Hi everyone, i am back in hospital because i have a terrible flarup. i just started a belimumab treatment and had 2 courses of it then i began to have rashes allover my body. itchy and red, d rash is more on the areas covered with cloths. my ankle started swelling badly once my leg steps on the floor. my leg gets hot, red, swollen and really painful. i stopped my steriod a year ago, changed my diet abit and lost weight. i weighed btw 119-120kg last yr but now i weigh 101kg. my tummy and waistline has reduced.
My consultant told me he has run out of options. my lupus is overactive and am not on enough meds to calm things down. am on methrotexit but my bloodcount keeps dropping(am neutropenic). he said the belimumab will take awhile b4 it starts working so only steriods could kick in quicker. they thought of injection but since i ve multiple joints inflammation it cant happen. So i have been placed on 20mg steriods since yesterday and am worried sick of gaining the weight i lost. Am also worried about my knee and ankles. i got AVN bcos of steriod, in may this year i had core decompression of both knees and ankles. I feel horrible i am still walking with a stick after my surgery, i hope this steriods wont make it worse again. I have been asked to keep my leg up and try not get my skin cut bcos my skin is over streched by the fluid accumulation so it is really thin and sore. I am also on water tablet to help shift the fluid (am peeing alot). Lord help me. Pls does anyone understand what is happening to me. Help me make sense of it all
Xxx
Ije
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ijeasike
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My dear Friend, I am unable to advise you, such a dreadful time you are having. I do hope things settle down soon for you. A lot of your weight is fluid so please do not think of yourself as very overweight. The steroids will speed things up for you, it is the hunger that comes with them that might encourage you to eat,but forearmed is forewarned! This a challenging time & so so painful. Wish I could say something to alleviate your anxiety, but sometimes swelling is very severe in lupus. I know that because I am very swollen, particularly legs & joints & have put on so much weight, yet the dietician says "I must not not think of myself as overweight, rather it is part of an illness.. Please do not worry about using your stick, if it is of any benefit at all then it is essential. I have a rollator which I need, I have tried to see her as a friend & have named her 'Susie'. All the family call her Susie and see her as an appendage of my life. However Susie has managed to run over a few toes whilst out with me, I have nothing to do with it!! I'm sorry if I seem frivolous, I do not mean to be. ijeasike. I am thinking of you, your Dr, can explain more why the fluid is gathering & how Lupus is causing massive inflammation in your body. Probably your skin is too tender & fragile for elastic socks, I have resorted to these all the time. Putting your feet up helps the blood vessels to drain the fluid a little better & it protects your skin. I wish I could say so much more to help & reassure you, but honestly I just do not know enough. Some people on this site are very knowledgeable and will be able to explain things much better than I. I hope you will receive more exacting answers. I am thinking of you, & I so hope that you notice a little improvement. Take good care of yourself, Lupus is a hard disease to make sense of & it affects each person differently. Be as kind to yourself as you can, have you help? I am so sorry that i could not give you any more help, however I am thinking of you & I do understand your anxieties & your great hope for progress, improvement and an understanding of what is happening to you. Again I am thinking of you. Peace and Love Pixiewixie
Thank u for ur kind words. i hv decided to take the right step. if steriods will calm things down then i will ve it. my consultant said they will try and take me off it as soon as possible. i have been asked to keep warm and put my feet up. i closed the curtain in my cubicle to be warm. I am sad i must say, trying to see d brighter side of things but it is not forthcoming. thank u again for ur thoughts. Takecare , God bless..
Hello! Big hugs to you - sounds dreadful. I really hate steroids and am having a fight to come off them myself at the moment, but your body sounds in crisis and may well need the help they can provide. It's a cruel disease and we fight so many different fights with it, sometimes we have to give in a bit and accept a step back so we're then in a position to eventually take several forward again. Just a thought - could your latest symptoms be a reaction to the belimumab? I had bad reactions to azathioprine soon after I tried it and the consultant tried to make out it was a lupus flare. Luckily I've had lupus for so long before the doctors got involved that I know what a lupus flare feels like in me and my reaction only happened the two times they tried me on aza. I never really convinced that doctor, just refused to take it again and changed to another consultant.
It's so hard to work all this out, especially when you feel so ill but remember that you will get through this and the rest of us with lupus understand and care.
I am trying to accept that step backwards. so i am taking the steriods and they also added a water tablet. yesterday felt better but 2day my pain is back. especially my arms, my mouth. sore to chew from all corners of my mouth. i couldnt brush my teeth bcos i am is not strong enough to hold d brush and my mouth is too sore too. a nurse helped open d bottle of mouthwash . i couldnt handle d pain either. Pain is a symptom we cant get used too. i am greatful i have good drs that look out for me. i had a visit from my consultant 2day. he said being on the steriod will help put me back on the methrotrexit and belimumab will work better to calm things down. the might consider giving me another flolan infusion b4 i go bcos the weather is cold. thanks for ur replies. take care and God bless
Courage dear ijeasike...am so glad you've got these thoughtful replies...not much I can add except to say that I think you're doing a great job of coping with all this...you may not feel as if you are coping so well...but my feeling is that your awareness of this set of overlapping issues shows a lot of knowledge about your lupus and its treatment ...and I think this sort of awareness goes some way to helping us cope during toughie crunches like the one you're going through...I hope you're giving yourself a gentle pat on the back for me. You have what this takes...eg you lost all that weight: a big achievement! Try to believe in yourself and use the personal skills you developed while loosing that weight....take this step by step...and please keep us posted on how things go...we're right by your side ❤️👭👭👭👫👬👫👭👭👭❤️
am vvv glad your consultants are trying hard to understand your problems...you haven't said whether your clinic have a specialist nurse? If yes, will you be able to phone her: these nurses are trained to help us understand our treatments & symptoms + how best to cope with so many issues all at once. I very much hope belimumab begins to help you soon
My clinic is in Manchester royal imfirmary. they ve nurses but i ve seen them just twice in relation to methrotexit , am always seen my consultants more. the nurses only have my time when the want to get me involved in a research on biological therapy. i have been put on water tablet too and it has helped with draining the fluid and i am also putting my feet up. i felt abit better yesterday but 2day am in alot of pain. my mouth is so sore i cant chew. i was meant to ve fishcake for lunch but it was agony trying to eat so i got myself a carrot cake and a drink. i couldnt brush my teeth i had to beg a nurse to help me open my mouthwash to wrinse out my mouth. my mouth couldnt stand d pain from the mouthwash either. i ve got some prawn cocktail for supper just incase i cant eat what is served. thanks for ur thoughts. God bless
I am So Sorry you are having all this trouble, All I can say is one time I was Allergic to a new drug I was given 2 injections in bum 500 mg each cheek, when body settled a few days I was put back on to 7mg prednisolene daily,sorry the injections were prednisolene.xxx
A lot of the weight associated with steroids comes from fluid retention - the water tablets you're taking should deal with that anyway. Secondly, it's the increased hunger - feeling hungry and not full no matter how much you eat - and the increased amount of food ingested as a result. Just try and remember that despite being hungry, as long as you eat a plateful three times a day, that's fine, so try not to give in to the craving and eat more.
About your rashes etc - that sounds very much like reaction to the drug, have they put you on antihistamines?
I'm not sure why you have the unbearable pain - hopefully it is another side effect of the drug that will soon calm down once your body gets used to it. Let's not forget how potent these drugs are.
If this drug hasn't worked, have you been offered Rituximab?
It must be dreadful to be in hospital and have no answers.
I ve had ritoximab b4 but i stopped cos my i get neutropenic. my fear is resisting d urge to eat. waiting 2 see my drs today and know the way forward. thanks alot and God bless.
I have been discharged and my treatment plan is 20mg of pednisolne, 40mg furosemid. i had a chest xray in line of starting methrotexit by next week. i ve d 3rd infusion of belimumab on monday too. They said since my stay in hospital my blood count has increased making it the right time for methrotexit. Hopefully if these drugs kick in i could be taken off the steriods. The swelling in the ankle has gone down. I ve also been refered to a Jaw specialist & dermatologist . i cant open my mouth without pain in the TMJ. They hope i ve not gotten AVN in my jaw too (i pray not). i am sticking to soft meal cos my teeth are very tender while chewing and swollowing is still painful. All in all, i will try to keep warm, take my meds and pray. I need a holiday but with the state of my health i cant plan anything (it makes me sad). Thanks for asking . Take care and God bless
👍👍👍👍 hang in there my friend: sounds like a vvvv good plan of action. Please know we're with you in spirit...hoping for news when you can pass it on. You've made me laugh 😆...I know, let's go on holiday together 😉...at least we can close our eyes & imagine🌟🕊🌅
Exactly 😅😅😅😅 imagine looking out through a beautiful view with a glass of wine or anything u fancy. The most important part is to have well made beautiful food that my mum doesnt have to cook. she needs d holiday more. 😆😆😆 i will keep dreaming. 😙😙. God bless
I am so sorry to hear that you are having to go through all this and that you are feeling so poorly.
If you are concerned about side effects from steroids, and the possible implications for your other conditions, then you might want to discuss this further with your consultant to get more information and put your mind at rest.
Keep us posted on how you get on and I hope you will be able to leave hospital soon.
My dear ijeasike How are you doing? Like Barnclown I am thinking about you & wondering how the meeting went with your doctors? I hope there has been even a very, very, slight improvement with you & a little bit of anxiety has been diminished with their answers. Peace & Love Pixiewixie xx
I had a good day yesterday and i was even able to drive from bolton to manchester to get my discharge letter. I got home by 4pm with the pain creeping in. I had some beans for lunch( it was a late lunch). Everything seemed ok, i took my oromorph, asked my mum 4 help to unstrap my bra. My wrist started hurting it felt as if it was buldging out. As the evening went by , i noticed my lips started swelling up, my palm was swelling with my entire finger couldnt bend. in minutes i became very sick so everything i eat came out, i was engulfed in pain and could barely move. My mum helped me into bed, i couldnt pull the duver over myself bcos my hands cant hold anything. I had to call my mum in d middle of night to help me to d toilet. i couldnt put my gloves on, i needed help, my jaw feels as if it constantly moves painfully when i try to open it or chew .
My body starts shotting down from 4pm with deep pain allover the body. i had a quick read of my discharge letter and they are investigation connective tissue disorder.
i will see how things go with my treatment and see if my lips go down. my lips looks as if i have an allegic reaction it is so red,puffed and uncomfortable.
☹️️ Am so sorry...this is a big reaction...I hope you'll let your doctors know about this soon today? Am so glad your mum is there and can help. Take care ijeasike 🍀😘
I am so sorry youare going through this Hell! All You can do is Research your meds and I am under The Lupus Unit St Thomas hospital London.Please Please E/mail ? Phone .They are The Top people .Drgraham hughes (I was under).I believenow has a PrivateClinic in Harley streetTry Try them Please.DontAllow this Disease to Beat You.You Beat it.
I was on a life support machine and had 28 cm of gut Removed, Family told I was going to Die.
But I Beat it.Kids called me Wonder Woman, so please Fight, god bless !!!!!.Normaxxx
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