Nerve pain with MPA

[StephanieDiane]

Just thought I would share my outcome with nerve pain in my gums and teeth due to Vasculitis MPA.

For the past ten months I have been suffering pain in my gums and teeth, and attending my dentist to try and find an answer. He sorted all the minor problems to start with, and then started to look at any problems that may be causing the pain, by taking xrays of my teeth and gums, this did not show anything.

I told him about my Vaculitis MPA, and immediately he went and looked at a medical book. All he could find on the subject of Vasculitis was on Wegners. He said that he would sooner not carry on until I saw a specialist, so he refered me to the dental hospital in Glasgow.

I have went to see the dental consultant in Glasgow on the 8th November, and she knew straight away the problem was connected to the vasculitis. She recommended two medications that she thought would help. She has written to my specialist at the renal unit in Falkirk ( with a copy to my dentist ) so he could decide which medication would be suitable. He has decided on Gabapentin and has sent an up date of my medication to my doctor.

I start the medication today, and I will keep everyone informed on how I get on.

I had read a few months ago someone had written asking if anybody else had suffered nerve pain. Hope this helps others.

[LynneJ Vasculitis UK Volunteer]

Thanks for that. I have MPA and will look forward to hearing how you get on.

[Sandy_T]

Hi, this is really helpful Lady_C. I have MPA and also suffer a lot of nerve pain in my gums and teeth but neither my dentist or consultant have responded when I've tried to explain how bad it is. You were very lucky to be referred to a dental specialist who was aware of vasculitis. I'm due to see my rheumatology consultant in three weeks and will tell him about your experience. You say the dental consultant recommended two medications one of which was Gabepentin, can you let me know know the name of the other as that would be really helpful to tell my consultant. Good luck with the medication and I really hope it helps, do let us know how you get on. Just to say my consultant is really wonderful and I have complete faith in him, but this is probably the ony thing I've complained of that he hasn't referred me to someone else.

[StephanieDiane in reply to Sandy_T]

Hi Sandt_T, It took me about 8 weeks to get the appointment at the dental hospital to see the consultant, but she was wonderful. The name of the other medication I have forgoten, but when I go back to see my consultant in six week I will get the name.

[Sandy_T in reply to StephanieDiane]

Thanks Lady C. I will be very interested to see what my consultant's response is when I tell him of your experience. My dentist is a lovely lady but there's just a blank look on her face when I mention vasculitis.

Sandy

[Haggiss]

Hi Lady C,

Thanks for the information I regular suffer from boughts of jaw & tooth ache, nothing to do with the teeth. The Docs have put it down to the WG and my sensors so i'll pass the information onto them.

thanks

[gibson100]

Hello

I have had MPA for a couple of years.I have severe nerve pain in my feet caused by cyclophosphamide/prednisilone treatment.

One of my renal consultants prescribed Gabapentin to lessen the nerve pain but I gave it up after 2/3 months.Gabapentin as you are probably aware is used in Epilepsy to disrupt the signals from effected area to the brain.My experience was that it merely masked the effects and had the side effect of making me feel a bit gloomy.I decided to tough it out rather than take yet another (not very effective) drug.Gradually the neuropathic pain has decreased

Hope this helps a little.

[patsy]

I too have MPA and suffered terribly with gum and toothpain. I saw my dentist who could find nothing wrong with my teeth or gums, so referred me back to my GP. I was already on Gabapentin for the pain in my feet, so that was a no go. I take a mountain of medication for this illness that I have been blessed with and found out that the Steroids caused the mouth pain, so as these are an essential med I thought I would just have to put up with it, I then in desperation one night used Difflam Oral mouthwash what a difference this has made to my pain, It may not work for you but anything is worth a go.

Pain is a great leveler and this bloody illness takes no prisoners, bad feet, aching legs, fingers that wont grip, knees that rebel on walking and the FATIGUE!!!!!!!! I have forgotten what its like to see a film from start to finish,

[ken13]

I v read what you said would be very grateful if you could let me know how to contact this dentist in glasgow. i have MPA and with long time use of steriods have very delicate teeth and gums, but could do with a specialist to sort out my problems

[StephanieDiane in reply to ken13]

Hi Ken

I was refered by my dentist, it took a few months, I saw a consultant at the Glasgow dental hospital called Dr Crawford. Hope that helps.

[Ezrela]

I was told and proven to have small vessell vasculitus through blood tests, then 2 years later I saw several doctors who said I didnt have it and that it had gone, I dont believe this condition goes but i cannot convince my doctors, I still have many signs of it, yes of late I have had a lot of bleeding in my teeth and gums, my face is red and flushed, Narproxin makes me bleed even more, and yes I am at the moment taking Gabapentin as I have nerve pains down my legs and feet, although I have 2 worn out discs, and thought my pain felt like sciatica, it comes and goes, waiting for a scan, Gabapentin isnt touching the nerve pains even though they put me on 3 three times daily, made me feel very unsteady on my feet sick and dizzy and gave me moodswings, dont take them less I have to, I could do with a shot of steroids as I know this would help but I put on 4 stones and am having a job to lose the weight. My gums often bleed I also bleed down below and my face is always very flushed, I am also full of exhausture but when I tell the GP they say it is all weight, they fail to recognise my condition, its about time the doctors looked into this more, we are all silent sufferers and its not until we are seriously ill that someone will recognise this evil condition and do something positive about it.