Hi I am a 26 yr old female and I was diagnosed with SLE Lupus and FSGS a kidney disease at 18 in 2016.Recentley diagnosed with Sjogren's... I took high doses of Prednisone and Plaquenil and it put me into remission for about 7 years. I recently was hospitalized for swollen legs and ankles again and it seems I am sick again and will be put back on high dose steroids and the Plaquenil. I am very scared to take these meds again and I am unsure what to do. I feel very alone as none of my friends or family has any clue what Lupus or any of these meds are. Doctors say I'm noncompliant but I am just scared of the side effects and just want to make sure I am doing the right thing for me and my health. I am also afraid that even if I attempt to try the drugs they may not work for me like they did last time or I'll get some weird or deadly side effect.. My Rheumatologist is suggesting adding Imuran (Azathioprine) but I am very hesitant to take an immunosuppressant/anti rejection drug... I feel very alone and would just like to hear other people's stories and see what everyone has to say and how they deal with and treat their Lupus or nephritis. Thanks all,,,, 😢
Lupus SLE feeling alone - needing some support or... - LUPUS UK
Lupus SLE feeling alone - needing some support or advice
Amber, I'm sorry you're going through this; I suspect the sense of a lack of support or understanding is commonly felt amongst us all here.
I wouldn't presume to tell you what to do re your suggested meds, I can only suggest what I would probably do. As the drugs had previously worked, giving you seven years without flares, I would definitely try them again. What a great run you've had, I would be feeling very positive that they'll calm things down again. However, if they don't, they can then try something else.
I've been on Mycophenolate M, which is an immunosuppressant, for a few years without problem. I felt anxious about starting it but have the philosophy that I can't know whether something will work unless I give it a go. I'm having a dodgy spell at the moment but I feel sure things would be worse without it. Flares are fewer and less intense.
I'm also taking 400mgs of Hydroxychloroquine and instead of daily steroids I have regular Depo-Medrone injections which help a lot.
Yours docs are suggesting that you're being non-compliant, could you ask for a chat and just explain how you're feeling just as you have to us here? They will already know how scary all of this can be. Sorry, you may well have done this already.
I hope you get some helpful replies here.
All good wishes to you.
I have chatted with my Rheumatologist many times and she told me that I may need to switch to someone who is more "heart to heart" and is a bit stand offish but I understand that I can't expect everyone to be so compassionate all of the time, even though you'd assume a doctor might find a little compassion. I am trying not to be a bother and take my medicines but it feels like these doctors don't care or consider how hard these choices/decisions are. Taking meds with scary side effects is a scary thing and I don't feel very acknowledged but I am trying to just be compliant and take them. I have started the 400mg Hydroxychloroquine and the 40mg Prednisone and I am waiting to see if that helps before starting the Imuran. That may be silly but it is the best I can do, I am trying to give this my best I really am... I am very afraid of the immunosuppressant but if the Plaquenil doesn't work than I would be open to trying the immunosuppressant.. maybe that is not very smart but I feel like it is the best I can do right now with all of this fear and health anxiety. I might also try the Saphnelo infusions but even that is scary for me lol. Thank you for your response, it feels very nice to not be completely alone... thank you. 😀
Hi Amber
You are not alone, linking to this post about hydroxychloroquine, that also mentions the other treatments.
I have a second-hand copy of Dr Donald Thomas' The Lupus Encyclopedia which is really good e.g explaining rationale for each drug choice, and explaining benefits versus risks. A lot is about how and when used.
Knowledge is power.
healthunlocked.com/lupusuk/...
Thank you so much for this, I will check it out. I appreciate the response.
hi Amber, I know you are worried about the immunosuppressants and can totally understand why. It isn’t very helpful wording calling you “non-compliant” either in my opinion that sounds quite dictatorial. Doctors should have empathy and listen to patients concerns. However we know not all are equipped with this sadly. I have lupus and have managed well on lower meds than you but now I have some kidney issues. All I will say is my daughter has crohns and has been on immunosuppressant infusions for some time. She gets on very well with no side effects and has an infusion every 2/3 months if that helps. Hope you get more support I suggest a change of doctor might help too.
dear Amber I’m so sorry you are going through all this worry and ill health. My only advice is to trust your doctors. They would not prescribe these meds if they didn’t think them necessary. I also fret about the immunosuppressants I take but I am sure they must be helping in some way. It is normal to be anxious but you are not alone. This community will always listen when you feel alone. Try to explain to friends and family- order some free leaflets to help them understand from the Lupus charity.
stay strong and take care of yourself- I’m praying that you will feel better soon x
Hi Amber, I can totally relate as I also have medication anxiety and feel reluctant to take new medication. I will say in your case since you've taken some of the medications before, you're unlikely to get allergic or hypersensitivity reactions taking them again. With hydroxychloroquine there's some concern around long term use and eye problems but these crop up after many years of use and high cumulative dose and there are measures in place to detect these early (eye tests etc).
I think it's also important to point out that not taking medication is not exactly the "neutral" option and can have effects too. For example, you could be depriving yourself of an effective drug which would better control the lupus and prevent flares and ongoing organ damage, especially since you mention you also have kidney problems. Kidneys are really important and you want to preserve their function for as long as possible. Azathioprine is one drug that's prescribed for people with lupus and kidney issues, mycophenolate mofetil is another. These are strong drugs but it's not quite the same situation as transplant patients as they usually take these meds alongside two or more other drugs which increases the immunosuppression. Both drugs are prescribed to many many lupus patients around the world and have good safety profiles.
I would discuss your concerns with your doctor so they understand the underlying issues around your "non-compliance". They might be able to help alleviate some of those concerns and suggest workarounds.
Hello Amber,
So sorry that you are having a flare right now and fully understand your hesitation in taking a pile of medication. Just wanted to say that I have been taking Azathioprine 125mg tablets daily over the past 26 years ( now 66) and have not had any issues. I couldn’t take steroids neither could I take Hydroxychloroquine, so azathioprine was a ‘gift’ for me. It does take a couple of months to work ( or to notice any benefit) so if you can come to terms with starting it along with the steroids by the time you have tapered off them it should be starting to work. It is necessary to have 3 monthly blood tests when taking azathioprine but I found that more reassuring than disruptive. Each of us reacts to medication in a different way but trust that azathioprine just may be the one which makes a difference long term for you.
Sending a gentle hug.
Gemim
My daughter has had lupus since she was 19 , she is 32 now . She has chronic kidney disease now and will eventually need dialysis and a transplant. She has had immuno suppressants which did put her into remissission of the lupus after a few years but once the kidneys are involved they gradually deteriorate. The drugs may make you feel rotten sometimes but the doctors are good at tweaking them. Please go with the doctors' advice otherwise you will be could get very ill. Wishing you the very best.
I took plaquenil for a few years (I'm 77) and found it suited me very well. I guess I was lucky.
I was diagnosed with mild SLE my son says in the 90s but I think it was later than that. I was unwell as a child and when I've looked back I'm sure it was lupus..
Had no idea what it was with a positive result from a blood test years later but was assured it wasn't life threatening and once on the right meds I began to improve with plaquenil. My gps had very little knowledge of the illness so they weren't much help at all. It was a locum/temp doctor that sent me off for blood tests.
I have sjogrens too, have had to learn to manage that as best I can as the drug, over here, didn't suit and it was stopped, there wasn't another one to treat it...really struggled with that and with coming to terms with it.
I didn't involve my family much as like you they had no idea what it was. I was on my own and I doubt thats unusual with this illness.
I've had problems with side effects and been hospitalised more than once because of them, I understand your fears. Fortunately they take more care these days with what they prescribe. Don't let them force you to take meds that scare you...on the other hand you need the treatment, its always worth giving them a try I think.
Plaquenil was stopped when a rheumatologist told me lupus was stable and had been for quite some time so I didn't need the pills any more....no one had told me up till then. I was seeing various rheumatologists never the same one.
Please don't feel alone there are people here that will understand and want to help xxx
Hi Amber, I’m so sorry to hear you are going through this—but I’m glad you found us!
‘Non-compliant’…ugh. What a horrible word. This is old language that health professionals used to use, and it’s sad to see some doctors still using it. They don’t understand that sometimes we are hesitant to comply, perhaps due to questions we have or confusion about the chosen course of treatment, or sometimes because of very real fears! In these cases, I often find it helpful to word my worries as questions: ‘Can you help me understand the side effects of this medication?’ ‘Can you help me understand your reasons for choosing this treatment plan?’ They sometimes respond better to this. (Not that it’s up to you to shape their responses; compassion should be a given!)
I can certainly understand your reticence about these strong medications. I myself have been very ‘non-compliant’ around these meds in the past! Although I can say that I have been on Plaquenil for a few years now, and it has been so helpful. I’m glad this drug exists! Do you have any particular worries about the meds, eg. bad side effects in the past, or are your worries more about the worst-case scenarios?
Hope you can find a treatment plan that works for you 🌻🌈
HiHave you joined your local lupus support group? If not get in touch with head office lupus UK. They should be able to tell you where it is and if they have a young lupus contact that you can talk about various things that they may have already gone through themselves. When I was 1st diagnosed with lupus talking and meeting others proved to be invaluable for me.
Also, at your rheumatology department do they have any specialist nurses? If so you could maybe discuss different treatment options and side effects and how you feel about them. I have been on various medications, including high dose steriods, but the worst part was the immediate weight gain and it also affected my heart. It is just trial and error to find the best treatment for you. If you are put on Hydroxychloroquine ask to have regular monitoring at your local eye hospital as I have now got toxic retinitis from them l.
I hope that you do get in touch with your local support group as we are and still going through various problems with our lupus and it's good to be able to talk to someone else going or gone through similar situations as your self. Also there is always someone on here to help answer or to have a moan to some of your questions, but unable to give actual medical advice. I hope that this is off some help to you as I think that you need support in dealing with all this as illnesses can make you feel very lonely.
hi amber sorry to hear you are going through this and hopefully you can get yourself back into remission. i honestly understand with the doctors i feel like i’m just a number in the queue, they don’t take on the mental impact of lupus and the medication, not to scare you but i was on steriods and methoxate for my lupus which involves lupus kidney too apparently according to my last appointment. methroxate stop working for me after 2 years causing blood issues (low platelets etc ) i was offer IV infusion rituximab this year 2024 in july. after the first infusion my body had a delayed reaction and i end up in ICU for 5 days this has scared me so badly to try any new medication. in recovery was offered azathioprine (only been on this a few weeks) which i only accepted because it was an oral drug not infusion i’ve had a few panic attacks when taking medication but hopefully things will improve for me. i’m taking steriods along side this and hydroxychloroquine. if you need me to tell you more about my story let me know. but hopefully we can get the lupus under control 🙏
Could be Lupus or DILE - newly diagnosed and feeling devastated. 
Desperately need advice - stuck in a rut with CNS Lupus
Lupus or anxiety?
Needing advice?
