Have now moved on to the steroids

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momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 3/29/2007 7:14 AM (GMT -7)   
I know some of you, especially Erin (if you are around?) have taken your fair share of prednisone.  Last week, at my checkup, I was having an awful flare, and since I had been off of the plaq and the sulfasalazine didn't work, I had been med free.  The pain was so awful, I couldn't sit/stand, and he asked me if I wanted to do the mtx and I am terrified of that! and he suggested the prednisone and I am so afraid of that too. So he gave me the Medrol dose pack and I took this knowing that it would only last a few days and then I would be back where I started plus the rebound is always unpleasant.
 
So Tuesday night, I am back to square one, and my husband takes me to urgent care, and when we get there, it is closed sad and I have one pain pill left and I just take that and wait to call my rheumy on weds morning.  The nurse is a bit nice, but looking at my chart, she asks me if I have decided about the mtx??? because it says in my chart I am undecided?? she says she will talk the doctor and call me back.  However, they close at noon, and no call, so I ended up going back to urgent care, and ended up with yet another Medrol pack.  So I am now on the medrol roller coaster, but I was so desperate to stop hurting!
 
My doctors office did call, and will call in a presription for prednisone, and I am to call in a week with a progress report.  I am so scared to take it.  I have asthma, and I have taken it, but not to the extent they are prescribing it for, and the side affects, and trying to get off of it that I have heard of. 
 
Now, I am back on the plaquenil, and worried about the prednisone, my hands are starting to look a bit puffy from the medrol, but that usually  happens.  What a mess!!  But I don't hurt, and I can function, what a trade off eh?  I have never hurt so much as I have this past week, I was tempted to go to the emergency room, and my husband would have taken me there. This is really getting scary sad
 
To top it off, I don't even have an RA diagnosis, it is unexplained inflammation poly, and that makes it that much worse!  At least the urgent care doctor didn't think I was insane!

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/29/2007 7:50 AM (GMT -7)   
hi mom,
(((((((( 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.
 
:-)  
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. 


Shaleygirl
Regular Member


Date Joined Jan 2007
Total Posts : 30
   Posted 3/29/2007 8:49 AM (GMT -7)   
Momto3 I know that this is a very frustrating time for you as I am sero-negative and it took a while for a firm RA Dx. My reduced swelling response to MTX helped my Dr's with the diagnosis.

Though I do understand your being a bit afraid of all these meds I am on MTX and Enbrel, soon to change to MTX injectable, I also had to learn to put my fear aside in order to stop joint erosion.

Due to a lot of OA my Dr won't let me use Pred. but she does Rx pain meds for me and they have their side effects as well. This is a tough road but we can have a life with the help of the meds.

Take care.
~Bonny~
Cheyenne,  WY
 
Meds: Enbrel/ MTX/ FA/ Klonopin/ Flexeril/ Lyrica/ Hydrocodone
 
RA Dx Sept05/ FMS Dx Jul05/ OA Dx Apr00
 
"Fear not for I am with thee"


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 3/30/2007 7:56 AM (GMT -7)   
tongue   i Erin,
 
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 eyes 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 tongue   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 smurf   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!!! smurf 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 sad    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!

Shaleygirl
Regular Member


Date Joined Jan 2007
Total Posts : 30
   Posted 3/30/2007 6:08 PM (GMT -7)   
Momto3 I sure hope that the meds help you. The added Enbrel is helping little by little but I still need the pain meds and my Dr said that I may always.
~Bonny~
Cheyenne,  WY
 
Meds: Enbrel/ MTX/ FA/ Klonopin/ Flexeril/ Lyrica/ Hydrocodone
 
RA Dx Sept05/ FMS Dx Jul05/ OA Dx Apr00
 
"Fear not for I am with thee"


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/30/2007 8:17 PM (GMT -7)   
cool  hey now mom
oy! it's a steroid fiasco! tongue *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! tongue 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! tongue
 
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  skull BIG GUNS skull
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  devil Prednisone devil ...(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
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. 


Harley Diva
Regular Member


Date Joined Oct 2006
Total Posts : 160
   Posted 3/30/2007 11:06 PM (GMT -7)   
Hi there sorry you are feeling bad......I think the wordt part of this illness was the roller coaster to get diagnosed. I had four surgeries and it was all RA. I didn't need any of them. I am also sero negative. The difinative test is the anti-CCP (anti cyclic citrullinated peptide test) It will show RA in sero negative people. I hope they get you on an effective treatment plan soon......Thoughts and prayers
Harley Diva
 
....RA, HPT,  drugs: MTX Enbrel, bp meds,folic acid


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 3/31/2007 1:31 PM (GMT -7)   
Hey 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 smurf Gosh this is a fiasco for sure girl! eyes   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 :-)

SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 3/31/2007 2:57 PM (GMT -7)   
I was on different types of steroids for 2 years when I was 19.By the time I was 25 I had Osteosrthitis.The Dr said it was the streoids that caused it.Now I have Osteoporosis & take medication for it.........
SnowyLynne

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