Looking for advice please: Hello, I was diagnosed... - LUPUS UK

LUPUS UK

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Looking for advice please

Lisagill
Lisagill

Hello, I was diagnosed with SLE lupus overlap disease, raynauds and arthritis after the birth of my daughter nearly 5 years ago. I have tried and been on a combination of Methotrexate, mycophenolate, hydroxychloroquin (maximum dose), prednisolone, IV Epoprostenol infusion, amlopodene, sildenafil (maximum dose) and currently cannabis oil. I have yet to find an effective medication that combats all of the symptoms. The cannabis oil defiantly helps with inflammation however does not seem to help with the fatigue, hair loss and rashes. I was wondering if anyone had tried krill oil? These seems to be quit a bit of research happening on that and wondered if anyone had seen any benefits? As none of the medication I have previously tried had been effective my specialist is recommending we try Rituximab or Belimumab next, has anyone had positive experiences of these? The best I have felt so far is when I take a both cannabis oil and prednisolone, however I am eager not to go bk on the steroids as they are so hard to come bk off and don’t actually seem to fix anything. Any help or advice would be much appreciated.

4 Replies
oldestnewest

You could try low-dose naltrexone - worth a shot before you go on the harder stuff. There's info about it in this Fb group: facebook.com/groups/LDNRT/a...

Lisagill
Lisagill in reply to Treetop33

Thank you, will have a look

Paul_Howard
Paul_HowardAdministrator

Hi Lisagill,

I'm sorry to hear that you have not yet had much success in getting control of your symptoms with the treatments you have tried. If you take a look at some of the past posts about rituximab on the forum you can read about people's past experiences. You can find these posts at healthunlocked.com/search/p...

Looking at the evidence, there is some to suggest that Krill Oil may help in the management of some symptoms in a similar way to other fish oil. The evidence is limited though and the effects of long-term use haven't been proven to be safe. It is worth discussing it with your doctor because it could potentially have an impact on blood disorders, blood sugar levels or interact with some medications.

Lisagill
Lisagill in reply to Paul_Howard

Thank you for the reply, I will check that link out and ask my doctor about the krill oil.

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