LUPUS UK
21,377 members16,905 posts

Medication

Hi there, I am thinking of trying LDN , I have Lupus, Fibromialgia and Emocromotosis. I am on steroids immune suppressors antidepressants and I don't know how many integrators and pain killers. I am in constant pain and depressed. I have put on 20kgs in two years. Hoping to find an alternative medication , cos >I'm sure all this stuff is killing me. Anybody tried it, LDN? Low Dose Naltrexone

8 Replies
oldestnewest

Hi Sfigata,

I believe that there are a couple of people in this community who have tried LDN with some mixed results. It is worth bearing in mind that there isn't currently any clinical evidence to show that it is safe and effective in lupus. It is not possible to get this medication on the NHS, so it would require you paying for it privately.

Have you discussed your current treatment regimen with your consultant and how you feel it is not sufficiently managing your symptoms? Have they offered any possible changes or different treatments which may work better?

Reply

Thank you for replying. Yes I have spoken with the reumotologist. She has diminished the steroids and augmented the immune suppressors. Can't feel any difference. Has not suggested a change of treatment. The fact that I have a combination of conditions, which all bring pain, don't know which one is tormenting me at any precise moment! I live in Italy and don't come under the NHS, but I believe it is not expensive.

Reply

How long ago did you adjust your current treatment? It can sometimes take a while (weeks or months) before the effects can be noticeable.

If you would like information about lupus specialists in Italy, there is an organisation there who you could contact - lupus-italy.org/

Reply

Thank you. I'm interested to know what drugs are used in UK for treating Lupus. and which ones are most effective.

Reply

Hi Sfigata,

We have a factsheet about the medications used for treating lupus at lupusuk.org.uk/wp-content/u... (please note that this doesn't currently include rituximab and belimumab - an updated and expanded version of this factsheet is in the final stages of production now).

It is impossible to say which treatments are 'most effective'. The decision to use each treatment is based upon the symptoms that someone presents with and the severity of their lupus. The consultant also needs to carefully consider the potential side effects of each treatment to look after the long-term wellbeing of the patient.

Reply

Hi there, I struggle typing a lot so hope this makes sense. I have a multitude of neurological and autoimmune diseases, and have been on god knows how many different horrendous medications since this started with VM 6 years ago. Had adverse affects with most, one in particular we feel impacted highly. Was on 600+ a month for years. Only 28 and decided enough- with Docs supervision and very tough road off all pharma drugs now. Started LDN Jan this year, N.E seizures stopped, and brain fog lifted- zero side affects, non harmful, actually boosts immune system (loads of info on LDN groups on FB, the HU forum is rarely active but FB has loads of info, and people's experiences)

Things still tough don't get me wrong, but LDN, CBD oil and a gluten/dairy/sugar free lifestyle and I'm SO much more under control of my body, and coping a lot better.

Highly recommend 👍🏼x

Reply

This comforts me. I wasn't intending to go "Cold Turkey" from the traditional drugs. but I feel steroids are killing me fisically and emotionally. not sure what the imune suppressors are doing, nut not helping very much with the pain. the reumo, says I have fibromialgia also, so I really don't know where I am. I see you use CBD oil, that helps with the pain?

Reply

Yeah coming off all Pharmas was my decision, but it got to they stage where I felt they were all eating away physically and mentally for me personally.

CBD oil for pain, muscle spasticity, and post seizures. X

Reply

You may also like...