Lupus anyone ?

[AnyaMarx]

So after months and months of thinking I had RA - doctor kept saying can't be - it's not in fingers or toes - it now seems it could be lupus . I've been like this 15 months now . Can't walk up or downstairs. Totally immobile and having to work from home (from bed actually )

The gp
Practice pharmacist rang me . My bloods are off .

I've got swollen , stiff painful knees and ankles really swollen and discoloured- purple in fact I have photos to show gp. Again .

I'm anaemic despite being on tablets (b12 )

I can sleep 18 hours some days and simply cannot wake up

I've got lung inflammation- coughing and wheezing doctor said I have asthma but im 51 and never had it before !

Had an ecg for heart pain

My finger tips are blue and I had a manicure recently- when my fingers went under the uv lamp it felt like I'd dipped them in petrol and set them alight - had to take hands out A's couldn't bear the pain and burning

I've had pneumonia.

The go have me a 5 day course of prednisalone for my chest - by day 2 I could walk - my ankles were better - I could flex my feet - now the course is gone it's flaring back up

My symptoms flare up without warning, and last weeks and weeks . The. Suddenly I find myself pain free and walking again - only for it to happen again when I try and go back to
Work

The pharmacist at my gp has booked me in with the doctor who
Specialises in auto immune because for 15 months I've been fobbed off - told it cannot be athritis as im too young and don't have it in hands or toes . They refused to refer me for further investigation. Twice now I've asked and twice been told to jog on .

Mr phmamstist wasn't impressed and said all points to auto immune.

Does anyone have any experience with lupus ?

My friends son is a hospital pharmacist and he said treat as if auto immune and see if it gets better- well the oral steroids definitely helped the joint issues which are currently rendering me immobile. I cannot drive , walk, I can't even take washing upstairs because I need both hands to get up the stairs at minute . It's awful. Wothin a year I've turned into a disabled old woman from a fit fit fit , active , healthy woman - I used to run , cycle , hittworkouts , hula , I look at the pics of me from a year ago and I could cry . I was lean, fit and Muscular.
Now I'm 2 stone overweight, can't walk , can't get upstairs unless it's on my bum or I have both hands to haul myself up. I sleep 18 hours at least 3 days a week . I can't be bothered to dress or wash hair . I'm stuck in the house . I get food boxes delivered. I can't visit family . I can't go to work . I can't walk my dogs . I can't do anything. Housework is too much . The washing is all in the kitchen because I can't carry it upstairs to the airing cupboard. My house is messy . Anyone here relate ?
What can do ?
How do I get a gp to take this seriously? It's all on my notes because they've been scratching their heads for months . The pain from the uv lamp had me Google - and everything fits .

I live in another country but one of my best friends was diagnosed with lupus over twenty years ago and a naturopath cured her. As they are unregulated, I believe you'd want to find one who came with recommendations.

All the literature on lupus says it cannot be cured - but it can be managed. I'd be very very sceptical about anyone claiming to cure anything with herbs I'm afraid.

I'm not averse to complimentary treatments. But I want to live a normal life again .

My MIL was diagnosed with Lupus not long after I met her 25 years ago. She was told that there isn't a cure but they treat the symptoms.

She was in such pain that even the weight of a bedsheet on her was too much.

She has been on steroids pretty much ever since as whenever the dose drops she is in agony again. She has to take other medication too including thyroxine for her thyroid but that may be separate. Also drugs to counteract side effects of initial drugs.

With the cocktail of pills she has led a normal life (although no sports).

Sorry to hear how you’re feeling @AnyaMarx

Unfortunately, lupus is very difficult to diagnose. I was diagnosed with lupus last February and my symptoms started at the end of 2019. As it was the height of the pandemic when my pain was the worst I saw a rheumatologist under private healthcare who put me on Prednisolone. It was very difficult to be seen over the course of the pandemic.
My symptoms were similar to yours, lots of joint pains, swelling, unable to lift pillows, stiffness of joints. In my knees it felt like the joint was disconnecting and I had started limping as I was unable to cope with the click in my knee.. I lost my appetite, I had the purple bruising you mentioned. I had lots of fevers. The Prednisolone on high doses helped but then I started getting heart palpitations. In the end I presented myself to a&e. I had fever, heart palpitations, had lost weight, hair falling out, joint / muscle pain, couldn’t stand. Angiograms, scans, MRI and a biopsy later I was diagnosed with lupus. 3 years after my initial complaints. I also get the blue fingers that go completely numb and I can’t move them which I now know is raynaulds which is caused by my lupus. I also take drops for dry eyes, as the lupus causes me to get blurry visions and black dots particularly in bright weather where I get sensitivity.
I don’t think age/lifestyle has a bearing sadly - I am 34 and my symptoms started after the birth of my first child.
I now have a brilliant consultant and a great care plan.

Please keep pushing for the help you need.

Happy for you to pm me if you like, best wishes.

Thank you

I might on you but need to get on laptop to do that

I e thought about a&e as had crushing heart pain twice and palpitations but after an ecg showed all fine I did t bother again .

I've got really weird bruising and discoloured feet , ankles and knees and blue fingers .
Some face rash but nothing major
Is the treatment always oral steroids ? I know it sounds crazy but I e already put weight on because Ive become inactive - they aren't very good for you long term are they ?

Mi d you - Nors lupus . 🤷🏻‍♀️

What did the bloods say? Esr and c reactive protein? Mine are high and I've been booked for a lupus blood test which needs to be done at the hospital.

So sorry you are in such pain and also how difficult it is to get appropriate care x

I'm at go next week but until then I do t know what blood said ....practice pharmacist rang me and booked me in .

I think I've conversed with you previously @AnyaMarx & sorry about your shoddy treatment. . I've got a similar condition & a family member has lupus. It is about management & there are general disease modifying drugs used, hydroxychloroquine, methotrexate, steroids, anti inflammatories, maybe biologics but not sure on those The aim is to bring the inflammation down to stop it attacking you. You need anti Ro, smith, ds-dna and ana tests done at hospital. The GP can run ESR and CRP & I think ds-dna which is lupus specific. Autoimmune conditions can be hard to diagnose. The chest pains & palpitations might be from orthostasis or PoTs which can occur with AI diseases. I do hope you get diagnosed soon & the attack can be controlled.

Well I've compiled a host of photographic evidence now - I have the butterfly rash on my face too so I'm hoping that with the pics of my blue fingers, disgustingly swollen blue joints and the bloods will now start to get me somewhere

Yes I can relate, before November 2019, I was working locally in a well known budget hotel chain,
I was struggling to keep up with former colleagues,
second boss, at that time,asked why I was slower than my ex colleagues, couldn't understand why,
I explained how I was feeling, said you just need a week or so ,
that was start of my nightmare in regard of my health,

discover I had Rumertoid Athritis and recently diagnosed with OestoAthritis too,

interesting infor @Coyoacan mentioned about naturopathy healing your friend, who lives in different country,

As, in certain some countries, are more aware of , or emphasis put on what you eat,affects your health, ect,

It's interesting cause Rumertoid Athritis, is auto immune disorder, and I find certain foods I have eaten, will trigger inflammatory reaction and make me feel stiff and extremely achy,and either my leg give away, or I have extreme throbbing pain or dull achy sensation ,

this is common with suffers of Rumertoid athritis

Also I read a book on a retired nurse back in the 80s era , who suffered from Rumertoid Athritis,
she was told, she would end up in a wheelchair and not to get married have children, Cause this is your prognosis,

she looked into her diet, western diet, addressed this eat healthier,
she passed her training course,went on to get married had a largish family of 8 children too,
I picked up book from charity shop,as love getting a bargains from charity shops,

Also there is a world renowned Author ,Psychologyist, his name Gabor Mate,
who had God Awful childhood, experience experincined Holocaust ect,

he has wrote, a few or several books,

Called The body keeps The Score, The Myth of Normal ect,

The body keeps the score book is about having unresolved Traumatic events happen to you, Whithout having the essential support or not enough support is detrimental to our bodies, immune system, for e.g having extreme prolonged severe stress for so long, has over time, a toxic effect on ourselves,

a bit of stress to complete deadlines, is ok,as motivates to make a effort to do activities, that need to be done,
But if you experienced extreme bullying at workplace over time and had other shitty experiences too, add in the mix, this will create accumulation, a back log of trauma,
also having just one Traumatic experience unresolved can have adverse ,negative effect.

hence why having immune health disorders, can happen and western diet, the unhealthy aspects, can have obviously bad effect on our bodies and can effect our emotional well being,

Gabor Mate Psychologyist is on youtube,Internet, he does a interesting talks about this subject, ect

Whilst I do have the book "the body keeps score " I don't believe that's the sole cause.

My diet is and always has been very healthy.

The flair ups happen when I overdo things - which lately is working 3 days back to back .

My friends son is a hospital pharmacist and his response was to treat as autim immune and if it is - proofs in the results.

Recently had 5 days prednisalone and after 2 days felt like lazerus - could walk . The steroids worked .

Now I'm off them - back to square one .

And whilst I do
Acknowledge trauma

Why now at 51 ?

My trauma was 7-16 .

Had a still birth and relationship breakdown 4 years ago , but right before this happened I was the happiest I've ever been . Single yes - but content .

I can't help life happening- and I can't believe that's why I've got this ? People experience so much worse and don't swell up like a blimp ....?

same story as yours. I had covid three times ( twice in six weeks) last year then ended 2022 with flu twice in three months. The last session was over Xmas into new year. Four days after feeling normal I woke up in agony.
I couldn’t move with the stiffness, pain and swelling. All my joints from my ribs down were affected.
fobbed off by a&e with ‘pulled muscles’
bed ridden for weeks.
eventually saw GP who only after cajoling did some tests.
i suggested autoimmune- possibly PMR as my family has a horrific relationship with autoimmune diseases. Gp was dismissive.

then my bloods came back with mega high inflammatory markers. And my liver was inflamed as well as my pancreas. I am ana positive and I have high calcium levels.

gp kept saying ‘ I am not sure what’s going on - here are more painkillers- let’s see what you are like in a few weeks’

I said no. I needed either steroids or at least an urgent referral to rheumatologist. Just on the referral without seeing me I was told I have some sort of inflammatory arthritis and I needed a depo medrone injection asap.

the steroids helped my mental health but not so much my physical. I had bee. Bed ridden with my husband as my carer. I was suicidal- planning it all.

then last Thursday I saw the rheumatologist- and she was amazing. I was in there an hour. She wanted to know everything- all the aches pains and weird symptoms I had had. She went back to my childhood over 50 yrs ago.
she then poked me. And I squeaked.

it is autoimmune
I was right

but looks like ankylosing spondylitis and sarcoidosis.

i have had some more tests and I need an mri.

ok - I have a nasty condition. I have probably had it most of my life. But I feel vindicated. I am not a hypochondriac, I am not an old post menopausal invisible woman.
i am coping with a terrible disease and have done on my own since I was about 6 years old.
two kids, two divorces, a career and I kept going!

i am fucking amazing ( so are you)

@Goodread1

I have another friend who was cured of arthritis by naturopathy. She is 91 years old and had really bad arthritis in her forties.

Curiously enough she had quite a traumatic childhood as her father was murdered before her eyes when she was just seven.

Naturopathy treatments entail weird things such as coffee enemas, so they are not for the faint-hearted, but much better than a diet of steroids.

Personally I have never been to a naturopath.

I was very sick with this 18 months ago and was off work for a year. I'm now much improved and working again.

If you believe the pharmaceutical companies and conventional medicine's take on it that it's incurable and you can't make any changes to your health (apart from with drugs) you simply will not improve. The ppl I know who is on steroids does poorly long term, ending up with problems like osteopenia or cataracts.

The thing that changed my mind was Dr Ben Goldacre's book "Bad Pharma". Unfortunately we've been lied to by the pharmaceutical companies who want us to believe that disease is the result of bad genes and "bad luck" and can only be fixed with medication.

I've come across multiple people who were diagnosed with this and have been in remission for years and decades. Some were told that they would die.

The thing that made this biggest change for me was taking high dose proteolytic enzymes. They clean up the byproducts of the antibodies in the blood. I also reduced my stress by making big changes to my life. I started meditating. There is so much you can do to change your health.

Colin I just want to say I'm also a huge fan of what we
Do in the shadows !!!

I've met many emotional vampires 😂

Also look into Sjogren's Syndrome. There can be a lot of crossover symptoms with lupus. It affects everyone differently. I developed SS after a nasty bout of flu 18 months ago.
I was also in a chemical menopause. I found out that a combination of a few things can trigger SS - big hormonal changes & heavy viral load being 2 of them.

I lost my mobility over a few months & was referred to a neurologist. I was lucky & diagnosed within 6 months after a lot of tests. I had "an unusual and extreme reaction" where my immune system attacked my nervous system. My legs stopped working. For a while I was virtually bed bound & needed a wheelchair.

Prednisolone helped enormously. I am now reducing the dosage.
I still need a zimmer frame to walk but am now strong enough to use a mobility scooter rather than a wheelchair.

I am under both neurology & rheumatology. Unfortunately I couldn't get physio on the NHS & now pay to see one monthly. The exercises make a big difference to strength.

I am very slowly getting stronger. There is no cure but proper management is key to getting back to as normal as possible.

Don't give up 💐

@CoffeeBeansGalore Interesting!! 😟😴(sorry about stupid emojis but can't delete them) I have Sjogrens too. It's a horrible condition like the other autoimmunes are. Ditto developing it after a flu in 2019 & did go into ' remission' for a year returning post Covid, but in hindsight suspect is been brewing up for years as it can take 20 or more years for AI's to manifest. Ditto the neurological element, it's nasty, feels like wading through concrete and lifting weights plus wasps stings. Never been offered steroids, just hydroxychloroquine,rheumatologist just gives blank stares re neuropathy but seeing the neurologist in June so will mention prednisolone and ivig immunoglobulins as I'm pretty much housebound although can walk. Neuropathy is a known symptom of , it seems sometimes it goes more for the eyes and salivary glands & other times the nervous system. Seeing a functional medicine/registered nutritionist so time will tell on that. Alot of my inflammatory markers have reduced weirdly or gone normal but the neuro stuff continues. We have to be our own health advocates a lot of the time as these conditions seem to fall through the cracks of medical care.

@CherryRipe1 I had an infusion of Rituximab last November which enabled me to drop the steroids further than I'd managed before with none of the previous issues. Started on 60mg daily. Now down to 10mg.
Due to see my neuro consultant next week to discuss next steps.

Good luck with your appointment 🤞

@CoffeeBeansGalore Ah interesting, I've seen Rituximab and Leflunumide mentioned in AI forums and my scientist daughter nags me to speak to the consultants about it. Amazing! I'm so pleased for you that Rituximab had such a positive affect & you have been able to taper down the steroids. Are you NHS or private? Good luck with your appointment also!
@AnyaMarx All my best wishes for a diagnosis & positive outcome.

@CherryRipe1 NHS Scotland. I've been lucky & my Drs have been brilliant. I was difficult to diagnose initially as didn't present with "traditional" symptoms & blood tests coming back with odd results. Tested for everything from Lymes disease to cancer, including 2 lumbar punctures. Neurologist was convinced it was Sjogren's after approx 4 months but I needed a salivery gland biopsy to confirm for definite. They did not give up on me & I will be eternally grateful. I'm still seen every 6-12 weeks so they keep a very close eye on me. It's been tough going but I have felt constantly cared for.

Thank you for your kind wishes.

I was dx swiftly also by a neurologist through antibodies, not a rheumatologist, & like yourself was tested for all sorts incl HIV, MS (MRI), mono. Good heavens, lumbar punches sound drastic but at least it was comprehensive & they got to the bottom of it, Sjogrens can be tricky if you're seronegative, no anti Ro and La. Have heard lip biopsies can be painful . NHS Scotland sounds a lot better than here (London).

I got a lupus sle diagnosis after spending 6 weeks in hospital after giving birth. I had pneumonia and then a major flare up, which I believe was induced by an antibiotic they gave me. 8 years later, I keep flaring up more often now and seem to be on steroids a lot more. I have all the symptoms in your initial post

Ask to be referred to a rheumatologist.

In terms of the heart pain, I had the same and ended up in A&E when it was at its worse. ECG was normal, X-ray showed my heart was enlarged (luckily I had an X-ray a couple weeks prior, so they could compare) Ecocardiogram showed fluid around my heart. I spent a week in hospital having it drained.

Lupus is awful until you are diagnosed! It affects every part of your body. There’s a really good facebook group called Lupus UK. It’s really helpful, and everyone is quite knowledgeable about what tests to ask for. Now it’s under control, I’ve pretty much resumed my normal life where at one point I genuinely thought I was dying.

I've asked twice to be referred to rheumatology and twice been told no .

I'm asking again on Friday and if the answer is no I want the reasons in writing.

Ive now developed a rash over my chest and neck .

I couldn't sleep into 7am this morning as every time I laid down I began to wheeze and cough .

I'm counting down the days until Friday .