What Do You Do When You Can't Tolerate Oral Steroids Anymore?

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erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 6/30/2006 12:39 PM (GMT -7)   
Why don't I have the answer to this?  I should know, but I don't.
Prednisone, solumedrol and such are the only medications that help get me out of severe RA joint pain & flares; but recently oral steroids cause way too much nausea, vomiting and very bad headaches.  I could deal with the rapid heartbeat & no sleep...but the pukey days n' nights are my breaking point.
So I went for a steroid injection Wednesday.  Totally bypasses the blowing chunks factor.
Does anyone administer steroids IM themselves? I mean, am I suppose to go to the Dr. every other day for injections or what? 
And if you have the same effects from oral steroids & still take them, what do you do for headaches, N&V?  Does anything work?
 
Getting to the doctors office is a big problem, if I had access to a car and was well enough to drive I wouldn't be complainig as much I guess.
But what do you do when you're kinda "stuck" in a predicament?
 
Think I'll read this verbatem to my PCP over the phone...think I stated my case pretty clearly.
 
Thanks for listening.
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; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 6/30/2006 3:48 PM (GMT -7)   

Hi Erin.  Sorry to hear you're in such a predicament right now.  I remember with my mother, who was on and off of prednisone for years, that it was awfully hard on her stomach.  I don't think she ever graduated to steroid injection, though.  I really don't have any advice for you, but I wanted you to know that I can understand what a terrible situation you're in right now.  That's a good idea to call your PCP and have him/her problem solve with you.  With respect to the car situation, can you take a bus or are you rurally located?  Communities normally offer free or low cost rides to the disabled.  Not that I'm implying that you're permanently disabled or anything.  But even temporarily, one of those services may help you get to and from the doctor's office.  A local church in your community may also offer this type of service.  You could always inquire.

I hope you feel better.

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 6/30/2006 5:33 PM (GMT -7)   

eyes  oooh, you might be on to something there with the Church thang. eyes that is a fantastic idea.  i never thought of that! 

senior citizens have a little jitney that comes around & picks them up daily to take them to doctor & hospital visits.

i've got mass transit galore here in my city.  although it's VERY $$$ mad 7 dollars for a taxi.  so round trip with tip? 20 bucks.  my butt went bankrupt a few months ago trying to get to the rheummy 4 miles away!  mad 60 dollars, it's absurd.

safe to say i'm disabled.  can't physically get to the bus stop, fecth one, get there & get back home.  right now, if i make it to the coner pharmacy wait on line & walk home THAT'S IT.

it's hard to get friends/family/people to help out.  family is scarce, so my boyfriend & his sister are really the only ones i have to help me get places.

i'm figuring that perhaps having Crohns (and a major part of the high inflammation area is in my small intestines & stomach) is making the steroid ordeal more difficult.  NSAIDs make me bleed so i can only imagine what corticosteroids are doing.

so i'll be pursuing getting 1 more injection tomorrow.  i'de like to go away for the week & be halfway decent.  my honey's on vacation all week & being as bad as i've been, i haven't seen him for 2 weeks. sad getting lonely.  sad  oy!  you're right, problem solving with my PCP is the way to go...he's on my side & does go above and beyond. when he took that oath...HE REALLY MEANT IT!

thanks always "el"  :-)   


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; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


RandomDave
Regular Member


Date Joined May 2006
Total Posts : 164
   Posted 6/30/2006 6:02 PM (GMT -7)   
Hey erin:

What a chitty predicament to be in. I really have no idea what to tell you except that where I am, we can arrange for technicians to come to our homes and draw blood for blood samples. We also have nurses that go around to homes for various things. I don't know if they do steroid injections or not, but I don't see why they wouldn't. My mom used one when she had her appendix out and got severely infected, and I know another guy who used one cause he was diabetic and just couldn't give himself insulin injections (pansy). They're called the Victorian Order of Nurses or somesuch. I don't know for a fact, but surely there must be something similar in the states? You can set it all up, and then if you do feel well enough to go on your own to get the shot, you can cancel for the day, so it's not like completely losing your independence or anything. Usually it's just a matter of asking your doctor and their office sets up everything. I really don't know how the whole insurance thing there works, but I imagine some policies would cover it and some wouldn't. Something to look into maybe.

For any meds I take that make me sick, the only solution I've found is to take it right before bed with a few gravol and try to fall asleep as fast as possible. I don't know what steroid nausea is like, but most Nsaids made me really nauseous and I had a hard time when I first started plaquenil as well. Anywho, you can totally do this chiquita! You have conquered worse. GRRRR!
-SLE, RA & PA....it's all about the acronyms!

-Current meds: Plaquenil, Sulfasalazine, and a little NSAID du jour for flavouring. Mmmmm NSAIDs.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 6/30/2006 6:27 PM (GMT -7)   
Thanks Dave. The Visiting Nurse Services...that's what we have. I actually would like to specialize in that sort of nursing as well, particularly Hospice Nursing.
I'll have to ask my MD. I have medicaid, so it is possible I'm sure to have this covered. It's government issued insurance, not private insurance, so if a doc says you need something...you get it. No big authorizations and rigamarole to go through. (It's been the easiest part of being sick actually...No COPAY either!)
Wow, actually have some good ammuniton for my conversation with the MD tomorrow.
You're the best. Thanks for the tips.
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; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


RandomDave
Regular Member


Date Joined May 2006
Total Posts : 164
   Posted 7/1/2006 12:03 AM (GMT -7)   
Hmmm, someday I would like to specialize in nurses, but for now I'll just be a general practitioner. It takes a special kind of person to do Hospice Nursing, so For Those about to Rock, I Salute You! Can you, or someone explain a couple things to me?

1) Medicaid seems to best, a lot of posts I've read mention that. So why doesn't everyone get that? Like some people say they can't afford a doctor because they have no insurance. Can they get medicaid?

2) What's a copay?

Thanks.
-SLE, RA & PA....it's all about the acronyms!

-Current meds: Plaquenil, Sulfasalazine, and a little NSAID du jour for flavouring. Mmmmm NSAIDs.


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 7/1/2006 8:59 AM (GMT -7)   

Hey Dave, perhaps I can answer at least part of your question.  You have to qualify for medicaid; not everyone does.  I think you have to be under a certain income, and you can't have reliable employment with a steady income.   My BIL lost his job a couple of years ago, and my sister was able to get medicaid to cover medical expenses for her children for a couple of months.  Once my BIL got another job, the medicaid was taken away.  It's state supported medical insurance, paid for through taxes.  Most of us have to either pay out of pocket (if you're self-employed) or we get insurance through our jobs.

Elcamino 


Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/1/2006 11:47 AM (GMT -7)   

I see a bright & fullfilling future specializing in nurses for you Dave! lol.

I've already did a few years volunteering with Hospice. And you're correct, it's not for every RN.  When I was in school I took to the Hospice patients.  Easier than others in my class for some reason.  I suppose because I can connect better & I know how to meet their needs without them saying too much.  Takes a lot of intuition.  And being bed ridden at times in my life, in pain, and very sick...I know what it's like to be on that side of the bed.  Having spent a lot of times admitted to the hospital, I know it's the last place you want to be.  And the sweetest thing is when a patient wants to actually take you back to the nursing home with them.  I miss working & the hospital and everything.

Our CoPay is the amount of money we chuck over @ a Dr's appt.  When a person has insurance a visit is covered but out of our pocket has to come say $20 dollars.  All insurances have different copays.  It's confusing!  Premiums, deductables, what's covered what's not covered...DENIALS! ugh.   And some insurances, oy, give you a real hard time if you have a "pre-existing" condition!   For example...I had to see a specialist for Lymes Disease. SHE DIDN'T TAKE ANY INSURANCE beside Oxford I think.  So what can ya do?  $350 a visit cash!

Medicaid...well, I had to stop working.  So that means I was going to be left with A) no income   and  B) no health insurance.  So I called social security & I filled out the paperwork to qualify for Medicaid.  Basically...am very ill and very BROKE so fortunately the USA is good in that aspect. 

By the way...I guess all MDs are partying.  No one is working today @ the doctors office!   

Ciao.


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; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


Aldo
Regular Member


Date Joined Jan 2006
Total Posts : 289
   Posted 7/1/2006 12:23 PM (GMT -7)   
Erin! I am experiencing ALL of your adverse affects from oral steroids. I have had ulcers in the past, so I can never have any NSAIDS at all, except aspirins prior to a heart procedure/cath. I figure a week of stomach/intestinal pain is worth not getting a blood clot, lol. I am also taking a powerful antibiotic. I have never really took a lot of oral steroids. The best help I ever got was 6-7 years ago when I had my first flare with RA, or was told that at the time (don't think I believed it then) was an injection of cortisone into the upper hip. It was gone in a couple of days it seemed. I could hardly walk from the car to the doctor's office.

I am ending a dose of dextramethasone (sp?) in a 5 or 6 days and only 2 more, twice each day, then down to 1, twice/day. A friend just told me that they used it to treat head injuries in animals. Yikes...

My wife just picked up a different pain med. It is ultrocet HCT + Tylenol. It seems to be helping. I haven't slept in 3 days, unless you count some kind of semi-unconscious sleep that is not restful and last for about 2 hours.

I sure hope that you get relief. I just wanted to give you a big I CAN RELATE note :)

Rj

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/1/2006 12:36 PM (GMT -7)   
Ah geez...that's just as good as when my GI told me he wanted to put me on Imuran becuase his dog did great on it! LOL.
At the time I didn't think it...but I would want only the best for my cat, so if it's good enough for his dog? Why the heck not! He was absolutely correct by the way.
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; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


missie1227
Veteran Member


Date Joined Nov 2005
Total Posts : 751
   Posted 7/2/2006 4:15 PM (GMT -7)   
erin- the doctors will only give you iv steriods once in  awhile as they can cause AVN inyour hips and that is something you do not want to have, hip necrosis is not good.
 
you may get 1 shot probably every few months my thinking is
9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. on SSDI after 2.5 yr wait. sezuires, CTS, IBS ( C & D). norco, xanax, predisone shots. i dont know what else is wrong with me and neither does anyone else!!!


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 7/4/2006 3:31 PM (GMT -7)   
Hey Erin - did you look into what el had suggested? How you doin'?
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

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