Prednisone, hormonal imbalance & TTC

[Shelly1919]

Hi, I'm reaching out to this wonderful community for some support.

I am a 33-yo woman, diagnosed with Lupus Dec ´22.

I experienced no lupus symptoms (apart from migraines) until I began experiencing Raynaud‘s in Oct ´21 i think (had my first two covid vaccinations in June and August ´21, just putting it out there), also possibly may have had an early chemical pregnancy in early 2022 that triggered something and got Covid for the first time in July '22...anyways,

I was diagnosed with SLE after suffering acute kidney failure in Nov ´22 and gaining 20 kg of edema and tested positive for anti-dsDNA and ANA. My kidneys fully recovered, which made the doctors a little perplexed, and they told me never to take NSAIDs again, but I am super grateful for my recovery.

I have been on 400 mg of plaquenil and prednisone daily since, now reduced to 5 mg a day.

In January, my doctor had me try to stop taking the prednisone without tapering down and that was when I first experienced the typical lupus symptoms (or steroid withdrawal rheumatism??) such as extreme fatigue, joint pain, dizziness and nausea along with blood levels all out of whack and a little hair loss (also experienced heavy depression during the week I was off – wish I had been warned), so I was put back on the prednisone.

My doctor says it is very positive that my condition can be managed with only 5 mg of prednisone which I appreciate, but I feel it is messing A LOT with my hormones and mental health. My doctor kind of dismisses it since it is such a low dose but I feel like a different person on these medications and I am afraid I will have to take them indefinitely.

So my question is: What is your experience of hormonal imbalance / depression & anxiety from even low doses of prednisone, and have you found ways to regain your balance and sense of self? (I have no insomnia btw so I think lack of sleep is not an issue here – unless its poor quality sleep idk..).

Additionally, I am trying to conceive with my partner, and my recent mood swings around ovulation are certainly not helping.

So if you have any insight on TTC on prednisone or pregnancy while on prednisone, that would be super helpful!

Love and good health to you all!

[Treetop33]

It sounds like there is something to address for you in steroid use. I am on 5mg too and would love to come off them. They do encourage dependency though.

I think the trick is to go really, really slow and give your hormones and adrenals plenty of support while you are doing that. 400mg of Hydroxy is quite high too so you could ask your docs to come down a bit if you are stable.

[Shelly1919 in reply to Treetop33]

Thanks for your reply - it makes sense to taper slowly.

[Olive12345]

The more stable you get, the easier it will be to taper down. Just go slow and stay at a smaller dose for a week or two before trying to drop it more. Could also try alternate days.

If it brings back symptoms, I’d stay on it because immune issues can cause problems in pregnancy and ttc. Also are you sure it’s the pred causing the issues and not ttc itself. It is not the fun journey it sounds like it should be!

Just re the vaccination thing, if the jabs triggered you, Covid would have been really bad. I had long covid and it took me three years to not feel disabled anymore. My brain still doesn’t work properly and I still have more issues than I started with. I was 33 at the time and fairly healthy.

[Shelly1919 in reply to Olive12345]

Thank you for sharing your insight – Sorry to hear about your struggle with long Covid. It‘s a scary thing.

Ttc can certainly mess a little with your head, but I have also had increased symptoms recently like passing out from menstrual cramps, bloating like I‘m already 3 months pregnant, uncontrollable crying and acne. Makes me worried about possible impact on my fertility.

Good luck on your healing journey

[Olive12345 in reply to Shelly1919]

That does sound rubbish. If it’s any reassurance, pred is often used alongside fertility treatments so if anything it should help, but it might be worth doing a bit of research. Saying that, if it makes you feel that bad I can see why you’d want rid! Have you asked the dr about using something different, there are a few other meds that are suitable when ttc. Even another brand might help.

[nottypical]

Shelly - I completely agree with you that even a low dose of prednisolone messes with the brain. I, too, had "but it's such a low dose". I think the brain rewiring effect is permanent - but told I've got a phobia.

[Tanne]

I too take 200mg hyroxychloroquine & 5mg predisone which seems to cause mood swings, open my mouth and hurtful words come out. makes skin on arms thin and itch. Started this 2018. Dr said no lupus but sjorgens syndrome. All I can say is I feel terrible after rebelling and not taking meds for a while, but taking meds i still mental & physical feel pain but less,