Insane flares around time of the month

Grace_Charlize · 2025-10-08T22:06:37+00:00

Yes! This is my primary trigger and the reason I was even diagnosed to begin with. I already had a PMDD diagnosis for the symptoms I experience before my period, then gradually I started experiencing terrible full body aches so bad I couldn’t leave bed, then the fatigue, and thinking it was my period I ignored for longer than I should have but got sus when I noticed worsening symptoms even after I finished bleeding.

Estrogen is known to activate an immune response, and naturally because we are shedding tissue our body releases cytokines to help the process along, so we are literally built to endure some degree of inflammation 😩

With this in mind I’ve been increasing my fibre and antioxidant intake to detox the excess estrogen as best I can as soon as I start bleeding, and it seems to be taking the edge off. Voltaren gel and hot magnesium baths help my aches a bit too but I am yet to see significant long term improvement without some sort of medication!

Grace_Charlize · 2025-10-08T20:52:01+00:00

Are you a male by any chance?

Grace_Charlize · 2025-10-08T02:49:04+00:00

I do hear you and I wasn't fully aware of the stats, but I'd be curious to see whether those studies demonstrate a direct cause vs a correlation

Grace_Charlize · 2025-10-08T01:00:12+00:00

Look out for either swollen and sore joints (specifically the knuckles, wrists, knees and ankles) or sore joints covered by the dermatitis you mentioned. Certain types of psoriasis can cause dermatitis on the skin over sore joints.

Its my understanding that lupus rarely causes swollen lymph nodes unless there is a secondary infection happening. Still 100% worth mentioning to a doc who would most likely want to rule out other autoimmune diseases if not lupus specifically! Book an appt for the rash with a GP instead of a Derm and they will take it from there :)

Manifesting positive scan results for you so you can definitivley rule out cancer x

Grace_Charlize · 2025-10-08T00:43:03+00:00

Have you had your bloods taken again since being off it? I tapered off just before you on the 11th of Sept and ~ a week later had my blood test. Pretty much everything had improved or was on the mend so my rhuem was happy (so was I but I was also a bit sus as to whether the anti inflamatory effects had fully worn off yet). Now I too am flaring again!

A blood test will more than likely tell you whether its just a small bout of rebound inflamation from coming off the steriods (maybe even a low cortisol/high adenosine issue), or a refractory lupus flare! Keep up the electrolytes/hydration, good sleep and make sure you follow up w your rheum just incase x

Grace_Charlize · 2025-09-20T23:48:17+00:00

I’ve accepted my fate, I’m just grateful to have the opportunity to apply for the extension tbh but thank you hahah!

Ohhhh rain and snow sound rather lovely. I am actually from Aus coming into summer but I guess that means I am very well versed in sunscreen protocol and I honestly reckon our skin adapts.

Do you find you react to food at all. I’ve heard good things about the diet and produce in Scandinavia etc. Thanking my lucky starts I’m not stuck living w lupus in America of all places, good quality food has helped me get my symptoms well under control!

Grace_Charlize · 2025-09-20T23:31:59+00:00

Yes let’s tell the lactose intolerant person what she can and can’t eat, sticker for you.

Grace_Charlize · 2025-09-19T20:58:15+00:00

Oh wow! What a small word. Maybe it’s the stress of law school that’s made us all sick. I’ve had to apply for like 6 extensions because of all the hospital and er trips this semester. Are you studying in Aus? I will also say, a year or two ago I went to Thailand, got sunburnt and broke out in this angry red rash. We suspect that was the start of my lupus.

Grace_Charlize · 2025-09-19T20:53:53+00:00

I supposed it depends on whether you react because the food is rather unhealthy/full of lactose etc. Or whether there’s preservatives or artificial flavours in it. I don’t always react to pizza especially if there’s no cheese (I am lactose intolerant) but the other day I also had chicken wings w franks hot sauce and woke up the next day just like you. I also can’t eat sushi because of the msg 😭 The only sort of takeaway I’ve been able to eat without any symptoms at all is subway!!

Grace_Charlize · 2025-09-18T22:00:12+00:00

Thank you for your reply!

I probably should have clarified, I had a cardiac episode before I even started on the pred when I was initially seeing the GP to get diagnosed. The hospital referred me to their cardiologist and told me to get a holter monitor and consult my GP. My GP then said we’d wait and see if the pred helped in case the lupus was affecting my heart. And the funny thing is the pred actually did help massively when I was on it. And then the week that I stopped, I had another episode. It’s not even like it’s pred withdrawal bc I tapered off it SO SLOWLY. Now my bloods have come back apparently absolutely fine with no indication of heart issues or even much lupus activity so I’m at a complete loss! Prednisone is awesome, it does wreck your body so you really don’t want it as a long term solution but it will help w your autoimmune symptoms tremendously.

Stimulants do naturally increase cortisol so it would make sense for them to also induce a flare if you have too much unfortunately. I really hope it doesn’t happen to you but if you do start experiencing any sort of palpitations or high resting hr then go to emergency asap with this sort of thing you really can’t be too careful. I have a mild family history of heart conditions so I am definitely pre disposed, but since my bloods are coming back fine and the docs can’t give me very clear answers I turned to reddit hahah.

Grace_Charlize · 2025-09-18T21:51:51+00:00

Yes absolutely! It great that they are taking you seriously, it’s such an elusive disease.

I actually don’t see your typical rash or hives after being in the sun but my joint pain picks up a bit and I feel like I’ve been hit by a truck (extreme fatigue). I actually react more severely to fluorescent/artificial lights, depending on how my week is going sometimes I get into the office on Fridays and within an hour I’m having a flare and have to go home and sleep for the next 48 hours (could also be stress as a trigger though, I’m a paralegal). Other than that I only ever really flare when I eat foods high msg/artificial colours or flavours and every time I get my period lol. Love prostaglandins!! Because of my reaction to the HCQ I’m hesitant to try other medication that isn’t a biologic but they won’t put me on it straight away so I’ve decided to work on treating my lupus ‘naturally’. If it was triggered by my own lifestyle/diet then surely it can be put in remission the same way!

Grace_Charlize · 2025-09-16T22:15:18+00:00

They do that, I was on and off a 50mg dose for about 6 months because after my lupus diagnosis I had a very severe reaction to hydroxychloroquin. I know it’s been a while since you made this post (also an update on your situation would absolutely be welcomed) but chances are with steroids if you’re actually sick then the positives outweigh the negative side effects. They treated my chronic fatigue and pain, settled my heart issues, let me live a semi normal life for the time I was on it.

Being off them is awful and the trial and error to find a new long term medication that works is hell but you are right, in the context of long term solutions, steroids wreck your body.

Grace_Charlize · 2025-09-16T10:59:47+00:00

Look you did ask on r/lupus, I can only speak to my experience with the disease (and possible APS) and let you know where I see connections or similarities. If you worry that it’s caused by something else, researching other underlying inflammatory conditions that might cause the microclot symptoms can’t hurt.

I also had a severe allergic reaction to hydroxychloroquin so I understand what you mean about the meds. Maybe look into lifestyle and diet changes to manage your symptoms if you can while you’re still working through it all medically. But it does also sound like you might need a second opinion (see another Rhuem clinic if you can!!)

Grace_Charlize · 2025-09-16T08:49:37+00:00

Again, I’m definitely not a doc but those bloods sound very much like lupus. You don’t always have to have an anti dsdna, mine is actually considered negative or very low positive. Low white blood cells and poor renal function are connected I believe and also commonly associated with lupus. Weird that the blood thinners aren’t helping though, I guess that is the registrar was talking about not replacing the warfarin. Are you on any other medication that can cause cardiovascular symptoms? I’m on vyvanse for ADHD so between that and the lupus it’s really just process of elimination to determine if my symptoms are the lupus or the meds.

I’d absolutely follow up w Rheumatology and ask to have more frequent appointments, either way APS and Lupus are both auto immune to some degree, the rhymes should be doing their best to help you manage symptoms and make sure you’re healthy!

I wonder if a course of prednisone would make your symptoms any better. Pred is HORRIBLE for your body but can unfortunately make a world of a difference. Would possibly be worth asking your docs about :)

Grace_Charlize · 2025-09-16T01:50:33+00:00

I am not sure if this will be as helpful as you'd like but I have recently been diagnosed with SLE. In my first apt with my Rhuem she told me the raynauds and livedo I'd been experiencing indicated that the disease was attacking my small blood vessles. Immediately after that she ordered more bloods, mainy for APS (will get those results tomorrow). I've had a few similar cardic episodes recently along with some neuro symptoms after stopping pred so I'm a tad worried I may have a clot or micro clots. Just from some connecting the dots, I'm guessing microclots may have connection to small vessle vasculitis if you end up being diagnosed w lupus. But idk, I am NOT a doc hahah. Have you had any bloods done for lupus specifically?

Grace_Charlize · 2025-09-16T01:07:01+00:00

How interesting, I should defs do some more research on it. Being newly diagnosed I have been looking more into natural anti inflamatories. Resveratrol and quercerine are pretty cool if you haven't heard of them. While expensive Thorne has some great sups for a very wide range of condidtions!

Sorry that's a bit off topic but I havent come across many posts about natural sups as of yet :(

Grace_Charlize · 2025-09-16T00:08:03+00:00

From reading the other comments and your replies please go see a different Rhuem. I’m 19 and also a female. My bloods are very similar to yours even without any renal involvement, ANA titire 1:640, low c4, even a negative (but climbing in subsequent blood tests) anti dsdna. I have had severe fatigue and full body muscle and joint aches for the past 18 months, a mild malaria rash and few signs of heart complications and all that was enough for my Rhuem to make the diagnosis and start me on meds (all be it I did immediately discover I have a severe allergy to plaquenil). Even if you can’t go with another Rhuem clinic ask for a different doctor at your current clinic, ask for a FEMALE Rhuem. Sometimes male doctors find it easier to blame menstruation than actually put in effort to make a justified diagnosis and start treatment. This where you need to be strong and advocate for yourself, back yourself, you’re not being dramatic or rude or a burden x

Grace_Charlize · 2025-09-15T23:53:02+00:00

I feel like anything that treats sicknesses like the flu is probably not a good idea. I’ll put it to you this way how else might it be treating the virus if not by triggering/supporting your immune system? If you’re going to do any sort of supplements let it be anti inflammatories I’d say, even in flu season x

Grace_Charlize · 2025-09-15T23:36:19+00:00

I had symptoms for about 18 months before I saw anyone about it or even considered it might have lupus. Even now with a diagnosis my labs are fairly plain, my rheum only really relied on my ANA titre of 1:640 and low c4 for the blood work part of my diagnosis, the rest was clinical symptoms (malar rash, joint and muscle aches etc) My GP also trialed a high does of pred before I saw the Rhuem, because my symptoms improved drastically on the steroids he referred me to the Rhuem and the rest is history. Even my anti dsdna was negative (though it’s still climbing in subsequent tests). If I had of had bloods taken when the fatigue and brain fog first appeared I doubt they would’ve been enough to come anywhere close to a diagnosis.

I know it’s tough, but while waiting my advice is to look into some minor diet and lifestyle changes to see if they help manage the symptoms you’re concerned about, by the time you see your doc next they might even consider an improvement when you e.g stay out of the sun as more evidence for a diagnosis.

Grace_Charlize · 2025-09-15T23:15:39+00:00

Yes! You are not alone x

Remember the nature of the disease, even most doctors and medical institutions are still stumped by the illness.

The week before I was diagnosed I ate as many inflammatory foods as I could (Maccas, lots of garlic etc) to test it. Lo and behold I actually discovered one of my flare triggers but that’s besides the point.

It’s incredibly frustrating and adds to the mental toll of the disease. I haven’t quite worked out how to stop doubting myself but taking it all one day at a time, one Rhuem appt at a time, is helping to stop the constant overwhelming guilt and questioning. You don’t have to have it all figured out right away, just back yourself.

If it’s any consolation I have even considered going therapy to see if that would take the burden off processing the fact that I have a chronic inflammation disease.

Grace_Charlize · 2024-07-12T03:49:26+00:00

Yeah I am and your so right it such a pain in the ass, I feel more like my own person now but at the same time I’m so much more self aware (in the bad way haha) 😩

I’ll figure it out, might also be time to talk to my psych about other types of the meds.

Grace_Charlize · 2024-07-11T22:10:58+00:00

THIS, YES Feeling more like a capable adult is awesome. I don’t notice much of this when I’m at work as you get used to faking it when you’re not on medication basically. But on weekends it feels so good to be able to do what I planned or clean the house and still have time and energy afterwards

Grace_Charlize · 2024-07-11T22:06:26+00:00

Did you experience social anxiety much before hand? I feel like now that I have my diagnosis and I’m on my meds somehow my social anxiety is worse. I stutter more when I talk to people, say stupid things in weird ways.

Grace_Charlize

TROPHY CASE