I'm 26, from Scotland. I've had symptoms of SLE/autoimmune symptoms for months and months now. They are distinctive Malar rash, joint pain, muscle pains, extreme fatigue, over a stone lost in weight. Sensitivity to sunlight, reynauds. My GP ran some bloods and said all they had to do was refer me to Rheumatology. Off the top of my head, my ANA was positive. Anti nuclear titre factor is 1:160 speckled. Low creatinine levels, thyroid function has ?SLE next to it.
Due to Covid I am still waiting to see Rheumatology. However, my symptoms are getting worse. My Malar rash in particular. I should add I had my first Decapeptyl injection on Monday for Endometriosis treatment. Should I call my GP on Monday to explain I'm getting worse?
Thanks all
Rhiannon
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RhiannonT
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Yes, you should definitely be in touch with your GP. If you need to be seen sooner, your doctor may be able to expedite that. Also, they are capable of monitoring and treating certain symptoms.
Incidentally, my Creatinine levels have been low for years. I wasn't told this by my GP, I found this out myself when I requested my medical records. They're not massively low, but they have been low on and off for years. X
Welcome to the forum. I’m in Scotland too and would say Yes, definitely phone your GP and keep on at them until they take you seriously . As someone else has said there are several treatments they could try.
There's a NICE guideline for autoimmune and inflammatory conditions during Covid for rheumatologists. It says:
For urgent new referrals from primary care for suspected inflammatory arthritis, suspected autoimmune connective tissue diseases and vasculitis (including giant cell arteritis), offer a phone or virtual consultation followed by a face-to-face appointment after asking about COVID‑19 symptoms.*
NHS England guidance** from 23rd March (lockdown day!) says this should be an urgent referral:
a suspected new-onset autoimmune connective tissue disease (eg lupus, scleroderma) or vasculitis. Symptoms include extra-articular manifestations such as a rash, Raynaud’s (colour change, with hands and/or feet turning white– blue and/or red in the cold), mouth ulcers and/or sicca symptoms (dry eyes/mouth) in association with their new inflammatory arthritis
There's brand-new guidance from the British Society of Rheumatologists if your consultant baulks at a face-to-face consultation. It says:
Many urgent referrals for patients with suspected inflammatory arthritis or systemic disease will usually require a face-to-face review and therefore are not best suited to remote consultations.***
Hope your GP is understanding and puts a call into rheumatology for you!
Thank you so much, this is really helpful although unfortunately I'm in Scotland so idk if the NICE guidelines are the same, hopefully they are! Will call GP first thing. Xx
I'm in 27, was diagnosed with SLE at 19, and live in Scotland so understand all too well what you're going through. Sadly a lot less services are running here during covid than there are down south.
When was your referral made? I'm under a rheumatologist but have been on the waiting lists for cardiology, urology and neurology since February. I've been told that cardiology clinics are completely closed except for suspected heart attacks so I'll probably be another 6-12 months waiting.
The positive news is that rheumatology clinics are mostly operating via phone call, and they often have helplines which are still operating. There will still be a backlog and delays with new patients though. Definitely talk to your GP and explain in what way things are worsening. They may be able to call the rheumatology department to see what the waiting list status is and if theres any assistance they can offer meantime.
If your rash is causing serious issues then a dermatology referral will also be needed so you can ask them to at least process that, although you won't see them for a while. In the meantime they may be able to provide you with pain relief and steroid cream. Lots of GP prescribe high dose steroids without much rheumatology knowledge or input, which can cause long term issues so be very wary of that. I wouldn't recommend starting those without speaking to a consultant, or having the full blood panel done.
There's also lots you can do to ease symptoms while you wait. Anti inflammatories can be good for inflammation pain relief. Radox epsom salts, gentle stretches (yoga & pilates), and heat pads can also be really helpful for your joints and muscles. Things like tens machines help some people as well as acupuncture (difficult to get at the moment).
For the rash, make sure you wear suncream, do a really good simple skincare routine and don't wear make up on it everyday if possible. You will need to get a really high factor and five star UVA suncream to wear everyday until they decide whether or not you are photosensitive. You need to apply it to your face, any exposed skin and the backs of your hands.
Lupus UK has lots of really good advice for this and managing the condition in general. I hope it's not lupus but if it's any rheumatology condition then the self management is very similar. It's just the medications which are different.
All the best and if you need to talk to someone feel free to message me.
I tried to get a GP appointment yesterday. The 'care navigator' didn't deem my problem as urgent by the time I got through after being on hold for 40 minutes. Tried again today, same thing happened. I am still feeling the same. Very very weak and tired, sore joints, no appetite, muscle weakness. And if I put on even a couple of pounds in weight I lose it again very quickly. Perhaps the thing that is getting to me most is the Malar rash on my face. It is so red a lot of the time and it's quite itchy and sore. I am currently (had my first injection a week ago) going through temporary Menopause due to Endometriosis and I don't know if the surge in hormones has caused things to flare or if this is me experiencing side effects. But it's really hard atm.
I am trying to wear as little makeup as possible, stick to a very simple skin care routine. But I do get very self conscious 😶😔 I am on Pregabalin 2x75mg a day for Neuropathic pain which is still sometimes not touching it.
I'm also a support worker in a care home so things are a bit stressful there atm.
I'm getting awful pain in my back and sides too and I know my Creatinine levels are low.
Sorry for the rant guys, I just feel I'm a bit between a rock and a hard place atm.
Scotland, was first diagnosed 12 years ago and since then I haven’t had any flares until now, so I’m very lucky but this flare has been bad, it’s taken 4/5 weeks of constantly pestering the gp with how sore I am, bloods each week and them pestering rheumatology but I finally got a phone consultation and now on steroids and will be seen at at the clinic by the rheumatologist too! Hope you get sorted ASAP x
I phone the referral management service today. I'm on the waiting list but as of yet they're still not making any appointments for new patients due to backlog with Covid.
Hi, I've just read your post and hope that there has been some postive steps forward for you. I thought I'd reach out as I struggled with endometriosis for years and although I didn't have your particular drug I also have injections in my tummy that put me into menopause. So if you ever wanted to reach out to someone who has an automimmune disease and endo please do let me know. Thinking of you and so hope that malar rash is sorted. Mine is hovering at the moment, sightest trigger and I'm like a becon. xx
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Help MRI referral and scared 😢
Positive ANA. Getting Rheumatologist referral.
How to cope with the waiting?
Negative bloods could it still be SLE
Waiting for diagnosis
