I am new here and I have been diagnosed with ATN or Atypical Face pain (I don't think my neuro can decide). I also have lupus. My Rheumy was not sure if my ATN was a manifestation of my lupus, but the neuro says it's too coincidental not to be. I am currently being treated for both. I take Trileptal for the ATN and I am on ibuprofen, plaquenil, 5mg prednisone and methotrexate for the lupus.
You can read my story and how I deal with my pain on my profile page.
I am on medical leave for 2 weeks from work right now and I am feeling like my symptoms are getting better now that I have been on the methotrexate and the Trileptal for a bit.
I have one question though... I have two teeth that just chipped (probably from the prednisone and also from my clenching at night and when in pain) and I need to see the dentist. I am very nervous about this because I am NOT going to want to be there if I am having an ATN attack and I also don't want it to spark an attack. Any advice?
A good start would be to join the Dental Group and see the advice there. Also you could pose the question to the group and see what they say. I know it’s scary and I empathise, I have been there.
For TN patients, it is often wise to taper up on medications (in your case Trileptal) before having dental work done that requires an injected anesthetic. Consult with your neurologist about the levels of medication that he/she considers appropriate.
Likewise, be advised that the Medical Advisory Board of the TN Association now defines "Atypical Facial Pain" as equivalent to "facial pain of obscure origins". The term is no longer accepted by knowledgeable practitioners as a legitimate medical entity. It is rather a fancy name for "be damned if I know". It is known that facial neuropathic pain can indeed manifest as one symptom of Lupus, however.
Be aware that there is a sister community among the Ben's Friends group of rare disorders communities, which is called "Living With Lupus". See our home page for the link. It may be worth while to join there for further information and support from other Lupus patients.
I'm pretty sure my ATN is lupus-related since it seems to get better when my prednisone is increased and now that my methotrexate has had a couple weeks to work, my symptoms are much reduced. I was also already in a flare up when the ATN symptoms started.
I will check on the Trileptal taper with my doctor - thanks for recommending that!
I will also look into the groups you guys recommended.
HI Jess, I take Prednisone, I begun on 60mgs, have decreased to 10mgs over the course of a few months.
I am taking it for Giant Cell Artrites, which is also an autoimmune problem, I started with this and TN at the same time, my Nuero thinks its possible that GCA triggered the TN. I began with Classic TN, 8 months ago but now seem to have ATN. I am worried that as I get lower on the Pred, that the ATN will become worse.
I think it's interesting that the few people I have read about (here and on lupus communities) that have autoimmune disorders also have ATN. It's interesting that yours moved from classic to atypical.
I don't know much about GCA -- does it "flare" like lupus? Perhaps the high dose and slow taper of prednisone will have taken care of the GCA? I am always hopeful that once my lupus calms down, my ATN will also calm down. I'm always scared that the nerve involvement may be permanent, even though my Rheumy is hopeful it's not.
Jess my Neuro was also hopeful that once the inflammation which caused the GCA is sorted ( it normally takes 2 years) then the NT will also be sorted. I guess we will have to wait and see. I am down to 10mgs on my steroids and so far the ATN has not got any worse. I have good days and not so good days, but that has been the norm. My neuro thinks the laser treatment i had may have triggered the Classic TN, because the GCA made the nerve more vulnerable.
Good news that the taper off pred doesn't seem to be making your worse. I am also tapering off pred right now, but I have been taking methotrexate, so my inflammation is being controlled by that medicine.
Have you been keeping track of your symptoms? I keep a daily log and I have seen a big pattern with two things -- now that my meds have had time to get to a "level" I am feeling much better and it shows. But the other thing I have noticed is that I have a direct link with stress and pain. If I get into an argument with my teen, for example, I start to have pain before we're even done. Or a big stress at work will set me off. So, I am working very hard on stress-reduction.
Anyway, I think it's very helpful to keep track of triggers and of how many attacks you have, etc. I gave a chart to my Neuro and it really helped us see what meds were working and what meds were not.
Tiredness seems to be a big trigger for me. I am returning to work on Monday. I normally work out of doors, doing shift work, earlies lates and nights. My work doctor said I should work indoors, so that is good. I am going back to our head office at first which is fine, but I normally work in Northern France and commute each day through the channel tunnel. The train often has faults and I have been stuck in it for 5 hours before now. This I am worried about and doing nights. But I am going to take it all a day at a time. I do keep a log and yes If I do get stressed i feel it in my jaw and teeth straight away, normally my jaw does not hurt but it does if i get stressed, I also avoid being stressed at all costs. I also think being ill, puts things into perspective for me, the things that would give me stress before all this, now wash over me, as I know there not worth getting upset about.
The talk of steroids and autoimmune disorders really started me thinking of a time when I had ITP during my pregnancy with my 20 yr. old. I had to be on steroids to bring the platelet level to normal for the remaining preg. and to be strong enough for a natural birth. I remember after he was born, I hated the steroids so much I quit taking them cold turkey. Could have died! But I knew a pharmacist who counseled me to get dessicated liver from Argentine beef either in capsules or powder and mix with a citrus juice to mask the awful flavor. Apparently, steroids reek havoc on the adrenal glands and will leave you tired and listless. I do this about once a year since because fatigue is something that now comes from the anti-seizure meds.
I mention the Agrentine beef dessicated liver to see if either elstep or Jess has heard of this as a way to build up the adrenals? Wanted to pass on that it helped me to get back up and on my feet again back when Jr was born since then when I'd supplement with the product. My health food store in California stocked it, up in the PNW I can't find it anywhere, so I order it online.
Thanks Lynda, yes I am aware of the problems I may have with the adrenal glands. The steroids are doing the job that the adrenal glands do. The steroids will continue to do this until I reach about 5 and then the adrenal glands have to start to work again and in some cases they dont as they have become lazy. It can be very serious, you were lucky! If they dont work, its a case of going back up on the steroids and then trying again, because of this it can take a long time to get off the steroids. When I do get to 5, I will be going down by just 1 every month. Thanks again for the tip on the beef capsules I will look it up.
In my situation, I don't have a problem with my adrenal glands -- I have a problem with my body fighting itself and making way too much inflammation everywhere. The prednisone reduces inflammation like nobody's business and that's why we take it.
You are very lucky you didn't have serious problems coming off the pred cold-turkey like that because as you said, you could have died.
I'm on a slow taper and then I hope to never have to do long-term pred ever again. I think it's completely safe to do a short course of high dose pred for an acute situation, but when you take it for long periods it's just so hard to get off of it. However, for a lot of us (like elstep), we don't have a choice at first. Gotta get that inflammation down!
Good luck on your taper, elstep. I am at 5mg and am going to 4mg next week. When I drop 1 mg I end up tired and cranky. Or maybe that's because I am tired of being in pain. lol!
Good Luck Jess, Now I am at 10mgs, its seems nothing compared to the 60 that I started on! But I still have my sight, so like you I wont criticise the Pred !
Jess, Yes, I am lucky to be alive! So grateful as well :-) My mention of how pred. raising havoc on the adrenals is just a small amount of damage what the drug does, regardless of the reasons for taking it. Although it does some pretty awesome things on the positive side as well :-) My steroid level was pretty high towards the end of pregnancy and then went up again during delivery. I could have felt exhausted from a high risk pregnancy, a malfunctioning spleen AND pred. combined.
When I looked up the pharmacists suggestion, I found what she said to be true. And, to my delight, the agrintine beef's desicated liver was something that brought my borderline anemia up to normal levels. All the best to you, my friend! LyndaS