meds, sun, or prednisone taper?

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hippimom2
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Date Joined Jul 2005
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   Posted 6/12/2007 6:54 AM (GMT -7)   
Do some of the rest of you have a hard time figuring out what is causing your symptoms?  Yesterday and today I have increased joint pain and fatigue.  It doesn't feel like a flare (yet) and I don't feel horrible, but it's worse than I had been feeling.
 
The problem is that I don't know if adding amitriptyline has increased my fatigue.  It definitely helps me sleep very well, but I wake up feeling groggy and drugged.  I have read that this should get better as my body adjusts to the med.  My brain also feels a little weird on it (like there's a cushion around it), but I'm hoping that will pass too.
 
I am also tapering my prednisone.  Sunday I went from 10mg to 7.5mg, so I may be feeling a bit worse as my body tries to adjust to the lower pred dose.
 
I've also kind of been exposed to the sun the past few days even though I really covered up and protected myself.  I took my kids to the local swimming pool 2 days ago and stayed in the shade the whole time and wore sunscreen and went to my son's ballgame last night but stayed covered up the whole time too, but I still get reactions on my skin, so the sun must be getting through some how.
 
I guess there is really no way to tell exactly what is causing my symptoms.  I think I am going to ride things out for the week and see how my body adjusts to both the amitriptyline and the prednisone taper.  My rheumy wants me to eventually get to 5mg of prednisone, but I think I'll stay at 7.5mg for a while.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 6/12/2007 7:52 AM (GMT -7)   
Hippi, do have psychic abilities, or were you evesdropping on my thoughts this morning? It's absolutely erie how our thoughts and symptoms parallel one another. Before I got out of bed this morning I was thinking about meds and symptoms. In order to get off so many meds, I stopped taking three pills every morning, one of which is cymbalta for depression. I immediately had a boost of energy which was rudely taken away from me when my cellcept was cut in half. Now I find myself getting teary-eyed again. What to do, Hippi? What to do?

You are smart to put off your prednisone taper till you feel better. If the adverse symptoms you're getting from the amitriptyline don't decrease by the end of the week, what's your game plan? Can the dosage be cut? I don't know anything about it, but I wonder if the increased tiredness you're feeling is similar to that I get when taking cymbalta. I'm going to call my pcp's nurse this morning and talk to her about the possibility of taking 30mg rather than the 60 I've been on. In my case, since I'm not running kids around, I think the better option for me is to be tired rather than depressed. But the tiredness makes me depressed. What a nutcase I am!

I've gotten my triglicerides down so I dropped the Tricor, and I've stopped taking Meridia for weight loss because it doesn't appear to help at all plus it's not covered by my insurance & costs a hundred bucks a month. I also stopped my tri-est simply because I ran out and I have to go to a specialty pharmacy to get it, but started having hot flashes again, and besides, I was pretty foolish to stop the estrogen and the cymbalta both at once since they both help my mood. So I'm back on the tri-est. And of course tramadol causes fatigue but without it my pain gets out of hand.

So to finally get to the point, I'm going to talk to the nurse, adjust the cymbalta, wait three weeks to get the results of lab work on kidneys to determine what we're going to to about CellCept, make an appointment with a masseuse, and get in to see my therapist. Am I sick or am I crazy, Hippi? I'm laughing here because I know you'll identify with that one.

I hate what the sun has been doing to you. Do your son's ballgames go on all summer? I don't see how you can possibly taper to 5mg when you're having to be in the sun all summer. I tried to order a couple of things from the site that Nan told us about but the site wasn't working right so I'm going to call in my order. I'm getting a man's white shirt to wear with jeans, and I just hope it breathes a little like cotton, otherwise it's just going to make me sweat more.

Well, I'm off to call the nurse. Have a good day Hippi.

Love,

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 6/12/2007 11:43 AM (GMT -7)   
Remember that when you are outside near the water, there are a LOT of reflected UV rays off the water that will get you -- even if you're in the shade.

But I agree, is it this med, the other med, lupus, or am I crazy????

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Xanax, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
OTC Daily: Multivitamin, Calcium, B-12, C, D; As Needed: Ibuprofen, Tylenol Sinus

Allergies: All Sulfa-based medications; Levofloxacin,  Levaquin

DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 6/12/2007 5:22 PM (GMT -7)   
Thanks Pat and Lynnwood. You are both right that trying to figure it all out and balance it all can make you feel like you are going crazy. Reading Pat's post made me realize how hard it is to reach that delicate balance with meds to find the dose that works the best for each one of us because each person responds just a little differently to the same meds.

After my day today I think my symptoms are a combined result of the amitriptyline and the sun. After I had been up for a few hours and moved around some and then took a nap, a lot of that drugged feeling was gone and I have actually been feeling pretty good most of the day. I think I need to take the amitriptyline a little earlier in the night and also just be patient for my body to adjust to it. It has helped so much with sleep and I think it's helping both my headaches and anxiety. I also wonder if I have had a little fibro pain that I wasn't aware of because the amitriptyline has definitely helped my pain level too and I have read it helps fibro pain.

Lynn, I didn't even think about the reflective sun rays around the water *hippi thumps herself on the head *. Any ideas waht might help with that? I know I'm crazy, but I'm thinking about taking my kids to the pool again tomorrow. Now that I'm not working I just want them to have a really good summer, partly because I have no idea how I'll be doing next summer or any other summer. So, I want to seize the moment without being too reckless about my health.

Overall, I'm happy that I'm doing pretty well again and am hoping that as my body adjusts to my new med I'll feel less groggy and drugged in the morning.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

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PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 6/12/2007 8:44 PM (GMT -7)   
Hippi,

How great that your amitriplyne seems to be working! If it does, some extra fatigue in the morning may well be a small sacrifice to pay. I have a great deal of trouble getting around in the morning, probably for a combination of reasons. RA causes extreme stiffness for an hour or so in the morning, my pain in general is the worse when I wake up, then the neurontin and lunesta I take at night leave a hangover, and then just feeling bad in general makes it hard to get going. On my worst days I'll run a big tub of hot water and soak in a bubble bath till I feel better. It helps my joints and my mood as well. I might stay in there for an hour. By the time I get out and cool off I usually feel better. Some days, though, I don't have the energy to crawl into the bathtub.

I bow down in awe of those of you who have to get up and go to work in the morning. I don't even make doctor's appointments until afternoon.

But how great that you're getting relief from fibro pain you didn't know you had. Amazing how many things can be wrong that you're not even aware of. Your idea of taking the amitriptyline earlier sounds like a great one. I'm supposed to take my Lunesta and Neurontin before bedtime but I take them both three hours before bedtime.

I hate the problem you have with the sun. If there's a lifeguard just keep your back to your kids. They'd love that wouldn't they. But seriously I don't know what you're could do that you're not doing already.

Well, keep up the good work. I'm going to see my therapist tomorrow and have scheduled a massage!!! yeah!! for Thursday morning after my bath. I can hardly wait. She has clients with lupus and RA so we'll see how she does.

Get a good night's sleep and wake up refreshed as a baby!

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 6/12/2007 9:07 PM (GMT -7)   
My only thoughts about the water reflecting sun are the same as usual - shade, sunscreen, protective clothing, hats, sunglasses, then repeat! They say about 2 oz of sunscreen per hour.

Maybe a tent?

Sorry, no real useful ideas come to mind.
Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Xanax, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
OTC Daily: Multivitamin, Calcium, B-12, C, D; As Needed: Ibuprofen, Tylenol Sinus

Allergies: All Sulfa-based medications; Levofloxacin,  Levaquin

DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


dbab
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Date Joined Jan 2004
Total Posts : 4151
   Posted 6/13/2007 6:31 AM (GMT -7)   
Hi hippi,

I hope you are feeling better today. :-)
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements


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hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 6/13/2007 6:45 AM (GMT -7)   
Thanks everyone. I tried taking my nightime meds earlier last night (about 3 hrs before bed) and didn't sleep nearly as well, so I'll go back to taking them about an hour before I go to bed and just deal with the morning fog and grog. It's amazing how much of this stuff is trial and error. We're still planning to go to the pool later today and I will try to be even more careful than I have been.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



ericsmom
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Date Joined Jan 2007
Total Posts : 1042
   Posted 6/13/2007 2:05 PM (GMT -7)   
Hi Hippi
 
Is using an umbrella optional at the park or pool? LOL hippi, dont thump yourself in the head too hard, or those lupus headaches will be back tongue
And about your tapering the pred, didnt I read here somewhere, that the slower you lower, the better the chances for success?  I been doing 5 and 10 mg everyother day for weeks now, and so far..knock on wood, all seems well.  Maybe next week I will try 2.5 and 10mg everyother day?
 
Anyway..glad you are starting to feel better hon
 
Diane
A/Fib, diagnosed Aug, 1997, R/A diagnosed in Sept. 1998, Pericarditis and Lupus in Dec, 2003, Diabetes, diagnosed march, 2004
 
Bisoprolol 5 mg, Propafenone 150mg twice daily.  coumidin 4 mg, plaquenil 500mg, prednisone 10 mg sometimes more, metformin 2000 mg, diamacron, wellbutrin,fenofibrate
 
 
 
Courage is fear that has said it's prayers
I have lost a life - not my own.
But it would have been easier to have lost my own life
than to have lost the life,I loved more than my own
 


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 6/13/2007 3:16 PM (GMT -7)   
Hi Hippi,

I've been thinking about you today and am anxious to know how things went at the pool and whether or not the sun and the heat get you down again.

I agree, this trial and error business can get tiresome, but in the long run it's probably our best bet. I'm having another good day today and even got out and had lunch with my son. Breakfast with my daughter yesterday and lunch with my son today -- I must be getting better! For a change I feel like getting out of the house.

Your kids are lucky to have such a great mom. Let us know how your day went.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 6/13/2007 4:49 PM (GMT -7)   
I actually had a pretty good day, so much that my friend who was with me even noticed and she thought I seemed less stiff and sore too. I used tons of protection at the pool. Lots of sunscreen and a cover up. Then I sat under their big umbrellas and I took one of my own umbrellas and used it while sitting under the big umbrella. My face is pretty red and I'm tired, but I'm really doing okay, considering I was outside for so long.

I'm like Carol and am really afraid to say how good I actually feel right now. I am praying that the addition of this new med in the right dose was maybe the missing piece for me. The prednisone was a huge help and now the amitriptyline is helping me get restorative sleep and is helping to keep my headaches at bay, so I'm nervously crossing my fingers that this is the beginning of a long stretch of good days for me.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



ericsmom
Veteran Member


Date Joined Jan 2007
Total Posts : 1042
   Posted 6/13/2007 8:00 PM (GMT -7)   
me too Hippi, I really hope this new drug is what you needed, and now that summer is upon us, you will be able to enjoy it more with your kids :-)
A/Fib, diagnosed Aug, 1997, R/A diagnosed in Sept. 1998, Pericarditis and Lupus in Dec, 2003, Diabetes, diagnosed march, 2004
 
Bisoprolol 5 mg, Propafenone 150mg twice daily.  coumidin 4 mg, plaquenil 500mg, prednisone 10 mg sometimes more, metformin 2000 mg, diamacron, wellbutrin,fenofibrate
 
 
 
Courage is fear that has said it's prayers
I have lost a life - not my own.
But it would have been easier to have lost my own life
than to have lost the life,I loved more than my own
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/13/2007 9:20 PM (GMT -7)   
Hippi, three cheers for another good day! I hope you sleep better tonight than you did last night.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/15/2007 9:28 AM (GMT -7)   
Hi hippie,
Glad you are feeling better. I was going to remind you of the medicine's side effect of greater sun sensitivity. With imipramine, I had a few side effects but they went away as I adjusted to the medication. Maybe that's all that happened. I'm glad you are doing well on it and are feeling good and able to get out and do the things you like to do!
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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