Hi, Welcome!

The community is a safe space for people living with and connected to arthritis to ask questions and share experiences. Get started by registering here and posting your first comment or question!

Sign In with a Versus Arthritis account

However your life is impacted by arthritis we want to understand more about you so that we can make sure we continue to develop our information, support and services such as the online community.


If you've not already, please take 5 -10 minutes to fill in our survey. All information you provide will remain anonymous and be treated in the strictest confidence. TAKE OUR SURVEY

Trigeminal neuraliga/steroid injection? - help!

simplepimplesimplepimple Posts: 7
edited 25. Sep 2019, 05:30 in Say hello
Hello everyone - I'm hoping someone might have some advice to offer.

I had a first rheumatoid consultant appointment back in May and was given a life transforming steriod injection. It was heaven. I've noticed in the last couple of weeks that I'm slipping back into the difficulties I had previously - getting slower, joints more stiff & swollen etc. Luckily I have a follow up towards the end of this month and I'm really hoping I'll be offered a second injection.

Yesterday I was diagnosed with Trigeminal Neuralgia and put on Carbamazepine. I don't feel I have much choice as the pain is pretty awful. I work and am desperate to stay at work plus I don't get sick pay.

Does anyone know if I'll still be able to have the steroid at my next appointment if I'm still taking the Carbamazepine?
The trouble with having an open mind, of course, is that people will insist on coming along and trying to put things in it.

Comments

  • moderatormoderator Posts: 4,095 mod
    edited 30. Nov -1, 00:00
    Hi SimplePimple and welcome to the forums.

    Good to hear that your steroid injection last May worked so well - it doesn't always work for everyone so nice to hear it was so effective.

    As you have discovered, steroid injections are not a permanent fix and hopefully you will be able to find a longer term course of medication that works for you.

    I had to look up what a diagnosis of Trigeminal Neuralgia meant - for our readers: typically, episodes of severe, sudden, shock-like pain in one side of the face that lasts for seconds to a few minutes.

    On our page about steroids: https://www.versusarthritis.org/about-arthritis/treatments/drugs/steroids/

    - it says that Carbamazepine may have interactions with steroids and to let your doctor know that you are taking it before any injections.

    Please Note
    None of us here are health practitioners and any replies would reflect personal experience and not medical qualification.
    Please do talk to your doctor about the best treatment for your condition!

    Would be very interested to hear about this so do come and keep us up to date on your progress and let us know how you get on.

    Best wishes
    Brynmor
  • simplepimplesimplepimple Posts: 7
    edited 30. Nov -1, 00:00
    Thank you Brynmor - it was my first steroid and quite transformational. I so appreciated it as things were very hard back in May. The consultant also suggested Amiltriptyline which oddly enough can be an optional treatment for Trigeminal Neuralgia (spelt wrong in my subject heading - doh!) but I didn't want to take that at the time due to the risk of it making me drowsy and not being able to drive to work. The Trigeminal doesn't give me much choice - I had to do something but wonder if the best idea is to swap to Amiltriptyline - with appropriate guidance from medical professionals.

    It's all got a bit disjointed as I haven't had a follow up with my GP after the consultant due to a work relocation but don't want to register with a new GP till after the consultant appointment at the end of September. (I just hope I'm no longer drowsy so I can drive the 200 miles there - something I'd never have been able to do pre steroid injection.)

    I'm always reluctant to take any oral meds as I have a naughty hiatus hernia.

    I appreciate the time taken to respond to me - all thoughts are valuable. I'll book in as a temporary resident asap and see what they say.
    The trouble with having an open mind, of course, is that people will insist on coming along and trying to put things in it.
  • simplepimplesimplepimple Posts: 7
    edited 30. Nov -1, 00:00
    Goodness - I thought I'd replied but then it disappeared!

    Interestingly I was also advised Amiltriptyline at the Rhematology appointment - I didn't try it as I was concerned about being too drowsy for work & I have a naughty hiatus hernia that doesn't like any oral medication. Interestingly Amiltriptyline is suggested as an alternative treatment for Trigeminal Neuralgia (spelt wrong in my heading!) so perhaps the best way forward is to visit the GP and ask to switch. The pain didn't give me much choice yesterday - I'd have taken pretty much anything.

    It's been a little complicated as I've relocated 200 miles due to my job but didn't want to change GP until I've had this second consultant appointment and now I'm concerned about the drive if still on these meds.

    Thank you for the time taken to respond Brynmor - and on a Sunday too - all thoughts are valuable and I'll certainly return to provide an update of how it all goes.
    The trouble with having an open mind, of course, is that people will insist on coming along and trying to put things in it.
  • moderatormoderator Posts: 4,095 mod
    edited 30. Nov -1, 00:00
    Hi there.

    Your posts go into moderation until 2 have been approved, as a precaution against the large number of spammers signing up to the forum each day. You should now be able to post freely.

    As you say, do talk to your doctor concerning a long term plan for treatment. I’m also looking forward to see if any of our members have any personal experience that they can relate. Being a quiet Sunday, do be patient.
    :D

    Best wishes
    Brynmor
  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    Hi and welcome from me too.

    You did exceptionally well if you got 4 months out of the steroids. For some they don't work at all. Mostly, it's around 6-8 weeks.

    Yes, hey do seem like miracle drugs but the key word is 'seem'. They thin all body tissue not just the inflamed ones so while they are useful as a stop gap or in an emergency, they are not a permanent solution.

    The Disease Modifying Anti-Rheumatic Drugs (DMARDS) are what we need. They really do hold back the disease not just mask the symptoms. Probably, your rheumatólogist will want you on one of these next time you go.

    P.S. I've had a hiatus hernia for years. very quiet at first. Dodgy later. But not taking oral meds isn't an option for me. If I'm careful about what I eat and when all is well.
    I don't know about interactions between your other med and either steroids or DMARDS. Just ensure your rheumatologist knows what you're on.

    (200 miles :o Is that daily? Each way? Crikey!)
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • simplepimplesimplepimple Posts: 7
    edited 30. Nov -1, 00:00
    Thank you Stickywicket - its good to hear from others in the same boat.

    I'm pleased to know I got a good innings from my first steriod injection - I'll try and get an exceptional outcome next time I have one - if another is allowed in the circumstances but I'll also look out for DMARDS if that is suggested.

    It'll be interesting to see what they say. My hernia dictates quite a lot about what I can eat - it's 80% healthy stuff - mainly raw - no peppers though :o - but I do have a handy bottle of aniseed Gaviscon for the times I lose my will power. Though chips seem to be ok!

    200 miles is just the trip down to see the consultant - not my journey to work - thankfully that's a very reasonable 3 miles away.
    The trouble with having an open mind, of course, is that people will insist on coming along and trying to put things in it.
  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    Ah, I see. Better than a daily commute, then :D

    Poor you! My hiatus hernia is quite well behaved. I just eat a normal, Mediterranean type diet, avoid too much fat (indeed, too large meals) and don't eat for 2-3 hours before bed.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • simplepimplesimplepimple Posts: 7
    edited 30. Nov -1, 00:00
    An update in case anyone else is in a similar situation. I had a phone consultation with the surgery pharmacist who was very helpful yesterday. (though the receptionist wasn't so - she initially suggested I return to the dentist for more Carbamazepine - perhaps she thought it was more a dental problem? :shock: )

    The pharmacist suggested that if/when we up the Carbamazepine dose in 10-14 days time that I take the higher dose at night to hopefully allow me still to drive/function better at work. She didn't want me to swap to Amiltriptyline as Carb is the recommended first line treatment for Trigeminal neuralgia though I suspect my Rheumy consultant may consider a swap. She also reassured me that I would be able to have a second steriod injection at my follow up Rhematology appointment if that is suggested. Thank goodness! My bones will be so happy. (me too)

    I have to say the Trigeminal puts my bone pain into the shade - I've never been so keen to take medication before. The pain is at moments excruciating, hard to describe & different for everyone but luckily I've found a facebook page with other people who have it so that I can access more ideas to help. On a side note it does have a lovely side effect in that I've never slept better even if I do feel a bit drunk! It's also been good to find support via this page - thank you.
    The trouble with having an open mind, of course, is that people will insist on coming along and trying to put things in it.
  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    It's kind of you to post an update for the sake of others in your situation. That's always helpful.

    Pharmacists are really knowledgeable people, aren't they? Often an underused resource.

    I guess the rheumatologist will, rightly, have the last word. I hope it's a very helpful one :D
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • simplepimplesimplepimple Posts: 7
    edited 30. Nov -1, 00:00
    Just another update - I continue on the carbamazepine for Trigeminal Neuralgia & a pleasant side effect is that it has allowed me to sleep on my right side for the first time in years - prior to this my hip was too irritated. The wooziness is less now on the carbamazepine which is good as i need to increase the dose to completely control the Trigeminal Neuralgia.

    Saw my consultant today - and sticky wicket was exactly right - sadly no repeat steroid injection but a prescription for DMARDS - Sulfasalazine. Does anyone know if the 2 weekly blood tests is just whilst the dose is being increased & is it normal to have a blood test before you start them?

    I'm not taking them immediately as its confusing with everything else thats happening - I'll wait till I formally register with the GP that I was temporarily with - which means a change of consultant for next time. Not sure why I didn't change in the first place! At least there'll be no more long journeys.
    The trouble with having an open mind, of course, is that people will insist on coming along and trying to put things in it.
  • moderatormoderator Posts: 4,095 mod
    edited 30. Nov -1, 00:00
    Yay for carbamazepine :D Good to hear you are now sleeping a little easier.

    Whilst taking sulfasalazine you will be having regular blood tests. They can also take a little while to start working. Read all about sulfasalazine on our website:

    https://www.versusarthritis.org/about-arthritis/treatments/drugs/sulfasalazine/

    Good planning to reregister to save on the journey!

    Best wishes
    Brynmor
  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    I've never taken sulf but am on two other DMARDS. It's normal, and essential, to have a blood test before taking any DMARDS and regular ones while on them. The tests will spot any potential problems before they become actual ones. We start off about every two weeks and then, as we get used to them and all is well, go longer and longer between tests. I've been on DMARDS for about 20 years and now have my bloods done every three months but am occasionlly called back for an extra one if there's a blip.

    PS. Get a flu jab. We're entitled to free ones and it makes perfect sense as the DMARDS' job is to suppress our overactive immune systems. I got mine yesterday. Never miss.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
Sign In or Register to comment.