I'm 29, male, and I was recently diagnosed with SLE, and now currently exploring possible damage to my kidneys. I've been dealing with the symptoms of SLE for the last 10 years. Mainly swelling in hands, feet and joints. It was always something that I could deal with and that would go away by the next day. Recently it has been happening on a regular basis and not going away as quickly. This has prompted me to seek help. I have done the whole dr's visit, blood tests, etc. routine before but I never got a definitive answer and just more tests ordered, until I was frustrated and would stop going.
I got a new doctor who believes I have SLE. And prompted by my urine tests (protein in urine) has but my on Plaquenil, Prednson, and Lisinopril. It's been a depressing last few days. I'm worried about taking all this new medication, but I'm more scared of not taking it.
Just had to vent! Just looking for understanding people in my area of Southern Calif that I can support and receive support from.
Hi good luck with medication. Plaquenil I found took a bit of getting used to. Eventually got onto 2 a day within ayear, and now no difficulty in taking it. get your eyes checked out yearly, also take the predisnone, and this certainly helps with inflammation/ pain, don't know about the Lisinopril. I checked out all drugs etc online for extra info / reassurance etc. Just joined this web site a couple of months back and just great we are not dealing alone with it all, all the best from highlands of Scotland
Hi Bruin 714
I am also from Southern Ca and I also have SLE but I am on Imuran for the last year.
It is a scary thing and this site is very helpful for info or just to have someone to vent o or support.
I think I have had this for a long time but only got diagnosed a year ago and only because I finally got a good Reumatologist.
You can send me a message anytime .
Pam
Hi - its frustrating when you know something is wrong but the doctors can't pinpoint it! If it is SLE, at least now you know and proper treatment can begin.
As far as the meds, prednisone is the best and worst of the three. It is great in that it addressed inflammation and pain almost immediately. Its the worst in that its side effects (increased appetite, weight gain, moon face) are frustrating. Stay on it as long as you need it then wean off of it. I was on it for 8 months before I was stable without it, but now I've been off it for a year. As much as I hated the prednisone, if my pain symptoms come back - I will get right back on it because it works so well.
I have had no problems taking Plaquenil. It takes a LONG time to kick in (8 months for me) but I have not experienced any side effects.
Lisinopril is a blood pressure med, so that's probably being used to address the swelling as well. The main side effect to watch out for is an annoying dry cough that comes and goes randomly - and just wont go away. I would be in meetings and my mouth would suddenly go dry and I would start coughing and have to leave the room. I suffered with that stupid cough for a year before a pulmonologist told me it was from the Lisinopril. Once I stopped the Lisinopril the cough stopped.
Good luck with your treatment - there is a ton of great information on this site to help you!
Thanks for the support ladies. I find that the hardest thing sometimes is finding someone to talk to. I’ve suspected I had lupus for awhile now just from reading about the disease and relating to so many symptoms. I’ve always been able to deal with the swelling and pain. And I was reluctant to take medication since all I needed was some rest. But with the possible kidney problems that my dr is seeing, I feel like I have to take the meds now to prevent further damage.
Hi .
Yes I know what you mean by not wanting to take the meds but sometimes you have to.
The first Reumatologist I went to sent me away so I just kind of dismissed what I was feeling cause she made me feel like I was making it up.
But a year later I got a new Dr and I not only had Lupus but I have Autoimuune Hepatiis and Myosotis.
I believe if she would have listened to me and put me on meds I would not have had Hepatiis or the damage to my muscles.
So please take your meds
Pam
I understand. The medication is scary. I tried every natural, alternative, and holistic treatment I could find. However, I now take a lot of prescription medications. I understand now that these drugs I take are not necessarily for my current symptoms. They are preventing me from worsening symptoms and future organ damage.
Welcome to our site! I read your laundry list of medications and I take all three (and then some!). The plaquenil does help a lot but as Nikki stated, it does take awhile to kick in. Prednisone is a great med but the side effects stink. I take Lisinopril along with another blood pressure med to control my hypertension that was out of control for awhile.
I hope these meds help you and that your new dr takes you seriously and is able to get you back to feeling well.
Welcome Bruin,
I too hate to take the meds but then I’d do most anything to not feel worse or receive more damage. Having a doctor who listens is also important. Best of luck. You have found a great support system here.
Hi, Bruin. Just wanted to say that I hope your doc gets you feeling better. I take a lot of meds, too, but I’ll take anything to be able to get through my day feeling as good as I can. Best of luck and keep in touch on how it’s going.
i lost a kidney too lupus just recently ......i have had lupus sle for 20yrs now,,,,i get frustrated often about the lupus, and this is a great place to vent,,,,every one is so nice, and i really appreciate the feedback, which is always positive......if you are new to this site welcome!...god bless you, and have sent a prayer your way.....do not give up...catspaw1955
Hi Bruin, I live in So. CaL. too. There are a few of us that I know of in the San Diego area. This is a great place for you to find information and support. Sorry that you have this disease but I know it helps to not feel alone. I just wondered if you feel worse when you are in the sun? That can be a big problem living where we do, the sun sucks the life out of me and adds many spots all over my skin. Remember that the sun can be a major trigger for a lupus flare up.
Yes, continue to take your medication as it will help you to feel better in a few months and protect you from further internal damage.
Hi Bruin. Welcome I too have been suffering from inflammation, I also take the lisinoprol for blood pressure however I’m not on any meds because I am ana negative but dsdna positive for SLE and my rheumatologist says fibromyalgia. Yes I have fibromyalgia and have known that since November when I started having pain I saw a neurologist he diagnosed me with that but I also have nerve entrapment in my arms and carpel tunnel in both hands. I also get spots on my arms from the sun I live in Florida and dermatologist did biopsy on a patch from my arm said solar purpura (sun ALLERGIES). What gets me is the not knowing what is wrong I see a new rheumatologist at the end of the month keep your head up and welcome to the group.
I encourage you to look into the medications you are taking. I have been diagnosed for 9 years now and went without knowing for 6 years. I did not have protein in my urine until I began taking Predisone and Plaquenil. I have not been taking the drugs unless I have a serve flare for the last seven to eight years and about the last year and a half I have not had the protein in my urine. It seems like it took that long for the drugs to get out of my system to give me a negative result. I just started Benlysta infusions on June 23rd and that is something I am going to watch out for. I have ordered all my lab works from 2009 to present because I already have my years prior to that time. I know the doctor's look at our lab but they have too many patients to pay attention to it like we can until something bad happens. It is important to be VERY pro-active about your health. Good luck and God bless!
This is Tracy Darden from the Livelife Foundation, I have had SLE for 10 years and I’m no longer on medicines. I didn’t like the side effects and they made me feel bad. My husband and I found m a personal trainer and nutritionist that came up with custom exercises and a healthy diet that changed my life. I have been with my trainer for almost a year now and I’m feeling GREAT! Some of the foods that I was eating were causing the pain in my body and the other problems. Start by studying the foods that you are eating and what they can do to your body. Also , study the side effects of your medicines. I’m praying for you and your Healing.
Hello, this is Pamela. I have been diagnosed with SLE for 4 years now. Im currently taking Plaquenil and 5mg of Prednisone. I recently was just put on the steroid due to swelling in my fingers, wrist and toes. The prednisone is working well, but it’s not good to stay on it for a long period of time. It causes brittle bones. I’ve also heard that exercise and a good diet can lead to being medicine free. In the mean time, be in tune to your body and get plenty of rest and try to eat right. Good luck to you!
Hi, what has helped me, only think about making it through TO DAY , is my focus n strength. Tomorrow will be something totally different, so only for Today, are my thoughts. …Beverly L.
Hi, swelling can come from different systematic circumstances in the body when theirs a kidney condition. Commonly salt is one and to much water, to little is not good either, knowing your body helps you with how much water you need. Keep and eye on your tongue and make sure it looks nice like lively, no chalky dry look. Ms dash is a healthy substitute for salt. Muscle rub helps with pain from swelling. Also pray and I will pray for you as well in JESUS CHRIST name.
I've been on the medication for almost 2 weeks now. I feel tremendously better. I think I got used to feeling tired and in pain and didn't realize how bad I was feeling. It's nice to feel normal again. I'm just taking it one day at a time now and enjoying the days that I feel better. So far the meds are great, but I hope in the end with diet, exercise and a healthy lifestyle I can reduce and limit the meds that I need. But for now I still need to access everything that may not be well.
I have several appointments coming up to take a closer look at my kidneys and lungs. I'm hoping all goes well.