two random questions | Arthritis Information

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so i have been on plaquenil since i was diagnosed with RA and at first the side effects were awful for me but after some time they tapered off and i felt better, i even weaned off the prednisone for a while.  however lately my ra symptoms have changed, instead of the palindromic rheumatism where i had severe severe pain for a few days at a time then a few days of relative no pain , now i am having different pain.  my toes , ankles, knees, shoulders and hands are all more swollen, achy and very stiff and icky on a daily basis.  i had two months of really good  now its all kind of come back in a different way.  i upped the date of my next appt but i am curious as to why my pain has changed so quickly, has my ra changed or has my body gotten used to the plaquenil and its not as effective now-it is keeping that serious severe pain at bay though. 


my second question is more random-i got fired from my job as a bartender right before christmas because my manager said 'my personal problems were interfering with my performance...' aka my RA was.  i felt really jilted bc i worked really hard and the only time i asked for help or needed anything special was lifting heavy full kegs onto a shelf four feet off the ground which i always needed help doing, but whatever.  i never missed anytime or was late or did anything at work that leaked my personal life bc you just cant do that in a bar.  he knew that i had just been diagnosed and i gained some weight from the prednisone and he got all drunk and yelled at me and told me he hired me to be eyecandy (WTF?!?) and that i went and got fat on him so i suspect that is what he meant by my personal life is interfering.  now my question is i was always upfront with him about what i was going through and how i was confident that once my meds started working my ra would not even be noticable.  the only reason he even knew about it was bc in the beginning before i knew i was really bad off and had all kinds of pain and no one could tell me why, so i was moving a lil slower and some days had a visible limp but i still showed up and smiled my way through it all.  so then he went and fired me yet gave me a glowing letter of recommendation-about how great of an employee i was and how guests loved me and i was great at my job...just didnt make sense to me.  anywho i got a new job in a local factory starting out as a temporary employee though, and i have been keeping my RA a total secret.  luckily i have been pretty decent as i mentioned however i am scared that the reduced effectiveness of the plaquenil is going to start affecting me and hurt my chances of getting full time.  should i ask my dr to start a new medication ASAP so i dont have to worry about that?

oh yeah and edited to include wondering what you guys do if you start a new job.  do you keep it secret so people dont have any prejudice or are you open from the beginning?  see i am a temp so they can let me go for no reason thats why i am keeping it a secret
erica334739474.3892592593

Erica

That really sucks about the job.  I can't imagine how that felt.  I am so glad to hear that you have a new job.

I don't know about telling.  As I haven't looked for work since I have been told I have RA.  I had to quit my job due to my knees and shoulder and haven't found one since.  Heck what kind of job can you have that you don't use your arm, or hands a lot, or can't stand or sit for long periods of time.  Or lift anything.

But if I did I guess I would be like you too scared to even tell anyone afraid it would cost me my job.  I can understand why you keep it to yourself.

I really wish I could be of more help.  I do wish you good luck.  And keep us posted as to how things are going.

I told my boss about my RA when I was diagnosed.  He was very understanding and has been very helpful.  It's such a relief to be able to be totally honest, though I know that's not always possible.  I feel fortunate that I have a desk job that isn't physically demanding...makes it a lot easier to adapt and continue to function well.  The only concession I've made so far is to reduce the amount of business travel, cross-country trips in particular can be difficult due not only to the RA symptoms but the side effects of the meds (...the top 3 side effects for me are nausea, diarrhea, and dizziness; not your favorite travel companions).  Fortunately the side effects with the Humira and Arava have been pretty mild.

Good luck, Alan

erica3347,

My RA started out migratory as well, only I had weeks of painful days before I finally had a few days with no pain.  I just kept cycling.  I was given Plaquenil as well and it worked wonders for about two years.  I was also taking Relafen, an anti-inflammatory.

My symptoms suddently changed.  I woke up once in the middle of the night with painful wrists, knuckles, and shoulders.  My RD said it was just normal progression of the disease.

As far as the bartending job - good riddens!  You don't want to work for such a shallow person anyway.  That made me angry reading your post.  Eye-candy!  How dare he.

When is your next RD appointment?

i kind of felt like good riddance too, however i hated the way it happened ya know right before christmas.  he has heard that i was looking for a less stressful job that was easier on my body and maybe that prompted him to fire me, plus he was always drunk insulting us and abusing us like that!  one of our regulars suggested that he was lucky he hadnt been sued for harrassment or discrimination yet

my next appt was for april 10th but i got him to change it to february 1st because i dont want to ignore the change and get worse, bc anytime i ignore something it ends up coming back to bite me.  i had the cycles too and the plaquenil helped until recently.  i was hoping that it wasnt the normal progression...bah!  i had this really high hope that i'd be painfree for a while haha! can he maybe add something else to my medication lineup to help with it, because i've been taking the 24 hour aleave he recommended and thats not helping either...

Yeah, my first thought when I was reading your post was that he needed sued.  What a total jerk.  You are better off without that job.

When my symptoms worsened, my RD gave me a burst and taper of prednisone to get it under control, and tried to add Sulfasalazine.  I absolutley couldn't tolerate it; I had horrible abdominal pain.  So, I was stubborn and just kept doing the burst and taper of prednisone to control the pain. 

My symptoms kept getting worse and I was taking prednisone way too much, so my RD finally insisted I try another drug, so I tried methotrexate.  I'm still getting worse, so my RD added Enbrel.  I wanted to immediately stop the methotexate (a drug I hate with a passion), but RD says wait until we know the Enbrel works.

Enbrel was awesome!!!  After the 2nd shot, I had absolutely no pain.  I also had lots of energy and even worked overtime that week.  Something I hadn't done in years.  Then I got bronchitis and had to stop both Enbrel and methotrexate until I'm better.  So here I sit, tired, shoulders and wrists starting to hurt, and just feeling downright yucky.  I've missed two shots and can't wait to start taking it again.

Erica, your post made me so angry.  What a jerk.  You really are better off without that job.  He did you a favor.  As for telling your new employer, in a perfect world your boss would be understanding, not hold it against you at all and there would be no problems.  I'm sure there are bosses like that out there, but you don't really know how this one will react, do you?  I would definitely NOT tell anything about your illness early on.  Give yourself a chance to show them what you can do and let them be pleasantly surprised of how capable you are, illness or not, if you do decide to tell them later, after you've proven that you can do the job.  There might be a pre-conceived prejudice against you if the boss knows up front.  Even a minor issue, like taking a sick day, which anyone could do, might be construed to be proof that you're not up to the job.  No, don't give them any reason to disqualify your for a permanent position.  Err on the side of caution.  Good luck.  This may turn out to be a good break for you.

Sorry I can't be of any help with the Plaquenil issue.  I'm too new to this whole confusing disease myself.

Jesse8839474.4816319444I work at a physical therapy office, so they notice everything.  If I'm puffy, limping, swollen, can't bend, can't work my hands, etc....couldn't keep it a secret.  So, I spilled my guts.  I'm very fortunate, everyone has been wonderful.  My administrative assistant can look at my hands and if there is any typing to do, she automatically does it.  I'm extremely lucky.  But with that said, I have to be in out of control pain/stiffness not to do something myself.  I do not use it as an excuse, rather shift my responsibilities with what my body can handle on the day.Ugh I just want to strangle that ex-boss of yours.  I would say that I would love to chop some things off in the nether regions...but he doesn't have any!!! 

As far as the Plaquenil goes...plaquenil is a very mild DMARD (Disease Modifying Anti-Rheumatic Drug) that is usually given as a first line med in the fight with RA.  It could very well be that Plaquenil is no longer working for you and you may have to change your meds.  I certainly would be asking my physician for a stronger DMARD like Arava or methotrexate (mtx) to be used in combination with the plaquenil and try that for a bit.  It may be the case where you know have to move on to the biologics such as Enbrel, Humira, Remicade, etc. and use one of those in combination with Arava or mtx.  You and your physician will be the best judges on what direction your meds to go in now.

As far as the new job thing goes.  it really varies on what people tell their employers.  It really just depends on the employer and how good of an employer they are.  While it is extremely illegal (and you really do need to sic a lawyer on your ex boss for a couple of reasons) for an employer to discriminate against a person with a chronic illness or a disablity, it does happen all the time.  The only thing I would be worried about with your new employer is insurance.  Will you have insurance with this job?  If so, what is the pre existing condition clause?  You do not want to get entangled ina bunch of legal crap because you did not tell your employer about your disease and then go ahead and file medical claims against it.  It is a very tough situation to be in and there really is no one good answer to this.  I feel you really need to go with your gut on this one.  What does your gut say you should tell this new employer about your RA?  Always listen to your gut because it is very rarely wrong!  Seeing as you are a temp in fear of not being hired on permanently because of this...you could just not say anything.  Then again...are there legal ramifications to that? 

Wow, what a situation to be in.  I really feel for you.  Please let us know what you decide and what your RD tells you on the 1st.  I hope that you feel better soon!

Erica -

You need to go file a complaint with the EEOC.  Seriously, this type of garbage is not going to stop unless we leave a written record of this type of thing.  From what you described...it's both gender and disability discrimination.

Also - AP works really well on Palindromic - not only do I say it, being PRA, but my AP doc does too.

Hugs,

Pip

grammaskittles-i have been at my new job for a month and i am doing well.  i go home and crash of course but my fatigue has increased maybe bc of the new job/schedule etc.  i have health insurance through my hubby so i would opt out of any health insurance offered.  the temporary agency knows that i have RA and they were supportive of me going there to work so idk if there are any legal consequences.  my gut says to keep my illness kind of quiet to most of the people i work with peers and superiors etc.  mainly bc living in a small town and working in a factory with the majority being female-gossip and junk runs rampant and i try to avoid being noticed for anything other than getting my production and having good attendance.  you just never know how catty women are going to treat you at all even if youre normal much less if you have a chronic condition.  i can foresee people being nasty and trying to sabotage me getting full time saying i will be a liability later etc and i dont want that.  a few people on my team know mainly bc one lady is my familys neighbor and her daughter is bbfs with my sisters.  but shes uber friendly and supportive.  my feeling is that as long as i am able to do my job with no interference from my ra i will keep it to myself, if it starts to get bad and i need to explain myself to my team leader for being slow or (crosses fingers not) missing time then i will cross that bridge when i get to it.  i was praying that my flares would be to a minimum before i got hired so i could avoid the issue altogether.  i did work throughout the beginning of my illness and through all the pain and junk at my previous job without really letting it affect me (and i had those awful had to go to er flares) so even though i feel like the disease has changed i am hoping that i can grin and bear it, bc i really need to work...

pip-there are a few women-mothers in fact that all felt like we were singled out and treated harshly and it wasnt til we compared war stories that the similarity became obvious-our boss treats working moms like crap.  he screamed yelled cussed and wrote some of us up for minor things, while letting the young guys skate through getting away with murder.  a definite pattern formed and we were all hot that we got so much flack and the guys who didnt need a job as much were given special treatment.  he straight told me one day that he would treat me however he wanted and i would deal bc i had kids to support and had no other options and to get my fat ass on the bar and dance or i was fired.  he was drunk.  i told him to fill out the pink slip and kiss my ass and stormed out.  he fired me and took me off teh schedule.  then had someone else call me and apologize and sent me a text saying 'he thought i quit, apology offered'  and i for some idiotic reason (being that i did in fact need a job and was scared to leave before i got hired somewhere else) went back.  i was actually fired less than a month later.  so we ladies felt like we should badn together and slap with a class action suit.  he has had charges filed against him before for assaulting an employee (a mom) and generally sexually harassing and insulting anyone and everyone with a vajayjay. 

i asked my dr about AP and he sort of dismissed it but did say he had patients that were on minocin (? or doxycyline?) and had good results.  however i suddenly developed allergic reactions to amoxicilian clindamicin and sulfa drugs right before i got diagnosed...he seemed to not be clear as to whether these allergies were related to my ra or not and whether i would be helped by the ap.  he also didnt really seem to want to talk about it the way he shrugged it off i guess. 

Seriously,

I'm about as pro-woman as they come, and we've all had to deal with this stuff.  Harrassment has nothing to do with "sex" and everything to do with power.  Get those other women together and download the paperwork from the EEOC.  If there are more of you, they will especially look into it.  If he has a history, and the company is only doing the 'move him around fandango' you have even more of a case.  We are not protected even tho the laws are on the books.  And with the disability...this is beyond comprehension in this day and age. 

Anyway you can see an AP doc?  They know what meds you can take to help you that do not involve allergies.  And a lot of what we assume are allergies are really just the med working.  But...it's better to leave it to a professional to be sure.  Your doc doesn't sound like he knows about the differences between allergies and herxheimer reactions.  Your allergies shouldn't be your RA...but it might be a way to heal.  It's long and confusing...but it works with AP. 

Hugs,

Pip 


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