Pred question--what to do?

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/4/2009 8:08 PM (GMT -7)   
Hi--
Well the injections really wore down today and my back and neck went into spasms and hurt pretty bad, I feel pretty stiff.  I'm tired and a little depressed as I don't have the energy or mental energy I had.  I had started to suddenly crash about a week ago or so and went on pred pills to slow down and taper off.  I am down to a half a pill a day and it is like nothing. But I did come down better.
 
The question is, should I try to stay off for a while and suffer just to see if my body eventually will bounce back, but take the chance of  flaing up in a backlash to stopping the pred, or do I just go to the rheumie or neuro and go back on, either through injection or pills? Do we end up being on it pretty much all the time, is that normal?  The pain is going to be pretty bad, from the preview so far.  And worse, I have company coming in a few weeks.  I don't know what to do.  Last time I went without,I didn't bounce back and got so lethargic I could barely get myself into the doc to get the injections I needed. When I get likethat I don't even want to move.  But I don't wantto hurt myself with the steroids, but feel I am already sort of dependent on them due to my endocrine problems.
 
Any advice would help. How do I figure this out? 
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
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Date Joined Feb 2003
Total Posts : 5514
   Posted 10/4/2009 9:02 PM (GMT -7)   
Hi Marji, if it were me, I'd go back on the prednisone.  If you have endocrine issues you really need to suppliment your adrenals.  Some of us (like me) need to be on prednisone pretty much for the rest of our lives.  Maybe you fall into that category too. cry  I think when it's a medication that is helping us to get through the pain,fatigue and organ involvement, we need to just face the fact that this is something we need to take. I think you'll be hurting yourself far worse if you don't get back on the pred.
 
I hope this helps Marji.  ((((hugs)))) 
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
35 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, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 10/4/2009 9:13 PM (GMT -7)   
Hi Marji,

I hate prednisone too, but I agree with Ginny. It may be a necessary evil right now. I hope you don't have to be on it forever (and I hope I don't have to be on it much longer either), but it does have it's place in treatment of many autoimmune conditions. It literally saved my life by bringing my autoimmune hepatitis under control.

Take care,
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/4/2009 9:19 PM (GMT -7)   
Thanks Ginny and JoAnn--
Everyone tells me I am myold self on it and even look slimmer,maybe because I'm not all hunched over in pain, maybe just because I can pee on it. Sounds like I need to go in to the rheumie, he can sort it out for me. I'd rather have him give me an IM in the sacroiliac than another nerve injection anyway. Really, even pills would be great. Splitting a 5mg or even 10 mg a day really helps alot.

Thanks so much. Just so hard to know what to do, especially when the old noggin isn't working to 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


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 10/4/2009 9:25 PM (GMT -7)   
I think a visit to the dr explaining all you've observed about how your body reacts is in order. Unless he's already approved you for changing your prednisone dosage around, it can be dangerous to change it.

Those drs do sometimes know a couple of things!
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/4/2009 9:37 PM (GMT -7)   
Thanks Lynnwood. You're right. If I go and ask for it, I will very likely get it, right now I am so bad probably a shot. I just didn't know if I should try to tough it out in a lot of pain and hope it goes away, or just stay on the stuff, in some shape or form, pill or injection. He gives me pills to taper down with if the shots wear off and I crash, and I taper down as directed, but maybe I should try to talk to him again about a maintenance dose instead of the injections.

Thanks! Yeah he is usually pretty good, but the injections freak me out because they are so strong and up, then down.
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 : 7018
   Posted 10/4/2009 10:57 PM (GMT -7)   
Finding the right maintenance dose seems much healthier to me than messing around with the levels all the time.

I have to say, this is maybe the first time I've heard of a dr switching back & forth from pills to injections. But if your inflammation can be proven to reside in one stop near the injection site, maybe it makes sense.

You'll have to talk to him & get more information - I look forward to hearing why he's doing things the way he is. (I hope there is a good reason that makes sense!)
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


Raven1954
Regular Member


Date Joined Sep 2009
Total Posts : 31
   Posted 10/5/2009 4:29 AM (GMT -7)   
I take a maintence dose daily. Used to try the taper, with occasional injections.I would just make myself and family miserable. My rheumie got got of medical school same year I graduated nursing school,so we have literally gone thru this together. He trusts my judgment with the prednisone, and has given me parameters for increasing and taping to wear I feel good,and can function. I know it's a double edged sword,nobody wants to take it,but it does bring quality to our lives. Read everything you can find about it on reputable sites and books,try the more natural approaches if you want,to give your body back at least some of what the prednisone takes,this has worked well for me. Now with the cerebritis I look to him more and more,for what I should and shouldn't do.I am way out of my league with that. He hates that I have this,but I think he kinda likes my actually needing his expertise,and I am so grateful for it.Go to your rheumy armed with the facts and what your heart tells you is right for your body,don't live with more pain then you have to,or the emotional ups and downs.Write down what you want and why,and take it in with you,and be sure to go over everything important to you,and that you get answers.Pain control is an important part of our therapy,steroids offer a large amount. Also I don't hesitate to ask for the pain pills,and antispasmodics I need,and take them when I need them(these of course are personal decisions) After 26 years of this,I want quality where I can find it. God Bless,Namaste Raven1954
sle since 1986, cerebritis,pre diabetic, peripheral neuropathy,mvp cataracts,degenerative disc dx. liver failure due to tylenol for to long,Meds: prednisone,inderal. synthroid,tegretol,nasonex,phenergan,dalmane,valium for fibromyl. dilaudid q8 for pain,cytoxin iv every 6 months,asa daily,albuteral inhaler,frequent antibiotics. Learning to live a differant life now, joining this has been a big step.Husband and son wonderful,but can't step inside,you guys are there.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/5/2009 6:44 PM (GMT -7)   
Thanks Lynnwood andRAven. I think he started me out with injections because I had been untreated for so long and my markers were so high, and he felt they would last a while for me, but they didn't last as long as we hoped and I didn't seem to come down smoothly. So I asked to try pills, and I preferred them because we could control them. I guess I was in bad shape in the beginning, also my endocrine system was really a mess and I was really sluggish, so it may have played a role in his decision.

Now, he injects just joints, although if I'm having an allergic reaction or something, he'll do an injection instead of pills to make it work faster.

Maybe the injections are easier on the liver--usually I have more trouble with pills than injections, but the pred doesn't seem to be a troublesome pill for me to take.

He said some patients with milder disease can get a shot and go for months with little or no problems. I guess thats why he tries the shots. And also to get me under control in the beginning.

My mom's doc leaves her on steroids pretty much all the time. I guess each doc is different. I don't mind going off them if I feel okay, but when everything falls apart, and you know how that is I'm sure, its just lousy and the shots wore off like "bam" all at once this time.
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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