Author Topic: prednisone ~  (Read 3636 times)

star723

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prednisone ~
« on: September 09, 2013, 07:08:23 PM »
I seen the doctor last week~ she mentioned prednisone for the first time.  I have had sjogrens for over 10+ year now.  I don't want to take anything if I can handle it by changing diet or lifestyle.  Well I am at the point now I have changed everything.  I am waiting on the bloodwork to see what she says about it. 

So my questions are ~ what does it help with?  does it help more than the side effects hurt?  what are the side effects?  I know that everyone is different and handles meds different.  I have not been able to take much that I don't have worse problems with.

 Since going dairy free and taking Zlyflmend, I really don't have a lot of joint pain.  DRYNESS on the other hand is bad. Brain fog, fatigue are the other problems.
thanks for your input~Debbie ;D

Velcro

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Re: prednisone ~
« Reply #1 on: September 10, 2013, 07:28:45 AM »
Did she say if she was thinking for flares or daily?  I have a standing prescription for a short burst flare.  Meaning, I take 60 mg a day for 3 days, then drop 10 mg a day until I'm off of it.  My PCP did have me taking 5 mg daily for a maintenance dose to keep the flares down, but after doing that for over 2 years, I came off of it.  I still do the bursts when needed.  It does knock my flare down and makes it shorter lived.

Sleepy In Seattle

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Re: prednisone ~
« Reply #2 on: September 10, 2013, 09:26:15 AM »
Have you tried going gluten-free? That made a big difference for me with the fatigue and aches.

How about Plaquenil? That's a commonly-used drug that works well for lots of people...it takes 4-6 months to build up in your system and start working, though. Most people have some difficulty digesting it at first, but side effects tend to subside after a few weeks as you get used to it.

Methotrexate also helps a lot, but I have Lupus with Sjogren's secondary to it - I don't know if they use Methotrexate with Primary Sjs. But it did help a lot with fatigue and brain fog. Takes a while to get through side effects, but after 2 months or so I adjusted and really have almost no side effects now.

Prednisone works wonderfully well for me, but it has horrible long-term side effects - it can dissolve your bones, cause diabetes/heart disease, increase infections and pneumonia, etc. As Velcro said, you can use short bursts to handle flares, but you don't want to use it a lot. I am on 4mg/day right now in addition to my other medications and supposedly anything under 5mg/day has few side effects, but I'd like to get off it if I can. It's scary stuff.

Trying a short course of Pred can be very informative, though - sometimes just knowing how you respond to it can tell your doc a lot about how the disease is affecting your body.

Some people feel GREAT on prednisone (I am one of those), and some people feel HORRIBLE on it, have nasty side effects, and cannot take it at all. The only way to know is to try.

It's a really powerful drug, though, and it's REALLY IMPORTANT that you follow doctor's instructions on it. If you're taking more than 10mg/day and you stop taking it suddenly, you can end up in the hospital - you have to come off it SLOWLY so your body doesn't go into shock.

If you do well on it, it can be great for knocking the disease back every now and then.
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

eye2dry

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Re: prednisone ~
« Reply #3 on: September 10, 2013, 06:16:11 PM »
hi.

when I was first diagnosed with sjogrens and little later RA, I was given large doses of prednisone to bring my

symptoms under control while waiting on the plaquenil to take effect. after awhile he added methotrexate b/c

the pain and fatigue was not well controlled with plaquenil alone.


he said that he did not want his pts controlling their sjogrens/RA with prednisone....d/t side effects of long term use.

which is/could be increase blood sugar, bone thinning, cataracts,increase chance of infections, etc.......

prednisone is mainly used to decrease inflammation.

I have a script for possible flares and I may need it/ but he said if I need it daily then it was time to move on

and add or change my meds b/c the sjogrens/RA is "breaking through" on plaquenil alone.


that's just my story, others hear may have drs. with other ideas on it.

take care.

eye2dry
medications: synthroid- Cymbalta- plaquenil- lots of supplements

***Lord help me to be the person my dog thinks I am***

aussie mum

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Re: prednisone ~
« Reply #4 on: September 11, 2013, 12:56:29 AM »
Firstly, I should say that I have not been diagnosed with SJS,  so my experience may be different.

My rheumy has just had me on a short course of prednisone to try to bring my crp down. I was not taking a large dose, just 10mg for 5 days then 5mg for 5 days. I was amazed how good the 10mg made me feel. My joint pain was a lot less and I found doing my every day activities was so much easier.  :)

Since reducing my dose the aches have increased, so it will be interesting to see what the blood tests reveal and what my rheumy makes of it all.

Shame there are so many side effects, prednisone is the only medicine I have taken that made a noticeable difference quickly.
Daughter - SJS, Lupus, Underactive Thyroid, Wolff Parkinson White Syndrome & Insulin Resistance.

Me - Ankylosing Spondylitis, Total Thyroidectomy, Endometriosis, Adenomyosis, High Blood Pressure, Hiatus Hernia, Dry Eyes & Mouth, Stomach Issues, Enbrel, Thyroxine, Atacand, Pariet, Krill Oil, Vit D

Alyson Wissinger

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Re: prednisone ~
« Reply #5 on: September 11, 2013, 09:33:24 AM »
I took large doses of Presnison in my teens and twenties for my Autoimmune Neutropenia so I wasn't keen on trying it for my current Rheumatologicak issues. But I finally did take a burst and taper dose and it really did help.

eija

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Re: prednisone ~
« Reply #6 on: September 11, 2013, 11:29:11 AM »
My first rheumy gave me a small dose of Prednisone to "see if it helps" my migraines. Well, it didn't. But it took away all my joint pain. Didn't help the fatigue or the dryness. Even if the dose was small, tapering off of it made the pain come back worse for a while, despite Oxiklorin/Plaquenil.

My second rheumy said that he doesn't think Prednisone should be used for Sjögren's very quickly. His words: "I think it should be saved until neurological symptoms appear."

I'm hoping I don't need it anymore. Not keen on the possible side effects :(

Female, 52, in Finland
Sjögren's, fibromyalgia, Hashimoto, depression, migraines, pressure urticaria, mild Raynaud's, MCS...
Cymbalta, Tyroxin, Oftagel drops

star723

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Re: prednisone ~
« Reply #7 on: September 13, 2013, 07:28:08 PM »
thanks~ still waiting for the doctor to call with bloodwork~ that was 7 days ago.  I know it takes 5-7 days for some of the test to come back. So hopefully the first of  the week I will get some answers.  I have read on here about Plaquenil, that was another drug she brought up.  I guess when she calls I will have to ask her more about them.

I always seem to have bad side effects with whatever I take~  :(


Chris

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Re: prednisone ~
« Reply #8 on: September 13, 2013, 07:58:43 PM »
The prednisone burst dosage made feel like a teenager again!  I have been on low dosages for the past 6 mos and I'm down to 2.5.  I don't think I will ever take it again once I wean off...the lower dosage did not help much and the pain is worse while weaning off.   I am on plaquenil and methotrexate and they keep the symptoms bearable Except when I am having a flare. Good luck!
47 year old mom of two. Sjogrens, Hashimotos,small fiber neuropathy, neurogenic atrophy(myocitis)
Armour, methotrexate, plaquenil, folic acid,
Vit D3',Claritin, ,Ivig, Rituxin

grammad97

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Re: prednisone ~
« Reply #9 on: September 13, 2013, 09:36:01 PM »
Prednisone really helps get through flares. I don't have to take my pain pills at all when on it. For short term bursts to kick out a flare I think its great.
Primary sjogrens, UCTD; osteoarthritis;osteopenia; HBP ;fibromyalgia;RX-plaquenil, butrans 20mcg patch ;flexaril;hydrocodone5/325;restasis, omega3, vit D, super B complex;s ;gluten free;lisinopril;moderate hearing loss

Kitkat7

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Re: prednisone ~
« Reply #10 on: February 24, 2014, 01:03:27 PM »
Firstly, I should say that I have not been diagnosed with SJS,  so my experience may be different.

My rheumy has just had me on a short course of prednisone to try to bring my crp down. I was not taking a large dose, just 10mg for 5 days then 5mg for 5 days. I was amazed how good the 10mg made me feel. My joint pain was a lot less and I found doing my every day activities was so much easier.  :)

Since reducing my dose the aches have increased, so it will be interesting to see what the blood tests reveal and what my rheumy makes of it all.

Shame there are so many side effects, prednisone is the only medicine I have taken that made a noticeable difference quickly.