Update on health situation: Remission ??Re : Update on Health situation!

[KnitSewPurl]

Hi Everyone,We were told in clinic that on Thursday that my lupus could possibly be in remission??🤷 But I still have this spots on my leg and I am extremely tired and exhausted. Keep falling asleep all the time. So dangerous really. Have to keep myself awake with music and noise in the background. I want peacefulness but can't have to have noise in the background 🤷.

But there is no mention of it of the conversation of her saying that I could be in remission. She did say she wants to have the spots checked out by dermatology but waiting list is huge. Plus I am due for surgery and my throat currently is not great. Seem to be aggravating by sinuses?? As it is very coarse also coughed up really nasty phlegm with blood in it. Not too sure why on earth this is all happening 🙄.. Just glad that I am seeing chest consultant tom hoping that there will be some acting from it . Sweating+++ and going from hot and cold too. Currently again Arghh.. also noticed odd discoloration on my skin where the bruising is like pigmentation discolouration which is very odd. There is a pigmentation pattern. This was not there when I saw the consultant on Thursday. Yes , all very bizzare. I noticed it on Sun night whilst undressing as I was very poorly over the weekend. Been unable to breath due to this massive phlegm caught in the middle of my throat which I managed to cough out finally. So , I did save it for consultant to view it and decided if he wants to send it off. It has been in my fridge in a sealed sterile glass tub only thing I could find. Better than anything else.

Sorry , too many things happening all at once very confusing.

Chest - appt tom , hip- surgery next week , SLE - possible remission??

Weird pigmentations on calf of leg next to bruising (been there for nearly 3 years now)

Any ideas would be greatful ?

SLE -remission no meds . To treat conservatively only on painkillers.🙄. Which I am already currently as I have already been off now nearly a year from Hydroxychoroquine.

Been diagnosed with Sjögren's with my eyes also very dry mouth , no wax in ear, dry throat and blisters in my tongue, the last week which, consultant did not even look in my mouth or check my glands.

Which was absolutely shocking knowing that she should have has I have already told her that I have sore mouth .

This was not my usual consultation and we were also not aware that we were having a second consultation it did not even say in our letter. It just says you have an appointment with a rheumatology team. A standard letter🙄. How are we supposed to know . I had to ask for my last consultation letter from my GP as I did not get it .

Great 👍 how to get rid of your patients 😉 and have a good rapport with your clients 😉..

Apologies for the rant , sorry if it sounded a little disjointed my brain is alittle disjointed at the moment too much information in there just waiting to flush out ..

Hope all of you have a good week.

12thNov

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Update on health situation: Remission ?? - LUPUS UK

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Update on health situation: Remission ??

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KnitSewPurl

22 hours ago

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8 Replies

Hi Everyone,We were told in clinic that on Thursday that my lupus could possibly be in remission??🤷 But I still have this spots on my leg and I am extremely tired and exhausted. Keep falling asleep all the time. So dangerous really. Have to keep myself awake with music and noise in the background. I want peacefulness but can't have to have noise in the background 🤷.

But there is no mention of it of the conversation of her saying that I could be in remission. She did say she wants to have the spots checked out by dermatology but waiting list is huge. Plus I am due for surgery and my throat currently is not great. Seem to be aggravating by sinuses?? As it is very coarse also coughed up really nasty phlegm with blood in it. Not too sure why on earth this is all happening 🙄.. Just glad that I am seeing chest consultant tom hoping that there will be some acting from it . Sweating+++ and going from hot and cold too. Currently again Arghh.. also noticed odd discoloration on my skin where the bruising is like pigmentation discolouration which is very odd. There is a pigmentation pattern. This was not there when I saw the consultant on Thursday. Yes , all very bizzare. I noticed it on Sun night whilst undressing as I was very poorly over the weekend. Been unable to breath due to this massive phlegm caught in the middle of my throat which I managed to cough out finally. So , I did save it for consultant to view it and decided if he wants to send it off. It has been in my fridge in a sealed sterile glass tub only thing I could find. Better than anything else.

Sorry , too many things happening all at once very confusing.

Chest - appt tom , hip- surgery next week , SLE - possible remission??

Weird pigmentations on calf of leg next to bruising (been there for nearly 3 years now)

Any ideas would be greatful ?

SLE -remission no meds . To treat conservatively only on painkillers.🙄. Which I am already currently as I have already been off now nearly a year from Hydroxychoroquine.

Been diagnosed with Sjögren's with my eyes also very dry mouth , no wax in ear, dry throat and blisters in my tongue, the last week which, consultant did not even look in my mouth or check my glands.

Which was absolutely shocking knowing that she should have has I have already told her that I have sore mouth .

This was not my usual consultation and we were also not aware that we were having a second consultation it did not even say in our letter. It just says you have an appointment with a rheumatology team. A standard letter🙄. How are we supposed to know . I had to ask for my last consultation letter from my GP as I did not get it .

Great 👍 how to get rid of your patients 😉 and have a good rapport with your clients 😉..

Apologies for the rant , sorry if it sounded a little disjointed my brain is alittle disjointed at the moment too much information in there just waiting to flush out ..

Hope all of you have a good week.

12th November

I saw a new Chest consultant yesterday as I coughed up blood over the weekend first time ever and it was quite a large amount too. Too it to show her.

Plan : to get another sputum sample before starting antibiotics and1 after completing it also on Nystatin-Yup , she had a look at my tongue and throat and saw my blisters .

She has requested

Immunology test there are 3 different types of them she has requested and a MRI of my Chest. I am having my blood test done on the 27th it is the earliest date they have . This is the first time someone actually triggered an Immuno test. All these years I have said I needed one . Because of my multiple allergies and what lack of immunity and take on vaccines and no one actually bothered. I am actually glad now someone is doing something

This month has been the busiest month of hospital appointment. Every week there has been a hospital appointment.

Thanks for your replies much appreciated x

[Suvi8901]

Hi there,

Thanks for posting. I find, like you the word “REMISSION” difficult to accept as a lupus sufferer.

In a nutshell with me: consultant Rheumatologist lowers my MMF dosage saying that my lupus nephritis is in remission, 2 months later I have a huge SCLE eruption, red, painful and itchy red rashes all over!

Had to take selfies for a dermatology appt! Consultant agreed. Upped my MMF + put me on 30mg Prednisolone daily for 4weeks then 10mg daily until next appt!

Now I’ve got a joint dermatology/rheumatology face to face appointment to sort me out next month 👏👆.

I firmly believe that with lupus we all suffer if the liaison between medical depts is lacking.

GPs flounder and various depts don’t liaise with each other well enough? Sad.

Take care.☝️

All the best!❤️

[KnitSewPurl in reply to Suvi8901]

Hi Suvi ,Sorry you have been having it rough too.

Yes , remission it not really a concept for Lupus patients because it is really rarely for them to go into remission. I mean rarely. Which is why I was surprised she said a possibility of remission looking a my blood test but I had a peak at my C4 it showed it was very low. Which I thought it was very bizzare. I mean seriously low.

In Dec my CRP 49. I was not able to see the CRP results the one taken with the C4. Rest of the results was very uneventful really borderline. So was classified normal.

Have a look at my reply to SCs . I will post an update here in a moment just very tired and sleepy.

[Jerg]

Sorry to hear, I don’t think you are ranting just stating the obvious.

I believe doctors, consultants, nurses and other medical professionals are all doing the same these days. They are under instructions from government irrespective who is in power to not treat patients as before, they don’t listen or check for signs just very dismissive.

Unfortunately for me I don’t bother anymore, as I feel they have no interest in caring for the sick or even treating us properly they just follow government policy and rules.

Sorry for being a kill joy but this is my honest opinion due to my own personal experience and others that I know.

[KnitSewPurl in reply to Jerg]

I think COVID has alot to be blame for that . Since COVID came in to play thing has not been the same. The careness and wanting to care for patients it not there anymore. I don't really see it. As though it is a job they do it and get paid for it. That is all they do. There is no desire or love of the job. No pride in wanting to care for your patients to make them feel better. These has been lost. You will only see these in the older consultants they are the ones that take pride in seeing their patients getting better and seeing good quality of life.

Why and how I know that because. After being treated by 5 older consultants (in different areas) and 2 younger consultants I can see the differences in them in their mentality their mannerisms, how they treat their patients. They are different compared to the younger generation of consultants .that is how I see it .

I have been lied to by the spinal team(young ones ) and the hip Physio(she was exceptional lazy) was late 2 out of 3 of my appointments even the receptionist was not impressed all NHS and also by the pain consultant- when I ask to view my MRI - excuse was oh I don't have excess to that , he was telling lies . Because all consultants at the hospital got excess to MRI , scans and bloods. He could not wait to shuff stuff of CBD to me . When I really do need it . All I needed was for them to be honest and tell me what I had . And what treatment was available. so I don't hold much confidence in them .

Before COVID ,things were a little different, people were honest with your diagnosis and less stress or up tight with you indirectly.

Sometimes,it makes me feel shameful to even call myself an ex nurse because of all these I see because of those that give the bad name.

Having good treatment sometimes gives some consolation and off set the bad ones we get but it is just a rarity isn't.

[Jerg in reply to KnitSewPurl]

I agree with you , nothing is the same anymore.

[KnitSewPurl]

Thanks for your information SC, the thing was the appt we had on Thurs was my second opinion which we were not aware of ..So , currently waiting for Dermatologist appt for my spots to be viewed.

exhaustion and tiredness is my worst nightmare. I am literally falling asleep. Wake up not feeling refreshed after having slept through the night. Surgery is next week for my hip.

I saw a new Chest consultant yesterday as I coughed up blood over the weekend first time ever and it was quite a large amount too. Too it to show her.

Plan : to get another sputum sample before starting antibiotics and1 after completing it also on Nystatin-Yup , she had a look at my tongue and throat and saw my blisters .

She has requested

Immunology test there are 3 different types of them she has requested and a MRI of my Chest. I am having my blood test done on the 27th it is the earliest date they have . This is the first time someone actually triggered an Immuno test. All these years I have said I needed one . Because of my multiple allergies and what lack of immunity and take on vaccines and no one actually bothered. I am actually glad now someone is doing something

This month has been the busiest month of hospital appointment. Every week there has been a hospital appointment.

Hopefully we get somewhere with it. This time.

[StriatedCaracara in reply to KnitSewPurl]

Sounds good KSP, hoping things work out this time. Take care🙏

[KnitSewPurl]

You are not seeing any doctor after your test being done at the eye clinic?Mine is not till Dec . Cannot wait to see them 😠..

[StriatedCaracara in reply to KnitSewPurl]

I phoned to check and they said it was just scans, no doctor's appointment. Would not know from letter

[KnitSewPurl in reply to StriatedCaracara]

If that were to happen to us we would be livid. And would be questioning why? Last appointment itself the doctor made a mistake not just one small one but a huge one .. which I will be bringing it up on the next appointment. And I will not let this go because it has effected my health and wellbeing.

[StriatedCaracara in reply to KnitSewPurl]

I almost feel like not going today as one eye has been so bad they will want to operate. Have not seen an eye doctor at this clinic in person for three years..Really don't trust them.

I go to research papers giving different views on cause of issues. Just not in scope for them but they try to fit to wrong things..the things they do cover..

[KnitSewPurl in reply to StriatedCaracara]

Second opinion privately ?? Mr Leyland. He saw my eyes straight away . You can call the secretary and make appointment. Or email her . With detail of your eyes. She will give low down of breakdown of cost. If you have private insurance it will be better still.

[StriatedCaracara in reply to KnitSewPurl]

Thanks no insurance as always thought NHS was there..which is not so for some of us - now mixing and matching a bit.Thanks for recommendation 🙂

No doctor today. Healthcare assistant not a nurse said could not take my notes but pointed out they answered questions on the sheet I was given.

Outcome photographer said I might hear back in 2.5 weeks otherwise phone them so assuming there is something wrong othèwise would prompt.me to chase them,

Photographer also moved her photos out of my view. So have to wait. Wonderful not.

[KnitSewPurl in reply to StriatedCaracara]

Lol, what are they hiding from I were you I would say to them nicely that you would like to see to see your eye photos. To see if there is any difference from previous and the current ones. They are supposed to show patients their pictures. If they are hiding something what are they hiding from or about? There is nothing to hide about. Nothing sinister 😂 what is wrong with the NHS ..

[FredaN]

I feel like I'm in a similar boat - seems like many of us are. Sometimes it feels like I must be explaining things in the wrong way, but it seems like if they decide you're ok, you're "ok" It seems like each department thinks it's not their expertise either, just happy to talk for five minutes and say "it's probably just X", but not actually do any investigations to make sure it really is "just X". For people without other health problems maybe that works, but for us? It doesn't make sense and I keep saying to my husband, that way of working must backfire on them. Maybe I've just encountered too many consultants with a god complex.

I have a darkened area of skin on the side/back of my calf too, which I intend to ask about at my appointment in a couple of weeks, so I'll try to remember to tell you if they say anything. Not sure how long it's been there, but over a year at least.

I'm drowsy all the time too, feels like I've got ulcers in my throat possibly sinus and/or acid reflux related, low grade fevers. Partly wondering if I should do a Covid test, but it's been going on around May when I had a cold and it threw me off course. Do you get post-nasal drip? Sometimes that's what mine feels like, especially if I'm coughing stuff up, but at other times it's hard to pinpoint what's going on. I'm so lightheaded all the time - I was saying yesterday I don't even feel safe crossing the road by myself!

I've not been getting letters recently either! Sorry for ranting about myself there - I really get how you feel and it's even harder to deal with when you feel so ill on top of it all. I'm hoping my blood tests will come back abnormal in a couple of weeks, then maybe they'll do something which makes me sound crazy... I am a bit worried I'll lose it at some point and when they ask me what my current symptoms are I'll say "what's the f****** point, because you won't do anything anyway?" (and I don't swear normally!)