Help needed over so many things please.

[cakerbaker]

Cakerbaker

8 hours ago

I have only had 2 vaccines as had a recent, well since Christmas flare where my skin started to break down etc so have waited until that settles as I too get a post vaccine flare. I am unsure what to do next. Any advice from anyone very gratefully received. I am still new to lupus and although I am a nurse when it's yourself it is more difficult to navigate something when every bit of your body is intent on destroying itself..Can anyone help?? Forgot to mention my hair is coming out, I have skin lesions which are sore my joints still hurt too. Lupus really is becoming the gift that keeps on giving is t it.

My GP says ask the rheumatologist and he is off sick so nobody is willing to advise me really.

People who live it every day I always thing are the best source of advice. Thanks in advance.

[Krock1]

Have you seen a dermatologist for the skin issues? They may be sensitive to autoimmune symptoms and have some solutions for partial relief.

[KnitSewPurl]

hi cakerbaker,are you on any medication for your lupus? like Hydroxychloroquine or been given a stat dose of depo medrone. (it is a steroid base) usually a one off but can be given every 6-8months.

Hair loss , skin lesion, all typical lupus as I have them all. When you say skin breaking down do you mean that they are peeling or coming up in purple like blisters.?

What about the Rheumatologist helpline your hospital should have a helpline.? if not they should get you in as an emergency for you to come in to see someone .

Are you in any pain? you GP can provide the pain relief side. Cakerbaker It is not easy the early stages to get it in control with out meds . you needs meds to control it to stabilise it .

As an ex nurse I had to give up my job because of severe migraines that led to SLE. it took them 3 year to get a diagnosis. I can understand what you are going through.

Hope you get somewhere and some results with treatment xx

[Ilovepuppies88]

Hi cakerbaker. You are not alone, I've had a horrible flare after my first Vaccine but then the next one was OK. I've been diagnosed just over 6months ago, it's hard and takes time to get used to and know what works for you. It will get better with time. It's of course no easy journey but you will learn to be OK with it and how to manage it to some extend. I have had huge hair loss, at first it was scary now I'm just like it is what it is I just am hopeful it will grow back at some point, I run my fingers through my hair and it comes out like there's no tomorrow. I would advice speak to your rheumatologist when you can and note everything down what's new, what bothers you the most, keep a diary of it, it has worked for me to ensure I raise any concerns I have, any bad flare ups I know when they've happened and how long for etc. My skin hasn't really improved but I'm leaving it to time now that I'm on medication. Also it be good to ask your gp or rheumatologist to book an appointment with a dermatologist if you havent already. I have been the annoying patient consistently emailing both my gp and rheumatologist each time something is up, so much so I get appointments quick now, if you have new symptoms or are really concerned don't be afraid to ask for help, I was at first. I copy everyone into my email. I never used to be that patient but since being diagnosed with lupus I am not messing around! It will get better I promise you that, we find our route eventually. Take care xx

[Krazykat26]

Hi cakerbaker 🤗🤗gentle hugs to you..you're not alone!! This forum is so kind and supportive..we will help you navigate the choppy seas.When first diagnosed it can still take a long time to find the right combo of meds. The usual medication that's prescribed initially is Hydroxychloroquine which is an anti malarial drug with immune modulating properties. Hydroxy can take up to three months before you feel any benefit..sometimes it's even longer. Are u on any meds? Who diagnosed you?

Minimising stress is crucial with lupus coz being stressed actually makes us feel worse. As u are working as a nurse I can only imagine what kind of stress there is in your line of work right now!!

I was a mental health nurse for many years in my youth.

As you are having problems with your skin I'm wondering if u are photosensitive 🤔Do u feel worse when exposed to direct sunlight.. or artificial lighting such as flourescent? The reason I ask is because I am very photosensitive and hospital or clinical settings make me ill quite quickly if I'm not covered up appropriately.

Many of us find it helpful to keep a symptom diary to make notes of symptoms which we can then look back on to ask appropriate questions at doctors appts..as you know they don't last very long. With using this method over time it's possible to see possible triggers that cause flares. Note anything even if you think it's irrelevant. Also take pictures of skin lesions. There's a very helpful site called DermnetNZ if you want to have a look..lots of info and pictures of different skin problems..u can match the rash so to speak.

I have a type of lupus that mainly affects my skin so I was diagnosed by dermatologist initially but now I have a rheumatologist too.

We all have lupus n other autoimmune disorders here..we all live with this 24/7..however we are all unique and no two lupus patients will experience exactly the same symptoms. You've definitely come to the right place. I've learnt so much about autoimmune conditions..I now feel more confident when I talk to the medics and that helps me to feel more in control.if that's even possible😹

If u Google the spoon theory you'll find out about how hard it can be living with lupus. It's also helpful to show it to your friends n family so they can better understand how hard it is.

I'm so happy that you posted..you've had some great replies. I hope you stick with us coz this group is a great place to vent, rant, share heartwarming stories and we even have a good ol' giggle at times.

Hope some of this helps you. Remember you're not alone ok? 🌈😽😽Xx