SLE Lupus

Hi, just been recently diagnosed with SLE Lupus. Have never taken meds. My Rheumatologist started me on all of the above. However, had severe reactions to the meds except to a very low dose of hydroxychloroquine, change of diet (excluding all the night - shade foods), tripling the intake of omega 3's, lots of salmon, calcium+vitamin D3, at least 5000IU and exercise. It has made a difference considering being very limited to the certain meds that my body will except. I've discussed my situation to someone in a Research Study regarding getting into their program, but they told me I'd have some kind of organ failure. So, I'm looking into more diet changes and herbal remedies. Does anyone have had any experience with Manuka Honey and lupus?

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  • Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

    I am not clear what your question is about and you mention taking drugs "above" but the only reference is low dose hydroxychloroquine (Plaquenil) which is an anti-malarial.

    You must be guided by your rheumatologist and should not take anything without their knowledge. Having a healthy diet is very important, but there is no evidence that diet makes any difference to the course of the disease. I do not know to whom you spoke, but only your doctor can tell you if you have organ involvement. If you want to go into any research programme you must coordinate this with your rheumatologist.

    It is very important that you understand that herbal remedies can be harmful and many items sold are not "regulated" because they are in a different category from drugs. Some of these herbal remedies can exacerbate the symptoms of lupus and some can affect the kidneys. Just because they are "herbal" does not mean they cannot do any harm. They can and do.

    Please do not take anything or change anything without express approval from your rheumatologists. If these "herbal" products were any good, do you not think your physician would know?

    We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

    By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

    When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

    Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

    I look forward to talking with you more!

    Sometimes we need to talk to people who understand and who are not family or friends.

    With good wishes!

    Ros

  • Like you, I've had severe reactions to the immunosuppressant and anti-malarial medications commonly used to treat lupus. I'm now treating myself with a strict anti-inflammatory diet as it's the only option that doesn't seem to involve losing my current quality of life. I've been ill for years, undiagnosed, and have managed by pacing my energy expenditure, acupuncture, healing and cutting out wheat and dairy. I've only just started the anti-inflammatory diet but it seems to make sense. There's no honey allowed, so I can't help with that I'm afraid! I wish I could put my faith in the medical profession but they've failed me at just about every turn and many physicians appear so blinkered by their own arrogance that they are unable to admit the most obvious limitations of their medications. I would echo the point from Ros, that herbal medicines can be very dangerous in their own right and many have negative interactions with conventional medicines. I'm not sure that all doctors would acknowledge/be aware of the benefit of some herbal remedies however, as many just seem to stick with their tried and tested favourites from the pharmaceutical companies.

    Best wishes and good luck!

  • I am very sorry to read how doctors have not managed to get to the root of your problem. If you feel this is rheumatological, I would ask your GP to refer you to Dr David D'Cruz at St Thomas' Hospital Lupus Clinic.

    Would that be a possibility for you?

    Be well!

    Ros

  • I will ask, although as I live on the Isle of Man I'm not too sure.

    Thanks!

  • I do not see any reason why you cannot be referred. Patients from all over the UK go to St Thomas. You can even stay at The Simon for free as an NHS patient. Someone accompanying you will have to pay.

    If you join the LuPUS Message Board, you can ask about The Simon.

    Be well!

    Ros

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