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LUpus Patients Understanding and Support
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Could this be my lupus or something else

Not posted on here for a while now but hoping to get a bit of advice if anyone can help.for a few days now I've been having pain in the right hand side of my chest radiating into my shoulder and I know I probably shouldn't always listen to Doctor Google but he assures me that if it were anything to do with my heart it would be on the opposite side of the chest so not panicking ,and pain on the right could indicate liver problems. I can't get in to see my GP until later in the week.

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Dr Google is not a good idea! Similarly, medical students can believe they have every disease.

What you describe could be anything. I know it's difficult but try and relax because you will see your doctor in a few days and be reassured!

Obviously, in the unlikely event the pain becomes unbearable, go to A & E at your nearest hospital.

Please let me know how you get on at your doctor.

With good wishes,

Ros

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Hi crankyme

I have been having the same problem for 4 weeks now. Managed to see my GP yesterday who said it was not lupus but something else! Which later she said it could be fibromyalgia (which i have) and gave me prescription for ibuprofen gel to rub on my chest and back even though I told her the pain is right inside not on touching or pressing. As of now I don't know what causing it. The doctor said if I'm still having pain after 5 days to contact her. By the way all these weeks could not get an apmnt with my GP. I hope it's not something serious! Anyway know you are not alone! Take care x

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I am sorry to read this - do go back if you are unhappy. FM can be very painful and there is research into this area, including Prof Graham RV Hughes, a leading lupus specialist. He believes there is more going on than was once thought.

You are also not alone!

With good wishes,

Ros

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Hi, Just saw your post, did you get a diagnosis? I have been having the same pain for 2 months, but doctor just says I have pulled a muscle, I must admit it has got better, did you have pain when you took a deep breath sneezed or yawned? I mentioned it again to my doctor on Monday and she just said if you think its that bad go to A&E, I think I will have to try the rheumatologist not that he listens to me either.

I hope you are well.

Leesy

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Why doesn't your doctor listen to you? If you think the doctor is wrong, ask to see another doctor. It is possible that the intercostal muscles ie muscles between the ribs, are inflamed through coughing or pulling/pushing. Have you had an xray or CT scan? Do you have breathing problems? The doctor can tell if it is a pulled or strained muscle by listening to your lungs.

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I did have an xray in A&E and she could see that from my record, but I tried to tell her that was before I got the pain, I should be more forceful really, maybe I will go back and mention it again although that won't be for 2 weeks as the booking system is rubbish, there isn't that many at this practice to choose from, I have looked at other doctors in my area and there doesn't seem one that gets good reviews. I haven't been diagnosed with lupus but it is one of the things they are looking at, and I have read it can effect your lungs.

I really don't know what has happened with doctors, she barely looks at me when I go in, she has never taken my blood pressure, I went with another problem the other week and she said have you got a temperature, I just looked at her thinking "aren't you the doctor", she never did take my temperature.

thanks for your reply

Leesy

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I am sorry to read about your doctors. Having a good doctor is important, who should be there to support you.

Lupus is called the "Disease of a 100 Faces" because it can mimic every disease known! Please be careful in what you read because there are many websites giving false and frightening information. Even IF you have SLE, today it is very treatable with medication. For the majority, they lead a normal life, have children, have a normal life span and many come off all medication.

There is no single blood test to diagnose lupus. Most GPs know very little about SLE as it is poorly taught. Usually, it is only when a doctor is actively looking for lupus, that a diagnosis is made.

If you have had an x-ray and nothing is showing, this is good news. I know you said you had not experienced the pain, but there is something called "lupus lung" and this would show up. Pleurisy would be heard if the doctor listened to your chest. If your pain returns, then you should go back to see the doctor.

Why are they looking into lupus? You have only mentioned pain in your chest and this would not usually lead to a doctor thinking of lupus. What other symptoms do you have?

With good wishes,

Ros

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Hi,

Sorry I have been on another forum and explained my symptoms, RA symptoms, raised rheumatoid factor, positive ana/ena, this has only been since January, only had 1 appointment with rheumatologist, had the last appointment of the day, and he didn't answer any of my questions, I was only on 5mg prednisolone then and was still in quite alot of pain. Only good thing he did was double my prednisolone, at least I don't dread going to bed, trying to sleep sitting up, as if I laid down I wouldn't be able to get up, but on a couple of occasions asking my husband in the middle of the night to help me up so I could go to the toilet, knowing that the following morning the terrible pain would still be there, feeling like 90 when I am 54.

He also prescribed hydroxychloroquine, which I have tried to take a few times felt nauseous and faint each time and it was the only thing that changed so it must have been that.

He said he would see me in 6 weeks, appt arrived for 10 weeks time, have phoned helpline and explained about the hydroxychloroquine, and telling them that I was reducing my steroids but not to 7.5mg like he suggested, using the dsns method suggested by another forum, they could only bring it forward by a week, as they have no other appts, probably as I learnt today that he has left, and hopefully I will see another dr that might listen to me.

So the only thing he mentioned was lupus, but googling isnt good as I see you can have a positive ana/ena for many reasons, so I will have to wait and see what my next blood tests say. Just out of curiosity does anyone get their blood test results actually given to them? My doctor or rheumatologist never really explained them to me.

Anyway that's my story so far, not diagnosed with anything, but reading the posts on here really help.

Leesy

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Dear Leesy,

I m sorry for the delay, but I have just returned from being in hospital.

I am concerned about you. I hope you accept what I am going to say out if concern. What you choose to do is your decision.

Please do NOT take any notice of what is said on any forum. Please do not believe information on the web as there are websites that give the wrong information. Even when it is my organisation, LUpus Patients Understanding & Support (LUPUS) with all the recent information at www.lupus-support-org - this is general information and the only person who can advise you is your own doctor.

Reducing steroids, for example, takes time. Dropping steroids quickly may result in pain, but what that pain means is difficult to tell ie is it a flare or just because you have dropped the steroids too quickly. This MUST be done through your specialist. Unfortunately, seeing a specialist is very difficult and far too far in advanced. My suggestion is to see your GP, who can then speak with your specialist when ordinary patients like us, cannot!

Hydroxychloroquine (Plaquenil) is a standard drug in SLE. There is NO recorded side effect if fainting and please see a doctor to find out why you have been fainting. Is it blood pressure or something else? No one knows but please do not assume something to be the case when there may be another cause. Nausea can occur but you need to discuss this with your doctor, please!

IF you have a good doctor/GP/lupus specialist, they will explain the blood tests. Some patients have "unremarkable" or "normal" blood tests, which is why you need a lupus specialist. Not all rheumatologists are expert in lupus. Many have never treated a lupus patient!

Who is your current lupus specialist? Are you in the UK?

I apologise if you feel I have come across too strongly, but I am concerned about you.

With good wishes,

Ros

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Thanks for your reply.

I am not getting any support from my doctor, she just says I have to discuss it with the rheumatologist. She has never taken my blood pressure,I do take it at home and it is always low. I am slowly reducing the prednisolone, I don't want to go back to that pain. I am feeling well at the moment have got lots of energy must be the steroids. The only thing worrying me is the pain in my back although it has improved.

I haven't been diagnosed with lupus, it was just something the rheumatologist mentioned.

Blood tests in a&e showed raised rheumatoid factor 20, ana/ena positive,crp13, ccp negative, dsdna negative, although when I saw the rheumatologist he did say thd rheumatoid factor had gone down to 11 but didn't discuss anything else, hopefully my next appointment I should be seeing a more qualified rheumatologist and I haven't got the last appointment of the day. They ask if any of your family has had any of these inflammatory diseases,but doesn't ask any other family history, and doesn't give you a chance to, as it is so rushed.

I dont think you have come across too strongly, obviously you are a very caring person.

It is so kind of you to reply, especially as you have been in hospital, hope you are well.

I live in Essex, I have looked at other doctor surgeries in my area and there doesn't seem to be any that are good, I will see how this next appointment goes with the rheumatologist and then go from there.

Thanks again

Leesy

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Thank you Leesy for your kind words. I am so sorry you are not being cared for as you should. It's not right. One American lupus specialist noted that IF SLE was primarily a "male" disease, there would be better funding ie more research and specialists!

If there is anything I can do, I am here. Please let me know how you get on with your next appointment.

With good wishes,

Ros

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Saw rheumatologist on Monday, she has confirmed it is Lupus, I don't know if other people feel the same, but I am grateful for a diagnosis. The rheumatologist was so helpful, so much better than the last one.

She thinks pain in my back is caused by inflammed pleura, just have to wait for results of x-ray.

A friend of mine said I should see a rheumatologist that specialises in lupus, I guess I have to ask my doctor to refer me whether Nhs or private.

Still trying to reduce steroids between 8/9 at the moment, she said there is no inflammation according to my blood test, so I do need to get off them, easier said than done. I won't see her again until August so hopefully by then I should be down to 5/6 following the slow reduction method.

Hope you are well x

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You are not the first person to feel relieved when getting a diagnosis! Many are made to feel as if it is "all in the mind!"

I would recommend Dr David D'Cruz at St Thomas' Hospital, London Lupus Clinic which is on the NHS.

Privately, Professor Graham RV Hughes at the London Lupus Clinic London Bridge Hospital - although I know there is a waiting list.

I am not a medical doctor! Blood tests are not the whole story! Many patients have "normal" blood tests and are ill.

Reducing steroids must be done VERY slowly. Our bodies make 7.5mgs a day but our bodies are lazy and if we give them steroids, the body decides they don't have to!

I was advised to go down 0.5 mgs every other day for a week; the following week, 0.5mgs each day. I

If, you are on 10mgs, go down to 9.5mgs every other day for a week. Then 9.5mgs for a week eg

Day 1: 10mgs

Day 2: 9.5mgs

Day 3: 10mgs

etc

The second week: 9.5mgs every day.

If you are OK, then Week 3: 9.0mgs every other day

Day 1: 9.5mgs

Day 2: 9.0mgs

Day 3: 9.5mgs

Day 4: 9.0mgs

etc

Week 4: 9.0 mgs every day

Week 5: alternating 9.0mgs and 8.5mgs et

If you begin to feel unwell, do NOT reduce. The aim should not be to get down as quickly as possible. This could lead to a flare!

If you have pleurisy, why is the doctor reducing the steroids now?

If you are concerned, contact the rheumatologist or your GP who can contact your rheumatologist!

With good wishes,

Ros

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Thanks for your reply, being new to all this can I ask my doctor to refer me, although she is reluctant to do anything.

I don't understand really as she said according to the blood tests the inflammation had gone but pleurisy is inflammation and they treat it with steroids, who knows. I have contacted rheumatology dept this morning asking about my x ray result and they said the result wasn't back but to contact my doctor who should have the results within a week, I have asked my doctor to contact rheumatology before when I had a problem, but she won't for some reason, she just says wait to see them, at least I have the rheumatology helpline which is very good. I will take your advice regarding the steroids, the rheumatologists speaks as if it is so easy

Thanks again

Leesy

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Thanks, it is good to know these forums exist, and people on here are so supportive.

Will let you know how the next appointment goes, hopefully I will find out more.

Leesy

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