I've tried lots of different approaches to treating my lupus. I feel like I've now gone as far as I can using diet, herbs and natural remedies. As you know I've also tried Hydroxy but couldn't continue due to side effects (terrible nervousness and stomach discomfort) and taking steroids was a disaster (they made me suicidal).
I've been flaring since the beginning of February, with awful joint pain initially, and since then I've been in bed a lot due to the flu-like aches, fatigue and horrible burning pains in my tendons. This makes walking and using my hands difficult due to the pain and weakness. I feel at the end of my rope. I need to be well - we are just about to buy our first house and I need to be well enough to cope with the move. So this leaves me with 'what next?'
A friend of mine has been diagnosed with MS this year and she's been taking LDN since March and is already feeling a lot better on it. She has more energy, feels buoyant, and her MS symptoms are already reversing. She knows someone who has MS and was in a wheelchair in 2006 before she started taking LDN, she has never needed the wheelchair since. I also have a friend with lupus and fibro - she says she can't do without LDN, it has improved her quality of life greatly with reduced pain and more energy.
I have now called the scottish pharmacy who have referred me to a private doctor, Dr McCall, who will call me next week for my consultation and get me started on LDN. The first consultation is £30 and the drug costs £18.50 per month. I have to pay for a prescription every 3 months which costs £25 each time.
I thought I'd tell you what I was doing so that you could follow my progress - I know there's a lot of interest in LDN on here. I'll let you know how it goes.
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Maya23
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This sounds like a positive step forward for you and I know you have done a lot of research into this before making your decision. I would have had no idea about how you go about getting these off-licence drugs so it's very interesting to read your post and follow your discoveries and experiences with it. I've not heard any negative stories about LDN - the worst case scenario I've heard is that it didn't do anything for the person concerned and as I understand there is a low risk of side effects. So all in all it does seem to be something worth trying. Am I right in thinking that it will cost you just under £27 per month - so less than £1 per day? That's not bad if you get the desired results. Do you just take the prescription to a standard pharmacy?
I hope you feel better quickly on the LDN - I think I may ask my rheumatologist her thoughts about it when I see her in November as I'm not sure the hydroxy is doing much for me. Best of luck with the house move!
Thanks! I spoke to my Rheumatologist about LDN last week and he admitted that he didn't know enough about it and in any case could not endorse it. It is not licensed by NICE for low dose use in the UK. So you have to phone up a particular pharmacy (I can let you know the details if required) from which you buy the drug. They give you the number of the private doctor who prescribes the drug for people with autoimmune disease. You have to send copies of letters from doctors and consultants confirming your diagnosis.
It was good to see you this morning albeit briefly. I didnt know you were on here. Thanks for putting up LDN info and how to get it. With my brain being so foggy all the time I just cant take the info in and make sense of it when you have told me about it face to face. This is very useful for me and I will be keeping up with your progress. Thank you dear friend for sharing :))
Well today I had a call from a very nice Scottish doctor, who talked to me about LDN. He told me about some clinical trials for inflammatory bowl disease (and another trial for cancer) - that once they are published, these will blow the door open for using LDN in a wide variety of conditions including SLE. He talked to me about how the lupus was affecting me and decided to start me off on the lowest possible dose of 0.5ml per day, to increase by 0.5ml every fortnight until I found the best dose for me. I was relieved it was going to be baby steps, as he agreed with me about being sensitive to meds and starting with caution.
It cost £35 today for the consolation and for the first month's supply of LDN which shall be arriving in the post in the next 2 or 3 days.
I feel so relieved!! I've been in bed so much over the past few months (and today) feeling really poorly and unable to get anything done. He said that LDN has had a good record at treating fatigue and joint pain in particular. I feel hopeful!
I've received my LDN medication through the post yesterday morning and took my first dose of 0.5mg last night. I didn't notice anything strange happen - and no magic cure yet either!! Of course I'm not expecting any changes in my health until it starts to build up in my system. I take 0.5ml for 2 weeks then increase to 1ml etc until I get to my optimum level.
Just to let you know - after 3 months taking LDN I'm feeling really great!! I've even moved house and not had a flare up!! It's amazing. I get the odd grumble in my joints (not surprising considering all the stress of moving and lifting heavy boxes etc) and I think 'uh oh here we go' but it doesn't come to anything!
I noticed:
after 2 weeks: it was easier to feel happy about life
after 4 weeks: I noticed I had a much higher tolerance to pain
after 6-8 weeks: my immune system seemed to calm right down
I really recommend it. The only side effects have been vivid dreams, and when I was increasing my dose, and trying to find my best dose, I noticed I got a bit dizzy and heart racing, so that's how I settled on 2.0ml. I started on 0.5ml and increased by 0.5ml every fortnight until I found 2.0ml best for me. It's so amazing to finally find a drug that works for me. And it has none of the horrible side effects of the normal lupus drugs I tried. Hurray!!
Hi, I'd be very grateful indeed if you could let me have the info on where and how to get this in the UK please? I have been seriously ill for over 3 years now. First diagnosed with CFS/FM and then 6 months ago tested positive for Lyme disease. I want very much to try LDN as I'm pretty much bedridden now so desperate to ease this pain and inflammation.
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