Help!

[Wood2021]

Hi everyone, I was diagnosed with Cutaneous lupus a few years ago and was on medication for a while but have been off it now for sometime as they advised my lupus had gone ‘dormant’. I have always received very little support with understanding my diagnosis and the symptoms to expect. More regularly now, I am becoming extremely tired, achy and appear to get ulcers in my nose, it can get in the way of my daily living and I am getting quite frustrated and upset. I have more recently began to bruise very easily, but I am unsure if all or any of these things are related to lupus, when I attend my GP they dismiss me very quickly and it has been the same with hospitals in the past. I have given up hope for support really and wondered if anyone could offer any advice? I am currently in the south west of England. Any help, guidance or advice would we really appreciated.

Thank you

[Hidden]

Hi, I’m so sorry to hear what you’ve been going through and my first thoughts are you need to start stamping your feet a little. The things you’ve described do sound correct to be linked to your diagnosis. As for ‘dormancy’, were you on medication at that time? (This drives me nuts and I’ve had more than one head to head regarding treatment having a positive effect on bloods, so meds are then lowered and I’m back to square one again....it shouldn’t be this difficult to work out)

Do you currently have rashes? If so, take lots of photos as they progress, pref on a phone which shows the date stamp....how does your skin manifest itself?

With the bruising, do you get any red dots? (Pinpoint Petechiae) I ask cos your clotting factor might have gone up the wall a bit, so this is something they def need to check.

The upshot I would say is you need to make your gp listen and at least send you for bloods, and you need to be referred back to rheumatology or at least dermatology. Could you change your GP? Or see a different one at your practice?

[Hidden in reply to Hidden]

Oh and as well as a visual diary (if possible) a written diary of the week before you see your gp is always an idea too, how long you’ve slept, any afternoon falling asleep, pain levels, symptoms etc so they can instantly see what your life is like currently x

[Christineosh]

You should not be fobbed off. Only you know how you feel, I like many call them flair ups and ask my doctor to do blood tests that look at your immune markers ANA, ESR, CRP. Strangely ESR can be quite low in this and RA so they say there is nothing wrong. Mine is ANA or ANF. Sadly for me the only way to feel better are a boost of Steroids but like all drugs there are side effects so wean off if you feel better. I am a great believer in Vitamin D and take it everyday year round. We take all these chemical drugs and forget some of the important things like Zinc, Magnesium

[stiff19]

So sorry to hear your story, I hope you will get some good advice here, I would tell you to keep pushing but that doesn’t always work, I’m in south west too , seems to be a problem. Keep pushing though as hopefully at some point someone will take notice, you deserve that 👍if lupus related or not you are struggling with health issues and still need help . What medication did they give you. I was given hydroxychloroquine for initial diagnosis then stopped and I’ve suffered ever since. 🤷‍♀️ You will find support here which will hopefully help with your upset and frustration, 🙏 best wishes 🤗

[Christineosh in reply to stiff19]

Did you come off hydroxychloroquine yourself as if you were feeling better why would a doctor stop it

[stiff19 in reply to Christineosh]

Thank you that’s exactly my point, it helped but not everything but Definately my hands and rather look at dosage or anything else because bloods ok and I think as I’d complained they were taken away and told fibro diagnosis and she denied my hands were a problem 🤷‍♀️ I have numerous photos and other docs acknowledgement to state otherwise. I had awful rheumy experience.

[Christineosh in reply to stiff19]

Did you get up to the full dose. The trouble is doctors put Lupus and Rheumatoid Arthritis together, my sister has RA and we both react to different drugs. I have splints for my hands that help to rest the joints or you can get a thinner one for the thumbs

[stiff19 in reply to Christineosh]

I was on 400 hydroxy then bloods clear she stopped them.