LUPUS UK

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What medication do people find most helps their lupus ? Can no longer take HCQ

I've given it a good try with the HCQ, no doubt it works as well, but for me with lupus brain damage, traumatic brain injury and a previous brain haemorrhage setting off seizures last year, as many of you know, the HCQ is unfortunately causing too many seizures by reducing my seizure threshold.

After stopping my aspirin as well, due to haematemesis and stopping my antiepileptics as they were unfortunately are setting off my familial SCLE as well, I am finally feeling a bit more me. So sadly this combo 😔 just isn't working at all for me. I know many tolerate these things just fine, but sadly not myself. 'unlucky chuckie' like my old nickname suggests haha.

I am going to try to speak to my rheumatologist again, who really isn't being helpful, and ask to try some other combination of medication. Again she fails to understand the true nature of 'my' lupus, nor acknowledge when 'i know' it is flaring, irrespective of a simple blood or urine test (which isn't ever done anyway).

I know that I very rarely have a positive ANA, I know that my ESR and CRP are always normal. For me, vitamin d is the best indicator of how well my kidneys are working, and for me, I have hypocomplementemia, and leukopenia, lupus anticoag etc. I have a genetic mutation of TREX1,I was essentially born this way and puberty threw me under the bus 🤣

So I really do want medication to help my lupus, which is obviously active when looking at me simply. - so I was hoping for personal opinions about which meds people have found to be the most helpful or in some cases life changing. So that I can make a clear plan moving forward, and convince the rheumi on the way 😜☺️

Thankyou fellow Lupies. Xx

Lottie

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LottieLou96

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Hi Lottie sorry that the HCQ is causing your seizures , sounds awful what you’ve been going through - I’m on methotrexate and have been for last 5 years, luckily I tolerate it very well and have no side effects what so ever although I do still get flaire ups from time to time - sending big hugs to you 🤗🤗

Heya there 😊I'm glad the methotrexate works well for you, and side effects minimal to naught for you.

It's good to get some personal experiences, and decide how to convince my rheumi to try something new.

🤗🤗 Thankyou x

Hi LottieThat’s a lot to deal with. I too do not have a positive ANA and my bloods show nothing when I know I am flaring. I like you can only go by symptoms , my rheumatologist did not listen to me sadly for 3 years , but with support I changed rheumatologist that helped me!.A weight of my shoulders.A sympathetic doctor is really important, dealing with auto immune is hard enough. And after trying azothiaprine, and methotrexate i am now on 3000mg Mycophenolate daily. I really feel better controlled . I did have initial 3 monthes of side effects to deal with but what a difference it has made, maybe it would help you? I am still hydroxy though, take care and good luck M x

Hey there Maddy,

I'm glad Myco has been working well after you pulled through the initial side effects (hopefully they weren't too bad). It's hard isnt it, when they don't see you in person, and they don't merit clinical manifestations over blood tests.

Hopefully we will get there in the end, or I may change rheumi, as I live up north now, I was just hesitant wanting to start again, with a new rheumi, when they could be worse. None couldve really been worse than my first rheumi who caused havoc for yrs to come sadly. When I was 14/15yrs old, he would say that if I helped him with his lupus research, attend his conferences, be his guinea pig essentially, then he would start me on medication in return. He never did, he only laughed it off each time, and said that nothing exists that would work for me... Basically didn't try and really caused problems with me getting help going forward as he wouldn't send on my notes to any go or future doctor unless I would guinea pigs in some other dangerous trials and attend conferences as his example etc. Gives me chills recalling it....

👋👋👋👋😟That’s very disappointing re hydroxy. The trial & error treatment process is no picnic. My rheumy & I have tried never to trial 2 meds at the same time, to avoid clouding my reactions. And I continue this 1 new med @ a time thing with all my other specialist clinics.

🤔 you know our cases kinda/more or less 😉 have stuff in common eg childhood onset, CLE, neuro-involvement, sero neg for everything (due mainly to panhypogammaglobulinaemia aka Antibody Deficiency Disease, a type of Primary Immunodeficiency Disease), normal ESR & CRP except during infections & acute crises, below range complements & lymphocytes etc

So, who knows, but, for what it’s worth, maybe something about the daily combined therapy treatment plan that has had me relatively stable for 6 years can be useful? (nb this is the systemic meds only) took 5 years to get this combo right 🤷🏼‍♀️)…here in the order they were added in the course of 5 years:

350mg hydroxy + 10mg pred + 1000mg myco

have learned a lot here over the past 10+ years…but took me a few years to realise it wouldn’t have been unreasonable to accelerate figuring out this combined treatment plan, HAD I been more ‘forward’ about explaining why I needed more than just hydroxy….but, lucky for me, hydroxy helped so much to damp down joint, skin, fatigue probs that I kinda let my ‘defeatist’ side imagined nothing could be done to damp down my early onset progressively debilitating neurocerebral manifestations….when ACTUALLY they proved to damp down very obediently on the right doses of pred + myco

Otherwise, my rheumy has me on daily: 150mg sildenafil scleroderma protocol for severe Raynaud’s ischemia reperfusion injury, 50mg amitriptyline for neuropathic pain.

I’m lucky in that my rheumy has shown great trust in me. Reading your post has me shuddering: I do not like how your rheumy is responding to your case 🤦🏼‍♀️…hope you’ll continue to keep us posted

Hope something in there helps 💞💞💞💞 Coco

Thanks Coco ☺️ 💓 as always your help and knowledge is appreciated. X

I'm going to try again with my rheumatologist, but it's like trying to convince a pig to fly. I may need to unfortunately change if I can't get her to be a bit more open. Things aren't that simple. Unfortunately it's difficult when she is thinking SLE, and negating the childhood lupus issues.

Thank you sooooo much for a low down of the medications your on, and I will see, bc part of me just wants to settle for things as is bc of the trouble of it all. 😕

I've never had the best immunity, sick kid from birth haha, but I was the healthy sick kid with the bright blue hands and signature Malar rash, to me it was almost normal (even though in hindsight it wasn't), GPs just say your bloods are satisfactory for you, your normal... 🦓🦓 My liver hasn't been able to produce CRP ever, even septic it reads <1, so they should really pick up on it, and with the worst infections my WBCs become normal as they are usually so deficient. Never had a normal C3/C4 count as I say. And it was a running joke the amount of times I've had pneumonia, then legionnaire's, TB, ear infections and some odd eye infections that needed hospital treatment. Even the odd aseptic meningitis. I'm an odd ball haha. 🤣

But it would be good to have immunologist, or haem, and not just my rheumi input. And also as I've said in a reply above, rheumi's by nature terrify me, after the hassle previous ones in the past have caused.

Take two, soon. Otherwise I'll ask my GP to prescribe it, and see if they will. Doubt it, but it's better than getting 3 month's supply of HCQ every month!

Many thanks again Coco X

Lottie

👍 yep, makes sense. 🍀🤞✌️Good luck!

It’s great you’re here! you’re very experienced & a health professional: your take on this is very helpful to me & am sure i’m not the only one. Re immunology: have you ever had immunologic blood tests run, inc immunoglobulins G,A,M? Am thinking…well,, those repeated persistence pattern infections etc, are making me wonder - that sorta history helped immunology get a handle on my PID..

For what it’s worth: my rheumy referred me to immunology due to Bone Panel blood inc immunoglobulin results prior to starting osteoporosis treatment with IV bisphosphonates: when she saw the results, she rushed to run more bloods re myeloma etc while i waited for my first immunology appt.

Really m6 rheumy could’ve felt justified in referring me to immunology re low immunoglobulins: a few years earlier, when she took me under her care , she’d had a letter from the dermy i’d been with for years alerting her to my low immunoglobulin levels (my infections history + the fact these immunoglobulin deficiencies started before rheumatology put me on lupus meds, made clear that i had Primary, not Secondary Immunodeficiency)

💞💞💞💞

😂😂 Coco, 💖

You might be the only one who benefits from the ramblings of a Yorkshire lass.🤣

I appreciate the credit you give for my job, I always regard myself as the lowest, I'm not the most confident peep you'll see, but I do care.

I have had the Igs tests I believe, they were looking to see if they were elevated, and they weren't, I think they were low/normal (not sure). - there might be a reason for that 🧐🧐. My GPs always just says 'lottie it's your normal?? Not the most intriguing or helpful response.

Never seen a dermo , I know many have here. But they were pretty convinced I was the poster kid 😅 initially. Put off by the absence of +ve stuff, rather than the lack of important stuff. Kept making out I may have syphilis and HIV due to my complement levels and neuro symps. I'm like you must be jk 😕 defs not.

So we will see,but I don't see much happening , but I do know I need to change my focus, and get back on the wheels of hope. Nay easy sometimes, but even just stopping bad habits and driving myself into work and self improvement. All whilst going on a hiatus with these specialists that I can call directly from my hospital ED phone 😅 but I'm sure that could be frowned upon.

Take care 😘

Yup: I get it…🤷🏼‍♀️…we all say it so often, but it is what it is …& might as well be considered a 🦓mantra, yes? ie seems we need to suffer our manifestations progressing relentlessly close enough to acute for the health system to finally ‘attend’ to us…& even then, they’ll tend to just firefight individual body system issues (inc diagnosing what turn out to be secondaries) + emergencies without connecting the dots (for me, that added up to 40+ years in the 🦓diagnostic wilderness)

Please give yourself pats on the back + hugs from me: with me around, no one could ever get away even with hinting at any lack of respect for what you’ve achieved & continue to achieve as a 🦓 + a health professional (ie not even you 😉)👏👏👏💞🍀✌️

Dear Lottie, I share so many of your particular frustrations. HCQ, does not work for me, my lupus has affected my brain. What I’m really interested in is your comment about ESR and CRP being normal, when we know that lupus and other autoimmune disease are inflammatory by nature. I have repeatedly said to my various Rheumatologist on my journey for a diagnosis that I could not be the only person who tests normal for levels of CRP and ESR whilst obviously being inflamed. I also believe that I like you often test negatively for ana, and I believe that is the case because if you suffered from Lupus for decades then in the research that I’ve done it says that it’s likely you’ve lost the reactivity to this test. Yet time and time again I would get the response that I couldn’t have lupus because there were no signs of inflammation!! I have now been diagnosed officially but it’s been a 14 year journey.

Hope lottie doesn’t mind if I just say: am v much relating to your reply (read my reply, above, & you’ll understand)…& am v much hoping you’re now getting the care you need

although all my clinicians & i think my seronegativity is down to the combo of 68 years’ infant onset lupus inflammatory process going inadequately medicated until my 50s + childhood onset Antibody Deficiency Disease + natural age-related immunosenescence, even my HEROIC rheumy, (who figured out my lupus at our first appt 12 years ago), sometimes forgets i can’t make antibodies: eg earlier this week @ our 6 monthly tele review appt, I was explaining my Cornea Chief’s latest comments re how well my severe Sjogrens dry eye is responding to long term ciclosporin & she said, “but you’re seronegative for Sjogrens” …so I replied, “but of course, I’m seroneg for all my AIDs because I cannot/ have proven unable to make antibodies in response to anything”…so, she sighed & responded, “🤷🏼‍♀️Yes!” …. 😯it was she who spotted my immunoglobulins deficiency & proactively referred me to immunology, where they investigated intensively, eventually diagnosing Antibody Deficiency Disease

Well, my luck is to have FINALLY been taken in care with the right rheumatologist + to have met the right sorta official diagnostic criteria for all my AIDs despite the seronegativity… but, like you & so many others here, it’s been a long hard road through the diagnostic wilderness + then through the treatment process for all my immune dysfunction & connective tissue disorder diagnoses.

I'm soo glad you eventually 😁 got the help you deserved and needed in this regard.

Your story is both inspiring and engaging as always. Xx

Well, we do our best…but we go through so much really awful stuff, between the illnesses & probs with the health system + life generally…today my head is in a slightly better place - am more able to be thankful for the good stuff, like your company here. But we’re still zebras, and that’s always really hard 🤷🏼‍♀️💞

The other thing I forgot to mention was that I have recently been diagnosed with severe Sjögren’s disease and I’m now on ciclosporin also. I tested negative for Sjögren’s but thankfully my last rheumatologist Who diagnosed my lupus said the clinical picture for Sjogren’s was apparent, and now after the information you gave I want to see if I am Antibody deficient as it would make so much sense to me now. Over the last 15 years I’ve had repeated bouts of pancreatitis becoming ever more alarming, it was eventually diagnosed by ultrasound but ignored for years as my bloods didn’t show the inflammatory markers that the GPs said had to be present. For so many years I was just told that so many things that I presented with we’re not real and the drip drip of knowing that I wasn’t believed was so harmful which I’m sure so many of us can relate to. It’s been so so difficult mentally and emotionally Because I have a diagnosis of complex post-traumatic stress disorder and each time when I knew that I was right being disbelieved was so damaging. I hope I’m not coming across as too pessimistic, but it’s just that after my diagnosis in February this year I’m still somewhat in me overwhelmed and angry stage , My general disposition is somewhat sunnier and I’m hoping to get back there. This Forum is opening my eyes and helping me to understand that as I always had suspected I’m not alone in the struggle to be believed.

🤗 SO GLAD YOUR HERE, FHB 💞💞💞💞

I just have to say Lottie that your post just blew my mind as it helps me in someway understand myself better than I’ve been able to for a very long while. But you in particular Barn clown have given information about the immune system that is so helpful I just want to say thank you.

Heya FHB ,😊😊🥰

Your post makes me a wee bitty emotional, because, NO-one should struggle for years because people solely see mental health as the cause of everything. It can be the same when you have a diagnosis of lupus, you can have something acutely wrong, but medics may think it's simply lupus doing it's thing..

HCPs eyes I hope shall be opened, yes, it is important to understand the background of the individual, including mental health, all whilst seeing the individual. Easily a person with schizophrenia may present to ED with what looks like acute psychosis, but on CT scan, an organic cause, like a tumour may be found. - just an example to say, that it's not open/closed 🔒 case for anyone but we should not denote current or previous MH to disregard people's symptoms and conditions.

I am not surprised you are overwhelmed and angry still, and for lupies as Barnclown says it's still hard to be 🦓🦓. Ever made harder from disbelief from those we need most. 😔

I can get low from it all, bc it's hard when things don't change or continue to worsen. It's not a broken 🦵, people would see and empathize with that, lupus is something else...

But hopefully, I've placed a new request to my GP for referrals up near me and we will see. Bc working in NHS, at least my consultants in ED know of the best rheumis. Maybe one day I'll do a stint of rheumi as a PA, seen as I can cross across specialities as I please as a generalist. My clinic would have a lot of happy lupies 💖☺️

All the best, take care x

I’m on hydroxy which has helped me, for the first time in years my Rheumy has finally diagnosed MCTD and lupus, my joints are flaring but because I have lymphoma she can’t prescribe the usual meds, she told me yesterday she is going to speak to my haematologist about giving me retuximab to try and calm things down. I had retuximab as part of my chemo and actually felt better on it, it was the other cocktail that gave me side effects. My bloods didn’t show much apart from a high RA factor and Rheumy is a stickler for bloods. It was dermatology that diagnosed skin lupus. I think I’ve been seeing her for about 10 years now and the dots have finally been joined. I’m about to go on holiday so don’t want to start retuximab just now as I don’t want it to dampen my immune system because of covid still about so she is giving me an emergency pack of steroids to take with me. This is so unlike her, I always got the feeling from her that she thought it was all in my head. It’s so good to be finally believed.

Heya 🦎I'm glad they finally joined the dots together and realised that your symptoms were important and significant. Sorry youre having to deal with lymphoma alongside SLE (I don't know how you cope with both). I'm glad the HCQ worked for you, and as you have had good response initially with retuximab I really hope they consider giving it you again.

Enjoy your holiday 💓🥰 I hope your going somewhere nice and warm. X

Thank you LottieLou, I hope you get the help you deserve, I just can’t understand why it’s so difficult to diagnose us. Hope you have a happy Easter, take care x

So sorry to hear the rough and confusing phase you have been going through! Please know that you have all good wishes from fellows here in HU. I wonder if you have come across a news item from about a week ago that NHS is considering an individualised medication based on patient's genetic study. I read it in BBC news (on line). Apparently it will cost £150 per patient to roll this out. I think it is well worth looking into. I am going in for a consultation in two weeks time and will ask both my Rheumatologist and Vasculitis doctors for this. It may not happen right away but I am going to keep asking for it. If your doctor in charge is not sympathetic and is dismissive, I would strongly suggest that you look for someone else. I have done this and so happy that I have. Is it possible where you are? Having Lupus is hard enough a challenge and to have a dismissive doctor on top is detrimental I think. I feel a gush of anger whenever I read a story of this kind of cruel neglect. Please look into it. And I hope you will find a medication that works.Daily intake of linseed (slightly roasted and ground) is supposed to help lupus as well (in case you haven't come across this). It is good to attack inflammation from all angles, not just medication but dietary, emotional, physical exercise daily. I cannot do with any of this elements. I have become a vegan for this reason too. It works for me but you will no doubt find your own way that works for you. The important thing is to keep at it. All best to you.🙏🦋🌸

Interesting Paprika,

I had briefly heard of this due to working and speaking to the research nurses and consultants in ED. It's not quite here yet, as it is available in other countries the last few years, I'm a bit apprehensive of when this will come into practice and what will be the mandate for those allowed to have it, as I doubt initially it will be available to all.

My genetics 🧬🧬 are somewhere in the system, stored from day 1, from birth, due to being in a study from birth, can't access this though sadly. Since again, I had genetics testing 11+yrs ago, apparently, which came up with my initial diagnosis, but I doubt my rheumi did this, bc there was no proof and he was a big load of hot air....

Would be great and interesting for sure to direct medication individually, bc I feel we have gravitated away from patient centered care, especially with covid. One fix doesn't fix all.

I'll take note on other things I can do to help myself, not always easy when you get low about it all. I was very good initially and still at times but it doesn't work too well for me. With how active my lupus gets from something simple like a walk, etc. But one day I have to hold hope that things will change for the better ☺️ ☺️

I tried the Bristol labs hydroxy and didn't get on with it at all. I swapped to Zentiva hydroxy and it's absolutely no problem at all. No sure if that helps. Did you have a SAH in your brain. I am a survivor too and wonder very much if there's a link between Lupus/Sjogrens and SAH. I was undiagnosed at the time. It's early stages of investigation in other countries? Sorry about all your other health issues. You've had a time of it. I hope you get medication.

Sadly I have tried them both, the Zentiva was kinder indeed, but still was making me seize unfortunately at work (not ideal). I'm not sure what level of the brain was affected by the bleed, it was unfortunately took three months for my initial MRI scan bc they thought I was just anxious. It showed a large amount of blood within my brain. Unfortunately they took seven months to review this image before repeating them urgently and saying that the bleeding had stopped. I wonder if there is a link indeed? I believe mine was a combination of TBI, lupus damage and then from being physically assaulted again on top of the TBI, that made it bleed. But as you say our propensity for such things may be higher in those with lupus etc.

Amazing you got through everything, and I hope you don't have too many deficits from such a bleed

Stay safe,

Lottie

Its what hid the lupus for so many years as they kept putting my exhaustion and other health issues etc. down to my haemorrhage. You were lucky to survive a brain bleed but it may not have been subarachnoid or I think you wouldn't be here now.

It's such a pain you can't take hydroxy but I get it there are many drugs I couldn't handle after my brain bleed and still can't. Just tried HRT and came up in hot burny rashes so that's a no go. I was given stemitil for over a year to deal with dizziness and other side effects which worked well after my SAH. It's for schizophrenia but it helped with the brain healing side of things whilst I was recovering (not that you fully do recover). Again hope there is something. If anyone can help it's others in similar situations out there.

Same here dg70,

I don't think it was a SAH, I've had a number in ED with it and it is bad indeed, it's amazing your still here. People can be touch and go. Some peeps correspond okay and have minimal if any neuro deficits and you see the scan and it's terrifying. No mine being missed for so long means I won't know what exactly happened. But when I first blacked out last year whilst driving, is when I'm guessing it happened. Shortly before I had been all too stressed and had a physical domestic altercation, so put my bad head down to it all. Ever since then, I've had seizures, and I'm glad that there is no blood on these MRIs 10 months later. Something was bleeding chronically for a while, at a slow rate, but the vessels are all lovingly intact now 💖 just the underlying damage is obvious now.

It's not easy is it with meds. Sorry you cant take the HRT, it's a pain, as many do well on it. My mom took phytoestrogens (plant estrogen) that helped her until she got the HRT from the doc. I personally approve of the plant versions more so, as I am always a bit concerned where they get the HRT from. ? Glad the stemitil worked for your dizziness after a SAH. As you say, you don't fully recover but things can get better.

I always found it remarkable, when I use to work in Rehab medicine, both here and abroad, specialising in stroke rehab at how much elasticity the nerves of the brain have to work and grow around any areas damaged and develop new neurons that allows people to regain full areas of function again. Abroad, I wouve never believed, but the tens acupuncture (electrically attached acupuncture needles) are so effective in those with strokes. I've seen people who couldn't talk, move, do anything within a week or two be walking around the department with just the aid of sticks and corresponding well. - so much we still don't understand 😁

I am very glad to have this community indeed xx

So true. I struggled to walk and talk but at least only for a couple of weeks. I'm just glad to be alive. I hope they sort out your seizures as they must stop you from living a normalish life. The brain is so delicate.

Hi LottieLou. Sorry to hear of all you've been going through. I had to stop hydroxychloroquine as it was making me feel very agitated and unable to concentrate. A private rheumy, Dr Kaul at the London Lupus Centre, had previously mentioned Mepacrine as something he often added in to treatments. When I had to stop hydroxychloroquine I asked my NHS team about Mepacrine and to my surprise, they readily agreed to my having it, and have just suggested I increase my dose as it doesn't seem to be causing side effects. I'm also taking prednisolone, 13mg, aiming to reduce to 10mg and Mycophenolate, 1000mg per day. So a similar regime to Barnclown, with the hydroxychloroquine substituted for Mepacrine. Hope this is some help and you find some suitable treatment soon. Sending hugs

Thankyou for sharing a regime that is working well for you. Did you find the London Lupus centre really helpful for you? I've enquired about the pricing structure for appt there. HCQ definitely did seem to make me a bit wired, in addition to reducing my seizure threshold. Hopefully I'll find a rheumi that will help soon x

Hydroxychloroquine or Plaquenil worked well for me during my days of active Lupus.

Its stable right now, has been for about 3 years so the tablets were stopped and so far so good. Plaquenil suited me really well, stopped my hair falling out, eased the fatigue and the awful night sweats. If needed I'd take it again.

So glad HCQ worked so well for yourself and that your in remission at the moment. Sadly I'm having to look at alternatives for myself, as HCQ, affects my seizures. Hope you had a good Easter 😌

Hope you find something that helps 🤗

Easters been quiet apart from the telly as its just me and my son and he spends his time with his computer....Happy easter to you LL xxx

Hi LottieLou96,

Sorry to hear that you're struggling at the moment. I hope your rheumy team listen to you and find something that works for you.

My consultants were going to try me on methotrexate. I current take HCQ, mycophenolate, prednisolone and I am also on belimumab infusions monthly. I have found that the infusions have been really helpful in managing and maintaining my day to day living along with the steroids. I recently tried to reduce my steroids from 7mg to 6mg and it was it was not bareable.

I've had to go back up to manage getting through my days but you have lots of options out there and I hope you find something that works for you 🙏.

Take care,

Simbob

LUPUS UK

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