Hi everyone, I've posted a few times here the last few weeks about this horrendous lupus flare I'm stuck in.
I have a few questions about hydroxycloroquine and other people experiences, I'm just trying to work out if theres a pattern and make sense of it all!
I started with terrible lupus fatigue, feeling very unwell, fever feelings, constant migraine and nausea 10 years ago, it went on and on until I was practically bed bound for a year with no idea what was wrong. I was eventually diagnosed with lupus and put on hydroxy and over a period of about 4 months after I started taking it all the symptoms pretty much went slowly away and my life became almost normal again apart from the odd up and down flare, the longest maybe lasting a month of low level lupus symptoms.
The past 3 months however I have been slowly getting worse and worse, all the symptoms are back, the fatigue, fevers, feeling exhausted, having no energy. In the space of 3 months my life has gone from working 2 jobs, going out with friends and family regularly, going swimming every other day, going on long walks and trips out in the country with my partner to being completely house bound again. I've had to quit my jobs, and can barely manage a small walk to the corner shop or the charity shop down the street. I cannot understand at all why this is happening and why lupus is suddenly so so so bad again. Ive not stopped taking hydroxy for 10 years and it has kept me well all of this time. I am so devastated that this is happening I can't put it into words.
Has anyone else been through something similar where symptoms that had been in remission for years and years suddenly all started up again for seemingly no reason? And why is the medication thats worked so well for me all this time suddenly seeming to not work at all? Is this something anyone has had any similar experiences with? I'm obsessively trying to figure out why and what I can do next to get it back under control.
The only difference is this time I am covered head to toe in a rash (there are photos in my last post) which I didn't have the first time around. Rhuemotologist says its a lupus rash, but Im wondering if maybe its an allergy instead and something I am coming into contact with is causing an 'immune response' of some kind and then its just snowballed and lupus has kicked in again as a result? Does anyone have any kind of experience with that?
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SarahLuna
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Hello sarah: just read your rash post...gosh, you poor thing...seems to me you are possibly in a really nasty lupus flare...and hydroxy isn’t any longer enough to damp it down
Others here are more experienced than i am, but maybe my story can help you see a way forward:
for me the first 5 years on lupus meds after diagnosis were about me & my rheumy getting to know my version of lupus and watching it respond + try to outwit my daily lupus meds. At first i was on hydroxy 400mg alone for over a year, which helped only so much...then my rheumy added 4 week 10mg pred tapers to treat flares more or less like the flare i suspect you’re having now. Meanwhile i had bad rashes that needed treatment with prescript topical steroids - eventually these were diagnosed as due to small vessel vasculitis. Then it wasn’t long before we realised i also needed to stay on 5mg pred all the time to prevent flares, which damped those rashes right down too. Eventually we decided i needed more help, so instead of increasing my daily pred we tried adding on daily mycophenolate 1000mg. That combined therapy treatment plan (hydroxy + pred + myco) got my condition much more stable, & with more stamina + resilience + cognitive function than i’d had in decades (it had turned out my lupus was infant onset)...there is more to tell, but that’s probably plenty...the point is: 8 years after starting on daily lupus meds, we know my version of lupus quite well and how to manage it...so far...
SO, my feeling is that you & your rheumy need to talk asap: your flare needs to be assessed & your lupus treatment plan reconsidered.
I hope something in there helps..am sure you’ll get great replies that really help
PS the rash in your photos looks a lot like the hyperreactions i get to all sorts of things: from hot weather to sunshine to topical HRT (full body rash that went away as soon as i stopped applying the HRT cream)
I can only imagine how upsetting it is to have been in such good control for so long and now finding yourself debilitated. I am wondering if you need to be very clear with your rheumatologist regarding your level of functioning. Your labs may be looking good and your doctor is hesitating to put you on prednisone because of the side effects. I agree with Barnclown that they may need to change your medication. Things are much clearer when a patient has organ involvement with flares. My cousin is put on prednisone immediately with her lupus flare and lung issues. But you are less clear cut. Get an appointment with your rheumatologist and ask if a dermatology referral would be helpful. Ask your rheumatologist if they would consider a medication change. Hoping things start getting under control. Keep us posted. K
Just want to add that “being house bound” is significant. I have never been given prednisone for fever, rash and fatigue for undifferentiated connective tissue but I was still getting out. When I could not leave the house with autonomic dysfunction, I was given a medrol pack. Just confirming that housebound represents a more serious level of functioning to a doctor.
Thank you for your replies everyone. I have been to the rhuemotologist and he has put me on prednisone, I was on them for a month last month and when they finished the rash came back, it had cleared for a while but all other symptoms were still there, so he put me back on them for another 6 weeks last week. I can't tell at all if they are helping the fatigue and fevers as they come and go up and down so unpredictability I can't find a pattern at all. I am getting very very down and it isn't helping my positivity in trying to look forward to recovery. I'm just so terrified of staying like this or getting worse that it clouds my ability to cope with it this time around.
As much as others can, many of us here are reading your sad reply and deeply understanding + feeling for you sarah... lupus diagnosis & the treatment process really are often, & almost always, extremely hard to adjust to...to me it’s really really good you’re here sharing your fear & distress: we’re here for you...and we do truly care - over the past 8 years when i’ve felt as you’re describing, forum friends have basically saved me and helped me find how to best cope with all this lupus life.
I’m not sure where you live, but if you’re in the uk, maybe think about contacting your local Lupus UK support group - if you haven’t already. My local group has been as much help over the years as this wonderful forum. Here is a link to the Lupus UK website support group finder:
Take care sarah...courage...things really can & will get better...i know because things have got incredbly better for me and for many of us here ❤️🍀❤️🍀❤️🍀
I certainly can see why you are discouraged. You really need to tell your doctor that symptoms came back as soon as your prednisone was finished. This is important information. There is not always as easy answer but this is what rheumatologists do, and he may have to try something else. Really feel for you. K
Thank you. I'm in Leeds. I will have a look at local support groups, maybe they will help lift my spirits a little.
I have been back to the rhuemologist and he said we would try another longer course of steroids and then if I was still struggling after that look at other options. So I know he is trying to help and is aware of the situation, it's just hard sometimes to not worry and wonder what if and why etc etc. Thank you for your kind words, they are helping me feel slightly better this evening
Good! Am glad your rheumy is stepping up...this is great: not all rheumies respond this way. you’ve reached out to him exactly when you needed his attention most...and he has shown willingness to try to help rethink your treatment...this is how my rheumy & i began to figure me out, and the same goes for so many of us here. It’s a collaboration: well done to you both!
Try to keep taking this one day at a time as you try any treatment changes...& keep snapping these really good photos of visual signs & symptoms: all this helps you & your rheumy..it’s so easy to gradually loose track of what these bad things looked like, how they progressed or cleared up etc. And keep making a few notes on how you respond to specific treatments, what is & isn’t effective in a “positive” way + any negative effects you experience: again, this helps you as much as your rheumy to become experts on your version of lupus. Anyway: all this stuff works for me & my rheumy + others here
glad you’re feeling slightly better sarah and i hope you’ll let us know how things go 🍀❤️🍀❤️🍀❤️
Hello. I have SCLE and Sjogrens Syndrome. When the scle first flared I was covered in a rash similar to yours and the culprit turned out to be a bad reaction to a prescribed medication. This seemed to leave me super sensitive to a lot of things and the main trigger after that was hair colour. Have you coloured your hair recently? It took me a while to realise this and every time I did my roots my skin really flared. I was referred to a dermatologist and I think this is who you need to see, and quickly. I was put on hydroxychloroquine and given dermovate ointment to treat the rash. Another thing is the brand of hydroxychloroquine. I find I can only tolerate Zentiva. Has your hydroxy prescription changed recently? More than three years on I have the odd patch of scle but my skin is mainly clear. I can’t dye my hair or sit in the sun, but apart from that I feel ok most of the time. The hydroxy has helped greatly with joint pain too. Hope this helps as it’s all a bit of a guessing game as to what combination of treatment suits you. I hope things improve for you quickly.
I cant really fault my rhuemotologist at all, he is such a nice doctor and he did say to me he was sure we could get this flare under control. Its just he cant answer some of my questions and i'm beyond sick with worry. My ANA was 1:400 10 years ago before I was on hydroxy, and then for the past 10 years it has been negative. (occasional very weak positive, but mostly negative) he repeated it again in october and it was still negative, even though I was starting with all they symptoms again. Rheumotologist said that it didn't matter it was negative and to treat the symptoms like a normal flare up. I still dont understand why the result is negative even though I feel so so unwell. I keep worrying that what if all this time the rotors have been wrong about it being lupus.
Does taking hydroxy cause your ana to go negative? could that be why its not risen again?
Barbara17 I can only use zentiva too! If I use any other brand for more than about 2 weeks all of my symptoms come back. I've tried other brands twice now and both times it happened so I dont chance it anymore and only ever use zentiva. But it seems now that isn't even working anymore?
Can your lupus get 'used' to hydroxy and after a while and stop responding to it so well?
As far as hair dye, I do dye my hair, and have done for years without it being an issue, but the last few months I've not actually bothered to dye it anyway due to feeling so unwell.
The rash and my skin isn't really my main concern as I can live with that, if it was just that, but its the absolutely awful way I feel, I feel so weak and ill I don't think I will be able to get out of bed today, I can make it to the fridge and back, and the bathroom and back, but that is about all.
Hang on in there Sarah..u have seen your rheumy n he's put u on steroids again and for a bit longer course so that should help..I agree that a referral to dermatology might be in order to address your skin issues
I am on hydroxy, prednisolone, and now ciclosporin to suppress my immune system..this has helped with fatigue n joint pains but my skin is still flaring up..I have SCLE!!
As barnclown says u n your rheumy will formulate a plan together n find the best treatment combination for u..however u may have to have other meds that aren't easy to take n experiment with different combinations before u find the right treatment that works for u. Then hopefully u can get some quality of life back.
Be patient n try not to worry too much because stress will make u worse..try to be a positive as u can even if it doesn't seem like much it will give u a little boost..as your resting up at the moment maybe play some relaxing music..I've been playing sounds of the rainforest with pan flutes..or Celtic music..enchanted forest..they really do help me to chill out..and remember u are a warrior and it's at times like these that we have to be at our strongest xx
Thank you for the replies. My mum came and took me home with her today to help me a bit as I can't really look after myself very well anymore.
The steroids, I think it may be the steroids, seem to be making me feel worse. My whole body is shaking I can barely hold myself up, I feel very spaced out and far away. I can't remember lupus making me feel this way before, I don't know if it's lupus or the meds
Hi Saraluna, You have gotten such excellent advice from all these previous people. I have been on hydroxychloroquine for Five years and I still have breakthrough flares. I’ve also been on 5 mg of prednisone every day for the last five years, mainly because I’m allergic to all the NSAIDS. The only thing I can really add is that my rheumatologist here in the US said once you have the positive ANA and positive auto antibodies and the symptoms that go along with lupus, you don’t ever have to have the ANA or the auto antibodies done again. The reason is is that sometimes they will be negative and you can’t measure disease activity by the ANA. Sometimes they’ll do a CRP or ESR to see if you have inflammation in your body. My rheumatologist says once the diagnosis is made, then you should be treated based on symptoms. He is an older gentleman, and he said the problem he runs into is some of these younger rheumatologists will tell patients they don’t have lupus after being treated for it for 10 20 30 years. He says he’s seeing heartbreaking cases, we’re people lost their treatment because of this. So I would say you’re lucky you have a rheumatologist that understands this. I hope your steroids kick in, and you feel better soon. Take good care of yourself. Nan
Thank you for you reply about the ANA. It's been reassuring.
This is the part I am obsessing and worrying about the most really.
In the past it felt more black and white, I had terrible fatigue, exhaustion, brain fog, nausea and a high ANA so they were quite quick to say it was probably lupus.
This time the symptoms feel pretty much the same but my blood work is all totally normal. I have this absolute fear that this is something like CFS/ME and they were wrong last time about it being lupus and it was just a coincidence that the symptom went away with I started hydroxy.
Or is it possible that being on hydroxychloroquine for years can cause the ANA to change and that would be why it is negative? Or is the ANA going back to negative just something they can't explain?
Anyway I know I'm just asking loads of jumbled questions no-one can fully even understand, I don't mean to ramble!
Hi SarahLuna, I don’t believe there’s any evidence that hydroxychloroquine can make your ANA go from positive to negative. Do you know if you had any other auto antibodies that were positive such as anti Smith, RNA or DS DNA?
As far as I know the rest were negative. All I can remember is my ANA was 1:400 in a 'speckled' pattern. But that was 10 years ago. Now all they said was the ANA was negative. I don't know if they have done any other tests. it's so confusing
I think in the past the I had a dna test which was negative but I'm really not sure. I need to ask. I'll try write down a list of questions to ask next time I go
Usually if the ANA is positive, it automatically triggers the lab to do the other auto antibody test. I’m sorry you’re having to go through this. Many of us have been through similar. It took them about 15 years to diagnose me. I had symptoms off anon but never any positive labs until 2014. I wish the best for you in your journey. Xo Nan
Thank you for your advice. You've all been so lovely and helpful. I will keep fighting through! 15 years is such a long time it must have been such a relief to finally get a diagnosis! X
Hi everyone, thank you for the replies, the advice I've gotten here has been such a good help.
I've been at my mums all week. Some days I've not been well enough to do much other than watch tv. Yesterday my boyfriend came over and took me for a drive into the country which was nice.
Today has felt worse, my legs are so weak and shakey I can't really walk. I'm really very worried about this. I don't know how normal it is? I am very very upset so I know that makes you shakey, and I'm on 30mg of prednisolone so I am wondering if that is making me feel unsteady on my feet?
My rhuematologist has referred me to a neurologist and for an MRI. I had all of these tests done before when I became ill last time and they all showed nothing, so I'm not holding out much hope for them finding anything this time.
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