feeling better, but....

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Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/9/2008 9:59 AM (GMT -7)   
Well I am down to 15mg prednisone after a month of tapering and feeling much much better. however, I am wondering if it is normal, or a normal side effect of the pred, to feel shaky in my muscles like I have been working out hard? I lift a glass of water and it shakes so much I spill it. walking I feel the shakiness in my thighs. Also I have been dropping things suddenly out of my hands. I was eating breakfast this morning and dropped my spoon half way to my mouth. it wasn't heavy, just my hands let go with out my telling them to. I do not feel gittery just the muscle shakiness.

any ideas?
43 yr old mother of 6 grandmother of 1 going on 2!
dx 2006 - autoimmune issues, arthritis, 01/2008 - myelofibrosis. as of 08/08 testing continues signs point to Lupus. (family history - mother RA/Lupus).

symptoms - malar rash, mouth soars (in and out), joint pain, extreme fatigue, migraines, heart pounding on light activity.

rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, supplements - b6, b12, flaxseed oil, c.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/9/2008 2:35 PM (GMT -7)   
Hi Mawmaw,

The only way to really know if it is the taper, is to try going back up a notch. If the shaking stops, then taper more slowly.

Usually the pred taper issues get worse the lower your dose goes . . . so IF it is ok with your doctor, taper slowly so you don't shock your adrenal glands.

The adrenals make around 7 mg cortisol each day. When we take pred for extended periods, the adrenals 'can' stop producing the cortisol. If the taper is slow enough, it gives the adrenals a chance to kick in again.

Some docs try and taper way to fast. Each of us seems to have a best way to taper . . . but usually the problems come at the lower end of the taper.

I hope this helps.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/9/2008 5:10 PM (GMT -7)   
okay, that makes sense that the lower tapers get more tricky. I was expecting it to be the other way around. But all in all, I feel so much better than I have in 5 months. I'll just keep tapering slowly. they gave me 180 5mg pills so I could go at my own pace.

Thanks Rosie for the reply.
43 yr old mother of 6 grandmother of 1 going on 2!
dx 2006 - autoimmune issues, arthritis, 01/2008 - myelofibrosis. as of 08/08 testing continues signs point to Lupus. (family history - mother RA/Lupus).

symptoms - malar rash, mouth soars (in and out), joint pain, extreme fatigue, migraines, heart pounding on light activity.

rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, supplements - b6, b12, flaxseed oil, c.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/10/2008 8:04 PM (GMT -7)   
You are SO welcome. I'm glad you have enough pills to take your time.

Some other members have done an up and down taper. Like 15 mg today. 10 mg tomorrow. 15 mg. next day. 10 mg following day. . . . then you do 15, 10, 10, 15, 10, 10, . . . etc. until your sure you won't have problems and then you can drop to 10 every day. You might try splitting pills too. . . so you can go down a half pill at a time.

Post and let us know how your taper goes.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/10/2008 8:12 PM (GMT -7)   
do they make prednisone that is coated? blah yuck splat!
43 yr old mother of 6 grandmother of 1 going on 2!
dx 2006 - autoimmune issues, arthritis, 01/2008 - myelofibrosis. as of 08/08 testing continues signs point to Lupus. (family history - mother RA/Lupus).

symptoms - malar rash, mouth soars (in and out), joint pain, extreme fatigue, migraines, heart pounding on light activity.

rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, supplements - b6, b12, flaxseed oil, c.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/10/2008 8:16 PM (GMT -7)   
Ha haaa!! I think they do make a lower dose!

But really . . . I think that's why some members do the up and down taper.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 9/11/2008 1:04 PM (GMT -7)   
There is a 1-mg dose....

I find if I stick it in the middle of a spoon full of flavored yogurt (and don't chew) I don't taste a thing.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 9/14/2008 6:33 AM (GMT -7)   

Hi! Spinning,

I am now on a maintenance dose of 5 mg. of pred. and will stay on this as it is the only way I can still work. I am a nursing instructor, and if I don't take pred. I can't walk due to extreme muscle weakness, yes, like the Boston Marathon was just run level of weak.... and I fall. All due to my SLE, which was first suspected to be MS, and then, double whammy, my neuro specialist wonders that I could have a very rare mixed patho of MS/SLE. My type of lupus is CNS, and without a daily dose, was flaring every 3 months, falling 3 times a week, and going from 40/30/20/10 mg tapers every other month. This dose is the minimum that gets me by, and I am always yucky, but some days less malaised than others. High dose prednisone makes me feel healthy, but at what cost? My bone density went down and I doubled in size......... I guess it's all about balance. I drop things alot and have carpel tunnel because of nerve inflammation, not scar tissue. The nerves swell when I flare, not from repetitive strain injury, but the end result is the same. I can't hold on tight, and I drop stuff. I have a wrist brace that helps, too. They are $15 at Walmart and worth it.

sue

ps. due you spin? I mean yarn tongue p.p.s. i am almost a gramma, too, 6 more weeks, Avery.


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/14/2008 8:02 AM (GMT -7)   
Yes suetoo I spin wool. I haven't been spinning much lately but my wheel is "calling" to me :) Thanks for the advice. I have been having numbness in my arms and hands when ever I use them too much - only the outer side and the little finger to my middle finger. is this similar to what you experience?
43 yr old mother of 6 grandmother of 1 going on 2!
dx 2006 - autoimmune issues, arthritis, 01/2008 - myelofibrosis. as of 08/08 testing continues signs point to Lupus. (family history - mother RA/Lupus).

symptoms - malar rash, mouth soars (in and out), joint pain, extreme fatigue, migraines, heart pounding on light activity.

rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, supplements - b6, b12, flaxseed oil, c.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 9/16/2008 10:22 AM (GMT -7)   
Hi! Mawmaw,
My whole hand goes numb and tingly, legs and feet, too. I take Neurontin and that helped immensely. I have always wanted to learn to spin and have fallen in love with alpaca's and alpaca wool. I love to knit and crochet, and quilt. When I have the energy... when I have the time.... arghhhh!
sue
God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


sharky456
Regular Member


Date Joined Sep 2008
Total Posts : 30
   Posted 9/16/2008 1:57 PM (GMT -7)   
Mawmaw-
I'm sorry that you are experiencing this as well... Whenever I get below a specific dose of pred (depends on what other immune suppressants I am on at the time) I get unbelievably tired and then I get what I have termed puppet limbs- where my arms and legs feel so weak, shakey, and heavy that I wish I had pinnochio strings so someone could do the work of walking/standing for me. Recently it was bad enough that I pretty much have to sit or lay all of the time...

The others have an excellent suggestion of going up a bit to where you feel stable and waiting it out there for a bit. When it comes right down to it, it is better to have chipmunk cheeks a little longer than to be weak and shakey all of the time and a zombie. I have to keep telling myself that...

Best of luck
Take care
Sharky :-)

Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/17/2008 3:50 PM (GMT -7)   
Thanks sharky, yes I am not worried about my puffy face. "luckily" I have a wide jaw bone so it works well with that tongue I go to my internist on the 29th. Although I saw a Rheumy nurse practitioner a few years ago (she was so nasty to me I wouldn't go back) My internist has not referred me to a new rheumy. I have a good recommendation for one now and I'm going to have her send me. I'm very frustrated esp. with the bone marrow issues I'm having. Who knows which symptoms are from which issue!

Anyway, I really appreciate everyone here. You have no Idea how much you have taught me and helped me set my mind at ease.

Marie (spinningmawmaw)
43 yr old mother of 6 grandmother of 1 going on 2!
dx 2006 - autoimmune issues, arthritis, 01/2008 - myelofibrosis. as of 08/08 testing continues signs point to Lupus. (family history - mother RA/Lupus).

symptoms - malar rash, mouth soars (in and out), joint pain, extreme fatigue, migraines, heart pounding on light activity.

rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, supplements - b6, b12, flaxseed oil, c.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/20/2008 6:44 PM (GMT -7)   
Well I took my internist's advice and bumped up my pred back to 20 mg. I felt terrible for almost 2 weeks after going down to 15. this is day 2 on 20 mgs and the shaking in my fingers has almost stopped. I have less numbness & I fill more normal walking too. my gait was off. so I guess all that was autoimmune.

I am wondering, am I supposed to get to a point on the pred where I can just tolerate the symptoms or should I expect to be symptom free? if the disease is active, it will be doing damage - yes??? but then again, so will the pred I guess.

just frustrated
43 yr old mother of 6 grandmother of 1 going on 2!
dx 2006 - autoimmune issues, arthritis, 01/2008 - myelofibrosis. as of 08/08 testing continues signs point to Lupus. (family history - mother RA/Lupus).

symptoms - malar rash, mouth soars (in and out), joint pain, extreme fatigue, migraines, heart pounding on light activity.

rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, supplements - b6, b12, flaxseed oil, c.

"All we have to decide, is what to do with the time we are given" ~ Gandalf

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