I just stopped prednisone about a week ago and I am flaring so bad. My ankles swelled up like balloons and the joint pain and stiffness has made it hard to walk and use my hands. I have been getting Iron IV's two times a week for the severe anemia that has returned. Now my rashes are returning. Im so scared, Im only in my thirties and I feel like I am falling apart. The hematologist sent me to the ER for high blood pressure a couple weeks ago,they were afraid there was an impending stroke. My job is very physical and Im so scared that I will loose my job because I can't physically keep up. I have three children and I feel so horrible that all I want to do is climb in the bed when I get off. I feel like Im alone. Not many people understand what lupus is. My ankles swelling up really scared me. I always experience joint pain but the swelling has never happened. I don't really want to go back on prednisone because my hair is falling out and I am gaining alot of weight in strange places, and when I wean down I get really bad flares, I feel like Im on a roller coaster. Im on plaquenil but it doesn't help much. Is anyone else having these symptoms? What do you do for medication to control? Please help.
Jazzy, you are not alone. I've spent my share of time in the hall in front of the critical care ER nurses desk, with a heart monitor and blood pressure cuff on, with them waiting to see if I was going to have a stroke. Too many times in fact. It took several visits, but I had thought they didn't have a room for me because they were busy. NO. Other people got rooms, I was getting their up close attention!
I saw where you made another post saying you give up on help and friends being here. Please understand, many people are busier on weekends, catching up on sleep, or whatever happens. I wish I had seen your post earlier. I understand your frustration, and know what it's like to feel alone. On top of being unwell, it feels miserable!
Does your rheumatologist wean you slow enough off the prednisone? Everyone reacts differently, and some of us have to go VERY slowly down, so as to not rebound. It can also do a real number on your thoughts and feelings. I would put a call in to that office, and ask to at least talk with a nurse. If no one is available, does your health insurance have a medical nurse staffed help line? Mine does, and they are always good at helping when no one else can be reached.
How old are your children? When you need to rest, can you play a family movie, and let them lounge and cuddle with you comfy on the couch? What kind of friends and family are nearby? There is no shame in turning to them and saying that you need a little help. If someone could just bring you dinner one night, someone else run a few quick errands, that would take some of the after work load off of you. On nights you do cook, pull the kids into the kitchen, and give everybody jobs. Even a five year old can help set a table, and older kids help rustle up a meal with you. Laundry? Everybody wears and uses the stuff, let anyone old enough help load the washer and dryer, and fold. Let the small stuff slide - you don't have to be super woman or have a spotless home. Happy and loving are what matter!
I hope others will come along soon with more help for you. As JC says, "Stay strong."
And you are not alone, keep posting. I'm listening.
Hey I saw your other post please don’t give up!! It takes a while for people to see posts I only just saw this one this morning… I live I. The uk though so times are different here…
I tried coming off prednisone a few months ago and had the same reaction with my joints they were so painful and I started to get the rash back so my rheumatologist put me back on it again because it caused a flare… I’m now on 10mgs to keep things under control maybe you need to go back on it…
Call your doctors…go out on disability…you can work part time…your allowed…what state do you live in…I love prednisone. …I can have a life…
I don't have the answers for you but I do have prayers for you and healing thoughts going to you. I am guessing your children are young and resting with them is difficult but if you can lie down with them and have them read their books to you, for instance, that may help a little bit. Having them help is another thing that I too would mention. Are you still married? How does your husband help? Can you enlist some help from family and friends? Hugs, Rita
My daughter takes a mixture of medicines. They include anti-malarial drugs, methotrexate, and a monthly infusion called Actemra. Please see your Dr for something to ease your joint pain and swelling. Hugs and prayers to you.
I don't have any answers for you but I am sending you love and positive thoughts. I can't imagine having to deal with all of this and my children being younger and at home. Working too! That is amazing to me that you are trying. Maybe just a little prednisone will help.
Take care, Geneva
I hope you were weaned off of prednisone over time and not all at once! Get with your rheumy right away and see what else they can do for you...there is no need to suffer like this! Prayers are with you!
I had this happend to me in June and it was very scarey! I got my kidney labs tested and they were way off. They gave me LASIK to get the water off and that helped In about a week and then my BP came down and my swelling was gone and my labs went back to normal. I always insist that all my labs be checked when swelling happens and it’s not to ever be taken lightly. I agree with what awesomed said about getting on short term disability when this happens, that way you can be off your feet. Please realize that we are here for you. I don’t always have discussions here but I always read and learn from everyone’s experiences. They have helped me soo much during the last four years. I take the info from here and run it by my dr and we both are learning from this site. There are many drs that are scared to treat us. Don’t give up on them either. Make suggestions to them that you think will help your condition. I’m gonna send a friend request your way. I’m Shannon and I have 2 kids and work full time as a nurse so I totally understand physical work and long shifts!! Hope you get better soon.
I'm so sorry you are having such awful symptoms. It took me a long time to wean off Prednisone because I'd been on it so long. Sometimes the pain & swelling are due to tapering the Prednisone. You should contact your Rheumatologist so you can find out what's going on. I think you need to talk to your Dr about your symptoms & what other medicine you can take to keep the Lupus under control & allow you to work. Sometimes it takes a while to get the right combination of medicine that works for you. Prednisone should only be used in organ threatening Lupus, it has awful side effects if taken long term. If you can get someone to help you with your children when your in a flare, that would help you rest. You shouldn't feel alone there's so many people in this support group have walked in your shoes & truly identify & are sending you their concern & hope that you feel better soon. You might need to have some adjustments in your job to make it easier for you. The Americans with Disabilities act is to help people with chronic disease & disability in the work place. Don't feel shy to ask for help or to talk to your Dr. You have every right to get the best care for your disease & to get your questions answered.
Hi Jazzy, I saw your first post and I think that I answered it and gave some examples of what to look out for. First you have to understand that when you have a AUTOIMMUNE DISEASE it affects more than one part of your body. Most people develope more than one disease over a period of time and each one of them will have to be treated indivdually, meaning you most likely will have a Dermy, Rheumy, Endo, Neuro, Cardiac, along with your Primary Docs. Let's address the first symptom of ankle and joint swelling, Prednisone is a steroid and they will make you swell in your face, hands, ankles, gain weight and sometimes there will be fluid build up around your internal organs like the heart, lungs and inbetween your organs. Also if you are taking NSAIDS which are over the counter pain meds they will also make you swell because they can cause kidney damage and make you swell. Steroids also makes your hair fall out, skin dry and can bring on depression and they also damage your immune system if you are on them for long periods of time,(They are not good for you long term). There is a gland that sits over your Kidneys that controls your Blood pressure by controlling the amount of fluids your kidneys are able to expose of from the body if you are having kidney issues, you will have trouble with High Blood pressure due to the amount of fluid in the body and is around the heart, you will need to be placed on dieurectic to help flush out the build up water in the tissues thus lowering your Blood pressure, reducing the amount of fluid in your joints and will also help relieve the joint pain. Issue two, most Lupies are anemic because we often have more than one health issue, but that can be treated with no problem. Issue three, the skin rashes may be due to exposure to the Sun, first of all you need to know what your triggers are and what to do to avoid them alot of Lupies have the Lupus SLE which is the one that is affected by Sun exposure like what I have my first flare was a Butterfly rash on my face, ears and neck and my face was very swollen, I also had lumps on my scalp.
Louise is absolutely correct about probably having to wean down slower. But, as to the ankle swelling and such, for both of you I think it's important to tell our doctor's as ankle swelling, high BP, are all symptoms of kidney issues. That's always a concern with lupus.
Jazzy, we do know what you are going through here. Just know that we are sufferers of lupus as well, which allows us to understand but means that we also have days when we must rest, go to doctors, etc.
I do hope that you feel better soon.
Hi, am taking the same meds., my doctor says , only take a half of the prednisone! But it really help me. So I take awhile one every other day, so that I can move. I don’t get it but am doing what I feel is good for me!! Hope that things work out for you! Keep your Faith strong!!..Beverly L.