Have now moved on to the steroids

(((((((( BIG HUGS ))))))))  the "limbo" diagnoses i do understand as do many of us here.  it can unfortuntely take a good while (sometimes weeks, sometimes months) to correctly diagnose an inflammatory or autoimmune disorder.

this "in between time" is the part for you that will ultimately STINK! it's the worse time because there's no definitive "name" plus that alone adds to your worry.

the GOOD thing, is that pretty much all inflammation disorders (even if it doesn't have a diagnoses yet) will respond & are treated pretty much the same way.

Prednisone, Medrol packs...they are needed at times; i even hate to say "they do work!" it's a necessity now and then (and sometimes more than others) to be on some sort of steroid to help control this disease.  and learning to cope in having to go through steroid therapy is part of the process too.

no physician wants a patient on them for a long time so feel comfort in knowing that. they want ya off em' as soon as possible too!

there will be little to no harm in "now and then" short term use of them.  but, people do react differently and some are more sensitive than others...so if at any time you feel "not right" in taking them....speak up to your doc.  make sure the doc knows your concerns about the med.

me too...my hands blow up on prednisone.  for the past 10 days i have bee taking between 10mg to 50mg a day....forget about sleep! oy!

there has been a lot of concern & worry about these drugs for RA, especially the DMARDs & TNF meds and all...people are saying that they are frightened of them.  it's understandable.  i never had that worry or fear about them (and i have already been on Enbrel & Humira both in the past for 2 years each) now on Remicade.  if there was something out there that could help me??? i jumped on it.  having had RA for so long and  having it be so severe...i never thought twice about medicines.

you watch yourself, keep your bloodwork appts., and report anything that seems screwy...that's how you can help manage this. when starting these meds & all while you're on them, you'll be under a watchful eye. they'll keep a close watch on your labs to be sure you're doing well on the meds.

How are you?? That is true, that no matter what the inflammation, it does work well after the steroids, thank goodness for that huh??

I ended up going to the urgent care first, and ended up getting another medrol pack, well, I tell my rheumy nurse, that I have started another one, and I ask her should I finish it before starting the pred? or just stop it and start the pred, and she says she will ask the doctor and call me back.  She calls back and says, she can't give me the pred, after all!  Now, I have to finish out the medrol pack, and my rheumy needs to see me on Monday.  I was ready to start the pred, and now I get to taper off of another medrol pack, they are truly crazy things Hmm..I think I shouldn't have said anything about it lol  Oh well, I guess he can see me in my truest miserable form, because medrol packs really do a number on ya, by day one   The nurse on the phone couldn't believe I had another medrol pack!

I know its about being proactive, and that is why instead of just putting up with it this time and waiting for the plaquenil to start working, I just finally called my doctor and told them, I was hurting! Please help me.  I have never done that before.

I think I am finally getting to the point, at least this week, where I will pretty much take whatever they give me , if it will just make me feel better.  I few weeks ago, I had a week of no pain, swelling, nothing, and I actually thought I was cured   and then wham! back to square one!  Maybe I am making up for the week when I felt great!

When it rains it pours!  Oh and I read your post about your house situation, I hope it is getting better and I am sure your sweetie, will step up to the plate and move with you.  So sorry you are living with your mom, that must make you nutty!!! Hugs to you!

Bonny,

I know I am heading for the MTX, and I am really scared to take it, but gosh I have to do something!  The other night, hurting so much to have to need urgent care is ridiculous! I expected to much from the plaquenil and if I would have taken the MTX along with it, maybe I wouldn't be in this mess.  I really need to be a bit more proactive and not be so afraid of the meds, at this point in the game, I am just going to have to take them    I have taken vicodin and it doesn't help me at all, the only thing that helps are steroids so far, I think it would take a lot of pains meds to help with mine, for whatever reason.

Thanks for writing!

oy! it's a steroid fiasco! *to make ya laugh* i'm currently on so much steroids it's a shame i'm not in women's competetive sports!  i'd be winning gold medals! hah

aaah hang in there...things will start to clam down. how did you do today? 

and thank you so much for the kind words & thoughts. my man is a gem & i was probably "roid raging" and got emotional.so yeah, it's me getting upset about the move (if & when it happens).  yikes yeah...i love my ma'...she does help out immensely (i can not physically keep up a house & everything that goes with it) right now. but yeah you're right...it drives me nutty a lot of the time!

hey be careful coming off of the steroids.  the dose pack i actually always liked better...but i can't use em', i need the  BIG GUNS

regular Prednisone helps me, but i go through a really rough withdrawal no matter how slow i taper. puking, aches, fevers, seizures (i do have a seizure disorder so no one doesn't get freaked out & think it causes seizures)

what you just told Bonny?...i have the same thing with narcotic pain meds.  i was on almost all of em' (can't use nsaids or cox2s) but the opioids really don't help with the RA joint pain...and in truth, they really do nothing for inflammation pain...so it makes sense.

however, along with using  Prednisone ...(me too, steroids the only thing that actually helps) i use Dilaudid for pain.  it's supposed to be one of the strongest pain meds.  it helps a little (helps better via shots & IV though).

Arthrotec i loved...but i had to stop that too. that helped a lot, maybe you could suggest that to your rheummy.  it takes an army to control the joint pain i get & it took a long while to come across a semi-decent combo of meds for pain.

peace/love

erin

Funny you mentioned the roid raging! you know I think I am starting to get all emotional on the medrol dose pack...sheesh, my husband is starting to think I'm nuts Gosh this is a fiasco for sure girl!   But really what can you do? but just ride it out?

I am down to 3 medrols today, so I am starting to dread the taper off of them, but I am starting to see why you can't take them all the time, like you can the regular prednisone.  Speaking of the prednisone...I had to laugh at the Big Guns   At this point, my face is starting to look red and rosy like Santa, who needs blush? I can only imagine what I will look like after the pred!

It does sound like you have a really sweet guy! Bless  your heart, that does make a difference, when you have someone truly in your corner, willing to stand by you...even when you look like a puffer fish and hurt like mad!

I think a lot of it is just the emotional roller coaster of the whole RA and the steroids, sometimes it make our emotions just crazy and we are not always rational. 

Big hugs, and hang in there!!

Harley Diva,

What type of surgeries did you have?  I had several surgeries, but I don't think they were related to the RA.  Mine were gynecological in nature, such as an abdominal myomectomy/cystectomy, and a laperotomy.  After my last surgery though, I got really sick where I swelled up something awful in my face and hands, I had a fever of a 103, and the pain was terrible.  I had to go to the ER, where eventually they gave me a shot of antihistimine and a pain shot.  They had to cut my wedding ring off even.  They never could tell me what was wrong with me. 

I'm sorry to hear you had to have surgeries that you did not need.  I will ask my doctor about the test you mentioned in your post.  Thank you so much