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Plaquenil- steroids- Lupus

I have had lupus for 8 years diagnosed have been allergic to everything I have been given. so tired of having joint pain and no DR will give me Tramadol. I took Oxycodone for 5 years and due to problems with my joints and it being very hard on your teeth ni tampered myself off .and know can't get any pain relief. so many hurdles to jump through just to get a DR to listen to me .so I suffer everyday and have not been able to lose the 60 lbs that I put on due to lack of activity. just thought I would share some of the battles in the life of lupus.

  1. I am glad you took the time to share a bit about your Lupus journey here, ! Living with Lupus is definitely not easy. And it sounds like your issues are compounded by allergies to many of the medications used to treat Lupus symptoms. Does anything being you relief from the pain, even temporarily? Like warm baths or massage or anything? I know those are short term fixes, but since more conventional treatments aren't working well for you, I was trying to offer some aids with less side effects.

    Please know you are not alone in this!

    Best, Erin, Team Member.

    1. yes Epsom salt baths are very much a relif Anns massages have been great . insurance only will pay for so many a year.

  2. Do you have a pain management doctor, or just your primary and rheumatologist?

    1. no pain management its like trying to pull teeth just to see one referred today so thankful to my new rheumatologist.

    2. yes it is definitely hard to find a rheumatologist that can help and refer as well. Glad you got a new doctor that’s helping some. ~Racquel ~ team member

  3. I was thinking the same thing. A pain management specialist can help manage the pain associated with lupus

    1. depends on the clinic. The pain management clinic/drs in my area don’t see people with chronic pain conditions like lupus/fibro/crps etc. They only see patients that they can do injections and such on. It’s the craziest of things. Blew my mind. My pcp thankfully has been great to manage my pain. But it’s different everywhere.

      Amber B, RN ( team moderator)

    2. I’m sure it can. It’s so important to find a good care team. ~Racquel ~ team member

  4. I started taking LDN low dose naltrexone. Read articles on NIH site. I take 1.5 mg 3x/da in addition to 5 mg steroid daily and 4 aspirin daily and helps tremendously. My rheumatologist doesn't write for it because they don't get the pain.

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