28, scared and confused, please help with questions about RA

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zeekman
Regular Member


Date Joined Mar 2007
Total Posts : 39
   Posted 3/8/2007 10:49 AM (GMT -7)   

Hi. I am new to the forums and I want to thank you all for what seems to be an understanding place to talk about this disease.

I have a few question I need help with. I would appreciate any help as I am pretty scared right now.

I am 28 years old and have had pain in my right shoulder for a few months. It went away for a few weeks until I got really, really sick with the flu about a month ago. After the flu, I started to have symptoms associated with RA. My wrists hurt, but not extreme pain. My pointer and middle fingers on my hands are swollen and have minor pain. my knees and my feet are sore with the bottoms hurting sometimes. Also my ankles and toes are sore, but not painful. Now both my shoulders hurt too.

If I sit or lay down I have no pain. When I move it hurts pretty bad when I get out of bed but not when I walk that much. I would say it feels like I sprained whatever it is that is hurting me. The muscles are very sore. I have also been sleeping on an air mattress. I tend to sleep on my arms and hands alot (bad habit) and sleep in weird positions. I wake up sometimes in the middle of the night because my hands/arms "fell asleep" because they are under my chest when I sleep. Could this lead to RA like symptoms?

I went to see a doctor yesterday and he said it could be RA. He prescribed Vicodin and told me to take 2400 mg a day of ibuprofen for 6 weeks to see what happens. He also mentioned prednisalone if I do have RA.

I am taking a blood test tomorrow to see if I have RA. He also said it could be something to do with the flu I had.

That leads to my first Question: Is there any sort of virus associated with the flu or flu like symptoms that could cause such pains similar to RA? and if so what are they?

This might sound weird but if I do have RA, am I going to have deformities and if so what are they? Can I prevent this from happening? When do the deformities start?

I can handle pain pretty well and so far I see alot of people saying that the pain is extreme. If I do have RA, I must be in the early stages because I do not have pain that would warrant such "heavier" pain medications. Does this mean the pain gets worse and worse over time?

One last concern. I saw these symptoms associated with RA on web md and other RA affiliated web sites:

  • Fatigue.
  • A loss of appetite.
  • Weight loss.
  • Mild fever.
  • Numbness and tingling in the hands
  • I do not have fatigue

    I do not have loss of appetite.

    no weight loss.

    no fever.

    no numbness in hands. (my two fingers are swollen on both hands though.)

     

    I guess I am just trying to find a "way out" of having RA. I am very scared and do not want to have to live with this for the rest of my life. Any uplifting comments would be helpful. I was not scared until I started reading about prognosis.

     

    You all are great and I appreciate your time in reading this. I am just confused and am looking for some clarity.

     

    Thanks

     

    Zeek


    Ducky
    Veteran Member


    Date Joined Mar 2005
    Total Posts : 3199
       Posted 3/8/2007 6:02 PM (GMT -7)   
    Hey there zeek.. I tried replying to you earlier, but my computer had issues.. anways - yes, any virus/infection left untreated can lead to RA.. I'm sure Erin (the other Arthritis Mod) will be here shortly to lend her 2cents.. she is a prime example of this.. Deformity happens usually down the road, as the RA gets worse and left untreated.. it seems as though you are just starting out, so as long as you stay active in your treatment, you will be fine.. Symptoms vary by person also, so you may not have some of the same things listed.. The symptoms you listed, normally people feel when they are in a flare.. which can also vary.. What time is your doc's appt tomorrow? Hang in there and keep us posted.. we'll get you through this I promise!
    Moderator of Arthritis/Epilepsy Forums
    Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
    Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
    Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
    Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
     


    zeekman
    Regular Member


    Date Joined Mar 2007
    Total Posts : 39
       Posted 3/8/2007 7:59 PM (GMT -7)   
    I just took my blood test today. They took three viles of blood. Now I have to wait a week or so I guess.

    The thing I am MOST scared of is that it can affect your lungs, heart and eyes.

    Is there a 100% chance it will affect my lungs, eyes or heart over time?

    Can I avoid the lung and eye problems with proper treatment?

    I appreciate your reply. I have no one to talk to about this, not even my doctor. :(

    Do you have RA ducky? how old are you? How are you coping?

    once again thanks for you caring and concern. It makes me feel good to know someone understands.

    Ducky
    Veteran Member


    Date Joined Mar 2005
    Total Posts : 3199
       Posted 3/8/2007 8:26 PM (GMT -7)   
    hey zeek.. Yes, you're right, RA can affect your lungs, heart and eyes.. BUT normally those are the more severe cases.. and the most important thing is treatment early on.. this way you can prevent those things from happening.. No, there isn't a 100% chance that it will effect your lungs, eyes or heart.... again, it all goes back to treatment and detection early on, and it seems as though that is your case..

    You can come here ANYTIME to yell, scream, vent, cry, ask questions, or whatever.. we are always here and we don't judge.. We've all been through it in one shape or form.. and we are here for you! We have been where you are, and completely understand everything you are going through.

    I do not have RA, I have PA and AS.. Which is Psoriatic Arthrtis and Ankylosing Spondylitis.. I will be 34 this year, I was diagnosed 2 years ago.. I am coping, ok.. some days are bad, but it is to be expected... you just have to push through it, even when you feel like you don't want to..

    Take good care... Duck
    Moderator of Arthritis/Epilepsy Forums
    Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
    Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
    Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
    Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
     


    zeekman
    Regular Member


    Date Joined Mar 2007
    Total Posts : 39
       Posted 3/8/2007 11:28 PM (GMT -7)   
    Ducky...

    You have good "bedside manner" like a doctor. I feel better just talking to you.

    sorry...I should have looked closer at your sig. I would have noticed your diagnosis and current meds.

    looks like you have experience in pain. I know its tough day to day. Have you tried herbal remedies to treat your ailments? Would this weaken the immune system and increase the chances of damage to other parts of the body?

    I have to wait a week or two before I can see the RA specialist. I hope I can be put on something that will stop it from spreading to other parts of my body. I can take the pain. I just want to breathe normally and maintain some normal activities.

    Thanks for the reply again. It funny that web sites devoted to arthritis don't cover what we talk about here in these forums. Thank you so much for relieving my stress ALOT.

    I am glad I caught this early enough. now I hope I can treat it properly.
     
    **I had to edit your post a bit, discussion of medical marijuana is not allowed on this site**
    Thank you for your understanding.. Duck

    Post Edited By Moderator (Ducky) : 3/9/2007 6:00:18 AM (GMT-7)


    erin.K
    Veteran Member


    Date Joined Mar 2005
    Total Posts : 3148
       Posted 3/9/2007 4:24 AM (GMT -7)   
    dear Zeek,
     
    i'm so glad you found Healing Well!  i'm erin...26 y/o...i have RA {pretty stinkin' bad too} have had it since age 16 but only began treatment 5 years ago.  Ducky's great...she's a gem!
     
    i would like to address some of your concerns (i give both my nurse's point of view & personal point of view!...don't worry, FREE OF CHARGE! tongue )
     
    *the symptoms you read: weight loss, fatigue, loss of appetite, numbness....etc. those are really sooooo vague & really apply to like every illness under the sun.
    so when looking at RA one really wants to look at:
    -JOINT SWELLING
    -BILATERAL JOINT PAIN (both sides of the body) 
    -Morning Stiffness and lessened range of motion
    -Diagnostic blood screenings (RF, CRP, WBC, ANA, SedRate)
    if you look at the Arthritis Foundation website...there's a list of distinguishable signs and symptoms of RA.
     
    *you said you recently had the flu.  influenza an cause wicked joint/muscle and body aches that can last for a good week or 2 even after the flu is over.
    the flu persay doesn't cause RA.
    but...any bacterial infection left untreated for a good deal of time could possible lead to an autoimmune response triggering inflammatory arthritis & autoimmune arthritis like RA.
     
    *okay....your doc put you on a heafty NSAID therapy for now.  when a person is put on an antiinflammatory and the med helps the joint pain...it helps the doc kinda.  you'll find that sometimes a diagnoses can be made on how & if you respond to RA meds!
     
    {if you said you weren't in too much pain...why did the doc RX Vicoden?  do you experience bad bouts of joint pain?}
     
    *the muscle pain & "falling asleep" feelings in your extremeties could possibly also fall into what is known as Fibromyalgia. basically painful muscle fibers.
     
     
    shoul it come to be that you do in fact have RA...the medicines that actually help the disease by slowing down the progression of it are the meds like Enbrel, Remicade, Rituxan, Humira.  they are all meds that work to manipulate the immune system.  you might get immuno-suppressed....but you'll be constantly getting  blood work to monitor things.
    meds like Imuran, 6MP, Methotrexate all work to help the disease too.
    if only you let the RA go unattended to & it gets bad and you don't seek treatment...the likelihood of getting joint deformities is great.
     
    every case of RA is different, no one is the same.  that's why it's so important to get things rolling fast.  many folks do wonderfully on the meds and respond quickly & lead very active normal lives.
    others, the RA advances despite treatment.
     
    you do have a lot of control over what goes on & having a good attitude helps immensely.
     
    start jotting down all of your questions & concerns to bring with you to your doc appointment...it can be a lot of information in one sitting.
     
    you're gonna do alright...don't worry  :-)   

    Post Edited By Moderator (Ducky) : 3/9/2007 6:04:28 AM (GMT-7)


    zeekman
    Regular Member


    Date Joined Mar 2007
    Total Posts : 39
       Posted 3/9/2007 9:35 AM (GMT -7)   
    Sorry folks, I didnt know we could not talk about herbal remedy.

    Thanks for your reply erin. I appreciate your knowledge on this subject.

    I am not in much pain when I am just sitting or laying down but in the morning it is painful to get out of bed and move around. That is the reason I have pain meds, to help with sleeping without pain while tossing and turning at night.

    I have only had my hand fall alseep a few times in the last couple years and thats because I slept on them. :)
    I have had that happen since I was a kid a few times so I do not think (hope) its not fibromyalgia. Just my sleeping positions.

    I hope the meds they give me work and I can lead a somewhat normal life. I will start making a list of questions for the RA when I see them next week. I am trying to get this ball rollin', it seems like the docs are the ones making me wait. To me, every day is precious so I want to take care of this NOW.


    "you'll find that sometimes a diagnoses can be made on how & if you respond to RA meds!"


    That must be why my doc said to wait a few weeks to see if it is just a "virus/infection/allergic reaction". He wants me to take 800mg ibuprofen three times a day. So far it is helping a little bit. I just cant get my two fingers to stop swelling up. I hope they wont be like this permanently? :(

    I will try to maintain a positive attitude. I think you guys/gals have already helped me with that! Thank you sooooooo much!!

    Erin, after 5 years, are you able to control the inflammation? Did you start on the meds early enough to stop damage? Is there any way the meds can acutally heal certain areas?

    Ducky
    Veteran Member


    Date Joined Mar 2005
    Total Posts : 3199
       Posted 3/9/2007 9:57 AM (GMT -7)   
    Hey zeek.. no problem about discussing the medical mj thing.. just one of the rules, 'cause it usually sparks a heated debate, and it usually causes more problems than anything... :) Thank you so much for understanding... Our Erin is a good bean, eh? She has been through a lot for her years, and is very knowledgable due to person experience and she's a nurse. The Ibuprofen should help the swelling go down, it may take a bit though. Just hang in there, this is a slow process.. but like you said, it was caught early... so you should be fine.. When is your next doc appt?
    Moderator of Arthritis/Epilepsy Forums
    Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
    Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
    Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
    Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
     


    erin.K
    Veteran Member


    Date Joined Mar 2005
    Total Posts : 3148
       Posted 3/9/2007 10:49 AM (GMT -7)   
    hey Zeek,
     
    that morning stiffness would definitely fall into criteria of RA.
     
    ooh, you know what a really great tool is?  there's a thing called "Let's Talk RA" & you can ask for it to be mailed to you via the Arthritis Foundation.  it's a guide booklet on what to do & how to prep for your rheumatologist visit. :-) i just got one in the mail & it's cute...very useful.
     
    the Ibuprofen is a good antiinflammatory.  so...you're right, if some things improve with this med...it'll sort of hint to the doc that something inflammatory might be going on.
     
    the swelling? you might find it will go away & come back...go away & come back.  that's how my knees are.  they'll be normal looking...then when the RA flares up or i overuse them, they go "POOF" &  i have 2 grapefruits for knees.
     
    to answer you question about me...in short, no.  when i developed RA i was really young & none of my physicians thought to act on it.  so i went untreated till i was about 21 y/o and a little too late.
    the joint problems & disability came gradually then suddenly.  i was on Enbrel, Humira, and every nsaid.  nothing really worked too well due to the severity of the RA.
    it's still very very hard to control.
    i can't work due to it (can't stand or be on my legs for more than 5 minutes about) so i am in the appeals process for SSDI.
     
    but...i'm on aggressive treatment now & my docs are great; i usually have enough tools to control the joint pain (but still need to go to the ER here & there).
     
    Prednisone, a steroid, helps me the most...but the drug stinks! it helps a ton...but i don't sleep when on it...and it causes water retention (oh joy).
     
    be in touch soon Zeek!
    Arthritis Forum Moderator
    Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
    Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 10mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Rozerem 8mg; Dilaudid 4mg tabs for pain. 


    zeekman
    Regular Member


    Date Joined Mar 2007
    Total Posts : 39
       Posted 3/9/2007 7:36 PM (GMT -7)   
    Ducky and Erin you are so great! I almost want to cry!

    I talked to the lab today and the RA. They are sending my results when they are available to my RA, then the RA will contact me. Hopefully, I can get in before April.

    Thank you both soooooo much for the feedback. Without you, I would be totally in the dark. I appreciate the tip on the newsletter, I will do that right now. :)

    What is SSDI? Good to hear you have docs that actually help. Looking on this forum, alot of people are not happy with their docs.

    I see you have rheumatic lung and heart. Is that because it was diagnosed late or is that just the natural progression of RA?

    The way I am looking at it from the knowledge gathered, the earlier you can stop the swelling/erosion of the joints, the less pain and complications you will have down the road. I hope this applies to heart, lungs and eyes as well.

    Dilaudid, isnt that a pretty heavey duty pain med? Do you take ALL those drugs? if so, how can you handle all that in your system at once? Why does Prednisalone stink?

    I think I understand "flare ups" but is there ever a time where everything feels normal without drugs? Or does RA make you hurt 100% of the time all day, every day?

    Ducky, do you know where can I talk about herbal remedies for RA on the web?

    one more thing, have either of you notice weather playing a role in increased inflammation?

    sorry about all the questions......

    thanks again!!!

    Zeek

    Ducky
    Veteran Member


    Date Joined Mar 2005
    Total Posts : 3199
       Posted 3/9/2007 8:12 PM (GMT -7)   
    Hey Zeek... SSDI is actually Social Security Death Index.. but it also the acronym associated with Disabilty... Erin as well as many others have applied for disability, and it's almost always guaranteed that you get turned down the first time, so she is in the appeals process now for it...
     
    I know my pain levels vary depending on alot of things.. for me, weather does play a big role for me.. if there is a lot of moisture in the air.. not necesarrily rain, just moisture, humidity.. I hurt.. sad I also tend to over-do it often too... I am in the Air Force, married and have 3 kids.. I'm a busy mom.. there are days that I can't just sit and do nothing (although I have many that I wish I could).. so I push through it and end up paying for it the next day.. If I stress out over things, I can through myself into a flare too.. it is a huge balancing act.. one I have yet to master!
     
    Honestly, I'm not sure where you can discuss that type of remedy on the net.. I'm sure there are a bunch of sites out there, but not sure if they are legit or not..
     
    Don't ever apologize for asking questions, that is the only way you are going to learn... I applaud you for taking the steps to try and take control of this RA before it takes control of you...
     
    Take good care.. Duck
    Moderator of Arthritis/Epilepsy Forums
    Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
    Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
    Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
    Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
     


    erin.K
    Veteran Member


    Date Joined Mar 2005
    Total Posts : 3148
       Posted 3/10/2007 10:58 AM (GMT -7)   
    :-)  awe Duck that was nice.
    Zeek you're sweet! :-)
     
    the "herbal treatment" we were talking about...i would think that maybe you can find an open panel discussion on sights that deal with Cancer, Glaucoma, & Multiple Sclerosis.  that's what i would search for.  good luck in your findings!  i mean, there has got to be some place on the net for an open forum on the topic.
     
    the heart & lung complications i developed came from long standing Rheumatory Arthritis without any treatment.  it's basically a lot of infammation & scarring of the lungs & heart.  my heart valves got very damaged....but i don't need to take any heart or lung meds (just steroids here and there).
     
    you're absolutely correct...soooo much can be avoided by early diagnoses & early treatment.  RA even though it effects you systemically.....doesn't necessarily mean that everyone will develop such problems.  some folks never do! & the condition is very easy to manage & causes very little changes to one's life.
     
    every case is unique.
     
    hah...yeah, unfortunately i do take all those meds.  tallies up to about 30 pills a day.  the RA i have is advanced & a little on the unmanageable side...so my case of RA isn't really a pretty picture of it!  BUT I AM A GREAT EXAMPLE OF GOOD SELF MANAGEMENT! tongue
    dilaudid i need because yes...i do have joint pain 100% of the time. but when i attempt to shower, take a little walk, need to stand, or anything physical really...the joints in my legs get very very painful.  (so this is why i had to stop work & file for disability).
     
    YES! when the pressure changes in the atmosphere (like a storm front moving in?) i get a lot more throbbing join pain & swelling.
     
    to leave you on a good note: :-) with RA, i did go through 6 years of college! and i was able to work from 1997 to 2004 pretty much full time almost.
     
    and even now...i am very involved with arthritis & autoimmune causes and organizations.  it took a few years to adjust to "a new me" (i was a wild go-go-go- child!) & it still is a daily learning lesson.
     
    Zeek, you're a cool bean...and i wish the very very best for you.  an whatever may come your way...you'll get through it.
     
    take care
     
    Arthritis Forum Moderator
    Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
    Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 10mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Rozerem 8mg; Dilaudid 4mg tabs for pain. 


    zeekman
    Regular Member


    Date Joined Mar 2007
    Total Posts : 39
       Posted 3/11/2007 8:28 PM (GMT -7)   
    Took me a while to respond. I was at the coast for the weekend and enjoyed the rain...... j/k.
    Thanks for your reply erin. I have been talking to my dad about you two and how some people I have never met before opened their hearts and minds to help me out and ease my pain.
     
    you are amazing. :-)
     
    I cannot thank you enough!!!
     
    Erin said...
    i am very involved with arthritis & autoimmune causes and organizations
    I would also like to help out in my local area with this. I think it is amazing you help so many people! You have brought alot of positive thoughts to my life lately while I struggle to cope with RA.
    erin said..
    my case of RA isn't really a pretty picture of it!  BUT I AM A GREAT EXAMPLE OF GOOD SELF MANAGEMENT!
    I don't know you that well but I can tell you have all the knowledge to fight this! You have medical help and support from us so you will be just fine. Just the fact you can get on the internet, move around and still have a great mind is excellent self management.
     
    I am starting to look at things different now. I seem to be enjoying the little things more often. I have also confronted myself and my foolish ways.
    This might sound somewhat weird but I now have so much more respect for elderly people and people who have joint and movement problems. Before I would get frustrated on having to wait for them in line, at work etc. NOW...I want to help them all...this pain makes me realize that you need to respect people and their afflicitions. Help them if you can!!!!
     
    well the 2400 mg a day of IB is not really doing much. I guess it has to be in my system for a while to get results. The vicodin, which I took for my sciatic pains a couple years ago, isnt really doing much at all. What pain med can I ask my doctor to prescribe me that will not make me a zombie?
     
    Thanks again
     
    I sleep better at night because of you all!!!!!
    much love!
     
    Zeek 
     
     

    erin.K
    Veteran Member


    Date Joined Mar 2005
    Total Posts : 3148
       Posted 3/11/2007 10:13 PM (GMT -7)   
    dear Zeek,
     
    awe, that was beautiful.  it was a tremendously lousy day for me...so thank you for making it better!
     
    ya know, this is what it's all about.  for some strange reason there are many blessings that come attached to having an illness.  perhaps that is the trade off?
     
    not too many people can reach a person the way you do...i do...and the way each person here can do.
    this absolutely changes ones life...but not all of the changes are negative, like you said...there are so many positives.
     
    the Arthritis forum in my opinion is probably the best extended family there is!  the ladies & gents here pull through for each other in the most extraordinary ways.
    as the name says "Healing Well"  i guess there's a lot of truth in that.
     
     
    Bob Dylan once said, "So even though your body is laid up...your mind will always be free." { i love Bob!}
     
    ah geesh sorry about the Ibuprofen. well, just think of it as adding more information to yourself...you know what DOESN't work great.
    Vicoden wouldn't help too much for throbbing joint pain or swelling pains of the joints....even the Dilaudid i take doesn't really help much either for the RA pain.
     
    you could inquire about ARTHROTEC...i liked that a lot & it helped greatly reagrding the joints.
    prednisone helps...but if ya read about it...it's not too desireable.  long term that is.  for short intervals of treatment it's ok.  we all hate it cuz for many it causes water weight gain, insomnia, etc... and when we taper down?....the stinkin' pain escalates.
     
    when do you see your rheummy? soon?
     
    thanks for sharing Zeek! 

    zeekman
    Regular Member


    Date Joined Mar 2007
    Total Posts : 39
       Posted 3/11/2007 10:29 PM (GMT -7)   
    Ok this scared me even more.....there can be neurological problems too with RA? :( :( :(

    Im freaked out again after reading this....


    "There can be signs of mononeuritis multiplex and atlanto-axial subluxation. The latter is due to erosion of the odontoid process and or/transverse ligaments in the cervical spine's connection to the skull. Such an erosion (>3mm) can give rise to vertebrae slipping over one another and compressing the spinal cord. At first the patient experiences clumsiness but without due care this can progress to quadraplegia."

    quadrapalegia?

    please tell me this is very rare...

    zeekman
    Regular Member


    Date Joined Mar 2007
    Total Posts : 39
       Posted 3/11/2007 10:46 PM (GMT -7)   
    I have not got my blood results yet. Probably tomorrow. I am soooooooooo nervous. Im actually scared I might have some kind of crazy, incurable disease or cancer.

    Thanks for the kind words. I will check on Arthrotech. I need to get diagnosed asap otherwise I will go out of my mind. I just want to find out what is wrong and take care of it.


    Im afraid that since I have only had symptoms in the last few weeks, that more damage will be done without treatment in early stages.

    Im so scared. :(

    hopefully my doctor is steering me in the right direction and ordered the correct blood tests. On the blood test paper I gave the lab the box "arthrits panel 2" was checked but nothing checked for rheumatoids on there.

    every little pain is freaking me out now :(

    My dads' former company makes prednisalone. He said it has been on the market for 40 years.
    Is there a way to tell from the beginning stages or from blood tests how severe the RA can be?

    erin.K
    Veteran Member


    Date Joined Mar 2005
    Total Posts : 3148
       Posted 3/12/2007 10:15 AM (GMT -7)   
    :-)  hey Zeek,
     
    don't get freaked out!  as much as it is good to educate yourself about RA & autoimmune disease...looking @ too much isn't great either; and if you do...let most of it roll off your shoulders.  there's going to be a laundry list of possible side effects & so on for pretty much ANY medication for rheumatic diseases.
    this tends to freak people out.
     
    what i do?  i look for the important stuff:
    1) make sure none of the meds you already take interfere with the new RX's.
    2) allergy...especially if you'r allergic to SULFA or aspirin.
    3) ANAPHYLAXIS...it's good to know if a med risks an anaphylactic reaction or Steven-Johnsons Syndrome.
    4) and also if the med may cause diarrhea, nausea, vomiting, etc...
     
    when & if you start new meds, you'll be having blood work done probably monthly if not more.  that's to monitor your blood counts, liver, and all the important stuff.
    that way...you'll be safe, if something screwy happens you can catch it right away; that's why it's crucial to keep all doc apptointments too...when under constant care a lot of things are preventable.
     
    neurological disorders like the one you stated are yes, rare.  sure it could happen...anything can happen to anyone.
    the reason that neuro problems can occur is because Rheumatory Arthritis is a systemic, chronic/progressive inflammatory disease.  inflamation can damage nerves.  it's a WHOLE BODY/ORGAN condition so there's a chance that anything can be involved.
     
    the blood tests you get can't tell you the "stage" of RA...in fact, the blood tests really only hint towards whether or not there's some sort of inflamamtory/autoimmune disease going on...the rest of the diagnosis is made by physical objective symptoms & XRAYS (and other films).  a lot of people have tests return saying there is no rheumatoid factor present...yet that doesn't rule out RA (see??? confusing!!!)
    yeah, the arthritis panel covers RA.  it'll also cover Sjogrens Syndrome, Lupus, and a few other AI diseases. 
     
    it's normal to be scared, share that with your doc!  he/she can alleve a lot of unnecessary worry & tell you what to expect, risks, options and so on.
     
    i hope you get your results back soon!
    :-)  


    Arthritis Forum Moderator
    Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
    Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 10mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Rozerem 8mg; Dilaudid 4mg tabs for pain. 

    Post Edited (erin.K) : 3/12/2007 11:18:22 AM (GMT-6)


    zeekman
    Regular Member


    Date Joined Mar 2007
    Total Posts : 39
       Posted 3/12/2007 2:52 PM (GMT -7)   
    I got my results back today from the doctor. I am positive for RA with a rheumatoid count of 90. I asked if that was high and they said slightly high but they have seen people in the 500's.

    Can the RA level go up over time? Is there a way to stop the levels from going higher?

    I cannot see an RA till MAY!!! I was mad about that. They said a couple months won't matter but waiting years and years will.

    I am now going to start from square 1 and learn what is best to help me through this disease.

    I guess I am lucky that I caught it early and we have drugs to combat it. I am still pretty scared :( The thing that scares me the most is having it moving aroung my body/organs. Will the medications help with this or am I at will to the disease?

    "the reason that neuro problems can occur is because Rheumatory Arthritis is a systemic, chronic/progressive inflammatory disease. inflamation can damage nerves. it's a WHOLE BODY/ORGAN condition so there's a chance that anything can be involved"

    So you are saying as long as certain organs/joint are kept at low inflammation levels, it can prevent problems? Is it guaranteed that it is going to progress to other organs or will drugs stop that?

    I would ask all these questions to my RA but I can't see him till may. Who knows what could happen til then?!


    A friends mom has RA and she told me as long as you take care of yourself, you have nothing to worry about. The reasons people have RA progress is they do not take care of their bodies, she said.

    erin.K
    Veteran Member


    Date Joined Mar 2005
    Total Posts : 3148
       Posted 3/12/2007 5:33 PM (GMT -7)   
    dear Zeek,
     
    ah wow, my sympathies as for the results, but you did sound like you were expecting it so i hope it didn't come as too much of a surprise.
    the good thing is that they DID FIND out what the issue is.  so many folks have to do the back n' forth bit for years sometimes before a diagnosis is made.
    poooh! wish your appointment was sooner, bummer. 
    in the meantime you do have a primary care physician right?  in case you need some antiinflammatories or steroids or something?  (((((((( HUGS )))))))))
     
    the RF is a titer (sorta like how you get the chicken pox titers checked) it's an antibody that floats around in your body.
     
    (in fact...read my post about RF 101!!!  i'll "bump" it up to the top of the arthritis forum)
     
    your RF numbers can fluctuate.  mine was 139; 113; 23; 50somethin'...and now it doesn't even show up.  RF doesn't really play too much of a part once a diagnoses is made....it's there, that's all ya need to know.  and it might not be there the next time or it may be higher, or even lower!  it's just a screwy little booger!  tongue  
     
    regarding your question about internal organs...there's no way to specifically protect any particular organ...that's where DMARDS and Biologic Modifying drugs come in.  the meds the rheummy starts you on for RA will help slow your immune system from attacking your body in general.  they will "overall" help reduce inflammation caused by RA.
     
    the one thing you should do is keep annual eye exams...that's important.
     
    nothing is written in stone that every horrid thing will happen.  the medications are great & help immensely.  a good lifestyle, healthy diet, activity plays a big part.  getting complications from RA isn't a given.
     
    in the event of the RA progressing?  you'll see a few folks here have lung problems, liver problems, etc... but these things happen, and ya deal with them as they come.
    personally i have complications from RA that effects my heart & lungs...and i barely even think of it.
     
    you've just been through a lot...now it's time to regroup & get some rest and try to relax.
     
    you'll do just fine :-)
    Arthritis Forum Moderator
    Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
    Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 10mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Rozerem 8mg; Dilaudid 4mg tabs for pain. 


    zeekman
    Regular Member


    Date Joined Mar 2007
    Total Posts : 39
       Posted 3/12/2007 6:11 PM (GMT -7)   
    Thanks for the reply Erin. You are seriously the ONLY person in the world that is helping me right now. It amazing that you are being so helpful. You are an angel!!!!

    I have been on a freakin' emotional roller coaster this last week. I cried today, all day. I was scared then strong again then went back into shock...... I am just glad I know what it is and I can treat it. This might sound bad but at least its not a inoperable brain tumor. I do still have a life to live. Who knows, I could be healthier now then before, when I wasn't watching what I was putting in my body.

    Erin...do you or have you ever gone into remission? Have you had a long period of time where you do not have symptoms? I was reading that this can actually go away for long periods of time. I read online today that the earlier you treat it the chances of it acutally "burning out" is good. Have you heard any of these things from anyone?

    erin.K
    Veteran Member


    Date Joined Mar 2005
    Total Posts : 3148
       Posted 3/12/2007 6:39 PM (GMT -7)   
    remission? me???? i like to call it...
                                                   INTERMISSION...
    my intermission usually comes after 3 Kamakazi's or a few Margaritas. tongue {Ducky...shut up don't even start, LOL} tongue hah.
     
    ok...serious me:  once upon a time in 2004 there was about 4 months where i was "good".  i was able to work okay & attend classes & be a little normal.  this was 6 months into Enbrel.
     
    i'm not a really good example...i only began treatment for RA in 2004 so that was almost 8 years having RA with no treatment. by the time i started therapy, i was pretty bad (well really bad).
     
    the earlier it's treated the better...the earlier you start treatment, the higher the chances are that you'll get a nice remission.
     
    i know a lot of people who started with very mild RA & once they began their meds? it was as though nothing ever happened...totally fine.
     
    you wouldn't be human if you did NOT go through an emotional rollercoaster right now.  you're stressed...it's understandable...who wouldn't be?
     
    the more you work things out in your head & the more you write things out here?...the clearer you'll get.  the nerves will settle i promise.
    you have my email.  :-)   
    Arthritis Forum Moderator
    Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
    Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 10mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Rozerem 8mg; Dilaudid 4mg tabs for pain. 


    zeekman
    Regular Member


    Date Joined Mar 2007
    Total Posts : 39
       Posted 3/12/2007 11:21 PM (GMT -7)   
    Thanks for the reply again erin and for the Email!!! :)

    What a day...

    I forgot how crying can make you feel better.....

    I got lucky and scheduled an appointment with my primary tomorrow. I am just going there to ask questions until I am satisfied.

    I am getting sick already of worrying about RA. Im ready to move on......I cant do anything except take the prescribed meds and live a healthy lifestyle. If I die, I die. Thats life I guess :(

    What I learned today.....
    From this day forth, I am going to look at RA not as a disease but as a minor ailment. I think too many people get scared by RA (im one of them) when it isn't that bad if you take care of yourself!!!!

    Erin, if you were in my position, what treatment would you seek? You already know I have only had symptoms for about a month with major flaring in my feet, knees fingers and shoulders. minor flares in my toes, ankles, elbows. Im curious as to what you would do, what kinds of treatments you would seek.


    I will make sure to share any knowledge I recieve with everyone. You probably know alot more than I obviously do but mabye I can catch a nugget of info that can help.

    zeekman
    Regular Member


    Date Joined Mar 2007
    Total Posts : 39
       Posted 3/13/2007 12:04 AM (GMT -7)   
    one more question....Can RA lead to or cause other diseases?

    thanks

    erin.K
    Veteran Member


    Date Joined Mar 2005
    Total Posts : 3148
       Posted 3/13/2007 8:08 AM (GMT -7)   
    mornin' Zeek,
     
    i wish you well on your appointment tomorrow.
     
    ah geez....RA isn't a death sentence Zeek! tongue i swear...you won't keel over any time soon! tongue
     
    i understand  how you're trying to think of all of this...when you say "view it as a minor ailment".  for many, many people the symptoms of the disease are just minor ailments; even though having to take meds to control it they can live normally with little to no interference or change in lifestyle.  that's the ideal scenario & that's what we all want (and that's what the docs want too!).
     
    the symptoms of RA can be a "minor ailment" but the autoimmune disease itself is MAJOR.  the symptoms can be minor...but the condition itself is a serious one no matter how faint the activity of the disease may be.  it will be something that a person must deal with & treat for the duration (a lifetime).
     
    i only say this because people who have RA to the point of disability (myself included in that one) would flip out if a letter came back from disability saying that RA is just a minor ailment! yikes.
     
    whatever you do...don't brush this off.  when i was first told i had RA, my physician told me to "ignore it" and that it will only bother me when i get old.  i was just 16 at the time, so i did just that...i ignored it!  8 years later i'm disabled @ age 26. i wish i knew then what i know now.
     
    if i were just starting out?  i would absolutely go on an Enbrel or Humira type medication (the TNF-inhibitors) to help slow the progression of RA. absolutely!  i would also take with that either methotrexate, Imuran, or 6MP.  (this is what's called combination therapy)  one med makes the other med work better.
    for pain, swelling, infammation & stiffness i would also add to the list an NSAID (Advil, Indocin, aspirin, Arthrotec, etc...) or a COX2 drug like Mobic.
    i would have on standby a presciption for prednisone (a lifesaver for flares).
     
    and depending on the amount of pain in your joints & body...perhaps a painkiller (Tylenol, Darvocet, Percocet, Vicoden, etc...)
     
    if i had the chance to do it over again the right way...that's how i would do it.
     
    can RA lead to other diseases?  in a nutshell...yeah it could.  when a person has an autoimmune disease, the chances of developing another autoimmune disease are greater.  again...it's not written in stone that it will happen...but it does occur.
    a lot of people who have RA also have Lupus! or Crohns disease, or Ulcerative colitis, ankylosing spondylitis, and various other AI conditions. 
     
    you are right by all means by saying a lot of people get scared by RA...it's almost lik a reflex! 
    what i have noticed in many people is that they get soooo freaked out by all of the articles & write ups about med side effects & complications...that they get convinced they have something more wrong with them, or are convinced that they will fall victim of the very rare complications of RA.
    that's where too much information will work against you.
     
    don't worry Zeek, things will fall into place.  it's the initial shock that's the worst.
    :-)  one day at a time.


    Arthritis Forum Moderator
    Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
    Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 10mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Rozerem 8mg; Dilaudid 4mg tabs for pain. 

    Post Edited (erin.K) : 3/13/2007 9:13:37 AM (GMT-6)


    zeekman
    Regular Member


    Date Joined Mar 2007
    Total Posts : 39
       Posted 3/13/2007 3:43 PM (GMT -7)   
    Erin,

    Hope you are feeling better and got some sleep....mabye you are in zzzzzzzz town right now....I hope so! :)

    I saw my primary today. I feel ALOT better after talking to him. He was very honest and answered all my questions I brought with me. He said I have moderate to severe RA from his observations and it could be kept under control easily with certain meds. His mother has RA so he helped me out alot with my questions. He said that since I came in at first signs of RA, I am going to do alot better and even STOP joint/nerve damage. Chances of it spreading are rare and even if it spreads, it can be managed. Also, the last 10 years have seen amazing leaps in the RA medical community. Bottom line, its not a death sentence. You CAN live a normal life with RA, SERIOUSLY!!!

    He prescribed Deltasone, which is prednisone. I do NOT want to know any of the side effects because I do not want that to influence the way I feel.

    I also have even better news!! I have an RA doc appointment on thursday!!!! I guess my primary doc heard what I said about early, aggressive treatment and took it to heart. He called the RA (Dr. Maier, eugene, oregon) and had them bump me up!! I am very happy with this! That means I am recieving treatment only 5 weeks after first symptoms. That has to help somehow.....

    I asked about my blood work and he said that I had a CD or CG level (inflammation level in the blood) of only 29 and that was good. He said my liver was perfect and that means I can take "heavier" drugs. He said MTX is what I will probably be put on at first.

    I am to stop taking my ibuprofen when I take the steroids because he said it can cause stomach problems.

    Well here I go!!! into the wondeful world of chemicals!!!!

    hope all is well with and I am praying for all of you!!!

    much love

    Zeek
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