Has anyone here been prescribed Duloxetine for neuropathic pain please? I've been suffering with chronic, debilitating headache since April and no meds to date have made the slightest impact on it. I've read a few negative comments about the drug on patient.co.uk forum so I'm a little wary but although most seem to have come from those who have been given it as an anti-depressant. By all means PM me if you'd prefer to discuss any experience in private. Thanks and healthy wishes.
Duloxetine for neuropathic pain. Any experie... - Vasculitis UK
My husband who has WG suffered cronic headaches but we can't figure out why. He was given Amytriptoline (anti depressant) in small doses (30mg). It seemed to take a while to get going, but his headaches, which were just in the mornings, have all but stopped. Not sure if this has any relevance to your problem but just thought I'd mention it.
Im on amytripelene to 30mg nightly for diabetic neuropathy and they help me sleep while been on prednisolone.They are a multi purpose drug and are used in a number of conditions ,I was wary like you about the anti depressant nature of the drug ,but specialist nurse said they are used a lot in the treatment of vasculitis.
I have had chronic ear pain since February when l first reduced pred' from 60mgs to 40mgs in one go. I also went down the Amytripelene path as well as taking Co-Codamol 30/500, whilst taking this l was still trying to reduce my Pred' but couldn't get past 10mgs, stayed on the Amie/Co-Codamol until August when by that time l had had enough and my Consultant changed me onto Gabapentin - like Amie - it takes a little while to kick in but this is now working and l have manged to come down on my Pred' as well.
Thank you to you all. I've been through the whole gamut of analgesics, including opiates, so I'm hoping this drug might be the magic bullet I'm seeking. Naturally, I'd like to get at the cause but my GWP/WG has always been enigmatic in nature and despite being virtually medication free and with totally negative markers, something's certainly amiss.
After much reading up on this damned disease, I'm becoming more and more convinced that for some patients, the disease is able to maintain a low-grade activity which is unmeasurable with current biological markers. It's not impossible that a second, as yet undetected antibody may also be at work or perhaps some up or downstream process has become damaged by the vasculitis or treatment. What ever the cause it's certainly complex and frustratingly enigmatic!
Thanks again and healthy wishes.
I have have reduced pain meds down with the help of acupuncture, I go once a month and have found it helps with some of the pain she has eased the pain in my knee shins and back but because of having steroid injections into hip bursa she has not had any effect on that area. Last time I went I was having terrible digestive problems she stuck several needles into my stomach and a couple of hours later my stomach started to calm down.
Def worth a go as a lot of pain meds can actually give you a head ache and after constant use they can make any pain worse I think it's called rebound.
Hi Tracynoe. I've already been down the acupuncture route and it made no difference what so ever I'm afraid. I'm virtually medication free so it's not analgesic neuralgia (rebound) either. I suspect the cause is very low grade disease activity, despite nothing showing in my markers (they barely did even when the disease was rampaging) and David Jayne at Addenbrookes has suggested there are two types of GWP patients (even possibly two different antibodies): High activity, treated aggressively who often achieve good quality, long term remission and those with less pronounced presentation, treated less harshly who struggle to achieve a decent level of remission and show signs of active disease despite no biological markers and irrespective of long term treatment. Vasculitis is enigmatic enough without being sub-divided! Thanks for your suggestion.
I do get to hear acupuncture is part of pain management on NHS.
Not sure where one can access this weekly in the North West but it may be worth asking GP. Certainly, this is offered in some London NHS hospital. I'm sure there are other hospitals which offer acupuncture.
As you'll see from the above, I accessed acupuncture on the NHS here in north Cumbria but sadly on this occasion, it was of no benefit.
Almost two weeks into the Duloxetine @ 30mg and no pain relief what so ever. In fact, in the first week the headache got worse (a side effect for 1 in 10 apparently) and I was rather nauseous. Having since spoken to a number of users and medical health professionals, I now have serious concerns about continuing this particular drug after hearing of personal horror stories from patients during withdrawal.
I can sympathise with you as I have had headaches for 6 months,thankfully they are now starting to settle a little.
I know you have tried lots of different treatments but I wonder if you have had a referral to a chronic pain clinic. They are run by anaesthetists with input from a multi disciplinary team. Apologies if you have already gone down this route.
I hope you manage to find an effective treatment soon.
I've been under David Jayne at Addenbrooke's for the last 5.5 years ad have an excellent consultant here in Cumbria. The Duloxatine idea was that of my pain management specialist in Carlisle who I've known for more than year and he's rather stumped. Next option may be botox injections into the skull but I'll have to very convinced before I agree. I'm pretty well informed scientifically as I have a molecular biology background (plus it's my way of dealing with things I guess) and it's not been unusual for me to be more aware than some consultants I've encountered (without wishing to sound arrogant). I suspect the cause with me is actual nerve damage as the brain itself has no pain receptors and if that is the case then only a nerve block treatment is likely to have any impact but as a rule they're difficult to administer accurately and can have so rather unpleasant side effects. However, time will tell!
Thanks again for your help.
I thought that you probably had explored every option!
I know from my professional life that nerve blocks can be very effective if administered correctly but I would feel the same as you about skull Botox.
Here's hoping that they can come up with something soon.
Excellent discussion, you two.
I don't think you sound arrogant at all, Martin if I am honest. I am also very cautious.
I'm also not sure if there are enough studies on pharmacology and autoimmune conditions. Autoimmune condition is profoundly tricky. Any chemicals you take in may end up making autoimmune worse (?) I have chemical sensitivities.
Has anyone else been offered psychotherapy or physio for chronic pain management? I thought it would be a total waste of time but I haven't decided yet.
Psychotherapy and physio is usually offered as part of a specialist chronic pain management service overseen by an anaesthetist. I was considering going down that route but thankfully having more good days than bad now, the pred and MTX seem to be working.
I am going to see a psychotherapist however to help me come to terms with the fact that I don't have a definitive dagnosis other than " an autoimmune disorder ". I have had psychotherapy in the past and found it really beneficial. Certainly physio and psychotherapy won't make things worse!
Many thanks for your encouraging post with helpful and positive advice. I am currently going down that route myself. I was (I still am to some extent) sceptical and then I saw your helpful advice.
It sounds like you CERTAINLY have a story to tell! Autoimmune conditions are often difficult, complicated and hard to diagnose. I'm sure you had to struggle both with the condition and many challenges involved.
Very pleased to hear that psychotherapy helped. It's nice to hear something so positive. Thank you so much for sharing!
I'm also on the psychotherapy path and having undergone some Transactional Analysis therapy a number of years ago I decided to embark on it once again this year in an effort to help me deal with my illness and other aspects of my life. Unfortunately, in my region the waiting list for such help is an appalling minimum of six months and even then there is no TA therapy available so I pay privately. My therapist has generously given me a substantial discount which helps and I see it as part of my weekly living expenses. i.e. soul food
I'm using a combination of TA and Mindfulness and the latter undoubtedly helps me to deal with the pain from the headache. If anyone is interested I can heartily recommend Rob Nairn's 'Diamond Mind' book and the free to download meditations from franticworld.com/free-medit... are excellent. Any therapy that insists on eating chocolate for your health has to be okay!
If anyone would like to discuss any aspects of TA or mindfulness then please feel free to PM me.
Healthy and happy wishes for 2014 and beyond.
I don't know if our headaches have the same kind source- but I get a lot of them. Inflammatory headaches. I have quite a few strategies evolved over time.
The headache clinics recommend magnesium on a regular basis. Don't know if it would suit you, but it was discovered in Eurpope I think, to reduce the severity of headaches, especially when people use it regularly. I'm not sure if relevant to you.. just thought I'd mention it.
I personally find that I get fewer headaches if I avoid certain types of mobile phones and certain trigger foods- again, this may not be relevant to you personally. But worth seeing if your headaches get worse in different circumstances.
Nefopam, a prescription medication used by GPs either alone or as an adjunct to other treatments, seems to be a moderately good painkiller in combination with other things. Some people use that from their GPs with an anti-inflammatory as well.
Some people have success with feverfew herb in combination with other strategies. Some use it as a preventative as well.
A localised anti-inflammatory application on the neck can be helpful, whether herbal or pharma.
There is also a device which cools your head, (migracap) I haven't used it myself but someone told me about it the other day, and said it was good. Treatment with acupresssure - just pressing the relevant point on your own hand- at the moment the headache happens, is more effective symptomatically than acupuncture in a clinic, I find, because the treatment should be 'received' at the very moment the headache happens. The clinic acu over time, as a preventative, would take multiple sessions to 'kick in,' and also it's better in my experience to go for traditional chinese acupuncture.
This is my own personal knowledge but obviously not for everyone. There are other things I am aware of for more horrific one-off headaches, that are stronger ! Good luck with your headaches, I know how awful they can be. Gluten can make vasculllitc headaches worse.. I sent you more details on PM.
Also there are experiments with transcranial magnetic stimulation, which may be relevant to you - ? it's not available everywhere and I've not experienced it myself, but I know some find it amazingly affective for chronic pain - there are probably documentaries you can source on the internet if you don't already know this therapy- the meditation sounds very helpful too.
very best wishes and hope you find the right solution...
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