Update on Plaquenil Treatment

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Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 8/13/2009 12:13 PM (GMT -7)   
First off thank you all for the support and stories. I feel better as far as stiffness in the mornings a lot compared to before however I am still having some pretty bad days and still having my usual flares which luckily this one is starting to end but i still have ulcers and rashes and some pain. My knees were actually giving me more problems than before with puffiness and pain. It made it uncomfortable to walk and ice for an hour didn't help but seemed to make it worse! I thought the headaches had gone away but it has recently been a lot of pressure especially in my temples which makes them sensitive to touch. Today though it is a headache which wont go away. Its not horrible though so I am dealing. I also now have to go see an allergist because my nasal steroids are not working...I know they probably want to try allergy shots but I have read they are not good for lupies so I am going to say something. Maybe they will give me oral pred and nip everything in the butt huh? lol Other than that I am going to see my neuro soon and get a nerve/muscle study done and get some neuropathic meds for the burning pain. I hope you all are doing well and your meds are working! *hugs* -Britt
 
 
*Lupie Britt*
 
-In the "loop" of a diagnosis-They wont even consider it UTCD!- 
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Dexacort(dexamethasone) Nasal Spray- once daily; One-a-Day womens vitamin- once daily; occasional excedrin migraine.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/13/2009 3:47 PM (GMT -7)   
Hey Britt,
 
So sorry you're battling.  I know how hard it is to manage the pain and find relief.  How long have you been on the Plaq now?  Sometimes we have to experiment a bit with medication options until we find ones that work. Definitely ask your rheumy about adding Prednisone to see if it helps.  Those headaches are the worst. 
 
Take care Britt,
Ginny 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 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, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/14/2009 10:42 AM (GMT -7)   
Hi..Plaquenil for me...was like a dream drug..i had my energy back and i stopped limping from the joint pain...but i ended up being allergic to it..and had to go off it

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 8/14/2009 10:57 AM (GMT -7)   
Plaquenil has been great for me. Unfortunately, its not enough but I will never go off of it if I don't have to. I know that things would be so much worse for me without it. Also unfortunately, I cannot tolerate methotrexate any longer nor can I do Arava so my joint pain is coming back but I know that it would be a lot worse without the Plaq. I did have to up my Pred just a bit in the interim of my med limbo situation but I would prefer not to be on Pred long term.
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009, Raynauds 2009
 
Meds: Plaquenil 400mg/day, Pred 5 mg/day, Methotrexate 10mg/week, Arava 20/mg (what next???), Vicoprofen PRN, Flexeril PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/14/2009 2:54 PM (GMT -7)   
Hey gals, I'm starting Plaquenil on Monday.  I hope it's the dream drug for me too.  I'm sure I'll be asking for advice on it!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 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, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums


gonuts
Regular Member


Date Joined Jan 2008
Total Posts : 159
   Posted 8/14/2009 6:07 PM (GMT -7)   
shakehead I was on plaquinil and lyrica, at the same time...I too had to go off for the rash reason.. I am getting to the frustrated stage, although i would like to ask.. since i was only on the meds for 2or 3 wks. Do you have withdrawl from either one?

thanks, Laura turn
Cervical spine surgery 2004, C-section 1986, Cholecystectomy 1999, Thoracic and Lumbar injury 2000. Anxiety/depression 2008. Fibromyalgia 2009, Thyroidectomy 2008. Degenerative disc disease. IBS. Asthma, Rheumitoid Arthritis


karasmommy
Veteran Member


Date Joined Mar 2005
Total Posts : 589
   Posted 8/14/2009 6:32 PM (GMT -7)   
Laura,
 
The rash that you are referring to - do you mean it is from the Plaquenil?  I had a massive constant itching from it - we were finally able to determine the itching rash was from the GENERIC version of Plaq - if I take the Brand Name only of Plaquenil I have NO rash or problems. 
Plaquenil has been my lifesaver, I LOVE this drug.  Unfortunatly the brand version is quite expensive, but it is worth everything I pay for it.
 
Ellen
Ellen
Diagnosed with Lupus - April 2002
Diagnosed with Crohn's Disease (and all the lovely things that come with it) - January 2003 (problems since early 1990)
Fibromyalgia 2005 
Normal Meds:  Ambian 10mg, Flexeril 10mg as needed, Plaquenil 400mg, MTX 25mg Injection, Probiotics
"Extras" Right Now for Crohn's Flare:  Pred 5mg, Entocort 9mg


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/14/2009 8:03 PM (GMT -7)   
Britt
You might see if your doc will test your B vitamins for your nervous system pain, B6 has worked wonders for me, no lyrica or anything, and others praise B12, though my B12 should be low due to autoimmune disease,but it is really high and I can't take B12 because it gives me headaches. But B6 I must be lacking because I take a big dose and it really helps. There are some other B vitamins too. You might check with your doc on this simple thing, the dosing is important and they can test for the vitamns. Its a lot cheaper and has much fewer side effects than the other meds and doesn't hurt your liver.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

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