HealingWell
Search Close Search
☰

Update on Plaquenil Treatment

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/13/2009 7:13 PM (GMT 0)
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
Posted 8/13/2009 10:47 PM (GMT 0)
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 

Posted 8/14/2009 5:42 PM (GMT 0)
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
Posted 8/14/2009 5:57 PM (GMT 0)
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.
Posted 8/14/2009 9:54 PM (GMT 0)
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!
Posted 8/15/2009 1:07 AM (GMT 0)
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
Posted 8/15/2009 1:32 AM (GMT 0)
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

Posted 8/15/2009 3:03 AM (GMT 0)
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.
✚ New Topic ✚ Reply

HealingWell

Connect With Us
© 1997-2024 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.