Hi all, I am new to the support group thing. I have been doing this alone for a few years and am exhausted and feeling overwhelmed. I just started Benlysta, have had 2 infusions so far, and am not sure how I am feeling or if it is normal. I have SLE and a gift basket of other auto immune issues. For the first week after infusion I feel better almost like I think normal used to be before, but then about 5 days before infusion again I feel like I hit a brick wall. The fever comes back, the pain and exhaustion come back, I'm not sure if they are worse or just seem worse because I feel better for a week before. I only have one more treatment on the 2 week interval and then I move to the monthly course and I am scared if I still feel crummy after a week I'm not sure it is worth it. If anyone has any experience with it I would love to hear your story. I also take Plaquenil, prednisone, methotrexate, vitamin d, folic acid, leucovoran, gabapentin, pain medication and vitamins. Is there anything anyone has found to help with the exhaustion? Oh goodness I could fill this feed up with so many questions I feel so lost and alone and I have so many questions. I love my rhumy I know she is trying but I feel like a burden to ask to many questions I know I am not her sickest patient I just am overwhelmed right now and feeling crummy and gaining weight by the second aren't helping.
I’m sorry you’re feeling lousy right now. I haven’t any experience with Benlysta, so I can’t speak from experience. This trip is no fun! Just hope u have some brighter days very soon.
hello heather welcome (: well i'm 21 and i just got diagnosed this year but have had this symptoms since i was a child.I have joint pains,fatigue,i also get chest pains and have shortness of breath .ive taken predisone,prioxicam,hydroxychloroquine.when i feel exhausted i listen to my body and let it rest .i like to drink organic teas with natural caffeine such as yerba mate,black tea,green tea.chia seeds are great to ,coconut water .im a very organic person.im still trying to find natural energy for my exhaustion.your not alone and you have us all here for support .this support group is amazing! they have given me strength and faith i needed so desperately ! stay strong and may god bless you (:
Hey there. I’m 25 and was just recently officially diagnosed with Lupus, but have suffered chronic pain for the last four years and I am new to the support group thing as well. I agree that there are certain foods that can help with energy…I always feel slightly better after yogurt. But mostly I listen to my body and let it rest until I’m not as exhausted. Getting a little bit of sun, even just 15 mins helps me, but I have to be careful because of the meds I am taking of course. Even a 5 minute walk (go as slow as you need) can lift your morale and help with the fatigue. Try to get the best sleep at night you can, I take Amitriptyline at night and it improved my sleep which subsequently helped my pain and fatigue to lessen. Hang in there, a better day will come your way!
I agree with Emily listen to your body when fatigue sets in. I would usually try to fight it in the beginning, it just makes other systems worse. Good luck and enjoy your good days rest on your not so good ones.
Hang in there - things will get better. It's nice to vent here! No one is going to tell you to just suck it up! Lupus is just plain hard to deal with.
Thank you all so much. It helps so much to know that there are others out there going through it too. I have done it alone for so long and nobody seems to really understand in my family or at work. I feel like they think I am crazy sometimes. Thank you again. I think I am going to like the support here.
Hi Heather!
Welcome to the group! I have SLE Lupus and was diagnosed in 2003. My rheumy has tried everything on me and we haven't had much luck. My prednisone level started at 60mg and I'm down to 20mg, but every time I get to a lower dose my body flares so bad that I can't move.
It sounds like you are on a lot of meds all at one time. Methotrexate is powerful alone and I wonder if your doctor might explain why you need to take so many strong meds all at once.
Please be honest with your doctor and ask any and all questions that you may have. Your health is what is most important and it is the doctor's job to take care of you the best way possible.
We are here for each other....prayers and hugs to you!
Lori
I know I am on a lot of medications right now. My rheumy has tried to wean down on many of the medications but as soon as we do I flare even worse. I feel like I have been in a constant flare for close to 8 months now and I'm sure the trigger is that I work full time, go to school part time and feel the need to take care of everyone around me first, so as of right now we are not able to wean the meds down. I hope that with summer break from school things get easier and something will change soon. Thank you all for your kind words of support when I signed up yesterday I felt like this was it if nobody understood I was going to crawl in a hole and give up. This morning I woke up to so many kind words of encouragement that it will be OK I am not alone anymore in this fight. I know I have a long way to go and I could be worse off than I am so for now I will take things a day at a time. Thank you again to everyone.
Hi, and welcome to the group, I also am fairly new to the group and I can tell you, everybody here, is here to help. It's wonderful, and I think you will learn a lot and really enjoy it. I have been taking the Benlysta for about 8 months, and have had fairly good luck on it, so far.....although I have experienced that about the week before my next treatment I go into a bad flare. I saw my doctor the other day, and he is going to talk to the drug rep, and see what feedback she is hearing. I have a good friend that is new to the Benlysta, and she has experienced the same as me the week before. When you feel so overwhelmingly exhausted....rest, rest and rest some more. You need to find what's best for you. But ask all your questions. Make a good relationship with your doctor, that's very important.... Good luck to you.
Welcome to the group Heather! We are all in the same boat, but life does get better and of course we all have bad days, but continue to have FAITH that you will get better and better with God's help. I constantly tell myself everyday ok "self" today we are going to have a good day I will make it through work today without being tired. I just command what my mornings, days and evenings is going to be like and if I have to stop and rest a little it's ok but I don't let myself stay that way I push and push. I'm just determine to beat the disease and not let the disease beat me. I hate laying around and not being able to do outside activities with my grandbabies. So I'm doing a brave thing my husband and I have booked a vacation in Florida for our family for next week and I can't wait! I'll let you guys know how it goes when I return. Continue to keep the FAITH Heather!
Carol
HI Heather, welcome to the group! I am sorry to hear you are struggling. I think we all have those days (weeks, months) that we just don't feel our best. I also work full time and I am to the point where I am not sure how much longer I will be able to continue. I have been on the Benlysta treatment for about 8 months now and to be perfectly honest with you, I am not sure it is working as well as it did the first few treatments. I decided to skip this month's dose to see if I have any change and so far, I have not noticed anything and I am a week past my regular treatment date. I am not saying that it won't work for you I truly believe all of us are very different in how we react to all this medication they throw at us. Also, as bak, stated, don't be afraid to ask questions. When they want to try something new, ask about side affects, ask about drug interactions, ask how it will affect you during the day. Will it make you sleepy, hungry, irritable, etc.? I have also cut my medication in half because the dosage didn't quite work for me. I would never suggest you do that. I have always discussed that with my dr.first. Don't give up trying Heather. I hope you find what works best for you. Stay strong and take care of yourself. Hugs!!
So glad you joined a support system. This site has helped me a lot. I’m also new and even though I don’t know these people I can relate to everything they say. I go for my third infusion of benlysta on Friday. So far, my side affects have been cold sweats, freezing and can’t get warm, fatigue, headache. I have been in a flare now for four days. I’ve slept two days and today have only enough energy to be on the computer. I understand how u feel. I’ve had to cancel two fun things and that sucks but I have to listen to my body
Hi Heather welcome to the group don’t worry I’m the same way have so many questions don’t know where to begin. On my case lost weight so fast was down to 98lb that really hit me hard the lack of energy and fatigue is hard sometimes but do have very good doctors having a healthy diet doesn’t help with wanting to gain weight so I wanted to know do you ever get back to your normal weight again? I tell my DH the last time I weight that I was 12 but he tells me that it doesn’t matter that as long as I am doing better and aren’t in excruciating pain as before that’s what’s important. I do thank god everyday I wake up without as much pain and am able to be with my dh and kids just wondering what I could do to gain some weight since I have to eat so healthy and honestly fast food and fattening food makes me sick and makes my stomach turn as well
I unfortunatly have the opposite problem it doesn’t seem to matter how healthy I eat I am gaining weight my doc says it is normal with the high dose of steroids but it is pretty depressing to be sick and fat. I wish I could give you advice on how to gain weight back I know sometimes that can be harder than losing it but unfortunatly I don’t know sorry hope you find something that works for you 