Ciclosporne, work, stress and tired 😭

[imzi]

Hi it’s me again,

Sorry for ranting again I’m just going through a difficult few weeks.

To begin with I have sle, raynauds, fibromyalgia, hypothyroidism, adrenal insufficiency , itp and and Sjögren’s syndrome all at the age of 25 😩

For my lupus I have been given azathioprine and methotrexate both of which I had to stop due to my wbc dropping, my nurse called me saying they feel I should be on some sort of medication so are going to start me on Ciclosporin.

Anyone ever been on Ciclosporin and what are your thoughts? The side effects scare me.

Also I’m extremely exhausted every day, hanging the washing up feels as though my arms are getting chopped off 🙈 if I walk too much or too quick I’m breathless! I’m sick of lupus i need to put my life on hold just because of this horrid disease and no one understands!

I’ve also been trying to come off the 12 hour shifts at work as I find them far too exhausting and my manger said he can’t do anything as I’m contracted to work them 😭

Sorry for ranting I’m fed up and tired xx

[lisa___s]

I’m with you on hanging the washing, such a simple task to most but I feel like I’ve got the most heaviest weights on my arms and the pain is horrendous.

Sounds difficult for you at work, is there any chance they can offer you a different position where 12hour shifts are not contracted?

I feel for you being so young with these illnesses, I’m struggling at the age of 36.

Just remember we’re all here for you in these difficult times, your never alone.

[imzi in reply to lisa___s]

I’m glad someone else understands thought it was me just exaggerating!

I’ve tired to fight for this as there are staff that work the 7.5 hours but they have different contracts. I have taken it to the Union now. As lupus does come under the equality act so I shall see what happens it’s stressful waiting.

I’ve had lupus since I was 18 and it just gets harder! Thank you so much for taking the time to reply. X

[lisa___s in reply to imzi]

Good luck, let’s hope you get a positive response from the union.

[Paul_Howard Partner LUPUS UK]

Hi imzi ,

I'm sorry to hear about your unsupportive employer. Have you got an HR team at work who you can contact and request an occupational health assessment? It might be helpful to have a professional provide your manager with their expert opinion about what adjustments you may require?

If you need more information about lupus and employment, we have two booklets which you can read/download at lupusuk.org.uk/working-with...

If you need physical copies of these booklets posted to you, please send me a private message or email me at [e-mail] with your name and address.

[Rachaelgreen]

Hi Imzi! You’re not alone.

It is very frustrating to be sick, I hope you’re feeling better!

I started getting frequent and abnormally big recurrent mouth ulcers and the doctor could not diagnose the root cause to it.

Eventually I was treated symptomatically with prednisolone to reduce inflammation etc and it takes months to recover each time.

A few relapses here and there, my doctor decided to try cyclosporine/ciclosporine on me - an autoimmune drug to suppress the flaring episodes.

I took over the course of a year in 2018. As I am very petite at 160cm, the calculated dosage was 175mg/day, tapered to 150 and 125mg over a year.

I had very bad initial side effects which included: warming on the fingers, toes, heart, and increased heart palpitation.

Easily contract UTI as well as common cold and food poisoning. As cyclosporine is intended to suppress my immune system, I was exposed to greater bacteria infection.

However after 3 months my body got used to the drug and I was cruising at an acceptable dosage 150mg and below.

After a year of consumption, i was scheduled to ween off the drug, which I did eventually in Dec 2018. Unfortunately the ulcers relapsed again in Mar 2019, and I had been on pred to reduce the inflammation, and now back to taking cyclosporine again as it seems like I cannot do without the drug.

I hope whoever is going through the same symptoms know that you’re not alone! I would often cry thinking why do I have to go through this, and reading the same posts that you guys are going through does give me a little more strength that I’m not alone.

Speedy recovery everyone!