I'm new here. I've got an issue and an introduction into my coming
about into this situation. Considering the stuff I'm reading, I'm
hoping to get some insight into helping with this newfound illness
inside of me, but I apologize in advance for my extreme use of
parenthesis. Anyways, here goes...
I'm
24 Year old male, and I've been diagnosed for about two to three months
now with PA. Originally, I was started on 10mg of Methatrexate. After
hunting for a way to fund this, considering I'm a full time student
(8am to 3pm every weekday) and work full-time (4pm to 11pm), sometimes
saturdays, I've been set up for Remicade Infusions, as well as an
increase to my Methatrexate to 15mg.
Its taken me YEARS to
figure out why my back always hurt, 2 MRI's that showed next to
nothing, COUNTLESS x-rays, chiropractors (2), Neurologists (stabbed and
zapped, that test sucked!), Dermatologists (who didn't even take
samples, just wrote me prescriptions for skin cream), and about 10
different primary doctors later, I finally hit home when an Orthopedic
looked at this huge collection of stuff and shot the idea out to me,
and it took the Rheumatologist about 5-10 minutes to take a guess at it, and of course many MANY x-rays and vials of blood later, was for certain.
First
off, I have to say, for the INSANE price, for me its worth it... Its
been 6 years since I last ran, and last week I was able to run to get
out of the rain... My shoulders had been out of commission for the past
year and some months, unable to lift, my fingers were unaffected and
can type really fast, and considering its my field if study, having
them go is my biggest concern. Having to work like that required
chairs with arm rests, and getting up, felt like my tail bone was
falling off (or to use the phrase my bum is falling out). Co-Workers
offering me a better chair, pain killers, and sympathies at work,
telling me as no offense, that I seem like an old man (no offense to
anyone here as well).
Now with these infusions, after phase one,
I woke up two days later, for the first time in about 5 years relaxed!
Every night for years, tossing and turning, stiff as a board, waking
up, having to rock my body back and worth to get momentum to get up,
making sounds like I'm on my deathbed, is now gone. With extremely
decreased soreness, I waited two weeks for my next infusion, and from
those results I couldn't wait, given the life that was being taken from
me getting no where over so much time, it was worth the risk to me.
Now since phase two, I've got back 95-99% of my total body functions,
with total loss of random back pains, shoulder weakness, etc.
Unfortunately I can tell its about time for another one (Was supposed
to have one today) because I'm starting to get sore, and can't do the
things I've been doing for much less an hour without starting to ache
to a level of bad discomfort. I need to do some physical therapy with
my shoulders since Its been so long i used them their weak, muscularly
but otherwise, work just fine.
HOWEVER... I've had this annoying
cold for a month now... I'm on 2 vials (however much that dosage is) of
Remicade, and take one Benedryl and some Tylenol during the infusion to
combat side-effects since I have no ride home (the bene knocks me for a
loop or they'd give me two). No side effects while getting the
infusion so far. However, I've got this really annoying cold...
There was one going around at the time of my second infusion, and thats
around when I had caught it. I've taken some random Tylenol severe
sinus (caplets), Tylenol severe cold (the orange fluid), and I've even
got some nifty Vicks scented tissues, But no luck. After some random
chest pains, heeding the warning of my Rheumatologist, I went to the ER
to get some x-rays and blood work, but no pneumonia... It just wont go
away...
Outside of that, I've recently developed as I've
discovered from my dentist, an abscess tooth, my right wisdom to be
precise, which also happens to be impacted... I'm on 300mg Clindamycin
HCL (generic, and 3 times a day) for the infection, and its been 2 days
and no signs as of late of improvement... also my infusions was
scheduled for today but postponed due to this infection. After it goes
away, they have me on a waiting list, because both bottom wisdoms
"need" to come out. One is going to run through the upper portion of
my gums and the other has been trying to mow down other teeth in its
way.
I'm in phase 3 my infusions, this was to be my 3rd infusion
(week 7), and we've pushed it back a week, possibly longer. I'm
understanding this "suppresses" my immune system. So obviously I don't
want this tooth problem to get crazy out of control because of it...
I'm developing insane ear pains, headaches, dizziness, upper teeth
aches (though the dentist said they were all fine), my eyes feel like
their sand (like when u wake up) in the center near my nose but they
continue to be dry and feel like that the ENTIRE DAY!. My mouth is
also extremely dry, and my nose (though when i blow it with the tissues
I can continue to produce lots of mucus) holds dryness as well.
So
basically my questions are, Any input, insight into this information?
Oral surgery... is there anything I should know related to what I'm
taking, and how it affects my body? They mentioned a possibility of
needing to take steroids before they put me on local anesthetics to
knock me out for it. Any good over the counter stuff I could use to
attack this cold? It's extremely annoying, and the dryness in my eyes
makes me feel so tired, though I'm awake and somewhat alert depending
on the headaches. I'm thinking these random head pains (random points)
are related to the tooth problem considering their all ONLY on the
right side. Everywhere else in my body excluding stomach (lots of
NSAID {Advil x600 - 800mg} and the anti-biotic are really tearing me
up, and the best i can do is jello/soup/canned soft veggies) is fine
otherwise. No random pains or numbness, except for a bit of flareup in
my joints, and when I goto sleep it clears up for the most part... Any
thoughts? And to those of you who made it, congratulations on reading
my NOVEL lol, hopefully i get some good feedback, I'm VERY new to this
stuff, and being very young, I don't know any particularly good
resources to use to get any real information and I find asking those
with real experience to give some good tips.
Welcome to the board! I can't give you any brilliant answers, I'm afraid, but I did want to let you know we're glad your here.
Hey Mohgeroth and welcome!
I'm usually on the other side of the debate so maybe I'm not going to be a lot of help to you. Others will jump in soon, don't worry.
Personally, I'm a person who thinks their PRA came on after having an abscessed tooth pulled. I would never have any oral surgery done unless it was by a biologic dentist who practiced the Huggins method. They use dental dams and high powered suction to make sure you don't accidentally swallow things that can make you sicker. This is a controversial topic so you have to do your own research to decide where you stand on this topic. I'm firmly planted (NOW :-) in the biologic camp.
The doc should have put you on probiotics if you are on antibiotics. I uses antibiotics to control my RA and it's required! You can find probiotics just about anywhere. I get mine at Whole Foods and use the refrigerated kind as I think it's more potent. Who really knows! LOL
And - did they take you off the Remcade while this is going on?
Pip
My rheumy told me if I have any dental work done to be sure to get a dose pack of antibiotics first. Also when I did the Remicade infusions I wasn't allowed to have an infusion of on an antibiotic and for a few days after (my rheumy said 5) to be sure the infection was gone and not just weakened. If your tooth continues to bother you call your dentist and ask for a stronger antibiotic - an abcessed tooth is nothing to play with. My FIL had one not long ago and he also had earaches, headaches, and upset tummy till the tooth was taken care of. Best of luck. Hugs and good vibes.Yes i'm off the Remicade, was supposed to get it yesterday, and we're putting it off for a couple weeks until this thing blows over.