A variety of experiences, perspectives, and perhaps success with alternative treatments for Lupus

[Jennwest]

I was diagnosed with Lupus in October. My Kidney's are constantly attacked, headaches that just don't go away for sometimes days, bruises out of nowhere, severe fatigue that makes me nearly faint, ulcers in my nose, pain and swelling in my hips and now my knees, IBS, painful knots all over my body even in my ribcage, (they feel like bb's in between my ribs, memory loss, and my vision is off... sometimes blurry, I have seen little green spots, and also will see just fine and then then whatever it is that I am looking at, the color leaves and it is just different shades of gray... It only last for seconds but it is something that I have never experienced. Any advice, knowledge, similar symptoms, and is there anything that I can take over the counter to help prevent the kidney infections.

[Treetop33]

I'm so sorry to hear you are going through this. It's very scary isn't it? I hope you are being properly cared for my medics and have a workable treatment regimes.

None of us are docs here so can't help you with treatment options. I can only say what I'm trying. I'm on hydroxy, prednisone and clopidogrel which still isn't working. So I'm giving low-dose naltrexone a try before going on any stronger meds. I can't say at the moment if it's working, as I've only been on it for 10 days.

Take care x

[Melba1]

Hello, sorry you’re feeling so unwell. Hopefully they’ve got you on some treatment to help?

I’ve never had kidney problems with the lupus but have had the severe fatigue, memory issues, ulcers and pain. Some of these got a lot better after hydroxychloroquine and steroids give a huge improvement. I’ve now had rituximab which has also helped in many ways and you will probably be offered if you have lupus nephritis?

I’m very interested to hear about you also losing colour vision for short periods as I’ve never heard of anyone else who has this or got much of an explanation for it when it happens it me. Mine seems to happen when the lupus is active in my nervous system especially the autonomic nervous system but is also possibly related to migraines. I noticed when I turned off the light at night I’d feel off balance and one eye adapts to the dark and one eye sees nothing. If I then turn the light on, one eye sees normally in colour, the other eye sees very muted colours, mostly everything grey. It only lasts a few minutes and if I look quickly in the mirror one pupil is larger than the other. A hospital dr has said my pupils react slowly to light and one is more reactive and the ophthalmologist said the slowness in reacting was a sign that the lupus was causing general neurological slowing. My dad who is a physics professor specialising in light said that the variation in seeing colour is due to less/more light getting into each eye. I always worry with eyes in case it changes my vision but it has happened on and off for a while now and my vision is still ok. It sometimes gets blurry but I think that’s the autonomic issues too. Yours may be different though so best to get it checked out.

Hope you feel a lot better soon x

[Paul_Howard Partner LUPUS UK]

Hi Jennwest ,

I'm sorry to hear that you are struggling so much with your symptoms at the moment. What treatments are you currently taking for your lupus? Have you discussed the difficulty you are having with your consultant to see if there is anything else they can offer at this time?

As Treetop33 has said, we are not medically qualified here so we cannot advise you about any treatments (alternative/complementary or otherwise). It is always best to discuss these with your consultant before trying anything so that they can warn you of any potential adverse effects or interactions with other treatments.

If you are specifically looking for ways to try and prevent recurrent kidney infections, the NHS Choices website has some advice here - nhs.uk/conditions/kidney-in...