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aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 8/19/2008 1:26 PM (GMT -7)   
Hey everyone! I hope you guys are doing good! I am getting very frusterated and need some advice. I am taking Day Pro, Imuran, and Ultram! I am still in a extreme amount of pain. For example, at night when I try to pull up my sheets on the bed to cover my arms, I can't do that. I couldnt raise my arms to put deoderant on and another thing I noticed today is it is very difficult and painful to walk up or down stairs. I called my doctor and he wants to see my ASAP (we made an apt for Fri) and put me on prednisone. There is also noticable swelling in my joints! Is there anything anyone can suggest to me to help with the pain. I was diagnosed with lupus 10 months ago and so far the only problem I have been having is with my body hurting everywhere. Thank you for your time!
Aimsgirl16
Lupus, Raynaud's Syndrome
Day Pro, Tramadol, and Azathioprine
 

 
 


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 8/19/2008 1:50 PM (GMT -7)   
I also forgot that I am exhausted most of the time! When I wake up in the mornings I struggle to get up even after 9 hours of sleep. On Saturday if I let myself I will sleep to 3 pm. I guess I am starting to get overwelmed at work because I am so tired and cant seem to get everything done I should!
Aimsgirl16
Lupus, Raynaud's Syndrome
Day Pro, Tramadol, and Azathioprine
 

 
 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/19/2008 2:23 PM (GMT -7)   

Hi ya Aims, I'm sorry you are having so much pain. I'm not sure I understood. Did you say the dr. just put you on predisone like this week? If that's the case it should start helping considerably real soon. I've had it help me within a few hours. It's understandable that you would be tired. Pain has a tendency to wipe people out. Add to that lupus causes chronic fatique.

You might try soaking in a tub. or alternate between ice and heat every 15min. with a 15 min. pause between the two. Perhaps you rheumy can give you a shot of cordisone. That helped me a lot. I also started wearing blouses that buttoned up the front so I didn't have to put my hands over my head. I don't know if you have a hand held shower head or not but it helps too. that way you aren't having to put your hands over your head you can spray your hair and body instead. I have a shower chair which helps me when I'm really tired and sore.

Well anyway that's just a couple of things. I hope your doctor can help you friday. Try to get some rest and let us know how it goes.

hugs

carol



 
Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 

Post Edited (okie) : 8/19/2008 3:59:22 PM (GMT-6)


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 8/19/2008 2:34 PM (GMT -7)   
Aimsgirl, The prednisone should help your pain and your fatigue pretty quckly. When I was in a prolonged flare and my pain would get unbearable, my rheumy would bump me up ten or 20 mg and I'd notice the difference in a few hours. I hope you have the same experience.

I'm curious. Why are you not taking plaquenil. Unless you've had a bad experience with it, or have already discussed it with your rheumy, I would ask him about it on Friday. I don't know anyone with lupus that's on prednisone who isn't taking plaquenil. Does anyone out there disagree?

Good luck on Friday. I hope you can hang on that long. Carol is right. Ice and heat can help a lot. I found that soaking in a real hot tub gives me some relief. It's so frustrating, isn't it.

Let us know how the prednisone goes.

Pat
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 8/19/2008 5:21 PM (GMT -7)   
(((( Aimsgirl )))) It sounds like your lupus is not under control, however it does take time to get on the right combo of meds. I agree with Pat, I wonder why you aren't on Plaquenil. It helped me A LOT with my fatigue and joint pain but can take weeks to kick in. I didn't think it was doing much until my rheumy wanted to see if I could do without it..... bad mistake.

I am also on Methotrexate which took a couple of months to kick in but helped a lot with my lower back and hip pain. I am also on NSAIDS and Imuran. Imuran is more for my GI issues and I still have joint pain, mainly in my hands and feet.

I hope you get some relief soon, let us know what the doc says on Friday,
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Darvocet (as needed) and magic mouthwash (for mouth sores)


mygrljes
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 8/19/2008 6:28 PM (GMT -7)   

Patty,

My rheumy didn't start me on plaquenil until 5 years after I was diagnosed. I agree, the combo of plaq. and pred. together makes a huge difference.


dix: lupus sle Jan. '99, hypo-thyroid Mar. '06
rx: pred. 5mg/day, plaquenil 200mg/day, levothyroxine .112mg/day, premarin .45mg/day, methotrexate 7.5mg/week, folic acid 1mg/day
 
 
Also a wife and mother of three.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 8/19/2008 6:30 PM (GMT -7)   
(((((( Aimsgirl )))))))))

Big problems with the large muscle groups in the upper arm and upper legs would make me wonder about myositis. It can overlap with Lupus and can make those muscles waste away and be very weak.

I think your doctor will probably do some preliminary bloodwork to check on that and some other things. You might just be in a bad flare . . . . I hope you don't have other issues to deal with now.

Sorry you are feeling so poorly. Keep us posted.

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


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 8/19/2008 7:23 PM (GMT -7)   
I also immediately thought of plaq-it is the one thing that has made a noticable difference in my fatigue.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 8/19/2008 9:01 PM (GMT -7)   
Aims,
 
The muscle problems you describe are often part of polymyositis or dermatomyositis.  It is common for lupers to have an overlapping connective tissue disease with one of them.  You should note all your symptoms and see you rheumy as soon as possible.  Myositis is treatable but needs to be diagnosed and then aggressively treated.
 
Are you having swallowing problems?
 
NSaids will help with your joint pain but prednisone is the most powerful anti inflammatory agent and will help by reducing the swelling as well as "tranquilizing" your immune system.  Imuran is good to control your immune system but it takes many months to reach full effectiveness and it sounds like you need prednisone for aggressive treatment.  What dose did your doctor put you on?
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


mygrljes
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 8/20/2008 5:19 AM (GMT -7)   
Trouble swallowing and muscle weakness could also mean thyroid involvement. Before I was dianosed with hypothyroid, my rheumy thought it might be myositis. It can be very scary when you're feeling that way, but both can be treated. Once you get on the right combination of meds you'll be amazed at how well you feel. If you feel like sleeping, then sleep, it's your bodys way of trying to recover from all that lupus is doing to it. I'm sure everyone here will agree that sleep is something we treasure, and naps are a regular part of our day.
dix: lupus sle Jan. '99, hypo-thyroid Mar. '06
rx: pred. 5mg/day, plaquenil 200mg/day, levothyroxine .112mg/day, premarin .45mg/day, methotrexate 7.5mg/week, folic acid 1mg/day
 
 
Also a wife and mother of three.


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 8/20/2008 6:13 AM (GMT -7)   
Hey everyone! Thank you so much for your advice. I did get a long hot bath and that helped a little bit for about an hour! I believe the prednisone is starting to kick in a little bit! I was able to pull up my bed sheets with just a little bit of pain!
 

I don't know if I should have said this in the first post. I have been like this for about 3 months. about 3 months ago is when the doc put me on Imuran. I was still in extreme pain about a month and half later so i called and he put me on a 12 day supply of Prednisone. That helped and for about 20 days or so...I was in very little or no pain. Then the pain started comming back and now it is to where it was before the prednisone the first time. I guess I am starting to get scared. I wonder all the time what if I will be in this pain all the time. What if my rhumy can't find something to stop the pain from getting worse.

To answer everyones questions about plaquenil...I was on it for about 2 months! I tried different doses and I was running furiously to the bathroom about 10 times a day. I was starting to get dehydrated so the doc took me off of that and put me on tramadol(Ultram) and Imuran! To answer Bill's question my rhumey put me on 10mg of prednisone. And to answer the questions about swallowing...I have not had any problems with that. It is just pain all over my body. Some days it even hurts to touch my skin. I wish I could take naps daily but I work from 8:30-5:45 and I have a 45 min drive to and from work so by the time I get home I eat and then go to bed!
 
 Today I will make a list of everything I have been having trouble with and give it to the doctor, I have a hard time remembering things when I am supposed to remember them. haha. Actually, I was reading somewhere and it said the some people with Lupus have memory problems. Does anyone else have memory problems, or was what I reading wrong? Thanks again


Aimsgirl16
Lupus, Raynaud's Syndrome
Day Pro, Tramadol, and Azathioprine
 

 
 

Post Edited (aimsgirl16) : 8/20/2008 7:21:30 AM (GMT-6)


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 8/20/2008 7:02 AM (GMT -7)   
Lupus can cause cognitive problems and I have had short term memory and concentration problems.  It is referred to as "lupus fog" and several other names.
 
Here is a link to an on line chat on the subject that LFA put on last year that might shed some light on it:
 
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 8/20/2008 7:06 AM (GMT -7)   
((((((((Aims))))))))) Welcome aboard! You read right. Lupus can definitley cause some concentration and memory problems. Make sure you mention this to your doc if you notice it becoming worse. I hope you get your pain under control. God Bless You, Judy
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