lupus headaches

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jhmom
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Date Joined Oct 2004
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   Posted 1/24/2009 5:22 PM (GMT -7)   
Does anyone suffer from migraines / lupus headaches? If so, what med works best for you?

I've had a headache for 2 weeks, almost every single day. I talked to my rheumy yesterday and she called me in two rx's, one for Imitrex and another pain med in case the Imitrex doesn't work. smhair I really hope one of these two meds works, just wondering what else was out there that I could try. I can't take advil, etc because I'm on an NSAIDS, Lortab makes me itch and Darvocet didn't help at all! shocked

Any suggestions are welcome - thanks
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 1/24/2009 6:14 PM (GMT -7)   
I usually take migraine meds for both kinds but sometimes I have to go to the hospital and get injections- there they combine 3 meds including benedryl and compazine with an NSAID that you can have no matter what you take and that usually works even better. I have even ended up taking prednisone a few times. Actually I had a low grade headache for a while but when we upped my prednisone it went away.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, now cellcept


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 1/24/2009 6:18 PM (GMT -7)   
Hi Jhmom, I had horrible headaches 3-4 times a week until the doc gave me propanalol. Since then I only get headaches about once every two weeks or so. I do take Lortabs 4-5 times a day for joint pain since all NAIDS make me itch and break out in hives, like you, Darvocet does nothing. I looked up Imitrex, here's the link,
http://www.drugs.com/cdi/imitrex-tablets.html
and there is a warning about Raynauds. Just thought you'd be interested. Best of luck with the new meds, the headaches are awful.

Jennifer

PCP pretty convinced- Lupus , Taking plaquenil,Propranolol,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.   Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 


jhmom
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Date Joined Oct 2004
Total Posts : 2244
   Posted 1/24/2009 7:03 PM (GMT -7)   
Thank you Red and Jennifer, I have read that pred helps with lupus headaches, maybe I will try that next. I usually get headaches a couple of times a month but nothing like I am going through now.

Thank you for the link, I am somewhat familiar with Imitrex as my son took it years ago. My rheumy warned me of the side effect of chest tightening for people with lupus and raynauds, she told me not to worry if it happened, just to relax. I had some nausea and cramping but I can't tell yet if it's helped or not.

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

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 1/24/2009 7:57 PM (GMT -7)   
Hi Stacie,

I feel for you, truly. Nothing is worse than a lupus headache or a migraine. When I get them I try tordol (sp?) and phenigran (because I generally get sick to my stomach as well). If the oral meds don't do the trick, which is quite often the case, I go into my doc's office or the ER, depending on the time of day/week and get injections of both meds.

Imitrex does nothing at all for me either. I know a lot of folks who do their own Imitrex injections and it seems to work well for them though.

I hope you find some relief soon.

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/24/2009 9:37 PM (GMT -7)   
Stacie, Imitrex works for me. If the first one doesn't work, I take a second one an hour later. I'm following doctors orders but that's probably what the insert says as well.

But we know that different meds work for different folks. I do hope you find something that works because I'm sure you in awful pain.

Pat
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, tri-est, imitrex (for rare migraines), cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


Barbara Lee
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Date Joined Sep 2003
Total Posts : 2889
   Posted 1/24/2009 9:50 PM (GMT -7)   
Hi Stacie:

I'm sorry to hear that you're having issues with headaches. I used to get migraines several times per week. My doctor put me on Inderal and Darvocet, we tried Depakote and none of those works for my headaches. Then they gave imitrex and that works for several years for me. Then it became less potent for me and they changed me over to zomig for my headaches, it works wonders for me. The biggest side effect from it is I feel like I've got the flu the next day. My muscles feel sore and I'm wiped out, but it gets rid of the headache withing 1/2 hour.

I wish you well with your medications. I hope the headache goes away, you might want to try placing a warm/hot compress at the base of your head and over your eyes. I always take something for nausea along with the zomig. I'm not sure I've been much help, but I'm praying for you Stacie, hang in there my friend.

Hugs,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/25/2009 8:03 AM (GMT -7)   
Stacie, I know how awful lupus headaches can be. I've thought about asking for a migraine med, but hate to be on another med. An increase in prednisone does help my headaches, but I hate to increase it just for that. For me, hydrochodone helps make my headache bearable, but it sounds like pain meds don't help you a lot. If all else fails, I do what Barb does and lay down in a dark quiet room and place something warm on my head and close my eyes. It usually helps.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; 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



SmurfyShadow
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Date Joined Dec 2008
Total Posts : 2386
   Posted 1/25/2009 11:16 AM (GMT -7)   
Actually, Immatrex will only work if you taake it in time folks. I took so many trips to ER for the dang migraines it isnt funny. But then again, I'm diabetic so I would wait til my blood sugar dropped, then go get the shots if the Immatrex wouldnt work or the Frova or the vicoden. My normal cocktail is 50/60 toradol and phenagrin. I think you might be having a "rebound migraine" too. Thats taking the meds, it dont work. Takes a trip to ER to get it fixed gf. Keep us posted!
 
Smurfy Shadow
 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux
 
Medications: Imuran, Prednisone, Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D


omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 1/25/2009 12:01 PM (GMT -7)   
Immitrex works well on me even if I took it half and hour after my migraine started. My Rhumty in the US has prescribed me Verapmil 120 mg to take daily for the purpose of reducing my migraine. It works well. My migraine has gotten much better. I havn't had one for long time. It may also be because I am taking loads of pain med right now. But even before, I only have migraine occassionally, after I started Verapmil.
DX SLE 1988; APS (Antiphospholipid Syndrome) Pred 10mg, Verapmil 40 mg bd (for migraine headaches), Cellcept 1000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Iron; Simvastin; Oxycontine 10mg; pregablin 150mg


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/25/2009 1:07 PM (GMT -7)   
Thank you Melissa, Pat, Barbara, Hippi, Smurfy and Omega,

I woke up with another headache this morning shakehead I am really tired of this. I've taken 2 Imitrex in the last 2 days, it didn't seem to work very well so when my hubby gets home later today I am going to try the other med, if that doesn't work then I will call my rheumy again. It's not excruciating right now but it's gradually getting worse. I've not been out of the house since I came home from work early on Thursday, I am staying away from the bright rooms in my house and limiting my time on the computer because I am scared the pain will get bad again. Last night at dinner I sat at the table without the light on because I am sensitive to lights.

I have read that pred helps lupus headaches. I wonder if it would help me? Of course I wouldn't know how much to take. At my last visit my rheumy gave me an Rx for pred in case I flare with my GI issues, I think she told me to take 2 a day for a couple of days then taper down.

Anyway, thank you for your kind words and support :-)
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 1/25/2009 1:35 PM (GMT -7)   
Stacie,

If the headache is actually a lupus headache rather than a migraine, that means it is caused by some nice random lupus inflammation in your head. And stress (like worrying about the headache) will only make it worse.

I've had these a few times, and increasing my prednisone by 2-3 mg for a day or two has usually done the trick. Sometimes a few more days if I feel "flare-ish". (Note that's 2-3 mg when my normal dosage was around 10mg.) PS. That was the plan the rhuemy suggested.

If you have a history of migraines (I don't but sounds like lots of others have had) -- then the treatment would be much different than prednisone. But from what you've said I think the lupus inflammation is the culprit and that a couple days of pred will calm it down -- I really don't see how it could hurt to try it.

I also turn the AC down to 60, sleep in a very dark, very quiet room, with either a cold or a warm compress at the back of my neck and over my eyes. Cold air plus an electric blanket or heating pad helps my sleep as well. Make sure you are eating enough and hydrating enough - both of those can make the headache last longer.

Hope that helps a little -- ongoing headaches are NO FUN!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 6mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex

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

"Life is far too important to be taken seriously." –Oscar Wilde, 1982

 

Post Edited (Lynnwood) : 1/25/2009 7:08:50 PM (GMT-7)


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 1/25/2009 4:06 PM (GMT -7)   
Stacie, I'm sorry you get these headahces too. I actually asked my Rheumie about them on Thursday at my appointment and he simply said "Yes they are Lupus headaches" and that was the end of it.
 
I don't get migraines, thank God but I do get bad headaches almost every day. I just usually suffer. But I may ask my family doctor for something stronger for them when I see her on Tuesday.
 
I hope you find something to take to give you some relief.
 
Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


lisaann611
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 1/25/2009 9:25 PM (GMT -7)   
Hello Everyone
I am new here I am 29, married and have a dear 7yo little boy, and also newly dx with SLE and also "had some positive antibodies to sjrogens" thats what the doc said... anyway I recently have been waking up with terrble eye pain and leads to a terrible headache in and around my eyes as well as my head. I take 2 alieve and it does not work... It is horrible I don't even want to open my eyes at all and it even makes my eyes feel funny almost like a dizzy feeling.. it's hard to explain.. I was also dx with epstein barr this summer I don't know if that has anything to do with the eye pain... and also I have been so fatigued almost like I have the flu.. but withno flu symptoms, so horrible to be feeling so weak... Just wondering if any of you feel like this at all.. I'm scared.. eyes
meds:  plaquinel 200mg     coreg 20mg   baby asprin 81mg

Post Edited (lisaann611) : 1/25/2009 9:28:30 PM (GMT-7)


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/26/2009 7:33 PM (GMT -7)   
Thank you Lynn & Connie, FINALLY I feel normal today. On and off all day my head starting hurting a little and then stopped. Here's hoping the rest of the week will be headache free.

Thanks again for all your suggestions and support! Hugs and love
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


Sle28
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 1/28/2009 3:26 PM (GMT -7)   

i have been experience this too for the past 6 months and worse the last month almost daily, i have a mri toorrow for my brain head, but the doctor prescribed lyrica, and valuim for muscle relaxation. i personally did not benifit from either but everyone is different. i have to use an ice pack no lights and cry it out, but also when i take my blood pressure meds they dont come as often(clonidine).

 

I have SLE, raynauds, fibromaylgia, lupus nepritis,vasculits,chronic fatigue and chronic pain, and hypertension. confused

plaqnil,imuran,clonidine,endocet,oxycotin,nyastatin for my mouth sores


fredsmom
New Member


Date Joined Jul 2008
Total Posts : 10
   Posted 1/28/2009 4:11 PM (GMT -7)   

I don't know if this will help anyone but I've had those same headaches for weeks now.  Nausea and dizziness also accompanied them.  I saw a neurologist and he prescribed flexiril (cyclobenzaprine) at bedtime and/or every 8 hrs.  It helped so much!!! He also suggested anvil but I took one and I didn't like how I felt.  This is a med they used to use as an anit depressant (I think) and they have found it helps with headaches.  The neuro told me that he sees alot of lupus patients suffering from these headaches and they are actually being caused by muscle problems and that is why he tried the flexeril.  I've only been taking 1/2 a pill (5mg) at night and it is helping.  I haven't even needed it during the day.

I hope maybe this could help somebody out there.  I always LOVE to share when something finally helps me!

Be well!

Kelly


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/28/2009 4:25 PM (GMT -7)   
Hi Stacie, how are you doing today?  I know there were a few others who mentioned prednisone, and that's what I would suggest too. It's the only thing that got rid of my headaches too.
 
A major headache trigger for me is the constant up and down that the barometer is does in the winter.  I get weather headaches that even prednisone won't help.
 
I'm glad you were doing better on Monday. Hope today is good too!
 
Love
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Moderator for the Lupus and Fibromyalgia forums


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 1/28/2009 6:56 PM (GMT -7)   
Sinus med's (over the counter) are a good resource for those weather headaches....

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 6mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex

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

"Life is far too important to be taken seriously." –Oscar Wilde, 1982

 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/28/2009 7:16 PM (GMT -7)   
Thank you sle, Kelly, Ginny & Lynn,

sle - please let us know how your appt goes, I hope you get some answers. Thank you for the suggestions I will keep them in mind. My blood pressure is usually low 98/68 but I am interested in knowing what it is when I have a headache, I need to get me a blood pressure machine.

Kelly - thank you for sharing your experience. I already take Flexerill (20mg) every night and have been for a long time. I guess if it was some sort of tension headache the flexerill would help.

Ginny - I am still headache free yeah I go see my rheumy on 2/9 and I plan on talking to her about trying Pred next time. If I get another one between now and then I am going to try the second med she called in for me, it's Fioricet and see how it works. We've been having some freaky weather down here in the South so maybe that caused it, I dunno.

Lynn - I may try sinus meds if it happens again while we're having weird weather, thanks for pointing that out.

Thanks again everyone, you all are wonderful!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


Baybreeze
Regular Member


Date Joined Oct 2005
Total Posts : 315
   Posted 1/29/2009 3:29 PM (GMT -7)   

Hi,

I have no idea if my headaches are lupus related or not, but I do get them frequently. I also get severe migraines, which have worsened over time. What I can say is...anytime I'm on any kind of steroids, I get absolutely NO headaches whatsoever. But when I stop them or injectable ones wear off, I get a horrible domino effect of migraines, usually every day which lasts for severel weeks (among many other symptoms). I found Imitrex works wonders for me, but one only gets 9 pills per script so I don't take them all the time, plus they are VERY expensive. But from what I notice on my own, I just have a feeling that many of my migraines seem to be inflammation related, being steroids totally stop them; and when I'm off the steroids, I get them like wildfire.


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/31/2009 1:16 PM (GMT -7)   
Well that didn't last long eyes All week I could feel myself losing ground, Monday was good, I had energy and actually got to do some housework that had been overlooked. Tues - Thurs I felt ok but drained each day it got worse, yesterday I slept in (my day off) within a couple of hours it was back. I took the other med "Fioricet" and it did nothing, didn't touch the headache didn't make me sleepy, nothing! Within a couple hours of waking this morning it was back.

I do not take Pred on a daily basis but my rheumy did give me some to take during a flare. She told me to take a couple of tabs for a couple of days and then taper down. From what some of you said 2 tabs may help?????

Thank you Bay, I think I will try pred today, if it comes back.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


Baybreeze
Regular Member


Date Joined Oct 2005
Total Posts : 315
   Posted 1/31/2009 1:34 PM (GMT -7)   
Hopefully the pred might help you! I really hope it does as I know how miserable it is having those headaches all the time. Sometiems in my flares I would have headaches like every day; then when i took pred, they magically just disappeared.

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 1/31/2009 7:30 PM (GMT -7)   
Hi Stacie,

Sorry to hear you are still fighting with those headaches! Dang it, aren't they the worst! My husband always asks me "what triggers them?" or "Are you stressed, is that it?" Umm, I wish I knew what triggered them, I wouldn't do it anymore....and no I'm not stressed."

I wish I had some advice to make these dang headaches go away, I get them way too often too. Just when my doc and I think we have them licked, they start right up again.

Sending so gentle hugs your way.
Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/1/2009 7:41 PM (GMT -7)   
Thank you Bay and Melissa,

I am with you Melissa I sure wish I knew what was triggering them. If I had to guess because I have had so many over the last couple of weeks, all of them have been towards the end of the week, maybe my body just getting tired?!?!?!?

I took 2 pred tabs last night and I didn't wake up with one this morning and haven't had one all day.

I hope everyone has a great pain free week!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)

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