I put myself back on steroids(am I nuts???)

[ktfabian]

Hi all -

I hate to drop in to complain during tho holidays, but I'm really reaching my breaking point.

As many of you have probably read, I've been in a nasty flare since surgery in October.  Because my surgery date had to be moved from Sept. to Oct., I missed my three month check up with my rheumy who is about 3 hours away.  His assistant has been trying to treat me by phone since, and my family doctor has done what she can when I can get through and actually get a response from her office.

But here I am, the day after a nice, quiet Christmas, in so much pain and so frustrated by doctors and medication and life in general, that I finally decided (because I can't reach any of my doctors) to go back on the medrol that has provided so much relief in the past.  This isn't a totally independent decision - twice in the last 2-1/2 months since the flare started, my family doctor has prescribed  medrol dose packs which have provided short-lived relief.

I reached my limit today when seeing a orthopedic doctor following 3 days in the hospital last week for a knee that blew up out of the blue and hurt like...well, I'm sure you can all imagine.  Someone from the ortho's office came in to my hospital room last week and took out 4-5 of those tubes used for blood work of fluid from my knee.  I also had an MRI, and was sent home without much explanation from my family doctor last Friday when we were getting hit by a major snow storm.  The ortho I saw today started the visit by blasting me for canceling two visits this past fall and when I explained that I canceled because of surgery on my morphine pump- he was totally surprised that I had one (I've had it 3 years longer than I've "had" him) and almost had the air of "how DARE I have such a device!"

He continued by asking how long the last injection he had done on "this" knee had lasted, and never seemed to catch the fact that the knee he injected this past fall was the OTHER knee, which was injured in a fall in my kitchen.  When I talked about the fluid taken from my knee by one of his associates last week, he stormed out of the exam room demanding an explanation of my case from the rest of the office.

He finally came back and was a much nicer person suddenly, saying something about confused notes,  but continued to refer to the problem knee as the wrong knee.  He said my MRI done last week just showed more of the wear and tear of the one done this past fall (of the other knee) and felt that an injection would help - the only thing I agreed with, but I still don't know what caused this blow-up.  He sent his PA and an intern in to do the injection, and I went over everything with them, made sure they wrote down that the doctor had continued to refer to the wrong knee, got my injection and left in tears.  I'm supposed to go back in a month, but I haven't decided what to do. His is one of the top ortho groups in the area and I'm tired of telling my story to new doctors.

I hurt everywhere.  My hands and my feet are the worst.  I've tried to reach the rheumatologist and get something done (besides more percocet, which isn't working) and my phone practically knows how to dial the family doctor by itself. (I know I'm running really long here, but I'd like to mention that I switched to this doctor last year after my family doctor of 16 years had become part of a residency program, and several of the residents who were left in charge of my care really botched a case of MRSA.  She told me she would be able to offer more direct care than the residency program could, and those who were on call would be much more familiar with my case. HAH!)

So, after getting "sorry we're closed for the holidays" messages everywhere (and refusing to be referred to the ER again) and talking all the issues over with my husband, I started back on 4mg of medrol.  I probably need more (I was at 16mg for a flare 2 years ago and finally weaned down and off a month before my surgery.), but I feel nervous enough about self-medicating that I wanted to start low.  I plan to call both doctors on Monday to let them know what I've done and see how they feel about this. 

I'm also overdue for a second infusion of Rituxan, but haven't been able to get it due to bronchitis and now my son being home on a 10 day leave before deploying to Iraq. (the infusions are done 3 hours away, too)

So, if you made it all the way through this, what would you do?  I don't like being on steroids and I didn't make my decision lightly, but I feel as though I have no where else to turn.  I also don't like self-medicating.  I'm on so many pills for my SJs and chronic back pain and so many other health issues like everyone else here, but I feel like I've been backed up against a wall. Did I do the right thing?

What would you do?
Tracy

[Scottietottie]

Hi Tracy 

If they've helped in the past - and you're familiar with them - I can see them helping more than harming. You need a break from the pain. You must be really stressed too with your son going away and stress and SjS are a bad mix.

It's not long till Monday now and you'll be able to contact your docs then. Get any relief you can. You've been going through a lot.

((((( T ))))))

Take care - Scottie 

[Tinker]

Tracy,
I'm so sorry you are feeling so poorly and have had to deal with inadequate explanations and what appears to be the "worst" the medical profession has to offer.

Of course, the dr. will advise you to go to the ER.  I know that is the last place you want to go....been there and done that.  If you are calling your dr. Mon in the am, it probably won't make much difference since the dose is sooo low.

Maybe you need more pain meds and the steroids, too.   

Sending you healing hugs to get you through the rough time.

                                                     Tinker

[lynnmarie219]

Hi Tracy,

No you are not nuts...you are in pain and looking for relief! But I agree with you that you need to notify your doctors first thing Monday morning.....I hope they are able to give you more options for less pain!

Hang in there and please keep us posted on how you are doing...I hope the meds are helping you a little by now and will give you a little relief until Monday!

Hugs to you.....

[Pooh]

Tracy,
I'm so sorry this dang disease picked the holidays to flare up on you.  No, I don't think you did the wrong thing.  Like Scottie said, if you are familiar with this medication and you know how to take it, I see no reason why you shouldn't.

My rheumy has me keep a prescription of Prednisone on hand for just such episodes.  I am to take them for 5 days, then if that doesn't work, I'm to call and come in to see him.  However, it usually works if I catch the flare in the very beginning.

I hope you are feeling better soon.  This disease is no fun when it's flaring or any other time. 

I have you and your son on my prayer list and I will continue to pray for his safe return.  All our men and woman should be brought home as soon as possible.  I think this country has done enough for the rest of the world.  Let's get on with fixing our own country.  Ooops, sorry I don't know how "Fred" and I got up here on this soapbox. 

Take care dear and I hope you feel better real soon.

Hugs, Pooh   

[ktfabian]

Thanks for the support, I so desperately needed it.

It may be too early for the medrol to really be helping, but the pain just doesn't feel quite as "desperate" today, even tho I haven't slept at all since Thursday night.  I think I was just too uncomfortable and too uptight to relax enough to sleep last night - hopefully tonight will be better.

I definitely plan to call both doctors first thing Monday morning, I need their help.  But I've learned that calling after hours just isn't worth the frustration and the usual referral to the ER.  The ER doctors are at a total loss as to what to do with me between my Sjs and my morphine pump. 

Thanks again.  You all have been life savers for me more than once, and I have to tell you how much it means to me.
Tracy

[ktfabian]

Hi everyone,

Sorry to take some time with the follow up.  I have bronchitis again and really don't feel like doing much.

I did see my family doctor today - she had approved of my restarting the medrol earlier this week at 4mg, and today bumped it up to 6mg as my hands and feet are still aching.  I hate getting out of bed in the morning because my feet hurt so much to walk on.

She also gave me a shot of Toradol, which for me can sometimes be a wonder drug.  It was my NSAID of choice until they discovered it did so much damage to some people's stomachs.  I'll also do five days of oral toradol.  She increased my pain medications, too, which I'm sure will help.

My knee is still acting up but the injection did help quite a bit.  I haven't decided yet whether I'll return to the original doctor or not - I have 3 more weeks to decide!

I've also talked to my rheumatologist's assistant.  He's trying hard to get me in before my scheduled April appointment but they're backed up as always.  I have to put off the second round of Rituxan again because of the bronchitis.  Hopefully I'll get it kicked this time and can get that second dose in sometime soon.

I feel good that at least there's a plan in place now for improvement, and that my family doctor is willing to step up until I can see the rheumatologist.

Thanks again for the support.  You all are the greatest!
Tracy

[Katybarstool]

Hi Tracy

I'm glad your family doctor has offered you some relief. You have my sympathy with the bronchitis. It's such a debilitating condition. I hopw you get some relief from the symptoms soon.

Wishing you a happy, healthy 2009.

Kathyx

[Scottietottie]

Hi Tracy 

Well a bout of bronchitis can make you feel really ill without having SjS to contend with!  I'm glad your GP seems to be being so good. That's a real plus.

I hope you feel a lot easier soon. All the best for 2009. I hope it gets better.

Take care - Scottie 

[ktfabian]

Thanks Kathyx and Scottie-

Now all I have to do is survive dropping my son off at Fort Dix tomorrow for his deployment to Iraq.  Yikes!!!  I'm preparing myself for stress and hoping I handle this well.

Wish me luck, Tracy