Diagnosed in October and since then I feel like I have been in a constant flare; joint aches and stabbing pains, muscle weakness and spasms, exhaustion, shortness of breath, daily headaches, and the red rash on my face never goes away. I can have a day, or maybe two, good days where i feel good and can do things and then back to feeling horrible. i have been on four steroid tapers since October. Just wondering if this is par for the course for the beginning of this or should I be asking my rheume different questions?
Diagnosed last January and this sounds a lot like my situation
So much fun, right? Hope we both feel better soon.
Generally that is the norm since you were just diagnosed it takes a while to find a mixture of drugs to find a good match and the body needs a certain time to elimanate drug choices Lupus is like a ticking time bomb.I have had lupus for 11 years now and I still have those types of days you describe. Hang in there and best of Luck.
Some of my symptoms are different. But, I've always been a continuous flare-lessened by meds. I can really relate to feeling horrible or not so hot and then a couple good days and everything cycles back again.. This is hard for my friends to understand--the few I have left. I just have learned to work between it and around it.
Are you taking plaquenil? It might help if you are not.
You got to hold on.
Sounds like a flare, you just have to get thru it. Wish I could tell you it will be over soon, but no one knows.
It sounds very familiar to me is all I can state with certainty. How fast are you tapering Prednisilone? I was on a high of 85mg & had a lot of trouble tapering. Till I was referred to an immunologist in Brisbane Qld. Who stated that I should taper at 1mg per each 3 weeks! Very different to what the Dermatologist was suggesting. I'm now down to 8mg & hoping to continue the trend. 5mg was the lowest I got. Have had up & down depending on other infections etc but generally 1mg per 3 -4 weeks has been the trick for me. Very best wishes to you. Kaz x
You didn’t mention your other meds. Hope you are on something other than steroids, which lessen inflammation, but don’t treat Lupus itself.
I went through the same. Eventually my Dr started me on a low dose of steroid every day. Seemed to help. I agree with Mountain Mama too. I hope that’s not all that your taking for your treatment?
No I’m on plaquenil, mobic, daily prednisone, flexeril at night, high blood pressure med, cholesterol med, a baby aspirin a day, levothyroxine, and prilosec. Was onBCP for hit flashes, but I tested positive for the clotting antibody, so those had to go.
I`m sorry for what you`re going through Karrie, and the rest of your lupie brothers and sisters know exactly what it`s like. You could ask if there are other meds you can try, or combinations of meds. Many are having great success and going into remission with the new biological medicines. Lupus is noted for having remissions, so don`t give up hope. I've had lupus for 40+ years but I get very few remissions. I hope your disease won't be like mine. We learn to adapt, because there's no other choice. I still got married and raised my children and now taking care of my parents through it all. We just have to be creative and do things differently than healthy people.
There is also an auto-immune diet.Here's more info about it. Here are three cookbooks about it. The top 3 on that page.
Best wishes to you!
Hello Karrie
I am on a tapering dose of prednisone for 3 months. Learning to pace your self and rest will be a big help I went thru several years without any problems. Now that I am no longer working I am relearning how to make things easier for myself. It is a life long process.
This is exactly of what I've been dealing with. I told my rheumatologist about these things. She sent me for PFT, MRI, and blood work. For PFT and after the 1st trial (I was supposed to repeat the set for 3 times), my body went into the vasovagal syncope mode. The intern had to call the rapid response team. They then took me to ER because my heart rate started to drop along with my blood pressure. My body started to shiver nonstop. My left hand went them and then both of my hands and arms went numb. The dr had to order EKG to check for my heart rhythm, which turned out to be normal. The dr also ordered blood work, which turned out to be normal as well. For the MRI result, they didn't find anything abnormal. I ran out of plaquenil for 5 days, which was on the same week that I went to have PFT and MRI. I started to have really bad flares. I had to call out for work for one day because I could barely move around. Everything hurt. It hurt to walk, to sit, and to lay down. My body got so stiff. After I received the plaquenil from the online pharmacy, I've noticed that I feel alot better and I haven't had any shortness of breath for 2 days now. I feel more happy than before! lol
Anyway, you are not alone. I was like you...I kept wondering if that was part of the new "adventure" that I have to endure???
I tried cutting down 10 mg of prednisone over one week. Just to 9 mg then I had similar reaction throwing up flu like pains n shaking . 12 hrs I took addition 10 mg n got better. Now I stills on ten n going to new rhu my to help with tapering down Bern on it r couple of years.
Hi Karrie,
Be patient, it took me 8 months for the Plaquenil to be effective enough to wean off Prednisone. During the first 8 months I was all over the place, up and down, pain/no pain, energy/no energy etc
hi karrie, my flares usually last from 2weeks to a month, but if it is longer than that i would talk to my rhuemy about other treatment, prednisone still works well for me, even after 20 yrs of having lupus, but you may be much different especially since you have been on 4 different steroid tapers.....see if there is something else........god bless you......purrs..catspaw1955