Life With Lupus

Just need to vent


I have had Lupus since I was 17 (i am 54) it was in remission until I tried to have a family. After my sons birth the disease has never been under control but I have always tried to manage. My son is now 25 and for the last five years its just getting worse and worse I can barely walk, cant drive, and sleep all the time. The doctor I was seeing for the last five years that I thought was a rheumatologist was actually an oncologist who thought he knew all there was to know about the disease … he has since closed his practice and moved to Europe I finally found a new doctor and he put me on benlysta but I am having so much pain I am having to use oxycodone to manage and I am terrified of addiction I hate what this tricky trickster disease has done to me physically but more emotionally I am an independent person that has had to learn to depend on others, I have lost my teeth, hair and skin I am just so sick of it all. thanks for listening


I’m sorry to hear what your going through I know it’s hard to try and stay positive when the pain and everything is bothering you. I myself is taking benlysta and I helps as far as pain is concerned hmmm. I’m sure ur on prednisone and prob a high dose ask you dr to look and see if he thinks this Med called Acthar hp gel would be good for you It an injection under the skin into a muscle 2x a week I’ve been on it for 2 years now and now the only thing I take for pain is 800mg Motrin and weed I may have a bottle of Vic or perch with a count of 90 and it will last 6 months. If u don’t smoke they have edibles


Jerry I have been reading a lot on medical weed and it looks promising especially the edibles does it really help with the constant pain? I have been on prednisone for roughly 25 years which I am sure you know is a big no-no so my new dr is trying to wean me off of it. I am down to 5 mg (of prednisone) a day and hope to be off it entirely by June. My new dr is trying to come up with another med to use with the benlysta I’ll ask about the gel you mentioned thanks for listening sometimes I just need to get it out


Hello my people. Jerry hit on a good pain reliever, reefer madness! lol I used to partake in the “madness”. idk why I’m calling it that, but here I am…didnt care for the movie unless making fun out of it as younger adults. Anyways, if you are not a regular user, I would start with CBD oil. A 3 gram bottle of drops work great for me! I dont care for the THC part of it anymore so this works great! It tastes a little rough so make sure you get the peppermint flavor. A couple drops under my tongue and it kicks in within 10-15 minutes without that psychoactive THC it helps my anxiety, restlessness, nausea, pain and all around mood. It does make me a lil more sedated than say water, but that could be the mixture of it and the Rx’s I’m on. Overall it has helped me (usually near bedtime) taper down on all my meds. In particular my narcotics. After my 4th month I have stabalized with the withdrawls and am feeling better. I also have a sense of positivity that has not been so pronounced in the past. I get mine at Basics and the best brand(quality) I have found is Charlotte’s Web. $20-$60 a bottle that should last 1-2 months. Edibles usually contain THC unless labeled as such and also edibles r difficult to pin down how much or strong a single bite can be. They r very hard for me cuz I love my munchies so things get me fuzzy quick. lol I hope this helped and I hope all is well with everyone! Love and light to you all my friends!