Coming off dinky dosepack, want an extension. should I ask?

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/29/2008 8:17 PM (GMT -7)   
I have been in bliss and finally calm for the first time in the last two months on this medrol dosepack (*lame*) and I want to go on a longer taper. I'm not even off yet and my face is so so so red and spidery, my liver area is bloated back and I"m stiffening up again. I should have waited to see my rheumyto get a proper taper, but its such a long wait. But the psychosis like symptoms I was having on the isoniazid is gone and my liver less swollen and I think I MUST have hashie enceph. now from the isoniazid since it went away and also helped inflammationfrom the liver damage frmo the isoniazid. I'm such a whiner, but this backlash is fast and I'm not even done with the pack.
 
They started me at 24mg and I could have easily had double that. These short tapers just kill me. Would you talk to the doc? I don't want moe spidering, my face is the worst ever right now. And Iam getting all wound up with worry and anxiety and memory problems again. I was really going nuts without it.  It was just the thing. BTW Thankyou healingwell family. You were spot on.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 11/29/2008 8:36 PM (GMT -7)   
I think it's a good idea to tell your doctor your symptoms and how they are coming back even before you get to the end of the treatment.

I try not to tell my doctors what drugs I should be on - I like to give them room to use their medical education - hopefully they have better ideas than I do about what will be best for me long term.

That said, if they seem to be giving you lots of short tapers relatively close together, I'd certainly not be shy about pointing out the pattern and asking if there were other options that might work better overall. If they seem to be thinking too hard, that's when I'd throw in a couple of options that "sound like they might work to me" -- like a medium dosage longer term or something like that.

Of course, we all have different relationships with different doctors, so maybe you'd want to be more upfront about asking for what you want. I do think the rheumy would be the right doctor to talk to about this, I'm not clear on who prescribed the Medrol.

Glad you are feeling a bit better,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/30/2008 10:23 AM (GMT -7)   
Hey Marji,
 
I would definitely ask about an extension. If it's making you feel better go for it!  Anything to rid you of symptoms and pain.  I agree with Lynnwood on everything she said in her post.  I'd definitely bring this up with your rheumy.
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/30/2008 12:27 PM (GMT -7)   
Thanks, I'm going through so much now, found out my son is having tardative dyskinesia from some med they gave him after only a week and a half and he also has epilepsy and so instead of taking him off the medicine causing the involuntary jerking which can and usually becomes permanent, they put him on elavil. I have to gethim out of the hospital tomorrow. He has no insurance, and he just keeps telling me "don't say anything or they will keep me longer and put me on more stuff". So this stress has just shot me to a new high, and the steroids have been the only thing to calm me down. I'm a mess. I will call the rheumy and doc tomorrow.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/30/2008 5:34 PM (GMT -7)   
Oh Marji,
 
You are having quite a time.  Staying on that dose pack sounds like it's going to be important.  I hope your son does well on the Elavil (Amitriptline).  I take it too.  Works well for many different issues.
 
We're here for you Marji blush
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 12/1/2008 9:02 PM (GMT -7)   
Yes, I am. I'm better today. My son got out, still messed up mentally, needs counselling. Hope the meds kick in soon. He got the staples out of his head and his medicine that was stolen. I decided to wait until the fourth when I see my rheumie since today was better and its only a few days. I don't like to bother him, he is so  booked up and so good. I don't want to lose him. Besides, I can tough out a few days.

Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 12/2/2008 11:06 AM (GMT -7)   
(((((Marj)))) Bless your heart! I'm can't believe the incredible amount of stress some people deal with along wth their own health issues! I'm praying for you and your son! God bless you, Judy

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 12/3/2008 11:57 PM (GMT -7)   
Thanks, I'm freaking out again, hopefully will get steroids again. My son is already trying to go back out with his buddies. I am ready to throw in the towel. I need good advice sometime. To tired now to think. My son won't give up until he's a total mess. He just can't learn, and thinks he's knows it all. He's just dumb about this stuff. The zyprexa and elavil don't seem to being doing much for him. He is really driving me nuts at times. Thanks for all the help. Rheumie an steroids I pray, will beg. I need them so so bad. Hopefully all will go well.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

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