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What to do? Wait for GP appt or visit A&E?

I still feel like I have a lot to learn re living with lupus and this is the sort of situation where I am still unsure what I should do.

I tried to get a GP appt on Thursday but by the time I got there at 9.20am (3 children to get off to school & do 3 mile school run in the car etc) all appts were gone.

I'd had a dry cough for 2-3 weeks. Nothing else. The usual fatigue but I'd been relatively well. The cough sometimes made me wretch, it was so dry and violent. Thought it time to get it checked out.

Then by Thursday evening I'd come down with my husband's awful cold. Nose running like a tap. Sneezing. But also "chest pains" on the left side, under my boob. These pains are not constant. It's a dull ache. Rather than stabbing pain. But a pain all the same. I'm better when up and doing stuff. Lying or sitting is worse. Pain and aching in my back and left shoulder area too.

So I have spent a lot of Friday, Saturday & Sunday contemplating, am I seriously ill? Should I just go to A&E?

Am I being ridiculous thinking chest infection? pleurisy? Or something more serious? It's not a heart attack I know that. But there are infections that us lupies are prone to and ours meds have side effects.

This morning I got the kids off to school and drove straight to my GP surgery, which is about 6/7 miles. Got there 9.10am. All appts gone. I explained I had tried on Thursday but was too late then as well. She said you have to phone at 8am or be here 8am. I said I can't just sit on the phone at 8am when getting 3 children to school. She said well the doctors answers would be, well other people manage it, so why can't you.

(I struggle to get out of bed full stop. Let alone with this horrendous cold, aches and pains.)

So after me being a little pushy she agreed to book me an appt tomorrow at 4pm.

But I have driven away, thinking should I have just gone to A&E???

I've never been to A&E for myself before.

Is this the sort of thing that justifies A&E?

I have carried on with my meds - hydroxy, MMF & mepacrine. But should I be? Should I take some of my steroids that I have at home? Never received any advice re this kind of situation.

I'd be grateful of your thoughts.

Wendy

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Its a horrid feeling to not know what to do. Chest pain should never be taken lightly but not everyone needs to rush to ED but everyone should be seen by a doctor like a GP as early as possible.

If you've had a dry cough for a while and it is better when you are up and worse when lying down it could be pericarditis. Pericarditis is always worse when lying down. Equally you might have inflamed your ribs by coughing and given yourself costochondritis. Does it hurt if you press your chest wall?

I might be wrong about the above but lupus, viruses and inflammation are a real cycle of trouble for us lupies.

It depends on what your gut says. Listen to your own instincts. If you feel you can wait to see your GP then wait, if you think you need ED go to the hospital. Remember the ED will do bloods and likely a chest xray which won't be done by your GP on the same day.

If you need advice call 111.

I really hope you feel better soon.

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Thank you for your reassuring reply. I had read about pericarditis. That was on my mind. But, my husband had also said that I could have strained myself coughing. My chest is slightly tender on that side. Am I right that the back pain can be chest infections too? I am wheezy. But my temp has been between 37 and 37.7 which is pretty normal for me. I am just really aware that our A&E departments are under real strain and unfortunately get a lot of time wasters and people that could have been seen by their GP. The majority of stuff should be dealt with by GP. I think the chest pains are my main worry but I do not think they are life threatening. I will probably end of seeing GP tomorrow at 4pm. Unless they get worse. Thanks again. x

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I suppose it depends how you look at it. It isn't a rip-roaring emergency because you thought about it for 3 days over the weekend as well. But your GP practice (in the form of the receptionist) is effectively denying you emergency care because of their system - you COULD sit and try to get the appointment but then you'd have the social in to enquire why you were keeping the children out of school. And this is what is contributing to the A&E problems - patients are having to resort to A&E because they being failed - for whatever reason - by their GP. It is very poor they don't keep a couple of appointments for people taken ill after 7.30am - or have a "walk-in and wait" section of the surgery which a lot of surgeries do have nowadays. It is the only option here! If you are ill - you wait. But you rarely wait very long.

Mind you - I bet if you got the kids up extra early and got to the practice for 8am together with 3 rumbustious children, they'd be handy enough about finding an appointment ;-)

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Good plan of action! 3 noisy kids in the waiting room. I think it's all part of my naivety at the system. Before being ill with a chronic illness I thought the NHS took good care of those with terminal illness and chronic illness. But in actual fact having a chronic illness gets you no extra help at the GP surgery at all. You still have to negotiate the stoney faced receptionist and prove you are ill to get an appointment. if I'd said chest pain to her, no doubt she would have told me to go to A&E, as they are so cautious. I just told her I had lupus, suspected chest infection and needed advice re immune suppressants. She just typed away. It is what it is. Like I said to happy tulip above, I will wait for GP appt tomorrow at 4pm unless it gets worse - i.e. more intense, sharper pain. Thank you. x

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I was very lucky in Durham - it must be a unique practice: it had lovely receptionists! Here our doctors rarely have reception dragons - don't need them for a turn up and wait system.

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It's a horrible dilemma. If I want an urgent GP appointment, I ring up as soon as the surgery opens at 7.30 am. At that time, there are usually urgent slots available later in the same day. Another option might be the out-of-hours GP? Mine operates from a OP clinic in the local hospital and it's usually a case of ringing up, speaking to the ooh GP to confirm it's urgent, and then trotting along a few hours later.

I have been to A&E with chest pain on a couple of occasions. It means some hours on a trolley, an ECG and bloods to check I am not having a heart attack and then discharge. This is fair enough, but it didn't help a lot in working out what the trouble really was.

Hope it goes well tomorrow x

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Thank you. That's really helpful. I have only ever contemplated A&E 3 times, all in the last year and all due to lupus. Twice with the most horrendous headaches, where no pain relief working and now with this chest pain. Apart from not wanting to block up A&E unnecessarily, I do wonder if they'll have the knowledge to actually pin point the cause or help at all. So you telling me, they simply ruled out a heart attack definitely helps. I can rule that one out myself. Tomorrow at 4pm with the GP it is. It is thought provoking though, because really, us lupies shouldn't feel that way about getting same day medical advice from anywhere. Have a good day. x

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Oh dear Wendy, I know that feeling I've just been through it, my husband took me to A&E two weeks ago late at night, I've been having a lot of weird episodes of left sided weakness and numbness and feeling very ill this went on for some time (looking at screens seems to aggravate my head which is why I've not been on here lately) but it got to a point where he could see I was struggling and asked if I wanted him to take me to A&E , knowing my risk stroke and the thought of having to be up early to make an emergency appt with my gp I just said yes please, I've never been to A&E I've always avoided too it but they were really good and had a ct brain scan within the hour and the stroke nurse came down to see me, thankfully there was no evidence of a stroke and they thought it might be migraine related but I'm still getting all the symptoms with and without the migraine, I'm waiting to hear from the neurologist now. I'm glad I went because it put my mind at rest and they didn't mind at all. I'm sorry you're having such a rough time, I hope you get some help tomorrow and feel much brighter soon.

I hate this illness, there never seems to be any let up and when there is it's always short lived😔

Take care, Big hugs

Diane🌺Xx

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Hello Diane

It was lovely to hear from you but I am so sorry to read that you have been so unwell recently. I hope the neurologist helps you find the cause of these episodes. Some of these symptoms seem to take so much investigation. Ruling things out mainly before seeing what's left.

I was telling everyone last week how I was enjoying relatively good health and trying to explain that I knew it would be short lived! It always is. The "healthy/good days" are few and far between when dealing with lots of chronic illnesses.

I am still waiting for a neurologist referral, but will update you when I do finally see one. Had the bloods done last week. Hughes repeated etc. More specific tests re headaches and lesions but do not understand them. Will have to educate myself before I need to discuss with new rheumy and neurologist.

I still have chest pains this morning. They haven't got better. I should know by now that I should just go to A&E when I get that "should I or shouldn't I" feeling. The longer I delay the less likely I will go. Like people have pointed out, they can do some tests there and then, and rule out some causes, even if they know little about lupus. Plus, it would be recorded on my medical records for future reference.

Ultimately, the fact that I have never been to A&E before, at the age of 42, kind of proves that I do not abuse the system. I need to remind myself of that.

Please take care of yourself and big hug back.

Wendy xx

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Thanks Wendy, i felt the same I've got to 56 without going to A&E for myself but when needs must, after my experience the other week I would say don't be afraid to go, things get done quickly .

I've just read in another reply about your GP visit and wondering about the Steroids, it could make all the difference to you and get you through the next month and help with the chest/rib pain, I'm on 5mg daily for the next few months until I see the rheumatologist and it's given me a little more stamina and calmed my joints a bit, times galloping on and I need to be better than I've been lately as my daughter is getting married 9th September and it's a big wedding, it's going to be a very long day, I want to be well enough to enjoy it and not to struggle through the day/evening and I'm already wondering if the Gp will let me increase them a little if need be to help me get through those couple of weeks!

I really hope you'll be feeling brighter soon so you can enjoy your camping trip and the school holidays.

Big hugs, take care

Diane🌺Xx

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Just from a medics point of view, a question that always shuts a snooty receptionist up is, "are you trained to medically triage?"

I'm lucky enough to have an open door policy with my GP surgery and the receptionists are great. But I have used that expression before and always had good results.

If A&E was super busy and patients attended who were suitable to see their GP but the GP receptionist had refused them an appointment, we were allowed to phone the GP and make appointments for the patient on that day. Funnily enough no end of receptionists were able to produce a number of appointments on the same day, thus reducing the work load of A&E and more importantly, getting the patient seen by the correct care provider in the quickest way.

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Thanks for your reply. I think you are right. They do keep appts back for emergencies. When I stood my ground yesterday, she offered 4pm today. So ultimately their policy of turn up or phone from 8am onwards, does have its exceptions to the rule. It's just horrible feeling like you are begging. I have learnt a few things though here with people's replies. If I'd said OK then, I'm going straight to A&E instead, she might have been more accommodating too. I know they get a lot of time wasters and they have to try to do some sort of triage, but I do get annoyed by their "who do you think you are, needing to see a doctor?" routine. I'll let you know how it goes today. x

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I was just messaging you to wish you luck!!!

Please let us know how you get on. I have a lot of experience with chest pain of varying types since 2006 so can really empathise and know how painful it can be. You just want to know what it is dont you?

And as helpful as receptionists can sometimes be, they are NOT trained to medically triage. Something that got Mid Staffs into a little trouble in that inquiry, as well as many other things!

Good luck, I would really urge you to get the point across that it is worse when lying down. Hopefully they can give you a good examination and treatment plan. Is your temp still high? Really good luck xx

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Yes, pain is worse when lying down. My temp is 37.4 at the mo. But like I said 37.7 is my normal upper limit. Not unusual for me. x

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Do you have another GP practice you could change to? I was gumswizzled to find the one I changed to allowed you to ring and ask to speak to a doctor up until noon ( and later in extremis) and the doctor, if needs be, would give you an appt later that day. The only time I said I couldn't even step out of the back door the doctor could hear my distress and organised more meds pronto.

The last lot simply had one permanently engaged phone line, and if you went in you had to ring an oh-so-fun ship's bell several times at the empty counter. That did wonders even if you had no headache before. If the bell hadn't been chained down I might have nicked it to put us all out of our misery. Then a grumpy object would shuffle up to the desk and ask "What"? OK, the last sentence only happened once. The rest was normal practice.

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Not sure if my reply is too late. But I like to read this site in the morning. Is like my inspiration read before the start of the day:-)

I had the same feeling unsure who to go to for help. I was in unbearable pain. Calling 111 helped they often refer me to the out of hour doctors (apart of emergency) but unlike a&e is like prearranged appointment. I tried a&e too helpful with pain but they didn't understand my actual condition. I have been send home once with an inflamed and inflected foot (rheumatoist save the day and corrected them). Used gp also again because of my complications they will refer me back to my rheumatoist. I have now learnt and did not know about this. There is a rheumatoist nurse I can call and depending on your conditions they will arrange for me to see my rheumatoist. So after I have been to see everyone I find seeing the rheumatoist is like seeing an angel they are the only ones who can treat the root cause of our condition I feel. My rheumatoist even have there own Ward in the hospital.

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Thank you for your reply. It's always good to hear of other people positive experiences. Unfortunately my only ever contact with my Rheumy nurse asking for very urgent help, re a terrible flare with headache, that lasted nearly 6 weeks, I was on my knees, with tenderness on my head and pains shooting down my neck and jaw was, I'll see you at your appt in 5 weeks time and we'll discuss it & do some bloods then. End of. At that time I had no advice on flares or medication or steroids to help in a flare. I know my clinic is also behind on appts. So my chances of getting a more urgent appt with a rheumy are non-existent. Do you know, I don't even know if my rheumy department has beds at the hospital. I've just never even thought about it or been told. I am off to the doctors this afternoon and will be very firm with them about my symptoms and the realisation that I should have gone to A&E last week. Thanks again. Wendy

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Good luck Wendy. Yes must be firm. My GP depending on who I get in the day sometimes will call the rheumy for me whilst I am with them and tell them that I am an urgent case. My rheumy have a thing call injection clinic for when people go bad I guest. I was like you should I or should I not go a&e. My gp said to me if you are in so much pain no one will judge you. I also flet bad taking up a bed space at the hospital but the nurses said you need it as much as anyone else. Don't suffer, we suffer enough with whole load of other symptoms and pain. Do let us know how you get on.

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Hi Wendy,

I just read your post. Sorry to hear of your on going cough and chest pain. I hope Dr appointment went well. Keep us informed.

It was (still is!), one of my biggest bugbear, not being advised who/when/why, i should seek medical help, between appointments. In fact, apart from suffering 3 times, (back to back, chest, ear, sinus, infection combined), not having such an answer, not knowing where to turn, was the main reason i made the decision, to stop taking hydroxychloriquine. Sad really, as given time, I may have really benefited from that drug.

Like yourself, I was taken ill, feeling so unwell, my husband went to GP surgery to get appointment whilst I dragged my unwell body from bed (i had not slept most of the night prior). He came home, saying, she, (receptionist), insist you there in person to get appointment. (Drs start seeing patients approx 45 mins after 1st person booked in, so she, was just exerting a misplaced power, in my opinion). What a Herculean effort then, to wash, (felt too unwell to shower), dress, and get to surgery quickly. Of course, we had a 2.5 hrs wait to be seen then, as fighting utter fatigue, delayed us, we were very back of queue.

When I was well, after course antibiotics, I spoke with practice manager, asking about appointment policy. I explained that chronic autoimmune illness patients know, when/if they need medical assistance. That, to prevent a rapid decline, not only requires a Dr appointment as soon as possible, but that families work out the best way in getting the appointment, and could do without unnecessary battles with receptionist. We need support, in order to lessen further deterioration and act as best we can. The Manager told me to phone, and to ask for her, if we ever get refused same day appointment, by receptionist. I felt she understood my dilemma.

Another time, I woke after a short, much needed sleep, unable to breathe with ease. Again, the dreaded scenario unfolded, chest, ear, sinus infections combined. I had finished a course of antibiotics two days previously. I was wheezing so badly and knew I was very unwell. My temperature was very high I had no energy... I followed my gut instinct. My husband, reluctantly drove me to A/E at 3.30am.

The staff were amazing. Well, I say that, they did their job. I was in need of healthcare and I got great healthcare. I was prescribed stronger antibiotics. Bloods were taken and I had an Xray of chest. (though A/E Dr did say, Xray would not show clear images of chest infection with autoimmune disease). I was very pleased to be released home to my own bed 3 hrs later.

2 days later, the hospital staff phoned, telling me another blood form was in the post. Could I get bloods asap. My A/E blood results had returned, showing neutrophils too low and sodium levels down.

I'm not sure, if A/E Dr was aware. Or, if a more experienced Dr had checked A/E patients he had seen. Though, I do sometimes think, what would have been the likelihood I would have needed a hospital bed, had we not gone to A/E that night. At least I was given antibiotics, thus being covered from a worse case scenario.

As soon as I cleared 2 days of those antibiotics, I got my 3rd bout of combined infection. My immune system had really struggled. I have no doubt, the timely antibiotics did stop a very near health crises. I'm very pleased, and very grateful, that despite feeling so poorly, I managed to get the help I needed. And no need for a hospital stay.

So, I would say, to anyone who feels very unwell, that listening to your body, and following your instinct, has to be a priority.

I make no apologies, I think a best practice care plan, should include information, of what/when/who/why to contact when feeling very unwell.

I have supposedly, access to a rheumatologist specialist nurse, I have phoned twice, in last year, for information/advice. Each time, ansaphone asks for message. Specialist nurses (well mine), are usually working in clinics, day off, holidays, or, work between 9-5pm. Not so good, if/when need medical assistance.

If I couldn't see anyone at GP, despite working hours, and manager not available, I would not hesitate to phone 111, they should offer an appointment with the hospital. Or, at the very least, a telephone appointment with a Dr. I don't think A/E would be very pleased to hear we had first requested a GP appointment.

I think, most of us, have learned, through chronic autoimmune disease reality, that we sometimes, really do have to battle with the modern day, NHS system.

Interestingly, for some medics, who no doubt, ever face such dilemmas, as getting healthcare provision when needed, antidepressants would happily be prescribed, for those (of us), who are caused angst, when we are denied access to care.

As I don't want to be offered, or indeed, take, antidepressants for a less than competent health service system. I will continue to be guided by my instinct, and follow my own plan, in seeking appointments. My body, my health.....

Sorry your being unwell brought up this topic Wendy. But, I think it is a very, very important topic. How many of us, have that same dilemma? What are we supposed to do when we are ill and between appointments?

Thank you for sharing, it has been food for thought.

Get well soon.

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Hi Wendy, how did you get on at the GP today?

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Hello.

Sorry for my delay in replying. By the time I came out of the doctors, picked up my 3 children from my mums, took one to his tennis lesson and then an hour later collected him, cooked a meal, cleared up, I collapsed in a heap on the sofa! I am also finding this humid heat a real battle. I am so lethargic with it, well even more than normal!

I struck lucky, as I had booked an appt blind, not knowing who's list I would end up on, but it was my lovely lady GP, my fav, who I usually wait 3-4 wees to see if booking an appointment. I had only seen her 2 weeks before, to discuss my new treatment plan, so she will be sick of me.

I explained about the dry cough, then the cold and chest pain. Worse when lying down. Fatigue. Wheezy. The chest pain hasn't got worse since Thursday but it's not got better.

We discussed costochondritis and I have had that before. But for me, at time of diagnosis, that was quite sharp pains, in central chest, both sides. This is different and very much left side, heart / boob area.

She examined me. Listened to my chest, tapped my back and declared my chest clear. She listened to my heart and said there was no "rub", so she could rule out pleurisy. (I googled this heart rub when I got home and it's a particular noise that indicates pleurisy and pericarditis). She pushed around that area and it was uncomfortable in places - slightly tender when she pushed.

She said that the cold I had was probably viral, there is one going around. She said antibiotics wouldn't help. She said keep taking my usual meds and immune suppressants. I asked about steroids and she just screwed her face up, she implied no point.

She said she thought it was musculo-skeletal or maybe myalgia - which is possible anywhere in the body. (I've had it in my head and ears before).

I have no idea now, really what the cause is. No chest infection. Muscle strain from coughing. Myalgia.

I asked about taking paracetamol and ibuprofen and she said yes that's fine.

She then said, just carry on as you are and get plenty of rest.

I then reminded her the children break up from school on Friday and we are going camping for a long weekend with friends.

Oh she said, well at least with camping the children will play and occupy themselves.

So when my husband came home from work, I repeated it all to him. He said, but if it's myalgia or inflammation of the ribs the steroids would help. That makes sense. And I do not want to spend the summer holidays in bed. I am currently dropping kids at school, resting at home all day and napping in the pm before I pick them up and limping through to bed time. However I do not think I am flaring in the lupus sense. Just had a god awful viral thing that has floored me. My husband has it and has carried on with work and his walking 10,000 a day. Not me with my screwed up immune system.

Dr K in London told me in his letter that I could self medicate with steroids 0 his words were - "if she does feel that she is flaring up with symptoms with skin rashes, fatigue, tiredness, joint pains or any other symptoms then" 5mg for 2 weeks and 2.5 mg for a further 2 weeks.

I still feel like a complete learner with all this sometimes. It's 3 years 9 months since my original diagnosis but the steroids are still really new to me. Plus I am indecisive, as you can see, as I do not know what to do for the best!!!!

So I am considering starting the 4 weeks steroids tomorrow, which would cover 4/6 weeks of the summer holidays and give me the energy boost I need to get through the summer holidays with 3 children to entertain! 4 weeks would also cover our stay-cation to Yorkshire in August.

Decisions, decisions. I wish someone else would make them for me!!!!

Thanks you for all your lovely messages and concern.

Wendy x

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Hi wendy39 if you can't get appt at GP then ring your rheumy they have nurses on hand to advise as for going to A&E is a waste of time as soon as you tell them you have lupus they hand some pain killers and send you off believe me been there with gallbladder as soon as I told them I had suspected lupus they palmed me off with painkillers I had pancreaticus aswell and gave me option to go home or stay in hopspital for 24hrs it's a joke. I was ill for 3wks with that couldn't stand up for more than half an hour at time. Unless your actually dying it doesn't bother them to be blunt sorry to say this. Hope you feel better soon

I've recently started having ACV every morning on empty stomach this helps with inflammation in body touch wood it's working for me so far also with arthritis pain. It also good for viral infections give it a try can't lose. 😊

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Thanks for your reply. It's so hard to judge how they would be. I guess it depends on the individual doctor you see. Just discharge with some pain relief or do some tests/x-rays/scans to try to find cause? I thought they might be more helpful - especially with chest pain.

You are lucky with your rheumy nurse. I contacted mine during a flare this year. I had with it the headache from hell. 5-6 weeks of pain. Tenderness on my head. Pains down my neck veins and jaw. No normal pain relief touching it. Etc. Extreme chronic fatigue. I got told that she would see me at my appt in 5 weeks time. Discuss it then and take some bloods. At this point I had no effective treatment plan and no instructions for steroids for flares - in fact I had been told my rheumy department that steroids for me was an out right no. So you can imagine how disappointed, let down, alone and frightened I felt.

For me, A&E would probably be better than the rheumy & rheumy nurse care I have received to date locally.

What is ACV?

Thanks again

Wendy

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It's apple cider vinegar or try turmeric powder boiled in hot milk I've had similar symptoms to yourself I did the turmeric in hot milk notice change in symptoms next day carry on with it until it's all cleared up and Wendy you don't want to be relying on steroids there are alternatives that can help it's finding the one that works for you.

I'll get the details for the health insurance need to check emails 😆

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Hi. Sorry for the delay in replying.

The holidays are a busy time for me with my 3 children.

I just wanted to say that I don't rely on steroids, far from it.

I was diagnosed, wrongly, with SCLE in November 2013 and placed on hydroxy and told that I would probably only need that during the summer months. How wrong they were. My lupus journey has been a very bumpy one and I finally got an expert second opinion from a doctor in London this April, when I was told that I did actually have SLE. So I had been wrongly diagnosed, sidelined and not taken seriously by my rheumy doctor at home for over 3 years.

I am now on 2 x 200mg hydroxychloroquine, 3g MMF and 50mg mepacrine 3 times a week, plus 2 antihistamines a day. I finally feel like I am heading in the right direction. That my combination of meds is working for me. I haven't had a headaches for a couple of weeks, which is massive for me. And my skin issues are coming under control. Fingers crossed this lasts.

All in all, I have only ever taken steroids on 6 occasions (for max of 5 weeks at a time). 2 courses pre-diagnosis and 4 post diagnosis.

I have read and read about lupus. I also follow this site avidly. So I feel that when I do use the steroids it is with care and knowledge. I take the decision very heavily. I know that there are huge health implications of relying on steroids. But Dr K told me he had no concerns about me taking 5mg for 2 weeks and 2.5 for a further 2 weeks. This re-enforced what I had already learnt from previous posts here and information that others had offered. Side effects seems to be from daily doses of 7.5mg and above. Under 7.5mg a day the risks are greatly reduced. And like I said, I do not take them daily.

Having lupus has also taught me never to judge others about their choice of drugs, including steroids. Each one of us has different symptoms and different daily medications. These decisions about drugs and steroids are such a personal thing. In fact some people on here are only on hydroxy and steroids - they aren't on the immune suppressants that are otherwise known by the doctors as steroid sparing drugs.

For me, with children aged 9, 8 and 5 when first diagnosed and now 13, 12 and 9, I want to be as normal as possible now, for them. I do not want them to remember their mum in bed all of the time, in pain all of the time, scaring them (which has happened). I want some energy now. For me personally, it's about quality of life here and now, for my children's sake. So if occasionally using steroids gives me a much needed boost to cope with the school summer holidays I am not going to feel bad about it.

How did you get on with the insurance?

Best wishes

Wendy

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Morning.

I have just relied to HT below and will copy and paste it for you all to read. Thank you so much for your kindness and replies. I learn something new every day here. And now I know to take my 3 children to the doctors reception with me and threatened A&E if they are being obstructive! Ha ha. xxx

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Hello.

Sorry for my delay in replying. By the time I came out of the doctors, picked up my 3 children from my mums, took one to his tennis lesson and then an hour later collected him, cooked a meal, cleared up, I collapsed in a heap on the sofa! I am also finding this humid heat a real battle. I am so lethargic with it, well even more than normal!

I struck lucky, as I had booked an appt blind, not knowing who's list I would end up on, but it was my lovely lady GP, my fav, who I usually wait 3-4 wees to see if booking an appointment. I had only seen her 2 weeks before, to discuss my new treatment plan, so she will be sick of me.

I explained about the dry cough, then the cold and chest pain. Worse when lying down. Fatigue. Wheezy. The chest pain hasn't got worse since Thursday but it's not got better.

We discussed costochondritis and I have had that before. But for me, at time of diagnosis, that was quite sharp pains, in central chest, both sides. This is different and very much left side, heart / boob area.

She examined me. Listened to my chest, tapped my back and declared my chest clear. She listened to my heart and said there was no "rub", so she could rule out pleurisy. (I googled this heart rub when I got home and it's a particular noise that indicates pleurisy and pericarditis). She pushed around that area and it was uncomfortable in places - slightly tender when she pushed.

She said that the cold I had was probably viral, there is one going around. She said antibiotics wouldn't help. She said keep taking my usual meds and immune suppressants. I asked about steroids and she just screwed her face up, she implied no point.

She said she thought it was musculo-skeletal or maybe myalgia - which is possible anywhere in the body. (I've had it in my head and ears before).

I have no idea now, really what the cause is. No chest infection. Muscle strain from coughing. Myalgia.

I asked about taking paracetamol and ibuprofen and she said yes that's fine.

She then said, just carry on as you are and get plenty of rest.

I then reminded her the children break up from school on Friday and we are going camping for a long weekend with friends.

Oh she said, well at least with camping the children will play and occupy themselves.

So when my husband came home from work, I repeated it all to him. He said, but if it's myalgia or inflammation of the ribs the steroids would help. That makes sense. And I do not want to spend the summer holidays in bed. I am currently dropping kids at school, resting at home all day and napping in the pm before I pick them up and limping through to bed time. However I do not think I am flaring in the lupus sense. Just had a god awful viral thing that has floored me. My husband has it and has carried on with work and his walking 10,000 a day. Not me with my screwed up immune system.

Dr K in London told me in his letter that I could self medicate with steroids 0 his words were - "if she does feel that she is flaring up with symptoms with skin rashes, fatigue, tiredness, joint pains or any other symptoms then" 5mg for 2 weeks and 2.5 mg for a further 2 weeks.

I still feel like a complete learner with all this sometimes. It's 3 years 9 months since my original diagnosis but the steroids are still really new to me. Plus I am indecisive, as you can see, as I do not know what to do for the best!!!!

So I am considering starting the 4 weeks steroids tomorrow, which would cover 4/6 weeks of the summer holidays and give me the energy boost I need to get through the summer holidays with 3 children to entertain! 4 weeks would also cover our stay-cation to Yorkshire in August.

Decisions, decisions. I wish someone else would make them for me!!!!

Thanks you for all your lovely messages and concern.

Wendy x

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If you decide to try the steroids route and you respond at least you will know for the future whether its inflammation or not. Its a tough one as no one likes having to take them. Good luck and hope you feel better soon. xx

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Hello louise-a. Thank you. Yes, you are right. It would prove that it's inflammation, somewhere. I am very tempted to take them, as it's not good feeling like this with the kids off school. Steroids give me really good energy levels - like I was pre lupus. I want to do things with the kids whilst they are off and make the most of the hols. Next summer the two older ones will be 14 and 13 and one is talking about getting a job, the other loves going into town with his friends. This may be the last summer hols with them, with me, if you get what I mean. I know next summer will be very different. They are growing up too quickly! Great to hear from you. I hope you are continuing to progress. Wendy xx

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I am having my challenges at the moment. Frustration does not come close.

Wishing you and your family a good summer holidays. xx

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Oh no! That doesn't sound good. Battles re your care? x

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yes, yes and yes. xx

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I'm not going to like your comment. I'm sorry you are struggling like that, yet again! What is wrong with these doctors!?!?! X

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I'm so late to this post that anything I can offer is probably superfluous and I can't see how I missed it but I felt compelled to offer some support.

It's completely appalling that your GP surgery did not offer you an immediate appt.. Even if you had had to sit and wait for a gap between patients or at the end of morning surgery, that is what should have happened.

I get recurrent bouts of pleuritic pain. It's huge, mega, immense pain that I cannot even talk through. Sometimes I wonder if it is actually costochondritis but either way, my ESR is raised at the same time (normal crp) so it's clearly lupus inflammation. If I phone my practise and mention 'chest pain', there is no question that I must be seen then and there. Once I was seen by the specialist nurse who whisked me in with my GP immediately. I suspect that I have some sort of red flag next to my name that indicates prompt attention is needed but I could be inflating my own sense of self importance!

I have 3 children too and it can be overwhelming when you've only enough reserve for yourself yet you have to put 3 small people first. Mornings can be so hard.

I hope the pain is relenting xxx

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Hello. Just to update you all. I did start taking a course of steroids on the Friday the children broke up from school. I was just feeling low and the cough was annoying me, backache, etc, no energy. Not a great start to the holidays I thought. Plus we were camping with friends that first weekend. So I followed Dr K's advise and have taken 5mg pred a day. That is for 2 weeks and then 2 weeks of 2.5mg pred a day. So 4 weeks altogether. It will cover the first 4 weeks of the holidays and our stay-cation later in August. It has helped me. I have less aches and pains and better energy levels. I have only napped once in 12 days. This is how I need to be, to get through the hols with my 3 children. Fingers crossed this cough goes soon though. Such a nuisance. x

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