Ok I now feel it is my duty to share this with you all.....I started taking LDN Low Dose Naltrexone (got it privately as could not get it from my Rhuemy-although he knows I am taking it and is still monitoring me).
Since starting on 11/3/2014 I have managed to come off of steroids (Pred)- Completely.....I had been on them continuously since Nov 2013 and had tapered from a 3 week course (starting at 20mg) to 10mg daily, it should have gone down to 5mg, but at 5mg I could hardly get out of bed! so I stayed on 10mg daily -but even with the steroids I still had a lot of pain/fatigue/brain fog.the usual Lupie things!
The way it was THEN:-
10mg daily - still having to take pain meds (paracetamol and ibuprofen - top daily doses when in a flare-tramadol never worked for me, and codeine based used to make me constipated!)
If I had a cold or any sort of infection I was in agony- I always went into a flare after any sort of illness-have done for the past 7 years-found it even hard to lift the duvet-and had to get in a comfy position and not move until I fell asleep! During my last really bad flare around Xmas I had thought to myself that if someone offered me a tablet and said 'This tablet may kill you but it will take away the pain' I would have taken it-no word of a lie!!!
HAIR - limp and lank and coming out in handfuls -always loads on pillow in the mornings (this was probably a result of the Methotrexate I had been taking prior to Nov-which I had to come off of due to it affecting my liver very badly)
IBS-always had it
NAILS-constantly breaking and really flaky
MOOD- Very, very low.
WORK- Often had to have days off (even though I am now only part-time) or get sent home early
EXERCISE- Absolutely NO WAY!!
HOUSEWORK-Just out of the question! Just the very basics.- I would have to take breaks whilst hoovering/sorting washing.
The way it is NOW
3.5mg Liquid LDN after 9pm and before 2am before I go to bed.
For the first couple of days my pain increased-I had been warned this would happen-but I persevered, and since I have been great-I am still aware that the pain is there-but it is so subdued that I can cope with it-I have tender points on both elbows and knees (which I have had for years anyway) but again I can cope-if I do get any bad pain I just take paracetamol-but my pain levels (fingers crossed) have reduced SO much!! I have had 2 colds-and managed to carry on working throughout and did not even have to go home early. (Would not even have been at work before with a cold-I would have had to call in 'sick')
HAIR-My hair has returned to normal - albeit very grey-but now have the energy and motivation to have it done
NAILS-Have started growing-have even got painted toe nails
MOOD- Just so much brighter- I now have hope for the future
WORK-Have not had to take any sick leave since starting LDN
EXERCISE- Have started a Health Programme through my GP- do a gentle exercise class weekly
HOUSEWORK - It is getting there, but I have a bit of a back-log with that!
Even though I am so much better- I know that I will never get to climb Kilimanjaro, and have accepted that, by the end of the evening, climbing the stairs is hard work - I do still sometimes get very fatigued - especially after working an 8 hr shift (which I do 3 days a week)-and I do still have to pace myself-still use the 'spoons theory' - and sometimes my hands are still quite weak i.e turning on taps/opening doors/carrying shopping etc., BUT I am so much BETTER than I was before I started LDN- And I just thought it is my duty to let everyone know!!
If anyone is interested in trying it for themselves just Google LDN Research Trust - also have a look at Dr Chris Steele's YouTube (from This Morning) video - there is lots on the internet about it and many groups you can join to find out other peoples experiences with this great (NO side effects) drug- I am NOT trying to sell it and make any money out of it-just want to help other Lupus sufferers - who - like myself - have suffered enough