Duloxetine for Small Fibre Neuropathy anyone?

Mat48
Mat48 Member Posts: 1,161
edited 1. Dec 2014, 13:35 in Living with Arthritis archive
Hi - has anyone here tried this drug after intollerance experiences of many drugs to date? I have RA but am currently unmedicated for over five months. I've just been been formally diagnosed with progresive small fiber neuropathy by a neurologist - cause as yet unknown - but await more thorough investigations in January so about to start this drug to try and relieve severe nerve pain in arms and legs now. Would be interested to learn more from others with SFN and RA - especially if you also take Duloxetine.
If you get lemons, make lemonade

Comments

  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    The old story Mat what does for one may not do for others I have been on every neuropathic drug there is and nothing worked for me till they tried IVIg which I get every three weeks.

    I have a very very rare small fibre NEURONopathy which my neuro is sure it is Sjogrens that is causing it rheumy not so sure. I have just recently been diagnosed with polymyalgia rheumatics and 30% of people also have Sjogrens and sfn. If my memory serves me rightly do you have problems with your eyes and dry mouth? Are you getting checked for Sjogrens? Did they do a skin biopsy to diagnose the sfn?.

    I hope the Duloxitine helps your pain there are quite a lot of Nerupathic drugs they can try, meantime some (((()))) iI know how much pain you are in.................Marie x
    Smile a while and while you smile
    smile another smile and soon there
    will be miles and miles of smiles
    just because you smiled I wish your
    day is full of Smiles
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    I take duloxetine for neuropathic pain in my shoulders and arms. I was started on 30mg a day but this was increased by my GP to 60mg. It has helped a lot and long term no problems. It did take about 4 weeks to really kick in and I did have some feelings of nausea at first and then also when the dose was increased but this only lasted a few days. I also had a dry mouth for a while.

    Good luck
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • Mat48
    Mat48 Member Posts: 1,161
    edited 28. Nov 2014, 15:04
    Thanks Marie. I stopped coming here for the reason that I my symptoms are just so autoimmune and non-arthritic that it seemed like the wrong place for me to come for support. But I've thought of you often as I believe you are one of the few people I've come across who gets IVIg for SFN and you have been very helpful in the past too.

    Mine is pretty advanced now having been left for too long - about three years all or more - assumed to be a response to Methotrexate for ages, then Raynauds for a while and now I'm awaiting further investigations having finally seen the neurologist on Wednesday. I knew it was SFN and my rheumy thought so too although no suggestion as to the cause.

    It's very painful and I've lost a lot of sensation in my feet and hands now (how can this be I wonder - such a contradition?!). I've tried Amitriptyline for 3 and half years - worked quite well but gave me heart palpitations so I came off about three weeks ago and have had a major surge in symptoms. I tried Gaberpentin for three weeks - which I had a dreadful response to.

    And yes I do have very dry eyes, nose and skin and stomach problems (also yet to be investigated) but am negative for Ro and La and ANA - not had lip biopsy and no one has suggested Sjogren's to me although I was told the sicca was part of my RA. My RA seems to be a very deviant sort that has gone into hiding although I have periods of intense stiffness. Most people would say this is a great thing but for me it's a curse because I can't access any of the immunesuppressant drugs now (having tried and failed 3 DMARDs) until it comes back in the form of synovial swelling.

    My GP and rheumy believe mine is extremely rare and as I live in a remote place I don't have access to any multi-disciplinary team. They think it will be classed as idiopathic but are quite sure it's progressing and my inflammatory markers are high.

    My neurologist seems very thorough and took my symptoms seriously which was a relief. He says I have to wait until the New Year for a whole lot of tests - which need planning ahead.

    I'm presently off my food and very depressed with all this so it's really good to have someone who knows how it feels - although I wouldn't wish it on my worst enemy of course. I get some relief during the night from cool soaking of my extremities but sleep about 3 hours max because the burning pain breaks through. Hoping the Duloxetine does something but reallly not looking forward to starting. I keep looking at the box in terror as Gaberpentin sent me off my head! How are you and how is the IVIg for you?
    If you get lemons, make lemonade
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Thanks Slosh - that's very good to know. It has been bothering my shoulders and arms too lately so that's interesting to know also. Cheers, Mat
    If you get lemons, make lemonade
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    Try soaking feet and hands in Luke warm water with Epsom salts I find it helps dampen down the burning a bit it may give you a little bit of relief.

    My ro and LA were also negative Ana border line , Idid get the lip biopsy done it came back borderline positive and I do regret getting it done as l have been left with a partially numb lip.

    I do get some relief on the IVIg but only at rest and dip very badly in my third week they have just upped the dosage this week to see if iI will get longer out of it. My ESR has always been high and rheumy put it down to the IVIg but we know now it is down to the PMR as since been started on Pred it has come down dramatically.

    It is a pity you hadn't been referred to my hospital in Glasgow as it is a teaching hospital although your Neuro seems to bee on the ball. It is so long ago that I tried Duloxitine I can't remember what side effects it gave me, let's hope it works for you and quickly. If there is any info you want to know give me a shout I will be pleased to try and help if I can. X
    Smile a while and while you smile
    smile another smile and soon there
    will be miles and miles of smiles
    just because you smiled I wish your
    day is full of Smiles
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Thanks Marie this is all really helpful to know. We are considering moving to Glasgow but currently finances won't allow. Because the NHS board where I live pay to get the consultant rheumy up here every two months my GP explained this morning that they probably won't countenance sending me outwith the area the rheumatology contract is with. I explained that this is a problem for me on several levels and he said I might be able to attend the vasculitis/connective tissue clinic in Aberdeen if I pay for the travel there and back myself. My husband thinks this might be our best option even though we both feel it's wrong and we aren't high income. I'm volunteering a lot just now in the hope that maybe this will lead to paid work eventually but the problem is that every time I go away for training or work I get really ill afterwards. I really would like to be offered IVIg or Rituximub ideally because I think my immune system is presently going crazy/ hyper and I feel dreadfully ill and am bed ridden much of the time just now. It's not like me and very frustrating.

    However if the neurologist finds that my SFN is autoimmune mediated/ inflammatory then my GP may be able to make a case that I need more specialist help than my rheumy is able to give - if for e/g Vasculitis flagged up or my ANA changed to positive or something. But he says with SFN this would be pretty unlikely and as I have a confirmed diagnosis of RA that's what the health board will go by. I don't have PMR and my fluctuating ESR is seen as a sign of autoimmunity but not of much else they tell me. For me it represents the way I am feeling pretty accurately usually but they've stopped checking it since I came off my drugs five months ago so I had to push for it to be done again last week. Nothing else but inflammation flagged up though so I do feel whatever is causing this SFN it must be inflammatory in some way.

    PS I'll buy some epsom salts online - thanks!
    If you get lemons, make lemonade
  • stickywicket
    stickywicket Member Posts: 26,270
    edited 30. Nov -1, 00:00
    Hello again, Mat :D I'm afraid I don't recognise the med but then I don't have neurological problems. I hope it works for you.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Hi Stickywicket. Glad you don't have neuro problems and I hope this finds you well. Mat
    If you get lemons, make lemonade