Hey im new to this site; i have had lupus for about 3years now but still struggle to cope with it. Im on Plaquenil and often have to use pain killers. Can anyone suggest others ways of pain relief as i don't want to continue taking too many pain killers.
I'm sorry to hear that your disease activity doesn't seem to be sufficiently controlled with plaquenil.
There are several other treatment options that can be added to plaquenil. You may want to think about discussing that with your rheumy to see what he/she suggests. It may take time to find what medication might suit but it is important to know that there are other options. All too often we feel we can't "complain" and that nothing more can be done. There's a fine line between accepting what we can't change and not fighting enough.
Hiya,, I agree, it seems that the plaq alone isn't reducing your disease activity enough.... I am on plaq and low dose of pred at the moment and no painkillers... you may need to go back to your Rheumy for some reassessment.... I wish you all the best and hope you get comfortable soon.
thank u to everyone that replied its much appreciated im due to see my rheumy again in early Sept i will explain the pain to her. Sometimes i feel im being a pain when i complain about it and that people think im making it sound worse than it really is!
As for the pain sometimes a warm bath and Advil helps me yet it depends on the day too. Soe days it works and other days it just does not help.
As far as what other folks think........try not to worry much about that. It is hard for other people to understand a illness when they can not physically see it. Keep your chin up and sure hope your up coming appointment goes well. Keep us posted and again, welcome to the boards.
I hope you are able to come to a meeting of the minds with your rheumy.
Something that helped me was to give my pain levels a rating, ie 1-10, and rate it during the day. Keeping a symptom journal often helps to identify what is going on on a day to day basis. Either take copies of this to your doctor visit, or take it with you and go over it with your doctor.
Have you and your rheumy tried to use prescription NSAIDS? There are a lot more out there now than when I started this journey. If you have asthma issues, make sure that your doctor is aware. The list of safe NSAIDS for asthmatics is more limiting, but there are several that if one doesn't help, try another. Often getting relief is a case of trial of the different meds. No one drug works for all.
Even after 20 years, I have found it helps my doctors and I to identify problems by taking a list of current updates for my doctor. When I don't see that doctor but 4 times a year, it helps to keep him/her updated by this means.
I found that at a point along the journey of living with lupus, I was not getting pain relief with the nsaids I was prescribed. I was having major migraines and standard meds weren't working. I hated the feeling that I found when I was seeing my doctors and found I was out of my narcotic pain meds. I felt like I had to beggar myself to explain why the meds were needed, etc.
My solution was to talk to my primary doctor, and asked him if he would be comfortable being the only doctor who wrote narcotic pain meds. Fortunately, he agreed and it has worked very well for us for years. So, you might talk to the doctor you see most often and ask about this for yourself.
A few years after we had started this, I saw in the AMA newsletter that this is now recommended for people who are dealing with chronic/long term health issues. It helps if there is ever a review of meds prescribed to have the narcotic pain meds done only by one physician. It avoids "doctor shopping" and prevents abuse.
Good luck, and I hope that you are able to get relief with your next visit.
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