This is my first time posting, so hi everyone. I've been reading some of your posts and replies but it's taken me a while to post something myself. I think I've been in denial about what's happening.
I'm 54 years old and it was confirmed that I have lupus about 6 weeks ago. When I think about what I've experienced over the years I think I might have had it since my early 20's.......migraine, one-time seizure, bad reaction to insect bites, raynaud's syndrome and not getting things like a cold, flu or covid,
My diagnosis came about when I got a skin rash that was first thought to be a fungal infection and then discoid lupus. Following blood tests and a skin biopsy lupus was confirmed, initially SCLE. I'm under a dermatologist but not a rheumatologist yet. A referral has been done.
Whilst waiting for a few weeks for results, I experienced what was thought to be a TIA but MRI and CT scan didn't show anything.
Following my diagnosis, I was put on a 8 week course of steroids 6 weeks ago and also hydroxychloroquine. I'm gradually reducing down from 40mg steroids to 7.5mg today.
I had my covid and flu jabs on Monday. I've now got a new rash, different to the last one and have the butterfly rash on my face. I have a sore throat and generally feeling unwell. I've been advised to go to A&E by the GP for bloods and other tests. Has anybody else experienced this after being vaccinated?
I woke up this morning feeling totally unsupported and at a loss as to who I should be contacting. My GP's aren't much help when it comes to lupus. How do you all cope with the complexities of the condition? Any advice would be appreciated.
Thank you!
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Coldplayfeet
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I am so sorry that you are going through all this. I think your situation is more complicated as you are not fully in the system (e.g. rheumatology). My initial thoughts are..
Vaccines can cause further immune system deregulation and consequently some people will go into a Lupus flare ( rather than just a few days of feeling grim) although not so common, it can happen.
You have only been on Hydroxycholorquine for 6 weeks and it can take up to 3 months for it to reach efficacy.
Add to this you are tapering down your steroids, which in itself can make us either feel awful or cause our disease to become more active.
If your GP has advised you to go to A&E then perhaps you should do so- they will be able to see the status of your rheumy appointment and will be able to push it forward if they are concerned or contact an 'on duty' rheumatologist if they have one. They will also check your steroid tapering etc. Did the GP alert A&E that you were going to attend? It really is worth seeking help - I wish, in hindsight, that I had gone to A&E after vaccination - I ended up with pericarditis which is now chronic (please don't worry as this is really very rare and happened within hours of vaccination). My point is, we can put things off that we really shouldn't. Your GP may well be advising this as they may not have come across many Lupus patients before. I have found that the most experienced (and often great) GPs know their limitations and hence they advise us to get back to the experts.
Alternatively, contact the dermatology department and seek advice.
Lastly, it's great that you have reached out. We're a friendly bunch and try our best to help each other. Do let us know what happens if you feel able. xx
I know as long as its not a live vaccine jabs are recommended - but hearing of many people that have reacted worse than usual, or had complications from them does make me wonder if it is a roulette wheel or hit and miss how you may receive a vaccine (be it flu or covid). I know you said yours was quite rare - but you are not alone. Have the doctors said much to you following pericarditis? Do you still have jabs when offered.
Although not alone, the Green book reports less than 900 cases of pericarditis or myocarditis- so it is by and large an unlikely event, (accepting that there will be under reporting) I reacted in a similar way to both the flu and my last Moderna booster. I am now on both Hydroxychoroquine (the past 4 years) and Azathioprine (2 months) having tried other immune suppressants. It is a tricky one as pericarditis is one of the criteria for Lupus, so coincidence or vaccines just tipping me over! Before this disease I had all vaccines going including Smallpox with no problems.
In agreement with the consultant I am not having any more vaccines but this took a couple of years of vaccination and with increasingly negative impact for us to come to the conclusion that the risks outweighed the benefits. Make no mistake I am very aware that this makes me more vulnerable and have to be more careful. My first bout of flu was the trigger for this disease and so shouldn't be underestimated. I would (unless really not advised) recommend vaccination.
My pericarditis is chronic and I am just hoping that the Azathioprine will settle it down. It's a wait and see situation at present.
Did you go to A&E or seek more help from dermatology? x
Hi RosieA - sorry I wasn't the original poster, just upon reading your reply found it very helpful, but also interesting regarding the vaccination side as its been on my mind lately - given we are in the jab season again.
Its relating to my daughter (24) who was diagnosed this year and is on the same medications as yourself at present (plus a few others including steroids). Still waiting to get it under control and as been offered vaccinations obviously just wondering about the risks.
Totally understand every one reacts differently and certainly not refusing anything as know vulnerable as it is. Just trying to get a bigger picture view.
Hoping Azathioprine makes the difference for your pericarditis when it kicks in soon.
Ah sorry, blame Lupie brain! If you google The Green Book for covid vaccination it will give you a lot of information. Well written, discusses risks etc based on reporting. I found it very useful. When you pointed out my error I remember your posts. My consultants have all been towing the party line in recommending vaccinations, it is only recently that mine has altered her opinion for me.
When I was first diagnosed with my autoimmune disease I had flu, pnuemonia (sp) etc with no side effects. As in all aspects of life, nothing is 100% and sadly in this instance it is only once the vaccination is done do we know how we will react. Having said that, you are very proactive so at the first sign (if any) of an unusual side effect I am sure that you would seek immediate medical help. That was my mistake, I put it down to rib pain and everyone (medics) joined me down the rabbit hole until it got to the point it did and an echocardiogram revealed the pericarditis. Now I resemble a ferret - I won't allow anyone down that hole again!! Hee hee. xx
Oh goodness - bless you. It is so easy to explain away various aliments separately. Did that with my daughter through her teens and into adulthood. In hindsight (and now I am educated in Lupus) I can see it has been there all along waiting for the trigger which came this year. Just forever put various things down to other causes and not looked at the collective. But now anticipating and trying to problem solve where possible before they occur - feel a bit guilty for not doing more when these minor rumbling symptoms were there over the last decade.
Thank you for your advice and pointers for more information - will get reading.
You should avoid feeling guilty. It is not your fault but the insidious nature of this disease. My symptoms started 5-6 years ago and although the GP was on the ball and got me into rheumatology within weeks, I have gone through different diagnosis from inflammatory arthritis, undifferentiated connective tissue disease and finally Lupus. I was just a collection of symptoms until it all came together. Your daughter is now on the appropriate meds, will be carefully monitored and fingers crossed is on the cusp of more targeted treatments which are being researched.
Thankfully, the AZA is making me feel much brighter and friends and villagers are starting to say that I look much better so finding the right drug is vital.
The one thing I have learned is that give a drug it's chance but don't put up for too long with adverse effects or poor efficacy. I made that mistake with Methotrexate- 8 months of extreme fatigue- don't soldier on, the right drug is out there!
You're a star to share your experience and advice - thank you - will keep this very much in mind. Next Rheumatology is Thursday next week. Hopefully by Christmas she will have been on Azathioprine for 3 months and will start to see some improvements 🤞. Am I right in understanding Hydroxychloroquine is the mildest baseline anti-suppressant (bit like a paracetamol) that generally isn't enough on own but needs to be taken alongside stronger suppressants? x
Your welcome. I depended on this site and the good people on it heavily when I started on this journey. Hydoxychloroquine is the 'gold' standard drug for Lupus and some people don't need any further treatment. I was on this alone for a couple of years. It has quite a few protective properties - cardiac etc. It is an immune modulator rather than a suppressant. There is an enormous volume of research on it and you'll find some excellent webinars on Youtube run by Lupus UK /USA etc. Creaky Joints, Versus Arthritis are good sites too. You do need special eye tests every 5 years to check for retinal toxicity.
The one word of warning is that it has a small threshold from benefit to toxicity. I accidentally took a dose 5 hours too early (looking after a very frail parent and was very tired). I phoned the chemist, who phoned the poisons unit, who arranged for me to go to A&E!!! Anyway, it was explained that too much causes irregular heart rhythms and they can't treat it!! A good relax in A&E on a comfy bed, wired up to a heart monitor with a good read and no harm done. Wish I had been informed of this but I think they learned more about the drug as a result of Covid. I am now very careful. x
Yes this forum and every post is a priceless source of information - learning from everyone's experiences - like your own - is immense. Trial and error and hiccups along the way to get you where you need to be. And never ending research leading the way. Thank you so much. Sending love and positivity to you and yours. xxx
I went to A&E and had a pretty awful experience. I was there for 19 hours in total and didn't even manage to see a doctor. It's a long story which I won't bore you with but the lack of understanding about lupus was apparent. The nurse practitioner I saw advised I had likely had a viral infection and then proceeded to prescribe antibiotics and suggested I take Piriton to ease the itchiness of the rash. She was reluctant to link anything to lupus. It's taken me all weekend to recover from the sleepless night sat in A&E and the rash is no better.
I have an appointment with my dermatologist tomorrow who will hopefully adjust my steroid prescription to get on top of this latest flare up. I discovered today that she hasn't done my referral to rheumatology yet, which is very frustrating! I think a change of dermatologist might be required!
Thanks again for your support. Yours and the responses of everybody on here have been really helpful x
I'm in my early sixies.Symptoms started about ten years ago but worsened following covid infection March 2020, a year later I had my first covid jab. I had shortness of breath, headaches and my scalp felt sore just after walking through a car park. I had my first malar rash and bruises on digits.
I then had Pzifer jabs all fine until my fifth when I got pericarditis for first time in my life.
Autoimmune Connective tissue disease is complicated and people are affected differently. For myself I see myself as already having an issue and then other things impacted.
My vitamin D levels were low when I caught covid. I think this might have contributed a lot to all that then happened.
I did this post to try to draw together information on the topic.
Since having symptoms I started to get bad reactions to many things. So it was not just two of covid jabs, but also some medications and to a contrast.I'm assuming that it is because there is more going on in body with the autoimmunity.
This research paper provides some stats and suggests more research is needed.
Hello and welcome. Sorry to hear about all you are dealing with. Lupus is a sneaky thing. I was diagnosed 6 years ago (I am the same age as you now) after joint problems, skin rash and awful recurrent aura migraines triggered by fluorescent light (not LED though). A hand specialist spotted the signs and ordered bloods and referred on to rheumatology. I recently went to A and E as I had lots of scary symptoms for a while and didn't feel listened to by anyone and it was impossible to get a rheumatology appointment too. The oncall rheumatologist came to see me and advised the doctors. If you mention Lupus, it does get a reaction I found - particularly if you suspect a flare is happening. I started taking hydroxychloroquine 5 months ago and it has helped a lot but started really working after 3 months. I am now reducing the steroids but have to keep taking an immunosuppressant for a while. Hope you get some support soon. Hang in there. Xx
Sorry to hear this. I understand how that feels -really miserable . I have glasses with a fl 41 filter - check with an optician if you want to try this. After years of migraines, I now won't go under any fluorescent lighting and ask for people to turn them off. I saw a neurologist who supported this and said the best way was to avoid exposure to fluorescent light. I also have to limit use of screens. I am always asking people what kind their lights are but the good news is these older lights are gradually being replaced. I hope things improve for you soon. Things will get better - hang in there xx
My experience at A&E wasn't good at all and due to the time of day I went, there were no consultants on duty and only one doctor for the entire A&E. I'm still awaiting an appointment with a rheumatologist and I've discovered today that my dermatologist hasn't done the referral that she advised she would be doing in September. So I'm still no closer to getting an appointment. So frustrating! It feels like it's all a bit of a lottery and the support varies depending on who you get to speak to in the healthcare system.
Thanks again for your support and welcome. Glad to hear that you're now feeling the benefit of hydroxychloroquine x
Hi there Coldplayfeet so sorry to hear that you had a bad experience in A and E. It really is a lottery at the moment in the NHS. There is a lot of inconsistency when it comes to Lupus awareness and knowledge. I hope the referral goes through soon for you. Could you ask your gp to chase the referral to rheumatology and explain that you need to look at the systemic side of your lupus not just the skin? You may have tried this. I have had to do a lot of chasing this year to get referrals and appointments and even had to go to a private rheumatology appointment when it got too much. I hope things improve for you soon and the support comes through for you. Take care. Xx
Hi Rima28. I agree, it really is a lottery. I'm trying two angles to get a NHS rheumatology appt both through my GP and also through my dermatologist. Hopefully something will come through soon. I've also taken steps to see a rheumatologist privately this week. It shouldn't be this hard to get the support we need but I feel a little better and more in control today. Thanks again for your support x
Hi there sounds like you have all bases covered. You are right it shouldn't be so hard to get the help you need. Once you are in the system, it should be more consistent (fingers crossed). Well done for everything you are doing - glad you are feeling a little better and more in control. Hope you can do something nice for yourself today. x
Hi - I'm sorry you are struggling and feeling un supported by the medical profession when you need guidance and help most (early stages of diagnosis and management). I can only concur with RosieA's reply - absolutely reach out to the more specialist areas like dermatology and feeling so unwell A&E is not a bad call at all. GP's can be great and can help and then get you to the specialists you need - after all the clue is in the name (General Practitioner) - but they can't answer all your questions or necessarily treat or direct for the complexities of this disease. And those GPs that have become familiar with Lupus can be supportive, but at the end of the day you need to help of Rheumatology and Dermatology.
But to have possibly flared up from a vaccination better to get seen and checked.
Welcome to this very supportive place with amazing people who share and help every day.
Thank you for your kind words and welcome smeackles.
I feel at the moment that I'm having to constantly chase and follow up with people in order to make any progress. I totally agree with your comments about the GP's and I don't expect them to have all the answers. I've even been give website addresses by one of the GP's I've seen to learn more about lupus.
My bigger frustration is with my dermatologist who has cancelled multiple appointments and has also not done the referral to rheumatology. I think a change of dermatologist might be needed.
Like you say, I'm in the early stages of this at the moment and dealing with the unknown. In my mind, every ache and pain I get now is lupus related and trying to get answers and reassurances isn't easy.
Sadly you have to fight your own corner with the NHS - and I say that not to be harsh or horrible to the NHS (I had a massive car accident years ago and they saved me and put me back together again - so have nothing but gratitude and high esteem for it) but as we all know, it is an extremely stretched and miss managed system and to a degree getting a great consultant can make all the difference - shouldn't be the case but is.
We all are an NHS number and can easily be lost in the system without the correct treatment and referral. You most definitely have to push for being seen by dermatology and getting referred to Rheumatology - that is key. I don't know if your GP can refer to Rheumatology? It was a duty GP that referred my daughter to the Rheumatology dept in her hospital on suspicion of Lupus and once there things progressed to diagnosis and treatment plan fairly quickly - she is presently seen by rheumatology every 4 weeks whilst they are adjusting and monitoring the meds.
Truly hoping you get some help from the right people and departments so you no long feel you are battling this alone. x
my wife developed an autoimmune condition following her Covid injections 2 years ago.
She has cutaneous lupus and her flare ups mainly revolve around a malar rash(butterfly rash) and inflamation around her face.
At the outset we spent a good year visiting 7 cosmeticians and dermatologists with little real progress in allevating her flare ups/condition
Finally we contacted the lupus center in london and as we live in Dubai arranged videoconferences and finally my wife was prescribed cortisteroids(start 20mg and tapered to 8mg currently) and hydroxy(initially 300mg then 400mg)
She has had a reasonable turn round in her condition despite none of her ANA tests have ever shown or confirmed a lupus autoimmune condition.
Our main tips would be :-
1. Don't give up, if you reach a point wherein you dont seem to be getting the correct advice try the lupus center in London on a private basis - we met with Dr Kaul who is good and very knowledgable and helpful. The session cost is high at GBP 300 but at this stage of your journey it is very important to get reliable and effective treatment based on solid practitioner lupus experience.
2. Take immediate steps to avoid sun and stress as far as possible, we found that these were the biggest two factors creating flare ups, whilst diet is probably the next highest in our opinion.
We actually had transparent UV light skins(Uv A and B) applied to all our house window inside surfaces as well as on the inside surface of her car windscreen and found this had a measurable effect in reducing flare up frequencies....particularily for Dubai.
3. In addition to the above you should also through your doctor have your vitamin D checked it will help to fortify your immunity whereas a low level will compromise your immunity status and flare ups may be more frequent.
4. My wife has found "Mirvaso" cream to be the most effective in controlling flare ups on her face and in addition she will only use creams for sensitive skins on her face or body(usually creams for babies).
Hope the above helps and good luck going forward......
I'm sorry to hear that your wife's condition came on as a result of having the vaccine.
My current treatment sounds very similar to your wife's. I'm hoping that an increase to my steroids will get this current flare under control.
Your recommendation of Dr Kaul is really helpful. I live in the North of England and have today made contact with a lupus specialist in my part of the world so I'm hoping that I can move under his care. If this doesn't work out I'll be sure to look up Dr Kaul.
As you’ve just started hydroxychloroquine, please do make sure you get your eyes checked regularly. You can get an OCT scan at opticians fairly cheaply and opticians are very knowledgeable about hydroxychloroquine.
Thank you marypw. I'll be sure to do this. I went to the opticians the day before I started taking hydroxychloroquine to get a base line on my eyes and have asked for more regular checks moving forward.
With Lupus, vaccines can affect us more that for others. My Rheumatologist recommended that I don’t have the covid and flu vaccines at the same time but rather at least two weeks apart to give my body time to recover. I know it’s too late for you this time but might be something to think about next time.
Thanks MariaVT. That's great advice. Next time I'm due to have them I will definitely have them separately to see which one of them, if any causes a flare up.
I have an long standing autoimmune condition and since having the most recent Covid jab I’ve been unwell with various symptoms (joint pain, sore throat, diarrhoea, flare up of previously under control physical conditions and a general feeling of fatigue and malaise). I work damn hard to eat properly, exercise and live a healthy life (don’t smoke, drink alcohol or eat processed foods). In one fell swoop I feel like I’ve gone backwards due to having this jab. I am seriously considering not having this vaccine anymore because it seems to be having a detrimental effect on me. I can’t keep sabotaging my health for the sake of being a tick on someone’s quota.
So sorry to hear this HiveMind. I've only recently been diagnosed and these were my first vaccinations since the big flare up that triggered the testing for lupus. I'll certainly be more cautious in future when it comes to making a decision about whether to be vaccinated or not. I'll definitely be going for separate covid and flu if I do proceed.
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How many of you have reduced your working hours due to Lupus? Any advice regarding medication to ask for alongside Hydroxychloroquine?
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