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
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bam1993
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At first I misunderstood the title Bam and thought you were feeling better because you'd stopped LDN. Thank goodness it's the opposite as it's next on my list! I've tried everything else apart from chemo to little avail and heard such good things about it. A friend's daughter with MS is going to try it too. Thank you so much for sharing your results and I'm glad you're feeling better. Fingers crossed I'll be writing something similar soon! x
Thank you Tigerlily4...I hope I have not confused too many people-I do ramble a bit. I also have a friend who has MS and has been on LDN for 6 years, also my prescribing Dr is an MS sufferer who has been on it for 14yrs-it really is a great drug. Good Luck x
I wouldnt normally have read this but came across the name naltrexone when googling for information about going cold turkey.
Why was I googling that.... I had read about the effects that heroin users undergo when trying to stop heroin use abruptly. They get extremely cold with shakes and shivers and then ache all over.
This is something similar to what I and other lupies have had at times and I know steroids stop this type of attack. My higgle di pickled reasoning suggested that heroin addicts might benefit from steroids whilst going through withdrawal. Naltrexone was mentioned in the same article so interested to see that it is being used for Lupies.
Yes, you are right, Naltrexone was trialed in the '80's (1984 I think) and was okayed to use for addicts:- narcotics and alcohol and I believe the dose for that is 50mg daily ( bad side effects only kicked in @ 300mg ) I think but am not an expert on the use of it for the above.
What I am using is LOW DOSE Naltrexone- (quick release) same drug, but in much much lower doses. The reason that drug companies are not interested in trialing it is because it has gone Generic and is VERY CHEAP!! No money in it for them-so they will not run trials for the use in auto-immune disorders. It is well published that it helps with MS and Chrons-it does seem like a miracle drug and too good to be true-but I had to investigate it, as I was desperate-did not want to stay on steroids for the rest of my life.- and at the moment my results have been nothing but positive, so I have decided to share it with everyone as I have had such good results.
There is a lot about it on the internet, and if you Google Low Dose Naltrexone or LDN something positive should come up.
Like I said, drug companies do not want to know, and it is all down to MONEY-they would rather us suffer the terrible side effects - leading to having to take more of their drugs to combat them - and I am not the only one that thinks like that. The Government have been lobbied about doing trials for it themselves-but, kick their keels-or (maybe only in my mind perhaps -take Back Handers-from the big Pharmaceuticals???-) And it is kept quiet.
All I know for sure is that I feel much, much more like my old self-and felt that I should share it-hopefully it will help somebody else out too.
I was curious as to what LDN contains / what compounds / mechanism of action. I'm on it as well. Do you think it's anti-inflammatory? Pity NHS wouldn't prescribe that knowing how useful it would be. If it's good for MS then why not on Lupus? (hate to say this but these are both autoimmune and why MS gets it and Lupus won't?????? What is the position of Lupus UK on this? x
I am really not sure what is in it-or even how it works- something about blocking Endorphins for a while-then because they have been blocked it makes the body/brain go into overdrive and produce more Endorphins - and I know that it helps me cope with my pain!!-and I have not had lumps come (as I used) on the back of my hands-which are my signs of bad inflammation. Are you taking any thing else with it? I have managed to come off of steroids-which I am so happy about!! x
I really wish there was a ruling in this country that every doctor had to make known if they received any incentives of any kind from any drug companies
Better still that any incentives were outlawed. Then we may be better able to trust any advice dispensed
Actually that has generally stopped. The most they can give is a pen, a sample inhaler or patient info leaflets. Although The reps do get involved in providing updates and I have learnt loads regarding doing travel assessments, spirometry and COPD , asthma care, etc from courses they provide.
The drugs available to be prescribed are decided at a level higher than GPS and most doctors. Never mind us mere nurses. We have a drug budget that we are expected to keep below. It is very frustrating at times but we need these people to assess the drugs because unfortunately the nhs is struggling.
We do rely on the courses they provide but even then they have protocol to follow. You do need to be aware that their drug may not be the only one who does that job though and there is a choice.
My daughter was off school for over a year, pain and fatigue, she had voices in her head and serious exercise intolerance. After being on LDN for 2 years she is back at school.. she has her off days like today when her PoTs symptoms just mean she can't stand up, but lemon water and Epsom salts seem to help. The voices in her head were the first to go and then the fatigue.. pain is still an issue but not as much and she has actually managed to do Cross Country at school and complete the course... that was one of the best weeks ever.. She still has these very annoying nodules on her fingers than come and go and make it painful to write, but we're in a much better place than we were so can't complain. She's not well today, her immune system seems to be fighting off lots of stuff since we started another protocol... onwards and upwards... her consultant knows we're on it and so does our GP they have offered us no help whatsoever!
Hi Rustysaddle...I am so happy to hear of you daughters improvement on LDN, and sorry to hear that she is having a bad day today. As I stated I do still get a bit of pain/fatigue-but so far it is manageable. It must be truly awful for someone so young to have Lupus-mine did not show up until my late 30's although it was not diagnosed properly until I was 53!! Are you in the UK? If so what Dr is your daughter under? I ask as I went to the 'London Lupus Information Day' on Saturday and there was a young adolescence Dr there, from UCH - I asked him if he had heard of LDN-to which (of course) he said No-but he did hear me out, and came up to ask me more in the break-he said he was going to look into it-so you never know!! I too, used to get the nodules on my fingers/thumb-(not had since starting LDN) and they really are very painful-and put the digit out of use for the day-then often disappear overnight!! Strange things that happen to us Lupie's!! Hope your daughter is feeling a bit better tomorrow-as you say Onwards and Upwards! And thank you for your positive comments about LDN-Julie x
Thanks Julie, she's just been diagnosed with chronic pain last 3 years and they seem to be reluctant to put anymore effort into finding out what's up. I wish her nodules would go... we did get her acrylics and it helped but cost a fortune.. I think biting her nails is really not helping, but school make her write, so she writes with the other hand, then that one swells up and then she's in agony.. We are going to try and push for a dx of something, to help others understand what she's going through. She also has aspergers, which she's on GcMaf for and doing fab with that. Like you say onweards and upwards Sarah x
I read your post and instantly recognised your story from Saturday! Lupus uk info day ! Now I'm out of bed downstairs and with my paper work from Saturday my Miss Marpel instincts proved me right!! There was you name ...Thank you for sharing your story here and with me on Saturday ! It was informative the kidney DR very impressive! No steroid approach..FUNNY though that NO one seems to have heard of LDN in the medical profession! Two top Drs each no NADA!.... I'm so pleased for you with your improvement ..I hope it continues..
Hi Bam 1993 again....sorry to say ! I think you should edit the word Culprit in your title to Thanks to! ...this will be flagged when people search for positive info on a LDN ...culprit ( and I get your quirky ness or sarcasm!) sound like it was bad for you ...people might not continue to read on about your good news!
Sorry to be nosy ...just like you want people to know the benefits !,
Thanks Donna-it was lovely to meet you too....My boyfriend was getting a bit restless on Saturday-so we did not stay for the Kidney Dr talk-we went to get something to eat-but saw some of the girls after as they were all coming out and I asked if I had missed anything-and they said that the Dr had said that he/she did not like the steroid approach. I have been lucky so far in that my Lupus has not affected my Kidneys-although I have had pneumonia - 2007, before diagnosis (I know now that it was Lupus related) and my Liver has been affected, by the drugs I took previously. Thank you for speaking up too, during the Pain Management talk-I felt like a right 'party pooper' but I am sure he was trying to say that we can overcome the pain by exercising?? My boyfriend agreed with him a bit and said that was not what he was saying-but that was how it come across to me. and as you so rightly pointed out there could be your baby balling it's eyes out - needing you to look after it-but when the pain is 'on' you-all the will in the world cannot get you off of the sofa!!! Did you see the poor bloke at the back, whose wife spoke up after you? Gosh, he was in a really bad way!! Anyway, back to the LDN...the other Dr came and spoke to me about it during the break - and said he was definitely going to investigate it - so you never know!! Also, I am going to take your advice and Edit the title-I really do not want put people off - just to let them know my positive experience with LDN!! My Mum always used to tell me off about my sarcasm-but sometimes I just can't help it!! x
Hi Bam thanks for getting back to me ! Didn't want to offend you ! Sarcasm .....I'm a master of it! All done in the best of humour and the best possible taste!
Lucky you boyfriend came with you! Bl***y! Hero!
I wasnt wanting to wind that man up! I do follow a no drug regime ..( no choice I that!) I have had 3 courses of CBT each at different hospital venues and for different pain problems I could probably teach it !, . I have had a ,lamenectomy on my S4S5 disc..( that's why I have a stick ,cos my leg is Gammy!) I've been receiving facet joint injections for that for 3 years ..I have lupus and fibro and Hashi's and more and have a bag of meds I can't tolerate ...so don't take them..so I do follow the pacing ,moving stretching regime..for my pain stuff..I was very fit ..windsurfing ,surfing canoeing and running ..My son is a PE teacher .I know what it's like to get good endorphins after exercise that lift you and give you new energy and omph!,......... But lupus tiredness ..Hashi's and Fibro is beyond the normal as I was trying to say..! You can stretch on the settee move your legs and feet ...and sort out how you deal with pain...it doesn't hurt more if you move or do something ...but the tiredness STOPS you moving !, ho oh ho ..
My course format papers were on the same lines as his written ones!,
It helps to if you can go out in the sun ...! I can't ...been bad since the sun put his hat on...playing a dodging game !,,,
Best wishes speak to you soon ..will email you have your address.xx
I have been taking LDN for a few years, and it has helped me a lot. My energy levels increased and some niggling symptoms disappeared. Unfortunately, at the moment I have terrible sciatica which is not helped by LDN. I have had it for months and have had physio and the doctor has just sent me to have a hip x ray. Prior to having the sciatica, I had felt really well for years. I wish I had been able to take it when first diagnosed.
Innovation is needed in my opinion. If patients are saying something is working/works well, why not let us try given the benefits? x
There is an awful lot going on, omega, - to try to raise awareness - in February there was a meeting in Parliament to raise awareness (Mia Griffiths MP is on OUR side and I believe led the debate!!) I wrote to both my MP and my Mums MP asking them to attend.- of course - they did not-but both did write saying that they would get feedback from it, if I hear of anything else happening I will let you know. x
Hi there is a petition on LDN for the European Parliament to make it available for autoimmune illnesses. They need 5000 signatures. I will try and put the link on .
Hi Owensjh13, Thank you for sharing the link-although I have already signed it some months ago....but others may wish to add their names-so thank-you. Are you on LDN yourself?? If so. how long have you been on it and do you feel the benefits? Also, do you take anything else with it? The last couple of days I have not been so great-I had to stop taking my LDN for 2 nights as I had some major work done at the dentist-and you can not take it with an opiate painkiller- think it could take a few days to get back to where I was..but on the whole, I am still so glad that I found it - and felt it my duty to share it with others.
Hi I am not on LDN but I would like to. I take hydroxy 200 then 400 every other day. I am worried about being on it in case it affects my eyes. I have had SLE for 29years and been on a lot of different drugs. So I would like to try LDN to see if it works for me with no side effects. x
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