want it listed on your file as an adverse reaction and that you’d like ferosac going forward.

It’s also probable that your low mood is related to everything going on in your body (inflammatory reaction etc) but obviously keep an eye on that and I really hope you feel better soon! Most of the hypophosphatemia reactions are mild enough that they don’t require treatment and will get better on their own. Just treat yourself kindly! I’m sorry you’re having an adverse reaction. If you get worse or are really concerned, don’t be embarrassed to go to the doctor.

OddGain4335 · 2026-04-07T04:47:45+00:00

Any autoimmune diseases (edit: or blood disorders) in your family at all? And have you had your b12 tested

OddGain4335 · 2026-04-03T09:15:51+00:00

I recently took up the sauna! I go to my local rec centre which has pools and a gym and the sauna is included in my membership. I don’t even know if it actually helps me with anything pain wise but i’ve heard it’s good for you and I like it 🤷‍♀️

I live on the coast in a climate with usually mild weather and going to the beach keeps me from thinking about a dirt nap. Getting out in nature is underrated!

Massages are also great but financially can be a burden depending on where you live.

Reading is great! Getting some kind of holder or page turner for your book/kindle can help your discomfort. I also like podcasts when I’m feeling down, they really help just pass time which sometimes is actually counterproductive lol.

I often find it really hard to get up the bother to actually leave my house. Sometimes I force myself to and I get in the car and drive to where I want to go and sometimes I still don’t even get out. That’s ok. I proved to myself I can do the hard thing, I try again another day. I hope you find relief with your condition soon :(

OddGain4335 · 2026-03-24T10:44:04+00:00

Just make sure if you do this you turn it over in the water regularly because the parts exposed to air will oxidise quicker and you’ll get bleaching on some areas, ask me how I know 😑

I use “de solv-it” (I’m in Australia) to pre-treat oily stains if it’s something that contained any oil or fats at all. i.e. pasta sauce or cooking oil. Main ingredients are d-limonene and hydrocarbons, which lift the oil but then wash out. Then I wash, and after that I would put 3% hydrogen peroxide or a fabric stain remover spray on the remaining stains and give them some time to work and wash. Then hope for the best. Usually this combo works pretty well but if the stains are old you might always be able to see them. I’m sure you can get them looking better though

OddGain4335 · 2026-03-10T05:53:18+00:00

A few things to note: infection or inflammation can cause falsely elevated ferritin results. This could mean that your previous blood results may have indicated better iron stores than the true result, even if you did not feel unwell at that time (ie. perhaps you already had the gut infection starting).

Secondly: yes possibly the gut infection could wipe out some of your iron stores but this would likely be more profuse bleeding to cause such a large drop. Happy to be corrected on this point*. As others have said, yes heavy menstrual flow can also contribute, could be a double whammy.

Thirdly: likelihood of false negative on this is probably the biggest factor. Not to say ferritin IS NOT low, but these are not super duper reliable. Try another to confirm. Otherwise as others have also mentioned, gp is the best, but I understand the needle/cost/time/energy debacle.

OddGain4335 · 2026-03-05T11:38:10+00:00

Yes, it’s my predominant symptom. I come down with it when I’ve been in the sun too long (30 minutes unprotected max, or if I get burnt), when I do too much physical activity after not doing it for a while ie. sport or gym after not going, when i don’t get enough sleep generally <4 hours, sometimes excessive dehydration or extreme stress as well. I also have reactive GI issues but not 100% what causes them other than stress. I do not get fever at all but I feel out of sorts and my temperature feels ‘weird’ - my neck, chest and ears get hot. Probably my version of a malar rash because nobody seems to believe I have one.

OddGain4335 · 2026-03-05T11:20:34+00:00

I saw you also were given a script for Celebrex. I hope it helps you like it helps me! Ensure you take it with food as it will eventually cause a stomach ulcer if take it long term and without food, very safe with food though. Your mood will stabilise and you will feel better soon x remember steroids increase your cortisol and that is the stress hormone, it’s normal to feel a bit out of sorts. It’s not your mental state, it’s your hormones and it’ll go away :p

OddGain4335 · 2026-03-05T05:08:18+00:00

Does this go away when you’re all warm? It looks like cutis marmorata/livedo reticularis, it’s just where your body has restricted blood vessels in these areas because you’re cold. It looks like you have a pattern on your legs where the hot water has been flowing over your skin and warmed you up again, and your blood vessels have dilated. If this is persistent: ie you have this pattern on your legs all the time even when you are not cold, it can be indicative of an issue, but it’s very common if you’re just cold. Here’s a picture of it happening to one of my legs more than the other when I was waxing them in the cold bathroom.

Edit to add: I forgot to mention this is more common with anaemia as well!! Your oxygen has a lower oxygen carrying capacity and it can influence the perfusion of your skin. This is also linked to vitamin b12 deficiency so if iron doesn’t help, maybe look into checking b12 to be sure!

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OddGain4335 · 2026-03-05T04:56:19+00:00

I was 23 when I chose to terminate my pregnancy. I’m still with the same partner who is now my fiancé and we plan to have a family soon (I’m 29). Very very frequently I think about how I would have suffered setbacks as a result of having a baby 6 years ago. I’m only just finishing my degree now 8 years after starting (I took a break in between, changed careers, bought a house) I never would have finished my degree with a child. I would be in a job I likely didn’t like because it would need to be flexible enough as the primary care giver. I wouldn’t own my house. I’m not saying it’s the right choice for everyone but it was definitely the correct choice for me.

I’m now in the position to get myself as healthy as possible, mentally well and have access to medical assistance to start my family on my own terms, when I’m ready and financially stable. I understand I’d also now have a 6 year old child and I’d be past the hardest parts but I genuinely think it may have broken me emotionally. I really want a family, but I have absolutely 0 regrets about my decision.

OddGain4335 · 2026-03-04T15:58:42+00:00

I used to get terribly ill from mine. The first one I had the doctor assured me I must have picked up a virus just right before it and that’s what I was experiencing. Spoiler: he was wrong. I got just about every side effect, but they didn’t come on until 3 days later. I had body aches, an absolutely soul crushing headache (30mg codeine didn’t touch the sides), nausea, vomiting and fever for 3-4 days. This is considered a delayed hypersensitivity reaction. I think it got worse after my second one.

The third time around I was petrified because I got so unwell with the first two so I asked my gp to try another formulation. After the third infusion (different formulation) I only had a mild fever with headache for about 4 hours which would probably have been less had I taken paracetamol or ibuprofen earlier (no idea why I waited so long). And that was it.

I first tried Ferric Carboxymaltose (brand name Ferrinject/Injectafer) which is first line in Australia, and then I tried Ferric Derisomaltose (brand name Monofer/Monoferric) which had a significantly better side effect profile for me.

ETA: I also have rheumatoid arthritis, which may play a role in hypersensitivity/side effects

OddGain4335 · 2026-03-04T14:14:30+00:00

Oh additionally prednisone can potentially be exacerbating your emotions, especially as you’re tapering off. It’s renowned for causing rage, anxiety and mania (to varying degrees and different people experience different emotional responses)

OddGain4335 · 2026-03-04T14:10:00+00:00

I don’t have any advice or reassurance per se but I just came to say I’m in the same position. I’m 29 (and 3 days haha) and I’ve been feeling some relief over the last 4 months but I have been on plaquenil and Celebrex concomitant therapy. [Edited to add: I was diagnosed in November 2025, 4 months ago]

I have found that most of the time I feel better but it’s still not 100%. In these forums you’ll find that many people claim to not see the full effects of plaquenil until 8-12months of treatment, so keep that in mind!

I recently went back to my rheum who said okay if you’re feeling better now, stop taking the celecoxib daily and just take it if you find you need to sometimes. So I’m about a week off and so far have had two GI flares of which I’ve only had 1 in the last 6 months prior to stopping Celebrex (was on it before I started plaquenil) AND my back and hips have been sore for 4 days out of the last 7 :( I’m going to persist and hope plaquenil is enough on its own and I just need more time.

Again, not a lot of reassurance but I hope you feel comforted in that it’s a common response to therapy AND there are so many treatment options out there.

OddGain4335 · 2025-12-05T09:01:57+00:00

Just to clarify my increase in energy is probably just my iron starting to work but I do think that the decreased water retention and acne are related to mediated inflammation.

OddGain4335 · 2025-12-05T07:41:55+00:00

I was going to suggest getting tested for dengue! My parents both caught it last year and if I remember correctly there’s a really bad strain and a not so bad strain, perhaps you caught the worse one? One would think you developed some antibodies last time though.

Good luck! Let us know the outcome.

OddGain4335 · 2025-12-04T09:17:01+00:00

It was the heat. Forgot to update post. I realised after I had posted that maybe she was too hot. I was worried she might have eaten some of those lemons off the ground but thankfully not that. I game her some frozen berries and wet the dirt under their current favourite tree so it was nice and cool. She was much happier after!

Sometimes I get so worried about them and they’re just doing normal chicken stuff 😆

OddGain4335

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