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leeloo67
Regular Member


Date Joined Aug 2006
Total Posts : 81
   Posted 8/16/2006 11:28 AM (GMT -7)   
<SPAN class=211590718-16082006>Hi! New member here. I am actually here just looking for other people in my situation. As my situation progresses I am discovering that friends, family and co-workers (and especially employers) do not understand at all. The rollercoaster of pain to doctors to treaments to resultant illness (immunosupressive drugs rock!) wear on outsiders' patience, especially when I appear to be healthy on the outside. Arthritis and the treatment of it has already ruined parts of my life and is currently wearing hard on me, my family, and my job.

<SPAN class=211590718-16082006>

<SPAN class=211590718-16082006>I am 35 years old, and my arthritis has a long history, but actually only diagnosed this past September (2005). Long story but for some reason all the doctors ruled out arthritis for various reasons despite obvious (in hindsight) symptoms and family history (a grandfather and aunt with rheumatoid arthritis). My knees have bothered me since age 20 and I had been to a few knee specialists (also mentioned but eventually ruled out arthritis), but when the pain started to affect my feet it was my podiatrist who eventually got me on track to a rheumatologist. Before my appointment (several month wait - of course) it spread to my ankles, hips, back, shoulders and elbows. The rheumatologist was stunningly competent and diagnosed me instantly and put me on treatment right away. Methotrexate, Prednisone, Lodine, folic acid. It is being treated as rheumatoid, but the official diagnosis is osteo-arthritis as the rheumatoid test was negative, but I have one toe that is misshapen now (happened after the arthritis hit my feet). My knee swelled about 2 weeks before that first appointment, and at this point I'm an old pro at the aspiration process... The medication started to work right away and I've been getting better ever since - that is, the arthritis has been getting better. But, after a few months I started getting sick all the time. Any time someone with the sniffles walks past me I end up with a respiratory or ear infection that lasts for weeks. My new employers are starting to give me the evil eye what with six illnesses in 5 months. I won't even go into what the old employers thought of me and my arthritis.

<SPAN class=211590718-16082006>

<SPAN class=211590718-16082006>Hope to mingle here with people who understand. I've only just come to accept I have a chronic illness that is going to probably continue to mess things up. Perhaps I can help some others with what I have been through as well...
 

Post Edited (leeloo67) : 11/10/2006 5:24:37 PM (GMT-7)


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 8/16/2006 8:38 PM (GMT -7)   
welcome to HW! tongue you will find many of us are in simular situations, so feel free to vent or ask questions.  i have RA and am a working mom, a bit older than you but who is counting the years anyway? lol  
 
i am familar also with that rollercoaster of pain you speak of. i tend to be in denial on good days and angry on bad ones.  but i too "keep on truckin'" and that phrase is a  sure sign of my age. tongue
 
as far as the weight issues ... are we ever happy with our weight? naw... i have gained tons on prednisone and hope someday i will get off it and loose some weight just on the mtx, but who knows?
as far as all the colds i am a hand washing freak!  wash wash wash and when unable i pull out my trusty lotion in my purse or car and disinfect that way.  germs are all over.  just got an email saying my cell phone is dirtier than a public restroom... gross.... the best way to stay healthy is back to basics and use lotions so your skin doesnt break down with tiny cracks from all that washing as germs look for open doors. 
 
well hope you have a good nights rest and keep hope tongue ~*yalinda

leeloo67
Regular Member


Date Joined Aug 2006
Total Posts : 81
   Posted 8/17/2006 9:49 AM (GMT -7)   
Ahh, the weight gain with Prednisone.  I was worried about this at first but I managed to actully lose six pounds despite taking Prednisone for 9 months!  I noticed I felt hungry all the time even if I had eaten recently, but it didn't actually quite feel like 'real' hunger - it was like hunger without the emptiness or something.  It took some will power but I forced myself not to eat more than usual.  Later on I think the consecutive illnesses conspired to keep my weight down! 
 
Gosh, is Prednisone nasty or what though?  At first I thought it was a miracle drug until the illnesses started.  Each time the doctor would reduce my doseage the pain would spike back for a few weeks.  When I went off it at the end of June the pain spiked really bad and I almost called the doctor.  The only thing that kept me from calling her was the vision of injectable methotrexate in my future (I'm still on 8 x 2.5mg pills now)! 

yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 8/17/2006 1:45 PM (GMT -7)   
i also take 8 mtx and am trying to decrease my prednisone. i am fighting daily taking only 10 mg pred. but i dont want to go back up to the higher doses. i had to eat or i was feeling so sick kinda like morning sickness with the hunger when i was on the higher doses.

what does your doctor say about all the colds you keep catching? do you have little children that bring all thoses kid colds home?

i have been lucky with no colds thus far but i am certain i just jinx myself lol

well lata ~*yalinda

leeloo67
Regular Member


Date Joined Aug 2006
Total Posts : 81
   Posted 8/18/2006 6:23 AM (GMT -7)   
It seemed to me that as the methotrexate built up the prednisone became less and less necessary (to me).  It was disconcerting though to have the spikes in pain each time the prednisone dosage was cut, and when I went off it altogether the pain spike was really bad.  I was determined to get off the prednisone though. 
 
The doctor told me the illnesses should lessen now that I am off the severely immunosupressive prednisone.  I am actually sick right now and have been for three days and it hasn't been as bad as the previous illnesses (last one was last month and it was bad - double ear infection and respiratory infection lasting several weeks), so I am hopeful.  If I can reach a level where the pain is tolerable and the illnesses aren't too bad, I will be happy.
 
Pain is so relative now though.  I remember when I first started the prednisone.  I felt like I was cured three days later, only to realize a few days after that I was in fact still in pain but even just the small amount of relief felt awesome and wonderful.  The pain levels dropped like this over a period of a few months, and each time it would feel like the pain was gone and only later I would realize I was just 'used to the pain' so to speak.  It is funny how pain wears on you at the same time it makes you really tough.

 


Momf3boyz62
Regular Member


Date Joined Aug 2006
Total Posts : 21
   Posted 8/19/2006 9:38 AM (GMT -7)   

HI,

I can also relate how chronic illness messes with you and your life. It sucks big time. I lost my dream job working in medical records almost 3 years ago because of my screwed up immune system from Methotrexate. They basically pushed me out using all sorts of mean tactics and acting as if I was faking(even tho my doc. sent excuses after excuses for me to be  on FMLA) To think it was a hospital that deals with illness and they treated me like I had leprosy! My husband since then has held down 2 jobs, missed seeing his kids(works 80 hours a week usually) so heres the guilt on me. So to make myself feel better Ive been taking online classes to try to see if anyone will hire me in the Coding Field(yes, medical again, you think I would have learned) eyes If and when I get better enough to hold a job down. I see a Psychologist 1 X a month who has Fibromyalia, she keeps my mind pretty focused on not doing too much, (I think I have to be perfect) tongue anyway, just starting on this site has made me realize Im not alone in the craziness that no, my family doesnt get either(Bros. Sist, mom.) My husband wasnt even real nice to me when I was first sick in 99, he thought I was faking too. So theres had to be forgiveness there, but now he knows. Hes seen the days of no movement,weeks of being in bed, vomiting, diahrrea(sp) pain from shots hes had to give me and the list goes on.... Lovely weight gain of his wife and her loss of self esteem with it.  Hope this helps, just a smidge of my personal hell.

My principal Diag. is RA/Felty's Syndrome. Ive yet to find someone who has this crap.(Feltys)

If you need to talk Im here and with you in this.

Cheryl


Diag. with RA/Felty's Syndrome January 99.
Previous meds-Methotrexate,(killed my immune system for 2 years) Enbrel,(didnt work) Humira, Ibuprofen, Arava,(allergic to?) Prednisone, Folic Acid.
Now only on Prednisone because of an allergic reaction they can't figure out, so Im heading to U.of I hospitals and clinics in Sept. for testing, new meds!? Who knows, who cares! Just want off steroids so I can lose weight.


leeloo67
Regular Member


Date Joined Aug 2006
Total Posts : 81
   Posted 8/21/2006 8:16 PM (GMT -7)   
Gosh all of that does indeed sound familiar! My old job was ridiculous. The new place where I work is ok but I'm getting the evil eye what with the 'new guy' being sick so much. Several of my illnesses were over the weekend so they don't even know the half of it (and I have to get the evil eye from the wife at home too). I was sick last week as I wrote above, was better by Sunday, and am now getting sick yet again. Or perhaps I didn't get rid of what I had. I don't know. At least I am coughing and sound congested, unlike when I just had the bad arthritis pain and I had no outward symptoms other than slow movement (translates to 'unmotivated' at work) and wincing (translates to 'faking' or 'acting' at work) and my favorite - malaise (translates to 'lazy' at work and at home!).

Oh, and your signature that says 'Ibuprofin' made me chuckle. The foot doctor put me on this before I was diagnosed. I was up to 2400mg per day and all it would do is take the sharp edge off the pain. After reading your signature I feel lucky that I haven't had many side effects with the drugs (other than the weak immune system) - I mean, I was able to tolerate the pred and the methotrexate and even the Lodine and Ibuprofin never hurt my stomach or anything. I suppose it could be worse, but I really hate to think about that considering how bad the pain got last year...
 

Post Edited (leeloo67) : 8/21/2006 9:20:05 PM (GMT-6)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/22/2006 2:11 AM (GMT -7)   
hey there,
well gee, the more the merrier right?  so happy you both have found HEALINGWELL leeloo & mom! :-)
leeloo, what baffles me and i'm sure it does you as well...is how can they put a definitive DX of OA? is there actual cartiladge wasting in your joints or degeneration in them DX via XRAYS?  because you sound all AI to me and RA being the probable culprit as per your symptoms!  oy! eyes and secondly, OA isn't treated with immunosuppressive chemotherapy confused so that's a little flipped w/ the DX of OA.
 
i hate steroids as well.  i took 40mg today and yeah...'m still awake. redface   and you are SOOOOOOOOO right, the spikes after a decrease in pred is horrendous! i couldn't quite describe it..but you nailed it with the term "SPIKE".
 
having a lot of anxiety/doubt/ fear about my future and work too. i'm 25 and feel like i never even got a running start on my career...not even a chance. altough i was always employed either part or full since age 11! had to leave work May 2005 due to RA.
 
awe, sounds like you'r picking up every character out there floatin around. be careful.
again, a very warm welcome to both of you.  2 more great assets to our little community here. we've a fantastic, loving, compassionate group of guys & gals who DO understand.
 
my mom & boyfriend are like the ONLY people that actually "GET IT" and "see" how bad it is right now and has been the past year (progressed worse).  AI diseases are a difficult thing to grasp for most who do not live with one theirselves.
glad to have you. 
sincerely,
erin (ps...Felty's syndrome here! enlarged spleen, elevated lymphs, barely any WBCs.  it's actually common, but overlooked much of the time.)
Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


Momf3boyz62
Regular Member


Date Joined Aug 2006
Total Posts : 21
   Posted 8/22/2006 5:57 AM (GMT -7)   

Erin!

You have Felty's!

Tell me your story and Ill share mine when youre done!This is great! Not really, lol, but, I feel like a lost child out here. Some of my Dr.'s have never even dealt with it.(Felty's)-My hemotologist)Do you go to one for your blood counts? How low have you been? How are your neutrophils and Lymphocytes? My spleen was enlarged a few years back when my counts were outrageously low, when I lost my job, and was forced to quit.

Cant wait to hear back from you!

Thanks everyone so much for the support. Wished I could have found this years ago.

Cheryl yeah


Diag. with RA/Felty's Syndrome January 99.
Previous meds-Methotrexate,(killed my immune system for 2 years) Enbrel,(didnt work) Humira, Ibuprofen, Arava,(allergic to?) Prednisone, Folic Acid.
Now only on Prednisone because of an allergic reaction they can't figure out, so Im heading to U.of I hospitals and clinics in Sept. for testing, new meds!? Who knows, who cares! Just want off steroids so I can lose weight.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/22/2006 8:39 AM (GMT -7)   
hey Cheryl,
my lymphocytes are sky high. also present with enlarged spleen, slightly anemic w/ the RBCs and very very very low WBCs. so they made their DX on that. was told it's common w/ RA and i just need to keep my regular labs as ordered. but other than that...i don't even think about it. i am sure there are much more severe and complicated cases than mine.
i so get pains around the spleen liver and always w/ the same lymphocyte very high and neutrophils very low. this has been since last august i believe?
Cheryl...you've found your home base! lol.
is yours very problematic?
take good care,
erin
Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


Momf3boyz62
Regular Member


Date Joined Aug 2006
Total Posts : 21
   Posted 8/22/2006 4:36 PM (GMT -7)   

My white blood cell count/RBC stayed just below normal my first few years of DX, then plummeted after my Doc. said I was in remission and took me off Metho. and prednisone. Slowly for the next year(2001) my counts slipped and I had no idea. Thats the time I started my dream job at the hospital and my white counts plummeted to 600-900. Neutrophils low/enlarged spleen, even times of constant fever. I missed work all the time then because I couldnt be around sick people. After I quit in Oct. 2003, they started to rise again. (go figure) I read Metho.suppresses so bad, I figured thats what did it for those few years. Then I was on Enbrel, not any help, then Humira, which I just had to go off of, due to poss. allergies. Im only on 25 mg Pred and Vicotin for pain. Im going to U. of Iowa clinics in the next few weeks to see about poss. new drugs. Im like you, dont think about it much, I live a very normal life, unless the pain/fatigue is bad. I have 3 sons and when I can- I play tennis, camp, ride bikes with them and I have became more overweight also, but am still as active as I can be. Some say its denial, no, I know when to rest/I just love life. My neutriphils are a little high now and my lymphocytes are low. They say thats the pred. I just saw my hemotologist last month and I dont have to go back for 2 years unless my counts relapse again. Have you had many infections? Fever? Do you work?  Can I ask how old you are? and when you were DX? Thanks for talking.

Cheryl


Diag. with RA/Felty's Syndrome January 99.
Previous meds-Methotrexate,(killed my immune system for 2 years) Enbrel,(didnt work) Humira, Ibuprofen, Arava,(allergic to?) Prednisone, Folic Acid.
Now only on Prednisone because of an allergic reaction they can't figure out, so Im heading to U.of I hospitals and clinics in Sept. for testing, new meds!? Who knows, who cares! Just want off steroids so I can lose weight.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/22/2006 5:01 PM (GMT -7)   
sure! i'm 25; was DX with RA at age 16 but was told to "ignore it" because i didn't have too much joint pain...but was RF +. so it got really really bad when i was 20 & 21 & 22. had to leave nursing in May 2005 due to mobility & disability. trying to continue my education in the meantime.
i get quite a few fevers periodically. i'm very very careful so i don't get many infections unless i'm out somewhere & i catch say pneumonia like i did in March. i've a lot of complications from the RA and crohns however. not working now. just got out from having small bowel obstruction last week in the hospital. so it's a day to day thing for me.
you take care.
erin
Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


leeloo67
Regular Member


Date Joined Aug 2006
Total Posts : 81
   Posted 11/10/2006 5:38 PM (GMT -7)   
Rant time again:

Well, I've been sick two more times since the last post, and the evil eye is getting worse from the employers. They told us in a meeting a few months ago we didn't have to speak to anyone if we had to call in, but just leave a message. So, I sent several emails to people Monday morning when I woke up with my throat hurting (email was sent because it hurt to talk) and got replies to the emails. Then the next day when I went in the supervisor reminded me I needed to call and actually speak with someone and then "reviewed" the leave policy with me and had me sign it again. I don't think they actually expected me to read the policy, but I did and it didn't say anywhere that an employee has to call and actually speak to someone.

There have been several other nigling things they've started doing here and there that are counterproductive and not in keeping with how the other employees are treated (for example they asked me to work overtime, and then they flipped out when I worked 11 hours overtime - don't ask me to work overtime if you don't mean it!). This is terrible because my attitude at work has always been to try to do the best job I can and come in as much as I can.

So, I've decided to quit. I'm going to tell them in a few days that I'm leaving at the end of the year. I'm going to try to do my own thing with real estate. I did it part time a few years ago and had tons of success, but was scared to switch over to commission only income. I will be done with the required education to reactiveate my license on December 14th, and I already have two customers lined up that are definites.

I mean, sometimes at my current job and at my last job too I would completely bust my butt and just do ridiculous amounts of work and in the end all I got was chided for missing a few days here and there. So, I'm going to bust my butt for myself and see how that works out! I'm going to turn this negative bs I've been dealing with into positive energy!!!
 

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