My Rheumy’s assumptions, exercise, fatigue, medication expectations + knitting!
I saw an excellent female Consultant Rheumatologist last week who was attentive, knowledgeable, engaged in a 2 way conversation with me & comprehensively answered my many questions. I liked her a lot & greatly respected her expertise - I have a brilliant Rheumatology Team.
However, before asking me what my lifestyle entailed she incorrectly ASSUMED that I did no exercise because I was so FATIGUED, & that she’d refer me to physio to be taught, saying that EXERCISE is the best aid for FATIGUE .
My orthopaedic file is huge, endless physio visits since the age of 14 (back injury doing gymnastics), spinal/shoulder surgery, other work related injuries, many spinal/neck problems + riddled with OA. I do physio most days as it’s effective & beneficial. Also, I’ve recently completed yet another Chronic Pain Clinic/IMPACT Course via MSK …. with Physios!
Biting my tongue, I politely explained that competitive sport/dancing, exercise & fitness had/is a big part of my life. I grew up with sporty parents & a fitness instructor sister.
It is something I have happily done, never had to force myself to do it, enjoy/ed it & is absolutely normal for me - NOT doing any is abnormal & not me at all. I have been practising Yoga for 35 years & swim regularly amongst other activities….But Lupus, its symptoms + FATIGUE are affecting everything, as it does….I do have rest days too, honest 😇
So to be told I need to exercise by a very nice lady Dr, who openly admitted she does none, did somewhat annoy me 🤨…..I want to be doing it & all my usual activities, so I knit instead, indoors, in the summer-time away from nasty Mr 🌞. (Paced, due to sore fingers/joints & bad back 😂).
Add in UV sensitivity & I’m affected all ways round as many of my hobbies, interests & activities are outdoors…I’m not a sunbather/worshipper & have always been very sun safe.
My normal regime includes high factor SPF all year round, checking UV Index, hat, appropriate clothing & sun avoidance as much as possible.
I still, however received the obligatory sun-safe chat as she wrongly ASSUMED I had no knowledge. I completely understand they have a moral duty to enforce such important matters but, asking the patient 1st would save an awful lot of time.
Having had so many adverse reactions to all the usual Lupus meds, my SLE has become uncontrolled due to not taking anything for it in a year.
I commenced Mycophenolate 4 weeks ago, fortunately no adverse reactions to date but not effective yet either. My Rheumatologist reassured me that it was safe to take despite me having some of the advisory warnings.
She explained it can take up to 4 months to start working & stressed that I must not be unrealistic with my EXPECTATIONS of it regarding FATIGUE , as there are no known Lupus specific drugs to treat FATIGUE.
Has anyone else been told this?
In her experience, she said patients generally, naturally start to actively do more as their symptoms, (but not fatigue) improve….🤞 for me & MMF 🙂
So at least my Hubby will be warm & cosy come winter in the tank-top I’ve knitted him! & I’ve had a bit of a (gentle) body ‘work-out’ as well as some mental agility following the pattern! Win, Win 🏆
~ 🙂 🌸 Happy Wednesday Everyone 🌸 🙂 ~
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Turquoise-1
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Great post! Thanks for every detail. Yes, me too: same thing re being advised to exercise when I always have & still do conscientiously🙄
For what it’s worth, adding on trusty mycophenolate (with no side effects after a few months of my bod adjusting to it) on top of hydroxy (I’d already been benefitting from for 2+ years) definitely did increase my stamina & resilience + decrease my chronic fatigue…but I still needed low dose 10mg pred tapers during flares - which were triggered by any extra strain physically eg going away, social activity like parties, injuries, infections etc…so eventually those 3 became my long term daily combined therapy meds…& many years on they remain so…but I still do have to conscientiously ration spoons a go go 😉
These bad reactions make all this so much tougher! Am just flippin lucky to be ok on these meds. But took 40+ years of relentless multisystem debilitation to finally get with the right consultants & start figuring out which Rx could maybe give me a bit more quality of life despite all the irrepreable damage. And am v glad my dear old ma RIP raised me to listen to my bod & give what it seemed to be needing in terms of meditation, excercise, diet etc etc…so by the time I was in with good medics, i knew my bod so well it was possible to do quite a lot to help them help me. It’s been a lonnnng hard road, and I couldn’t have managed without the past 10+ years here almost daily. Am v glad you’re here too. Thanks for keeping us posted 💞✊✌️🤞🍀
You speak so much sense & say such kind things, thank you 😊
Thank goodness for our sensible parents who taught us so much, miss mine dreadfully 💔 Quite often though, I speak & my Mum comes out! or my Dad or grandparents! …. Makes me laugh 🤭
I’m glad you finally found medics & prescribed meds to help you, you’ve had a long wait…
I first saw a Rheumatologist 40+ years ago, but only diagnosed with Lupus a year ago…In my early 20s, GP mistakenly diagnosed ME & depression, which lead to many years of taking unnecessary, incorrect mental health drugs & years of MH services ….I now know it was actually Lupus….We got there eventually x 🌸 x
🤦🏼♀️OMG: we do have stuff in common …my lupus was diagnosed when I was about l8 months old in 1954…but no one told me…it’s a lonnnng story…anyway thanks for explaining …& well done: keeping your spirit bright despite this nightmare as you have takes True Grit💞💞💞💞
I hope you don't mind if I ask you a question... I'm relatively new to all this and not sure what to expect with the meds I've been given. I'm currently taking Hydroxychloroquine, Amitryptiline and Fluoxitine and, compared to where I was 12 months ago, I'm feeling a lot better. I still keep having flares and have developed new symptoms which I have discussed with my consultant this week and waiting for blood test results.
However, because I am feeling better than I did, I just accept that I have to live with fatigue and brain fog and, don't really discuss this with my consultant. Have I understood you correctly, that there also a medication I could take to help me with this?
I work full time as a lecturer, look after my grandaughter and keep house like many of us. But I struggle to keep up and exercise is non existent, its always maybe I'll do some tomorrow. ☹️
I was only diagnosed as having SLE just over a year ago, so there are probably many others on here who are better placed than I to give their views.
However, I was diagnosed 35 years ago as having ME & depression which I believe were actually misdiagnosed & it should’ve been SLE.
I say this because having suffered the same symptoms for all these years, SLE feels exactly as I did all those years ago!
Because of the depression diagnosis, I ended up on the Mental Health Services pathway, (finally ‘escaped’ it 18 months ago), being prescribed endless/needless, toxic antidepressants, including those you mention.
I suffered so many side-effects from all those awful meds & never felt any better! (Hence trying so many - try this one, try that one 😳).
I was much, much worse taking antidepressants & will never take another SSRI or SNRI ever again. Recent evidence suggests that they can make some people worse & I read a story on BBC news only this week…..I don’t suffer with ‘brain fog,’ only did so whilst taking antidepressants & Amitriptyline 🤷🏻♀️
Unfortunately, a few years later (after suffering an horrific accident, which wasn’t my fault, whilst on duty (Paramedic), I went on to develop PTSD & anxiety….I am left with life-lasting injuries.
Diazepam is the only med which is effective for me.
Amitriptyline gave me terrible hallucinations, Fluoxetine (Prozac) awful side effects. I’m not listing all the others I’ve taken but will say that some of them eg Venlafaxine can give the most dreadful withdrawal symptoms.
I re-trained as a Counsellor/Psychotherapist so am also extremely familiar with Mental Health issues not just as a patient. I’ve had endless therapy (a must have to be a Counsellor) & received all sorts of ‘therapies’ both personally & professionally. The worst ever being DBT! ….absolutely dire….IMHO!
I started my working life as Dental Nurse, & know that Amitriptyline (& Diazepam) were prescribed by the Dentists I worked with as a ‘calm me down’ to very nervous patients prior to treatment.
Amitriptyline is freely prescribed by many medics as it has various uses - A Muscle Relaxant, A Pain Reliever & a Sedative to aid sleep. I regularly still get it offered to me, but flatly refuse!
I’m pleased it & Fluoxetine have been beneficial to you so please don’t be put off taking them by my experiences. We’re all different & what suits one person doesn’t necessarily suit another.
There are lots of different meds for SLE/autoimmune diseases, again what one person finds effective, another doesn’t….
I had severe adverse reactions to both Hydroxychloroquine & Prednisolone plus Anaphylaxis following a Steroid injection. Recently commenced Mycophenolate, 4 weeks in, no side-effects but non-effective yet….It’s all trial & error….
Long reply from me I know, & I’m aware I could have messaged you privately but I’m happy to share my ‘story.’
Lots of info on Lupus UK, the Health Admins (Debbie Kinsey & Michaella Smith) are incredibly helpful & knowledgeable as are the many friendly Members.
I’m probably repeating myself but the Consultant Rheumatologist I saw 2 weeks ago told me there is no specific drug to aid fatigue (she offered Amitriptyline! ….I definitely wouldn’t be able to stand up!).
In her experience, patients were able to do more & felt better in themselves once they found an effective treatment for their condition.
I take either Metatone Tonic, Feroglobin + Q10 + Ginseng or Floradix +Magnesium….Not all at the same time & not every day - put myself on a 1 - 2 week ‘course’ every so often when I’m flagging.
Demands of life naturally add to fatigue never mind having a horrible illness to contend with….it’s far from easy & you don’t exactly lead a sedentary lifestyle which leaves little time for exercise anyway.
Just keep telling your Rheumy Team that what you’re taking isn’t effective, suffering unnecessarily isn’t really the answer….
My Hubby who has RA has massively improved since being put on Rituximab IV infusions which is a Biologic Therapy. He’s tried various ones as well as DMARDS.
Biologics are being used more & more & have been suggested for me if Mycophenolate isn’t effective.
Nice to meet you 👋, a very warm welcome to you 🤗 & all the very best to you on your journey xx 🌸 xx
Ps … Shout up if you think of anything else, happy to chat 🙂
That’s a v interesting question…one I was asking myself back in my first 2 years on first line meds for SLE, ie with hydroxy & amitriptyline helping my neuropathy, rashes & joint pains, but only just taking the edge off what I thought of as my chronic fatigue & brain fog. I’ve never taken fluoxetine
As those first 2 years were passing, I listened to my body & thought my way to imagining that there are actually at least 3 components to what I’d been calling physical & cognitive fatigue, & that this was why hydroxy + amitrip couldn’t be the answer to everything. The 3 components I decided were cognitive + physical fatigue, stamina & resilience. All of which played out in every single of of my body systems because SLE simply IS systemic. And how on Earth, I asked myself, could just an antimalarial & an antidepressant @ neuropathic dose help all that much?
So I felt it sorta followed that although hydroxy & amitrip could take the edge off my pain & fatigue, but not improve my cognitive & physical stamina or resilience, then maybe there were second line meds we could try (to be clear: i almost felt like I had a sort of dementia + motor dysfunction…I still couldn’t sustain moving my bod with fluency, nor could I string words together fluently) . But because I dreaded more pharma in my life I decided to not think too much about this.
Well, then I just happened to have a telephone date with a very very bright member of this forum (former top engineer & top city corporate lawyer) who asked: Coco why are you struggling to find words? & the discussion that followed forced me to look harder at how debilitated I really was…which convinced me I needed to help my rheumatologist to try adding on more meds to my long term daily combined therapy …& that we should probably start with prednisolone & then consider mycophenolate. Meanwhile my dear friend RIP, the chair of our Lupus U.K. Cambridge support group, was also coaching me re how to most effectively discuss pharma options with our mutual rheumatologist. AND at the same time I was also reading the big fat official nhs guidelines re diagnosis & treatment of SLE, so I roughly understood where my rheumatologist would be coming from when we began to discuss adding on second, & maybe even third line more targeted meds.
Then all I had to do was memorise a clear concise explanation emphasising that I was conscientiously doing all possible self help/lifestyle management + complying fully with her first line treatment plan…& then offer her up a couple of solid examples re when all that had proven inadequate… & then ask her if maybe we could try something a bit more in the way of meds eg low dose short term prednisolone tapers to help me recover & recoup stamina & resilience.
My rheumatologist was great! She said: yes let’s try that! Those low dose short term pred tapers proved to helped a lot for a year or so, but I couldn’t quite sustain their positive effects, so my stamina & resilience levels remained very unstable, which I now understand is bad for us.
At that point my rheumatologist said: let’s get you more stable. We’ll keep you on low dose daily pred longterm + try adding on daily mycophenolate, to spare you higher dose steroids. And by gum, that combo has been reliably powering me through the decade that followed so long as I lifestyle manage very conscientiously (boring) & cope with strains & challenges like injuries, infections, surgeries, personal life probs etc fairly calmly & efficiently ie promptly + strictly 😉…which of course is not at all easy, but we all do our best, yes? And also generally expect to deal with whatever consequences of ‘stuff happening’ 🤷🏼♀️
I hope something in there can help a bit. My own experience is really all I can offer up here…so i guess my replies often come across as health care parables 😆.
Am very glad you’re here…& am hoping you’ll keep us posted…am wishing you every best wish for improvements in your personal & professional life
What a thoughtful & open reply you’ve given to Mctd 🤗
You have such lovely way with words, & it gives me a helpful insight into how a fellow sufferer has managed/endured/coped with the symptoms of their illness over the years. Thank you x 💐x
It shows we’re all dancing our own, individual steps to the 🎶 tune 🎶 of our illnesses/diseases 💃🏻🕺
🥰thanks…thinking the same about you! & you’ve hit the nail on the head: yes we’ve all got stuff in common, but we’re individuals & so are our versions of immune dysfunction & connective tissue disorder illness
For me, this life had been 40 years of self help techniques, body therapies, various NHS clinics firefighting emergencies & multisystem symptoms while never wondering what could be underlying it all. Of course all that bred bewilderment, misery, depression, social isolation etc, but by avoiding social life I managed to have enough ‘spoons’ for 2 Summa cum laude university degrees…& then I was lucky enough to have v supportive & imaginative employers who let me work from home quite a lot…+ my husband’s early onset Crohns gave him a peculiar empathy even though the cause of my constant health issues remained mysterious
anyway, in my 50s, as the multisystem manifestations segued into blatantly obvious, the NHS finally looked hard enough at my case to figure out I’d been managing lupus all my life (& only THEN did my ma in Philly announce down the phone line: but DEAR, you’ve ALWAYS had lupus! As if I should’ve flippin KNOWN this despite the simple fact that as I grew up my parents & medics never told ME I’d been officially diagnosed as a toddler in 1954 (all they did tell me was that I was prone to dreadful rashes (& boy did I know THAT 😝) …so there I’d been growing up never even hearing the word lupus (except for in Latin Classes), thinking bad ass rashes we’re just my lot in life + that my health was just more dodgy than other youngsters + that I simply had to be a hypochondriac…& then I moved permanently in my own to the U.K. @ 21 totally unaware I had lupus 🤷🏼♀️so, how could I help the NHS help me?)
Well, I thank goodness for you all, & Lupus U.K., & for my rheumatologist, immunologist & gastroenterologist leading my tertiary care at their Univ hospital, + for my brilliant dermy & spine team at our secondary care local hospital. It’s a huge joy i’ve been able to spend this last decade+ in such good company, with greater understanding of my health saga + more quality of life.
The cherry on the top is that, lately & ongoing, everyone here has been able to take part in the groundbreaking studies Dr Melanie Sloane & LUK are producing: these studies are being gobbled up by world leading official publications (enthusiastically welcomed by many many of the medics reading them…+ cited in other studies published in medical journals around the world). Nothing compares with the feeling we are shifting things for the better, so future generations of autoimmune disease & connective tissue disorder patients like us can have a better shot at happier, healthier lives ❣️ for anyone who is curious, here’s the link to all the studies we’ve had published over the past few years:
Thanks for offering me up a chance to express all this…have only had a few months since finally stopping shielding + am now recovering from yet another spine op last week, & turning 70 in a few months…all of which makes me look back with horror, wonder & gratitude I’ve made it this far💞💞💞💞
When it’s all written down it’s an epic journey you’ve been on!….Let alone actually living it!!… Wowsers 🤩 x 💛 x 😮
Such a fascinating & interesting story & the fact you never knew for so long adds to its marvel ….Good old Mum! 👵🏻 😆…. Bless her xx
All kudos to you for your outstanding achievements 🏆
You & me both have had lots of medical input from various areas of medicine, (spinal surgery included), but we’ve still battled on with perseverance & determination despite feeling truly dreadful at times….You get the gist 💞
Coincidentally my Hubby has RA & diagnosed with Coeliac, (then undiagnosed, then reconfirmed 🙄 … long story!), so like yours, he has a good understanding, helps me lots but he’s very much a ‘just gotta get on with it’ kind of guy, we can’t change it, so just ‘crack on!’ ….No grey areas with him, he’s very black/white, shoots from the hip, makes no fuss & takes it all in his stride = Mr Positive!
Ooohh, I’ve recently been involved with one of Melanie’s studies - quite a lengthy, month long one earlier this year …. They all play their part in tackling our diseases & for the future …. Great stuff 💫
Earlier today, I was singing the praises of Lupus UK in a reply I gave in response to a post I read on here; This place has helped me enormously 💜
Fabulous chatting with you, thanks for taking the time x 🥰 x
This is it: we do have stuff in common…& OMG even stuff re our husbands: do you ever wonder if there’s some sort of chemistry in your attraction due to both having AIDs issues? I do! All those decades when the NHS tried to scapegoat my multisystem stuff on my spine, only Badger was skeptical! & back then in the 1980-early 2000s the science on AID was still in progress re labelling Crohns autoimmune 💞💞💞💞
I do, possibly goes even deeper, maybe something within the psyche?
‘Kindred Spirits’ drop into our lives & the parallels are uncanny, connections are easily made, yet it doesn’t happen with everyone.
Maybe it’s nothing more than AID folk having been on similar medical voyages & the realisation that others have endured the same & ‘get it.’
It’s like landing on a different planet yet they speak the same language as me & we can converse fluently & understand each other - I’m not so odd after all .…it’s pretty cool 😃
My hubby didn’t have his RA or Coeliac diagnosis, nor I SLE when we met - but we must’ve been destined to be together for where we’re at now! Someone up there must’ve known!! 🌠🔮🌌
Back problems, unless it’s trauma related or there are ‘Red Flag’ criteria, are notorious in the NHS for not being promptly dealt with; GPs won’t go rushing in & do a direct orthopaedic referral. They used to years ago as I well know, (14 different spinal problems for me, or as you say, “Multisystem” which speaks volumes.
These days it’s Advanced Practitioner (Physio background) 1st, then referral to MSK & possibly Physio, maybe Chronic Pain &/or even Anaesthetic Pain Clinic. The last person you see (if at all) is an Orthopaedic Consultant …. Unless you pay privately, which I have done several times & for MRIs too.
You mentioned, “Firefighting emergencies,” did you mean for real, as in it was your job 👩🚒, or NHS clinics were super busy, delayed & difficult to get an appointment? Just checking 🤔
Apologies for delayed reply, it’s been a long day but all is well 😘
😆 no, am not a fire person. I just meant that because I was always told by all my clinics that all my manifestations were normal (the typical thing we run into, yes? No consultants notice theirs isn’t the only Dept we’re attending …no one joins up the dots indicating underlying systemic illness…someone like me turns into jemima Puddleduck resulting in me thinking excruciating manifestations are actually ‘normal’, so bad bad stuff keeps getting ignored until the red flags are waving so frantically that either I or someone who notices wake up & firefighting commences)
👍YES re your take on us & our other halves!
Spine: mine is super hEDS loopy + injuries due to falls from height onto hard surface (onto head & another onto coccyx) + silly career choices (early years in charge of historic house’s gardens etc) so, early childhood onwards has basically been 7 decades of studying & experiencing developments in pain science a go go. Everything from figuring out which body therapies work for me, to radiofrequency ablations/denervations & most recently neurosurgery’s botched L4/5 instrumented fusion. & OH BOY during lockdown did I ever benefit from the ‘Extended Scope Practioner’ physiotherapist system you’ve mentioned: he was SO GOOD that he managed to fast track my appt with a new spine team led by an orthopod who specialises in older patients with severe spine disease inc severe scoliosis & kyphosis like mine 🤷🏼♀️…I could ramble on, but you’re v experienced re this stuff, so am sure you get the gist 💞
Hi there, my daughter has just started this now she don’t like tables so she went of the injection once a week that you do your self. She has been ok with it she felt sick and a bit ill the day after but it didn’t stop her doing her normal day to day stuff she has now been on it for two weeks so still got another couple weeks to go yet. I was with her when was talking about it now I have lupus and everything else that goes with it and I wish they would put me on it because I think it would help me a lot. Hope this helps lovely x
It’s still early days for both your daughter & I being on MMF, so I guess time will tell.
I know what you mean about the tablets - they’re huge!! 💊, at first I cut mine in half, but 4 weeks in, I’m gulping them down OK now 😉
Perhaps you just need to keep telling your Rheum Team that what you’re taking isn’t effective for you; Ask them directly if MMF would be a suitable alternative for you, hopefully they’d at least discuss it with you. 🤞
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