By contributing writer, Marisa Powers
When it is springtime in the Midwest many Lupies and other Chronic Illness Warriors enjoy a small window of some relief. Symptoms like cold sensitivity, achy joints, Reynaud’s syndrome (just so say a few) begin to subside with the warming weather. Though some people who are dependent on Prednisone can get a small break around this time, the break really does not last very long, unfortunately, if you are anything like me. The heat intolerance, the swelling joints, the UV sensitivity, and the unbearable pain can make summers miserable. So many of us have to depend on Prednisone to get through the hotter months and to keep us going.
My Prednisone story began in the middle of winter when I started a new flare and could not kick it. The doctor put me on 20mg Prednisone and told me to taper off and take the meds for a total of three weeks. Unfortunately it didn’t do a thing. I couldn’t even taper off due to pain and swelling in my legs.
So when it started getting warmer, I only had about a week without steroids before the doctor gave me another regimen for another month, then another, then eventually told me to take the 20mg daily until I felt well enough to start tapering off. I still have yet to be weaned off the medication unfortunately and have been on it for over a year (like so many other people with Lupus and other autoimmune diseases).
With that being said, I have read a few people’s representations of their experience with Prednisone and was shocked at first. I couldn’t believe just what this little pill could do to our bodies! Over time though, I realized that their experience wasn’t much different from mine. Here are a few things that I noticed.
Weight gain
I have gained over 50 pounds in the last year from Prednisone. And when I am retaining water, I look even puffier. It is very hard to see myself with all of the added weight.
Moon face
Oh the moon face! My face begain to have no definition and seemed to get wider and wider over time. I have tried contouring my makeup to give myself some sort of cheekbone, but nothing works.
Hangry all the time
One of the many side effects of steroids is being hungry. I learned to “graze” and always have snacks available so that I don’t become “hangry”. It is really an all the time thing and it doesn’t help with all the weight gain either.
Insomnia
The insomnia from this medication is really frustrating. When you don’t sleep, your body doesn’t rest, and it doesn’t heal. It seems to be an endless cycle that prevents you from getting off of the medication.
Anxiety and depression
I previously have been prone to anxiety and having a chronic illness like Lupus doesn’t help. But the Prednisone amplifies it ten times fold. Invasive thoughts and panic attacks started controlling my life until my body started getting used to the medication. I also started having depression from the poor self image and the fact that you feel uncomfortable in your own body. My physicians have been very helpful and understanding of this side effect.
Hair thinning
Oh the hair thinning. Every time I wash my hair there are just gobs coming out. I tend to wear my hair up since it looks too thin to wear down at this point.
Sweating
I have never sweat so much in my life! I have to wear an ice pack most days because I have a heat intolerance, but it still pours out the top of my head and down my back. Not very attractive.
Losing my teeth
Many of us with chronic illness, unfortunately, have bad teeth. I started showing signs in my teen years. But since starting Prednisone, my teeth are cracking, breaking, and discoloring.
Although I have all the above symptoms and they seem to be miserable, to say the least, I am able to walk. I am able to work and spend time with my family. I am surviving. Hopefully (soon) there will be a time when I can taper off and possibly lose some of the weight and maybe feel “normal’ again. To be honest, I can’t wait! But there is a big chance that I will be stuck taking this medication for the rest of my life. I can just make the best of it and remember the positives.
How many of you deal with side effects from the loved/hated Prednisone? How long have you been on the drug? Let us know in the comments below.
Marisa Powers was diagnosed with Systemic Lupus Erythematosus in 2016 at the age of 35 after a major flare trigger by the birth of her child. Since then she has become an advocate with the Lupus Foundation of America and the US Pain Association to try to inform others of chronic illness and chronic pain issues. While living with Systematic Lupus, Fibromyalgia, Anxiety and Panic Attacks, Hypothyroidism, and Reynauds Syndrome, she has written for The Mighty talking about everyday issues with being a survivor and now is a contributor for Lupus Chick. You can read her other articles at www.TheMighty.com/u/marisa-powers-1
Thank you for thoughtfully sharing your story. So many of us can relate. I had the nurse at my PCP office say to me this week “OH you’ve gained some weight.” Please don’t remind me. I look in the mirror every day. My charts contains details all about the daily prednisone, stereoid boosts and so on.
I too was placed on prednisone for extended periods of time and already needed to shed some weight prior to going on prednisone now I’m 200 lbs. that’s the most I’ve ever weighed.. the extra weight is taking a toll on my knees and I’m so self conscious about this extra weight. It almost makes it not worth taking. Thanks for sharing!
I have been on pred since June. The plan was a medrol dose pack to treat a sudden attack of idiopathic angioedema and hives! I had never had allergies to anything and had no idea why I had this attack. My house had been tented 3 days prior to treat termites and I was on a sulfa ABT for what I thought was a UTI ( it was inflammation of kidney I later found). Well when the Medrol was cut back it instantly came back. Went on another round….same thing ! The angioedema was coming with fever and hives still and the ER Dr. gave me epi pen Rx in case of my “throat closing.” Ok by then I was scared to death! Wth was wrong with me. So following up at the local clinic, just had new insurance kick in. Def not thr best ins but the doc immediately kept me on the prednisone 30 mg a day and sent me for some labs. ANA and nuclear and allergies amongst others. Thyroid and CMP, CBC. The ANA came back showing SLE lupus doc said.
So I am now stuck on this pred because if I even try wean down by 1 mg I get pink and swell and hive and angioedema comes within hours and is relentless. So this prednisone at FIRST was a relief until the insomnia has made me insane, I did gain 14 lbs the first month but I was ok with that because I had dropped to 93lbs ???? from being ill and sleeping constantly for 3 years prior. Everything from gastric issues to depression, and just general malaise. Its been awful.
Anyway……..still on the pred 3 months later and Im scared! However Im stuck to it or I know I will be in worst shape without it ???? . The shaking and tremors from the pred is horrible and my voice sometimes shakes it getsnso bad. I can feel the tremors through my whole body. Blood pressure is sky high, doc had to add 2 bp meds. I thought maybe from prednisone but she said that it shouldn’t be making it this high. I have cracked sore finger tips on every finger for some reason since prednisone. I have had some hair loss BUT thats prob the lupus. I am so stuck and terrified to try to come off of it and will soon be meeting new Rheumatologist on oct 22. IDK what I wilk do if he tries to pull me off of it. Nothing else helps the angio and hives. So thats my story. I am feeling like the biggest loser to my kids cause we dont go places because I never feel well enough and its taking a toll on my 16 yr old. She worries and wants us to do more stuff and I feel like a loser. Idk how all this will end up and I am afraid. Thats my story.
Jenn C
Hi,
I came across your story because I was trying to read about various symptoms lupus patients experience. I have not been diagnosed nor do I know if I even have lupus. Currently I’m experiencing joint pain, pain in hands and arms, hair loss, scaly rash on my finger that comes and goes, cold sores and nose sores often, cold hands and feet and pain in the kidney and lower back area that comes and goes. However, in the past I have had anxiety, angioedema and hives. That is why I’m commenting to this message. My hives and angioedema were so bad that they changed the look of my face completely. My eyes and lips mostly were affected mostly with the angioedema. I would take children’s liquid Benadryl constantly to try and keep them under control when they would come on. I was always sleepy but it’s what would help the fastest. I went to the doctor and allergist with my symptoms and they diagnosed me with chronic ulticaria (hives) and angioedema. They never knew why they happened. They put me on an allergy pill twice a day. I had to stay on allergy pills for two years until I finally weened myself off of them. I am not saying I do have lupus or that maybe allergy pills will work for you because they might not especially knowing you do have lupus but I thought it might be worth mentioning just in case. When I went to my doctor’s office initially with my anxiety, panic attacks, hives and angioedema they never really took me seriously so I am a little hesitant to go back to the doctor with these new symptoms. I feel like something is wrong but what if nothing is really wrong with me and they will just make me feel as if I’m crazy again. Anyway I hope you find something that works for you soon. Good luck, praying for you. 🙂
I am really struggling with finding a diagnosis. In fact, that is making me struggle with everything. When I look up “symptoms of Lupus”, I have so many of them… extreme fatigue, mouth and nose ulcers, bad teeth, insomnia, swelling in my hand… I also have “mysterious” symptoms that aren’t listed but I can’t find a reason for… my tongue swells. So much, as a matter of fact, that I have indentations on the side of my tongue and the inside of my bottom lip from my teeth… I am FREEZING all the time (but my skin doesn’t turn blue or white) to the point where I have a portable heater in my office in the SUMMER. I have depression, likely because I feel like no one believes me or they think I am attention-seeking. I get pleurisy so often that I stopped keeping track of it. It was so bad last week however, that I went to the ER thinking I was seriously dying. I was told it was a virus… I don’t think it was. I have it too often for it to be that. My hair is thinning significantly, the ends of my eyebrows are gone. I have had a DVT and a PE and have been told I tested positive for Lupus anticoagulant (which I realize is not Lupus) and that I have APS, for which I am now having to take daily shots of blood thinners for the rest of my life. Months ago I went to a rheumatologist for diagnosis and was basically told I was crazy. She didn’t even examine me. She did blood work but told me it was “all normal” and that maybe I should seek psychological help. I feel so alone. I feel depressed and I can’t sleep, which makes it worse. How can I have all these symptoms and yet constantly be told nothing is wrong? How could I imagine being cold all the time or the mouth ulcers or the hair loss? I don’t know what to do. I saw a new doctor yesterday who actually said he thinks I have Lupus and wrote a prescription for Plaquenil but at the last minute stopped and said he wanted to wait on new blood work before giving it to me… what happens when that test again comes back “normal”? Can anyone help me?
Hi Erin! So Sorry for my delay. I’ve been having some health issues and then the holidays were crazy. I have met many people who have a lot of symptoms of lupus before it shows up positive in their blood work. Is it possible for you to see another rheumatologist for a second opinion. They first one you saw doesnt sound good. Also, you should definitely check out Exagen.com and look up their AVISE CTD test. You can have the kit sent to any doctor – even your primary. It is one of the newer tests for rheumatological conditions and is highly accurate and tests for other things similar to lupus. I have used the test in the past and loved it. Also, I don’t get anything if you take the test. I just want you to know there is another option out there that is helping people get diagnosed – whether it is lupus or not. I am so sorry you have been dealing wtih all of these symptoms. I can imagine how bad you have been feeling! Please reach out to me if you have any questions. My direct email is MArisa@lupuschick.com
I was 1st dx with SLE in 1997, I weighed 165 I’m 5’9” tall and that was very thin for my body structure. After the many years of off and on of very high dosages of prednisone my highest weight was 180.. My SLE went dormant they said by blood tests for a few years. During that time frame I had 3 brain aneurysms a back surgery and 2 neck surgeries. The lack of getting exercise from my physical condition I put on 15lbs. This passed Feb I started having a little bit of breathing issues so I FINALLY kicked the habit!! Immediately after everything got worse! I was taken by ambulance from my doctors office to the hospital with sepsis, alarming low BP, fever and dehydration and struggling for every breath yet my oxygen level was fine! It took several rounds of steroids however that was the only thing that pulled me out of the breathing issues and I gained 15 more pounds. Just 4 weeks ago out of the blue the breathing issues started again and I have been and I have been on the steroids since I have gained another 25 pounds! I barely eat, I don’t eat unhealthy. But it’s either the breathe and be fat from the steroids or struggle for every breath. I am on oxygen at night now. I still don’t think my PC doc believes this is lupus related ????♀️