LUPUS UK
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Armed for doctor appointment 😠

Following on from previous post about disappointing rheumy visit . I have severe stabbing pain in sacroiliac area , hip and leg it maybe from bulging disc .Im going to see gp about pain relief and i have been studying options. I am already taking lyrica. Anti inflammatories:- i can only take very occasional as upset stomach. Co dydramol :- only occasionally as causes bad constipation Paracetamol:- useless, does not help . So i need something that helps pain without the side affects. One idea i was wondering about was fentanyl patches are they a possibility for short term and do they cause side effects? Does anyone else have any ideas ? I need to stay active or things will only get worse and i cant stay active with this pain as very painful to walk . It is so frustrating , im also going to discuss orthopaedic referral as if it is a disc rheumatology dont deal with that . Now do I write all this down and hand it to the gp ?

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Fentanyl is getting increasingly harder to get, same as tramadol, thanks to idiots treating them as if they were recreational. There is increasing evidence that paracetamol acts as little more than a placebo for joint pain, but doctors don't seem to have received the memo yet. You may be able to place argument for the patches if you have a good relationship with your specialists. I've got tramadol at the moment and only use it when I have to, otherwise I don't often need it.

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Thanks for that info silvergilt , i am hoping that this will settle down again so will only need short term relief . It is very wearing at the moment, it is a problem that i have had for years with different degrees of severity. I hope you are keeping well at moment xx

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Check out Low Dose Naltrexone

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A very good shout, due to my own experience and research I could not agree more!! There are also encouraging past-posts on this site. Look into it guys!!

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How would naltrexone be of help with back pain? Do you mean it could be used to prevent addiction?

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First, I am referring to Low Dose Naltrexone which does control pain. I always think it better to do your own research - there is quite a lot out there. I read today of a 65 year old man who has had quite aggressive treatments/operations on his spine and first had to be weened off the prescribed narcotics before using the LDN. He said he is now the most comfortable that he has been for many years. Remember that the Naltrexone is entirely different to the LDN.

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Ok , i will put that on the list for discussion with the doctor. Have you used naltrexone?

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I think that LDN isn't usually prescribed by GPs in the UK? In fact I may be wrong but I don't believe it's licenced for use as an analgesic medication by the NHS - yet anyway. There was certainly a BSSA article by the U.K's Sjogren's expert, Dr Elizabeth Price, saying that research showed it to be innefective as a drug for modifying Sjogren's. That doesn't mean it's harmful or isn't effective of course but it may be quite hard to obtain through your GP.

I have the same dilemma - particularly because my liver soars with NSAIDs and paracetamol. So I'll follow this post with interest. Tramadol makes me very ill - heck only knows how anyone uses it for recreational purposes?!

Best of luck with your GP. Xx

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Or it may be due to spasmed muscles - it was for me. I ended up admitted for infusions of high dose steroids plus painkiller for morning coffee and diazepam for supper. Miracle! Until I developed a severe reaction to the i.v. diazepam but by then the pain was better :-)

Then I was handed over to the pain clinic for the slow approach - which after several months left me in a state I could live with. It does come back - but I'm currently having massage and manual myofascial mobilisation from the hospital physios. But I live in Italy - we use all sorts of strange but effective things here.

I used to get relief from Bowen therapy - it really is worth trying. If it will help you will notice a change after 3 sessions, if it hasn't helped it you can probably stop investing (it isn't cheap but I'd take it for a birthday present). If nothing else - it is available without a prescription and has no side effects.

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Thank you Pro , I don't think my back is in spasm as i have had episodes of of severe spasm in the past that dislocated my ribs . I have been referred for physio but i have found it hit and miss in the past. I will see what advice I get from gp and make a plan of action . Thanks for help xx

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Hey Weathervane, I feel obliged to point out that the LDN is not just a pain killer. It treats/controls a huge variety of problems including Lupus with very few side effects.

You may also benefit from watching some of Dr. John Bergman's videos on youtube. A very interesting man with even more interesting views. There is one on autoimmune problems in general and one dealing solely with Lupus. (It may be the one video - I have listened to so many of them it is easy to get somewhat confused). I feel sure that once you start checking it out you will be intrigued if not totally enthusiastic. I wish you lots of luck.

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Hi ritario,

At present Low Dose Naltrexone (LDN) has not been clinically proven to be safe and effective in the treatment of lupus, although some practitioners have reported promising results. It is likely that it is similar to many other treatments for lupus in that it may be effective for some and not for others. Due to it not yet being clinically proven, it is not licenced for the treatment of lupus in the UK.

It should also be considered that whilst a lot of sources state that there are 'very few side effects', it may not be tolerated well by everyone.

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Hi Paul, Thank you for your response. We seem to have used different sources of research especially regarding the "safe and effective" remark.

There have been many drug trials done and the drug pronounced "safe" which at a later date was shown to be, at the expense of the health of its users, quite the reverse. I say this, not as a defense of LDN, but as a simple fact.

However, I do hold testimonials in high regard though aware of the possibility of the presentation of fakes. I would also expect any bad experiences to be equally presented.

Furthermore, I would never suggest any type of treatment to anyone - if I thought I could be of help to anyone I would simply point them in the direction I thought would be beneficial to them and suggest they do their own research and form their own opinion.

As to lack of trials, perhaps you would like to check

lowdosenaltrexone.org/index...

If it proves successful I will be more than happy to inform you.

I neglected to say that this drug has been around for a long time - Where I buy mine claim to have been supplying it for 30 years.

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Hi ritario,

Whilst there have been clinical trials for this medication for a number of different conditions, including some autoimmune, I am not aware of any peer-reviewed clinical trials in SLE and I cannot find any mentioned on the link that you have provided either. That is why I made my statement.

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Any drug/compound that cannot be patented will obviously have a lack of clinical trial data as (despite clear indication from the medical community of its benefits) pharmaceutical companies do not consider the monetary returns "sufficient". My research to date.(PhD student) has been indicative of a clear "bias", particularly by sites associated with pharmaceutical companies (as is this site). My recommendations to any user would be to do thier own research. After all, the administrator (Mr Paul Howard) of this site and has strong links to Glaxosmithkline. In February 2016 this company was fined £37.6 million for "illegal behaviour" in relation to its antidepressant seroxat. In july 2012, Glaxosmithcline were fined £1.9 billion due to bribing doctors.

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I think one of the reasons we use this site is to help our research another one is to provide support. I would have been in a worse place without it and the wonderful administrators. I don't think everyone has an agenda.

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My comments by no means questioned the importance, helpfulness and support provided by this site. What is imperative is that every user/sufferer is provided with unbiased.information . For example low dose naltrexone There is extensive data (which is publicly available) indicating that for some.lupus sufferers it is very beneficial. To be dismissive of anything that could be.potentially beneficial to any sufferer I consider inappropriate.

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Hi michelleadams ,

It is inappropriate of you to suggest that the information and support I offer as an employee of LUPUS UK and an administrator for this community is biased and that I am somehow swayed by an 'affiliation' with GlaxoSmithKline. I do not have any 'strong links' with the pharmaceutical company. I would like to note that in the past two financial years the percentage of LUPUS UK's total funding from pharmaceutical companies amounted to 0.07%.

This site is NOT "associated with pharmaceutical companies".

LUPUS UK does work with a number of different pharmaceutical companies at times to ensure that patients voices are heard and considered. We do not promote the use of any treatments, whether they are licensed or complementary. We would always advise people to discuss any treatment options with their consultant.

As an organisation which is certified under The Information Standard (a scheme managed by NHS England) we are required to provide information that is up-to-date, unbiased and evidence-based. In response to your specific complaint about my responses to your claims about low-dose naltrexone; I was pointing out that I had not seen any clinical evidence which proved that it was a safe and effective treatment for lupus. You provided a link to some evidence for other autoimmune conditions, but nothing for lupus. The treatment may be effective for some people, but we cannot currently say that this is not due to a placebo effect or any other possible variables. The treatment may also have no effect or potentially not be well tolerated.

I would finally like to point out that this post is in violation of the Terms of Use for the HealthUnlocked website - healthunlocked.com/policies... Your post makes defamatory accusations against a named individual (me) which are libellous. In the interest of transparency I will leave this post on the site, but I must warn you that if you wish to continue to contribute within this community, you must follow the terms of use.

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Hi paul , im a bit disturbed and disappointed about the way this post is going. Should it be deleted ?

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The decision over whether to delete it or not is yours - although I would hate for you to delete it just because it was partially hijacked. As far as I am concerned, the discussion with michelleadams is over and I will delete any further responses.

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Thats fine , thank you Paul

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I have just finished my first week but I am basing my enthusiasm and faith in it on my research. The best part for me is the fact that there are very few side effects. I have a months supply of a fairly low strength but plan to order two more months - each stronger than the previous month. I consider it well worth trying - it is not expensive - will not have to suffer horrendous side effects and I am optimistic by nature.

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Thanks for all the info , im not sure if gp can prescribe it or if would need to see specialist. I take it you are not in UK ?

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I am in Spain. Your rheumy can prescribe it but I cannot say if it would be a private prescription or not and of course because it is not one of the 'run of the mill' drugs he/she may not be aware of it. Perhaps your GP may be able to prescribe it too.

Please, do your research first. I am totally enthusiastic - you may not be.

I will however keep an eye open for any future comments.

Listen to the videos - he is a chiropractor/osteopath which I think would be very beneficial to you. A physio does not have the expertise that I feel you would greatly benefit from.

Just remembered - there is a movement gathering of doctors who are petitioning the government to have the LDN added to the list of approved drugs they are allowed to prescribe which means that the prescription would be private.

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I've replied earlier in your thread about Ritario's LDN suggestion. It's often spoken about on the Thyroid UK HU as well. There is a private doctor in Scotland who is happy to do phone consults and guide users on how to take LDN to best effect re dosage if your research shows it's something you want to buy online and self administer. There's also a UK user with Sjogren's on the Australian HU if you want to ask about it there. X

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I have not come across this drug but ive now read a few articles and it is very interesting but may be difficult to get approval

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Yes this is what I've thought and why I haven't bothered asking my rheum about it yet.

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It will probably only be available via a private prescription and that also probably means a private GP appointment although it may be worth asking your own GP as it seems they CAN write a prescription if they want to. There is also a doctor in Powys who offers prescriptions for it. Though I suspect alongside a lot of other supplements which she very conveniently happens to sell...

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This all makes it sound a bit dodgy , which im sure its not !!!!

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No - it is just the NHS rules and how GPs work. They use it for its approved use. They aren't allowed to just prescribe stuff on the NHS without an approved reason though. Here in Italy I get several therapies at the hospital that would gain raised eyebrows in the UK - but they work. Different cultures.

But often the doctors who set up private clinics tend to have developed their treatments to include a lot of supplements that they then also sell. None of it is done as a charity.

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I keep forgetting you are in 🇮🇹!! I will probably just end up being advised to take paracetamol again 😬

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More than likely - despite Australian studies that have concluded it is no better for back pain than placebo (and at least placebo doesn't kill your liver!).

But IF you have the wherewithal - the other options can be found.

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My GP prescribed BuTrans patches. I can't take NSAIDs, tramadol seems to do nothing but make me go loopy, paracetamol did nothing, and, though co-codamol helped, it didn't see me throught the night and I was getting little sleep. We had a two day trial to see if it has any adverse effects on me, then gradually increased the dose. The benefits of the patches are you wear them 24/7 before replacing them.

We may not be having similar pain, as mine is not a spasm. Not allowed pred in case it makes me doolally.

Might be worth asking? I hope tou get some help x

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