Posted 11/8/2007 9:20 AM (GMT -6)
Hi Hippi,

Glad Lynwood caught your post last night. YES things do seem worse at night!!

When You mentioned that some of the rash looks like scratches . . . I thought of poison ivy/oak. It will run along scratches you couldn't even see before the rash hits. But that would be itchy.

How is the rash today???

Found a big long stick to join in the circle of chanters!!! When we are finished with our chant, I'm passing out marshmallows so we can all have s'mores!!

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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

Posted 11/8/2007 9:45 PM (GMT -6)
              I got my stick and I'm ready to chant!! 
 Hippi, I hope this gets better for you soon. We never know what to expect from one minute to the next, do we? I hope you have gotten some relief by now...((Hugs)). Take care and update us when you can. You are in my thoughts and prayers.
                                                                 Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:Methotrexate,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folic acid,prednisone,lunesta,Chantrix,Tramadol,Nitro.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Posted 11/8/2007 10:19 PM (GMT -6)
Hi hippi,
The way you described it almost reminded me of a drug rash, like the bad kind, I had one once that peeled all over my torso and had started out being red and raised. I didn't get it on my hands though. Anyway, it sounds like its going away so that is good. I'm glad you are feeling better and hope Josh is doing better too.
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

Posted 11/9/2007 10:34 AM (GMT -6)
This whole thing is really weird. THe rash seems to fade some during the day, but comes out in full force at night when I am at my most tired. It's on both hands and then some on my arms and my arms just get very blotchy and very red. At least I'm not nervous about it anymore - I'm chalking it up to some weird thing my body is doing and some other weird way that lupus is affecting me. Marji, I've also had the bad drug reaction rash and luckily this one is different. I was just worried that maybe the rash meant I was going to get really sick or something.

By the way, Josh got his electric blanket and loves it and I think it really helps with the pain. I climbed in bed with him last night to say goodnight and the blanket felt so good on my sore joints and muscles - I might just have to get one for myself too :)
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; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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


Posted 11/9/2007 11:08 AM (GMT -6)
I confess...even in 90+ degree heat, I often turn the A/C down to 65 at night just so I can use the electric blanket and the heating pad. Part of it helps the joints, and probably the other part is just a soothing factor...but we flaring lupies certain deserve some soothing, right?

Hope the rash is leaving now -- that is how my sun rash works -- fades in daytime, comes out at night --

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Posted 11/9/2007 2:37 PM (GMT -6)
Hi Hippi,
  I'm glad the electric blanket is helping Josh. I love mine too!! I just put in on my bed 2 days ago and it has helped my night pain so much!
  I hope your rash clears up soon. Keep us updated and take care.
                                                             Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:Methotrexate,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folic acid,prednisone,lunesta,Chantrix,Tramadol,Nitro.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Posted 11/10/2007 10:43 AM (GMT -6)
YEAH!!! Something that helps w/o adding a new rx!!! YEAH!!!!

YES!! Go and get one for yourself!! Make sure it is a dual control so your hubby can set his own temp.

I might actually try that mattress pad one . . . problem for me is . . . I'm always too hot!! LOL . . . we have our heat set on 64 and I have the vent closed in my bedroom. I go to bed and its freezing in there, and after about 20 minutes, I'm throwing off the blankets. Waaaa!!! I want to use the electric blanket too!!

SO glad its helping Josh a bit Hippi!!

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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

Posted 11/10/2007 1:54 PM (GMT -6)
If you are already having problems w/getting hot and throwing off the covers, I would recommend getting the electric blanket (that you can throw off in your sleep) rather than the mattress!!!

And everyone should note that the instructions/warnings on both say you should not sleep with them on -- the issue of whether the electricity will mess with your bodies electrolytes has not yet been conclusively solved.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Posted 11/10/2007 4:57 PM (GMT -6)
My hubby brought home an electric blanket for us yesterday (dual control) and I love it. I'm someone who gets really hot really easily too, but the warmth from the electric blanket is so soothing. I just don't keep it on too long.

Lynnwood, thanks for the info about not leaving it on all night. I admit I didn't read that, but my gut just told me that none of us should have it on all night. We turn Josh's on when he goes to bed and then turn it off when we go up to bed and then I sneak in and turn his on again in the morning so he has it on for a little bit before he wakes up to go to school and it is helping some with the morning stiffness. I don't think I could leave mine on all night anyway - I'd be too hot. Ours has a pre-heat function which makes it really toasty when you first get in.

My rash is getting better and I'm actually feeling pretty good and so far my cold isn't too bad. I'm so tempted to try to start tapering my prednisone again, but maybe I should wait until I feel better for a longer period of time. I'd really like to get down to a maintanence dose of 5mg if possible, even though I know it will take a while to get there.
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; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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


Posted 11/10/2007 5:27 PM (GMT -6)
I think my rhuemy would want the prednisone to stay at the higher lever till things are good fro at least 2-4 months before trying to taper....just a suggestion & warning against going too fast. I'm not sure if it's good for us to change it around very often anyway, since the 8mg point is so near the normal adrenal gland supply....????

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Posted 11/10/2007 9:03 PM (GMT -6)
Lynnwood, I was interested in your comment about not sleeping with the elcetric blanket or mattress pad. I sleep all night with mine on - what is the story on this? I can't imagine sleeping without it and I have lots of trouble when I'm at a hotel for a conference or on a trip. I have been known to turn up the air conditioning in the summer, too, just to sleep with my heated mattress pad.

I am almost afraid to ask - but what terrible thing might I be causing for myself?
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 

Posted 11/11/2007 1:11 AM (GMT -6)
I don't know, I haven't read the studies -- just remember scanning them a while back -- because I personally don't think it's a problem and have been sleeping all night under one for years. (Unless it messed up my system long ago and caused lupus? Or maybe it's the reason my personal thermostat is always so different from everyone else's?)

I just know there is an ongoing controversy about it (same principle as living under the high-powered electrical power lines) and that both the heated mattress pads and blankets are required to have warnings on them. I didn't think we should recommend them to our newcomers without noting the warning.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Posted 11/11/2007 2:50 PM (GMT -6)

  Wow...I didn't know you weren't suppose to sleep with an electric blanket on all night. Interesting! I think I will still take the chance...... :-) .

                                                            Babs


 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:Methotrexate,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folic acid,prednisone,lunesta,Chantrix,Tramadol,Nitro.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Posted 11/11/2007 11:30 PM (GMT -6)
Thanks, Lynnwood, good point to note the possible risks for our newcomers. I just started using my heated mattress pad in the last year or so and I have had my dignosis way before that so I wouldn't necessarily worry about it maybe causing the lupus. I have noticed how much faster I go to sleep and how much better rested I feel since using the heated pad. I also love how fast my joints, especially my ankles, stop hurting when I go to bed at night. Like Babs, I think I'll take the risk, too! And, like you, I have noticed my own personal thermostat is a bit wacky! Hmmmm.
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 

Posted 11/12/2007 2:14 PM (GMT -6)
Hippi,

I don't think I've been on since you talked about your wasp sting and it sounds like it's wrecked havoc on your poor body. I'm glad your rash is improving. I couldn't agree more with Lynnwood about waiting for 2 - 4 months before you start tapering again. I've been tapering about 1mg at a time and usually wait at least a couple of months before tapering again, and never until I've felt real good, and I mean unusually good, for a few weeks. I hate the side effects of prednisone but I hate the lupus more and it's worth it to me to take tiny baby steps while I try to get down to 5mg.

I'm happy to hear that the blanket is helping Josh. How is he doing otherwise?

Miss talking to you all.

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

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