Been having an up and down time on HCQ but it has been the first medication to remove alot of the brain fog and sight issues, improved the arthralgia, temp fluxes, rash and fatigue.
The first thing, though, was trying to cope with a working brain, it was like being so alert, almost a bit wired. The second thing I noticed was that my seizures have become much more frequent and worse, not helpful. And thirdly the pain in my lower back and flanks got slowly worse, normally a dull ache, but last week and a half has been intolerable. Like someone was holding my kidneys in a vice and like they were about to burst. The normal kidney function is quite poor so it probably just couldn't cope. A couple of ibuprofen is enough to cause excruciating pain.
So this has as some know improved somewhat since stopping the tablets. Diazepam has stopped the recurring seizures for now. But my rheumatologist who called today wants me to restart the tablets as normal for two weeks and then she will call in April and see.if.its worse again. She stated that the HCQ lowers seizure threshold, but not to worry that's a neurology issue not a rheumy issue so to continue anyway.
Just wondered if anyone else has had major issues with HCQ tolerance.
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LottieLou96
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Starting Hydroxy proved to consistently help me in similar ways, but, thanks to advice here, I made sure I stuck to Zentiva brand. However my bod needed about 4 months to adjust to it, during which my migraines were more frequent (in my case these involve inflammatory process). So although my issues with hydroxy weren’t major, to me they were significant
Yes, me too: I definitely did feel more ‘wired’. But the only seizures I get so far are myclonic jerks, & hydroxy didn’t affect their frequency or severity. My syncope flares did reduce though
Anyway, within a year of hydroxy proving how effective it could be in my case, its limitations were clear: the cluster of manifestations my consultant & I call my chronic progressively debilitating ‘neuro cerebral’ issues had remained troubling enough to indicate I needed something ‘more’ in order to be effectively & adequately medicated…eg. so I could do stuff like string words together sensibly without long pauses etc, …+ so the weird neurological sensations in my legs damped down etc etc
First we spent a year trying low dose pred tapers which dramatically helped as needed, but not enough to keep my neurocerebral stuff damped down & stable…so the next year we added daily myco + put me in long term daily 10mg pred, which pretty much settled my predisposition to persistent & flaring neurocerebral issues (I say ‘pretty much’ cause any infection or bone fracture or other such traumatic incident always triggered flares)
& For what it’s worth re kidneys:
While I was going through all the above trial & error sorting out the best combined therapy Lupus treatment plan for me, what my immunology chief calls my early onset ‘chronic infectious urinary tract disease’ + pyelonephritis got worse & worse. …& it took several years of investigations by Urology, uro-gyn + immunology to figure that out & get it all under control
Hoping maybe something in there can be useful…my feeling is that here, basically, despite seeming similarities, our cases tend to also be very different in many ways
💞💞💞💞 Coco
PS am glad diazepam is helping ‘so far so good’! what dose of diazapam have you started on?
(My spine surgeon is starting me on diazepam @ low dose, so I’m interested & curious …. especially as our lupus was very early onset + we have significant diagnosed neuropathies)
What fabulous and detailed advice! I really do appreciate it, with have similarities and differences for sure, but you are defs a big help.
Sadly my diazepam isn't forever, it was initially because of having a blackout and falling on a marble table. You never see a GP so I just emailed and asked for copious amounts of codeine and diazepam. Killed two issues with one stone. I was put on 5mg three times daily, however due to the degree of kidney pain I had and the radicular pain from flaring of my previous back injuries/slipped discs/vertebral fractures. Mainly the kidney pain, so doubled that and the codeine with good effect, no overdose. I am a PA by trade, so am well aware to stay within guidelines. But stopped my seizures in their tracks and really good on back pain in particular. So easy answer is I'm back taking 5mg three times daily, was taking 10mg three times daily.
R.e. the kidneys, thankfully I have never had a UTI I am grateful indeed that at least that seems to be the only thing I've not had haha. And they are a terror. I have bad nephritis of them, and they almost have a mind of their own in their dislike of medication. They pack a punch, at least that is what it feels like. Hopefully the different brand will be a bit easier on them, I don't want to be bent double again and still convincing myself to avoid A+E. But they aren't happy, they have had recurrent episodes of acute on chronic failure in the past. So I'll try for the next wee while because HCQ does work on dampening the brain fog and some other cerebral issues, I'm just having a bit of a hassle trying to get my seizures to dampen. Maybe I could convince them to let me have my diazepam for pain relief for my back and to double help my seizures.
I get what you mean possibly to some degree that you see what's missing once on HCQ and you can think clearly enough to realise where the problems lie. I have issues reading clocks, with figuring out how to write and spell, and just feeling weaker and in a bubble state on my right hand side. My memory is not what it use to be. Sometimes I find the words in my head but they are in lost forgotten languages. The less English I remember, I swear I'm communicating in a strange german-russian mixed language at times
And I can pinpoint where in my head hurts, the brain fog made it difficult to localise that. The damage is there, albeit I don't know which is worse letting lupus make it worse or letting repeated seizures probably do damage.
However 🙂 stopping HCQ is like going on a joyride of a lupus flare, I just can't stop shaking right now in two duvets, an electric blanket and a fire haha. My Raynaud's and chillblains are kicking in and a bit of prinzmetal angina. That.along with a bad migraine there's no hope of me making too much sense tonight haha. When the CLE is bad, and you're heads bad, I can't even think about the SLE haha. Goldfish syndrome undoubtedly.
I spoke to my work supervisor as I've had time off, and I've only been in the job two months. He says he has contacts, and could get my neuro and rheumi back up to Aberdeen without any waiting hopefully and to sort things better up here. I asked if I could refer myself as patient and practitioner if I went to my own ED. Would make a funny skit at least to have me call down rheumi and neuro and quickly put on a gown and get in a room. Would be so much quicker treating myself.
If I ever get the delights of treating any of my fellow Lupies on this chat, you'd be in good hands, I'd get you seen. Haha
🤩 Thanks! Fascinating & illuminating, in every detail!
😏 You’ve made me chuckle, especially love your:
When the CLE is bad, and you're heads bad, I can't even think about the SLE haha. Goldfish syndrome undoubtedly.
🤷🏼♀️ My CLE (especially the severe RP+EM reperfusion injury aspect) remains the bane of my life. Decades of this have helped me come close to normalising it’s monstrous traits, but this winter I’ve been forced to accept my current combined treatments are all science has for me…there is no other treatment out there that can safely help an early onset aged 🦓like me. So have been focusing on embracing the hellish 24/7/12 misery as my normal, possibly because at least micromanaging it does help just enough to make life bearable…but also am intent on staying alert to red flags, keeping up my photo log…of course deploying disassociation techniques 🤪
So, you’ve found diazepam helpful before. Over the decades, my medics have kept me on short term clonazepam + meptazinol for acute flares. But once I’d got onto my lupus meds, I couldn’t safely tolerate clonazepam (made me throw up something awful). So having reviewed my history of bad reactions to all other classes of analgesic, we’re starting diazepam @ vvvv low dose, hoping that, combined with max paracetamol & my daily 10mg pred it can be my safest standard go-to analgesic for muscle spasm. Meanwhile my MDT is looking at more surgery for the spinal deformity radiculopathy stuff
But OMG: WISH we COULD get treatment straight from 👩🏻🔬🦓YOU ….
Hope you’re sending things at your end are showing inclinations to cooperation ❤️🍀
It's the reperfusion injury which is so significant and no joke. The challenge is to help peripheries stay temperate when everything sets them off. They swell up as well and get red which is uncomfortable. But for myself I keep them overly hot, because if they aren't perfusing, they are ischaemic like the heart, when like with MIs the damage continues and worsens as the ischemia resolves and it reperfuses. I glove my hands, probs like yourself, all the time, I avoid wind and rain, bc it knows, it knows even if your indoors 😅
When mine were frostbitten and falling off, 😭 before I gained some control, the best for me was sudacrem all over the hands and bandaging them at night. And it fixed them up. Avoid anything that cuts them, breaks the skin. Otherwise they get infected as I'm sure you know. And somehow, I am the opposite to most but my skin breaks down if I don't use hand sanitizer, odd I know, but in hospital working, I get warmth and hand sanitizer ever 15 minutes haha.
Because my peripheries get so cold I usually have a hot water bottle for each limb so they don't freeze the rest of me. But when it chooses it ain't enough. Have to live somewhere warm without any sun.
Nifedipine or Amlodipine is usual go to for Raynaud's, but makes me soooo much worse. But seems for some to help.
I also feel like an aged one, albeit not haha. Not getting much luck, my kidneys for some reason are happier on Zentiva but I halved the dose for now. With the antiepileptic alongside I am just in limbo feeling like I'm spaced out half normal/half going to seizure.
Honest though, I'd still treat any of yas that couldn't cope and ended up in ED in Aberdeen. Not that you should all fly on up haha.
😅👏👏👏👏Relieved kidneys complaining less on Zentiva…& chuckling at them handing over a vast amount of Zentiva 😆…reminds me of back when a series of massive boxes full of sildenafil were arriving from my rheumy (after neurophysiology results made the 💡 go on in her head & FINALLY she put me on daily high dose scleroderma RP protocol - 🤷🏼♀️for the severe ischemia reperfusion injury which had been staring us in the face for years (the progressive damage was not due to lack of conscientious self help/lifestyle techniques, but rather simply down to childhood onset lupus, sjogrens, vasculitis, neuropathy, RP etc etc going without long term systemic meds until 2011 when I was in my 50s)). My husband Badger joked we could make loadsa money reselling online😉. Anyway, now I’m on max dosage sildensfil long term, I get a month’s worth from my GP on repeats…. And YES😄👍👏👏👏👏:your shrewdly individualised RP strategy + tactics make total sense to me❣️
🥰 Definitely true, no matter what protocols you put in place with childhood/Chilblain lupus etc.
So you got sildenafil, I had to look that up! It does make sense to go on the SSc protocol, and glad it's beneficial to you. 😉 But after alot a lot of damage had already been done.
But is it doing a great job or just making it bearable? And as these things continue to progress it can be scary at times 😣
I'm glad you have a good stack of meds, tempting to have a side hussle isn't it. My colleagues at work joke I'm addicted to opiate analgesia, I'm like just trying to get on by haha. My colleague/friend is a ED drug and alcohol liaison nurse, and tots was asking me questions about them and the diazepam. I said remember you only liaise with peeps who take non prescription drugs haha.
There are good reasons not to give sooo many to people. With chronic conditions like lupus we have times when we can mentally struggle, and time and time again in ED I have to deal with people who take a couple of months worth of medication at one time because they just can't bear it anymore.🥺
My main concern is knowing that each year it gets worse irregardless of how hard I try. They loose function, feeling, and easily get damaged and infected/septic, and the raynauds goes right to the top of my arms nowadays and right up the legs as well. So I guess I look quite like a smurf. With APS alongside I do look like a 🦓 sort x
👋👋👋👋HOPING you & Zentiva are getting along OK! 🍀🤞🙏🏻
Thanks for giving me more to chuckle over: eg ❤️ your Smurf ref 😆…as a v early onset mega-🦓 working in ED you’re giving us a UNIQUE perspective on all this: am SO GLAD you’re here telling us about that, cause helps me A LOT & am sure many others too💐💐💐💐
Apologies for pause before this reply: just distracted by coping with all my usual aged early onset zebra stuff 🙄,…especially getting my head around the direction my new Spine Surgeon’s MDT thing is taking me/us…but also the CLE feet are just such sad specimens: ok, yes, they tell me they’re v grateful for all the treatments my rheumatologist + dermatologist + specialist podiatrist have my inner-matron constantly plodding along complying with on & on…but you’ve totally hit THE NAIL on the head: the accumulated damage caused by decades of early onset 24/7/12 Raynaud’s cycle is just so tough on us. In my case, the toughest aspect is due to the severe Erythromelalgia combining with the sural axonal peripheral neuropathy…i KNOW you really truly madly deeply know what I mean 🤷🏼♀️💞💞💞💞
I guess I may offer some perspectives working in ED myself. I had the opportunity or had to rather break the news of someone with GCA yesterday, I'm sure my colleagues thought I was nuts! But sure enough I did the needed tests and in 2hrs I had them on high dose pred 60mg and had rheumatology appt today and opthamology in 1 weeks time. The sooner we recognise the sooner we treat the less damage is done.
You seem to have a lot on so nay worry Coco, happens in MDTs when everyone is discussing it together. A combined effort is usually better than the individuals bias impression but not always. And tots get ya, you're like these are still bad and feel worse, even if they don't look worse.
""Erythromelalgia combining with the sural axonal peripheral neuropathy'' sentences like this is why we are at a loss though by not incorporating the patient in the MDT discussion themselves. We/you are an expert in your own right of your own body.
That's what I'd do, I try to get the patient to tell me what they want and work from there....
Days are a challenge, weeks are a struggle, but we know that there is hope. Hope makes us continue and a good amount of stubbornness and dark humour. I can see ya have all three so you hopefully will be a content 🦓 x
👍 Well Said❣️…every time I land in front of a new ‘health care professional’ i feel like am dipping a toe in the water before plunging in …the BUZZ of joy I feel when that person shows savvy re my sorta 🦓stuff is MEGA …Your GCA client will always remember you: a bench mark has been set re medics being quick in the uptake re his/her 🦓ness 🤩
A benchmark you say! That's praise indeed for a relative newbie that I am to ED. As the consultants put it, you're at the bottom of the pile. It amuses me because despite this they seem to be more than comfortable and agreeable with what I say, and if they aren't, I generally prove them wrong. So it's a passing joke indeed. And fingers crossed I have had the best track record in the last three months, with no fatalities due to mismanagement. So happy campers!
It's hard to try to restart with doctor upon doctor, consultants etc. It's like your back pedalling on a bike sometimes 😕 But exposure helps and sometimes we need to be as open as possible. My department know of my lupus and subsequent epilepsy. In turn, to provide support, they are reading up, asking about and being more open and aware of the multifactorial affects of lupus and how both the illness and it's medications can cause many adverse effects and diminish our QoL.
At times we must 'DIP OUR WHOLE FOOT' in Coco. I had a neurology appt on the Monday via telephone due to my worsening seizures from the HCQ. Afterwards the guilt of not being fully open and honest for the past year hit me. I sent an email to her, I told her why I also have an acquired brain injury.
I still struggled to speak to her the following day, but i told her about prolonged domestic issues/abuse and the multiple instances of head trauma. I took a leap of faith, one that took a long time coming. One that I was sure was going to go wrong, but she believed me, had no judgement, and has set up neuropsychologist referral soon so I can maybe put some more demons to rest. It helps to have a bit of weight lifted off our shoulders!
But also too easily HCPs can dismiss those with physical illnesses based on mental illness/trauma concurrently. They usually go hand in hand. We are to treat the while patient, not a number, but a person, with dreams, hopes, fears and ambition, who deserves to be happy!
Your fast pick up was probably admired more than you know. That patient certainly will never forget what you did for her. I am sure your handling of the difficult diagnosis will also be remembered. It is in crisis that compassion is needed but also seared in our memories.
You contribute a lot while struggling with a chronic illness yourself!
I am always learning, growing and developing that's the beauty of it!
I love my work and I care that people are treated effectively and correctly. ED can be an opening door to gaining access to specialists rapidly when difficulties with gp access and delayed routine referrals can take an eternity at times.
They may not remember me, and my only hope is they go on to live long and healthy lives, to be happy and secure. I remember and pray for all those that pass through my care.
PS forgot to say re scleroderma sildenafil protocol:
One year on from revving the daily dose up to max, 50mg sildenafil is helping in that blood flow is now enough to make my nails grow again & the anhidrotic calluses that important bit more manageable & any wounds more cooperative with treatment + relatively faster healing…&, so far, no pulp lesions, ulcerations etc….but the RP cycle’s rubor phase (aka my version of secondary Erythromelalgia) is still BONKERS - so I glance at my feet photos album every now & then to remind myself how v much worse all this was before sildenafil…especially the Erythromelalgia burning, swelling thing & the oedema.
Some time ago, my rheumatologist told me that so long as my feet manifestations are constantly playing up & subsiding 24/7/12, we’re more or less doing ok by these flippers…so that’s good, but this degree of ‘stability’ sure is a wild ride: managing these feet is definitely a constant micromanagement-thing 😅
Glad you took a lil interest 💖❤️ most people just nay care or know. The proper way is whilst not a doctor we treat and manage like a doctor but come from a postgraduate route. Like docs, but we are born generalists, here to stay and be good at our jobs and create continuity in the work place and much cheaper xx
👍😆 I ❤️ these tiered systems within professionalisms! E.g. Over the past 12+ months I’ve been in care with a NHS MDT spine clinic which includes Extended Scope Practitioner Physiotherapists, who do post grad studies to basically become consultants in their own right, able to relieve MDT surgeons of routine diagnostic responsibilities (physical exams, ordering imaging etc etc) - am sure you know about these guys. after decades of being referred to work with NHS physios who knew nothing about my 🦓ness, finding myself in the hands of this ESP physio had me wondering if I were dreaming 🤣🤣🤣🤣
I had to give it up as I eventually discovered that it was making me feel extremely stressed and agitated. Since stopping the hydroxy, my concentration has come back and I only rarely get the 'super stressed' feeling that I was living with almost constantly before.
When we’ve discussed this here over the years, there’s been the feeling that Blackrock’s hydroxy is probably almost as good as Zentiva’s. Also, folk have suggested bad reactions may mainly be due to the types of fillers in other versions of hydroxy
Got some Zentiva by chance as the pharmacy gave me a stock load of hydroxychloroquine, about a 1yrs worth? Weirdly high amount when I'm trialling it first haha.
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