When to go to the GP with suspected Lupus?

[jessdobson]

I have many symptoms which falls under Lupus or another auto-immune disease. These include fatigue, achey joints, shortness of breath, anxiety, facial rashes and extreme chilblains in winter (they are so bad, I am unable to move, and am in so much pain for the duration.. typically 3-4 months of the year.)

I have been to my GP over the years with each individual issue, before I had the knowledge that Lupus exists. Due to my thorough research, and symptoms, I believe I may have some form of auto-immune disease, and Lupus seems the most likely.

I have seen it can be quite a difficult disease to diagnose, and can take some time. My question is, when should I see my GP? Throughout the year my symptoms can be mild/medium.. however in winter I have a massive flare up! I have seen certain anti-bodies etc in blood tests are higher when going through a flare up, and I was wondering whether it would be easier to diagnose/get to the bottom of my illness when going through a flare up, as it may be better detected.

I am worrying hugely as I know my chilblains are due to set soon, as with my other symptoms becoming worse, yet I want the best chance of any issues being detected.

Shall I wait until I am experiencing a really bad flare up?

Thank you for taking the time to reading my concerns, and pointing me in the right direction.

[Puska]

Getting a diagnosis is very tricky and it's about connecting all the dots rather than as we do and talk about individual issues. My plan would be not to go in with the diagnosis as such but the list of all symptoms and ask for blood tests before the issues hit and if you do get a flare later then make another appointment. The antibodies for me anyway are consistent whether I'm flaring or not. My rheumatologist always asks me about chillblains but I have raynauds so it's in conjunction with that. Good luck. Takes a lot of patience.

[jessdobson in reply to Puska]

Thank you for your reply, it is really helpful. Over the years I have been to my GP about individual symptoms, yet nothing has been mentioned. Whether my GP has not looked properly through my previous notes or not is another question, in which leaves me wondering that perhaps it is not realised my symptoms could be a collective issue.

Because of this, it makes it difficult not mentioning possible Lupus, in case it doesn't crop up at all, and due to the fact they know of issues I suffer with. Although you may be right, and it may help me better.

Thanks again, I think I may look at seeing my GP soon

[misty14]

Hi jessdobson

Getting a diagnosis can be tricky with these immune illnesses so I would wait till your symptoms are flaring before going to GP . I find it gives me impetus not to be fobbed off if I'm ill and also initial bloods more likely to reveal something !. More to see in general too. You'd also be able to show him your bad chilblains which sound horrendous!. Have you looked on the Raynauds and scleroderma website?. They give treatment ideas for chilblains you might find helpful.

It can take a while to get a diagnosis but keep persisting and you will get there. Let us know how you get on. X

[jessdobson in reply to misty14]

Hello,

Thank you for your reply and advice. It is a hard one as I know it can take a while to see a specialist, but obviously I need my blood results to show something in order to see somebody. Like you, I know my blood tests would be at their best in terms of showing any anti-bodies when I am experiencing a flare up, but due to how long everything takes it makes it difficult on knowing when to go.

I will definitely have a look on that website you suggested, as I am forever trying to find new ways to help my chilblains.

I think I am more hesitant in case I go to my GP soon, and nothing is detected in my blood tests, and then a flare up happens and the GP will not do another test as I would've had one recently. I am unsure whether this would happen though, but I shall let you know how I get on x

[misty14 in reply to jessdobson]

It's a really difficult decision Jess to make!. You do what feels right and I'm sure it will work out well. It's great you'll keep us posted. Good luck. X

[Paul_Howard Partner LUPUS UK]

Hi jessdobson ,

Welcome to the LUPUS UK community forum. I hope that you find this a helpful place for information and support.

You've asked a tricky question and I can understand your hesitance to go to your doctor until your symptoms are at their worst because you would not want to be dismissed. I think it is likely that you'll receive varied opinions on what your best course is. Please don't give my opinion any more credit than others here as I am not medically trained.

Due to the usual waiting times for a referral to rheumatology, it may be best to discuss your many symptoms with your GP sooner rather than later and ask to be referred for further investigations. The weather will likely be colder when you do get to see a rheumatologist.

If you are likely to experience a flare again this winter then it is best to try and get some treatment before this happens to try and limit and symptoms or damage that may be caused.

Our blog article about Raynaud's phenomenon may be of interest to you if you experience bad chilblains. It may have some helpful tips for you. lupusuk.org.uk/coping-with-...

If you need more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...

[jessdobson in reply to Paul_Howard]

Hello,

Thank you for your reply, and taking the time to point me in the right direction. Yes, it is tricky on knowing when to see my GP, in case not a lot is detected in my blood test as I am not going through a big flare up at the time of them being done. If there is nothing to see in my blood tests, I may not be referred to see a rheumatologist, which leaves me in a catch 22 situation knowing the colder months triggers a flare up.

Another thing I was worried about is that should I go soon and nothing is detected via a blood test, would the GP allow another test to be done when I am experiencing a flare up, do to a recent test having not shown anything. Obviously I am speculating as a blood test may show something anyway. Like you said, due to the waiting times this makes me think about seeing somebody soon.

Another poster previously mentioned not to go to the GP with the Lupus diagnosis, but to just list each symptom and to ask for a blood test. Over the years I have been with each symptom, prior to understanding Lupus. Could I ask your opinion on what to say to the GP? Should I mention I suspect an auto-immune disease (likely Lupus) or mention symptoms and hope they are on the same wave length with my thinking.

I will definitely read more into this with those website links provided, and hope to get to the bottom of this soon.

Thanks again

[Paul_Howard Partner LUPUS UK in reply to jessdobson]

Hi jessdobson ,

If your blood tests were to come back negative but then you experienced a flare later on, you would just need to go back to your GP to discuss how you are flaring and ask for the tests to be repeated - I would hope they wouldn't oppose this.

I think the main difference in this appointment is that you will be going to the doctor to discuss all of the symptoms together, rather than going in separately each time with one symptom in isolation. This can help the doctor piece together the whole picture of a possible systemic condition. Sometimes mentioning a specific diagnosis can get a doctor's back up, so asking whether it could be some form of autoimmune condition may be best.

[Hidden]

Hi, Most of the doctors follow a list of eleven points as you have probably seen. Make a diary or list of what you have experienced and when. Photos on your phone may help. Explain to the GP that you have like many of us, you have had these individually and they have increased or built up in severity. Ask to see a rheumy.

[jessdobson in reply to Hidden]

Thanks for your help and advice

[Treetop33]

I can understand your strategic dilemma, but much depends on your GP too. I had a range of symptoms but not the inflammation, so in my old GPs I never got tested for lupus (though I probably would have showed the antibodies). When the joint pain hit, my new GP tested for everything joint and inflammation related, and I got a series of clear blood markers for Lupus. Then I got an urgent referral (though got a bit messed up in that process). I think my GP was a bit proud of himself, and then panicked because he was dealing with a complicated disease, and has since deferred to the hospital.

Have you asked for the blood tests for autoimmune conditions?

[jessdobson in reply to Treetop33]

Yeah, I have been going for a while with each individual issue but due to my age at the time (first time being when I was 15 - 20 now) they put issues down to my age, and perhaps stress related etc due to school/GCSE's, which I knew it wasn't. I persisted with different symptoms but because I was a child I was never took seriously and since then (2 years ago) I stopped seeing my GP as I hadn't got anywhere previously.

Due to my symptoms getting worse each year, I know I obviously have to do something about it, although I have really only known about Lupus for about a year, and felt I should do more research first so I have an idea of what I am talking about when at the GP's. That is another thing too, as like you said it depends on my GP's, and with past experience it leaves me wondering whether they will test, which makes me question whether to get tested with a flare up as it has the best chance of getting detected. Though, this also has its problems due to the lengthy waiting time of seeing a specialist.

I have not yet asked about having relevant blood tests for auto-immune diseases, yet I think I will do soon, it is just knowing when would be best to do it, and for all I know I may show relevant anti-bodies all year round anyway. A previous poster mentioned to me to not go to the GP's with a specific diagnosis, but to list my symptoms instead, however this leaves me wondering whether my GP would be on the same wave-length as me

[Treetop33 in reply to jessdobson]

Yes list some of the classic symptoms that you have and are also Lupus related, just so they can't miss it. Also maybe take someone with you, so you feel confident about insisting on a series of blood tests. Your next step is to get a referral, assuming the bloods show something (or even if not, because some people don't show).

It is important to steel yourself though. Lupus shouldn't be left untreated, if that's what you have. Good luck.

[Melba1]

Hi, I think you should ask to see a rheumatologist. GPs usually admit they have very limited knowledge of autoimmune diseases (one of my GPs told me that it was about an afternoon of med school which he'd forgotten until I asked for specific blood tests from him!). If it helps my bloods were negative for 2 years even though I was clearly ticking other lupus boxes and it can a while to get diagnosed but the priority is getting the right treatment really. Yours may not be lupus but it's worth saying to the GP why you think it might be and telling them that bloods do not always show up in the early days (or ever in some cases I'm seeing on here) and asking for a referral - it is your right to request one.

Ouch about the chilblains! I had them on every toe and finger for the 2 years before I was diagnosed and they were horrible! I don't know whether it is the drugs that have stopped me having them since or whether I've just learnt to wear more socks/gloves/ appropriate cold weather clothing so keep yourself warm and dry whilst you're waiting for your appointment!

Sometimes GPs will be dismissive about early autoimmune symptoms (too similar to ME/depression etc), you just have to be tough and not be embarrassed that they may try and say that you're stressed/depressed/ a hyperchondriac etc when you know yourself that something is wrong but when you see the right person they will help you. If your GP surgery is like mine, they are very busy, see each symptom on it's own and it's very rare that they will look through your notes (unless you prompt them) to try and put the mix of symptoms together.

Good luck, let us know how you get on

x

[jessdobson in reply to Melba1]

Thanks for your reply, and you are completely true in what you say!

The question that leaves me wondering is, will I be referred to a rheumatologist if my blood tests show up with nothing? This is where I begin to ask myself whether to get tested when experiencing a big flare up, which also adds to the waiting. Also, like you say most GP's do know limited information, which makes it all that bit harder as some do not focus on an auto-immune disease being the issue.

What has made it harder for me is when my symptoms first began (around age 15 - 20 now) they were dismissive I had any 'real' issues. e.g they put a lot of it down to stress related due to GCSE's and hormones, however in myself I knew this was not the issue. I persisted and carried on seeing my GP with each individual issue over the course of around 3 years, but nothing came of it.. which tells me they could not have looked through previous notes as something may have been mentioned before, so my GP is exactly like yours. I never really knew about auto-immune diseases until around a year ago, when somebody had similar symptoms to me, and got diagnosed with Lupus, which left me wondering too.

Unfortunately, the waiting list is long for a specialist, and can take a while to get diagnosed, like in your case.

With my chilblains getting worse each year (this is my biggest issue out of all symptoms) it leaves me desperate with trying to see if I do have an auto-immune disease, and then I may be able to go forward from there.

Thanks again, I'll be sure to keep you updated x

[Melba1]

Maybe write a list of all the symptoms you've had and take it to the Dr so they have a summary and say you think they may be all related? I wouldn't wait for a flare of symptoms as once you put it all to your Dr they may have other ideas of how to help you and like a previous poster said, most of the autoimmune antibodies will be there all of the time if you have them.

It will hopefully not be lupus/autoimmune but you do need help and you can be referred without positive blood tests if other things suggest you need a rheumatologist. I went initially for joint pain, headaches, fatigue, hair loss, nasal ulcers and chest pain but it wasn't specific enough for a diagnosis of lupus at that stage (they said undifferentiated connective tissue disease) but the consultant started me on hydroxychloroquine even with an initially negative ANA which really helped with the symptoms. My ANA became positive later and I have more/different symptoms now and am classified as lupus but it's important to remember at your stage that getting a 'name' for what you're experiencing can feel really important but what's most important is that you get help/medication/support to feel better.

Can you see a podiatrist for the chilblains - before you get them this year? I did that, it cost about £35 I think but worth it because he was really helpful - probably gave me more advice on it than the rheumatologists although I think once you've got them for that year there isn't much they can do so best to go before the cold starts?

x

[jessdobson in reply to Melba1]

I think I will book an appointment next week for the GP, as they may be able to help, and I perhaps would be referred to see a rheumatologist and like you said, I do not really want to have to experience a flare up. I have heard many peoples blood tests coming up negative, but you got helped either way, so this does give me more hope.

As for the podiatrist, I hadn't actually thought about/looked into that so will definitely do a little research now, especially as I have a little time before anything really kicks in. Plus it is completely true that once they are here, the is nothing I can really do. It must be far more easier to prevent rather than try to do anything once I have them.

I will definitely take your advice/tips on board x

[jessdobson]

I thought I would write a little update, as some of you were interested with how I'd get on.

I went to my GP this morning, explaining my symptoms and how I believed them to be a collective issue. She suggested to have blood tests to test quite a lot of things across the border, but most particularly auto-immune disease was suggested. (I did not mention I suspected this in my appointment, as I wanted to see what the Dr suggested.) Due to also having shortness of breath I have been given a slip to be able to have a chest x-ray too.

My blood tests are this Friday, so I suppose it is a waiting game for results, and then to see what happens. I am hoping something shows up in order to make this process a lot easier than what it is now, and then to be able to go forward; but I understand that many do have negative results, so I suppose I will have to wait and see what happens

[Puska in reply to jessdobson]

That sounds like a good appointment then. Good luck with the blood tests. Now for the wait!