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newly diagnosed and confused

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hello my name is anju and i have been recently diagnosed in the past few months. I have been dealing with severe chest pains and shortness of breathe. Also being extremely tired all the time. I would like to know if anyone has been also dealing with lung problems because of this lupus. Also if you know of any alternative medicinal things that i can use. I have been taking plaquinil and prednisone and i am fully aware of the long term damage this can have on my kidneys. If anyone can help me out i would gretly appreciate it.
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Welcome Anju,

I cant answer the question regarding the medications, just wanted to say hi!

I'm sure someone more knowledgeable will be along later to help you out!

Hello and welcome to the site. :)

Do you know exactly what the cause of the chest pains is? I've suffered from pleuritis and costochondritis, and have found prednisone to be of a lot of help with pleuritis especially (usually requiring up to 20mg a day though of prednisone for relief). The costochondritis took a lot longer to get over for me... NSAID medication can help reduce the pain as well, so you may want to ask your doctor about trying some. There are other causes of chest pain as well, and the best treatment for it is to treat the lupus appropriately as well as to treat the pain/symptoms.

As for alternative meds, we do have a section on the site that deals with complementary medicine and you could search through there. In general, I personally have some faith in accupuncture although haven't tried it myself, and also believe that there is likely some benefit from a good Omega 3 supplement as well as a daily multivitamin. Most important of all though is a quality diet filled with fruit, vegetables, complex carbohydrates/fiber and minimal animal fats & sweets.

When you mention kidney problems, I hope you realize that only about 50% of lupus patients will get kidney problems that need aggressive treatment (& it is part of the disease instead of a result of the medications used to treat it). Many here have had lupus for a long time with no kidney trouble.

Best wishes to you for controlling that chest pain and shortness of breath.
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Hello Anju and welcome :)

I would agree with Maia that many problems will improve with correct control of your lupus which can take quite a while after diagnosis. Finding the right medication combination for each individual is not that easy.

Lung problems are actually relatively frequent with lupus. However, your shortness of breath and pain could be caused by so many things that it would be important to know exactly what. The problem may not necessarily be very serious though obviously, shortness of breath can be very distressing.

Have you seen a lung specialist yet? I think that might be a good thing to do even if only to get all the tests done and have a reference point for the future.

For the moment you are only taking plaquenil and prednisolone. Hopefully the prednisolone will be a short term thing until the plaquenil works or, if plaquenil alone is not enough, something else is added.

As for alternative medecines. Yes, some things such as acupuncture, good physio and some vitamins may be very useful for you. However, a word of warning, some "alternative" medecines can be very harmful and we need to remember that they are far less strictly controlled than conventional meds.

Nobody wants to stay on prednisolone for long, however, for some peopple it is truly life saving and necessary.

Your doctor is the best person to advise you on medication choices. Of course, you musn't be afraid to discuss concerns with him/her. Often we don't dare ask and it can be very valuable to air your fears, sometimes leading to a solution you're happier with or more knowledge on your part making you feel more in control.

hope that helps a little,
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Hello Anju, Welcome here. Please remember that it can take a little while for the medication to have effect. Don't despair, you will find the right mix of tablets. A good general diet is a great help and plenty of fluids, but I don't take any other supplements. I wonder if starting any alternative medicine just now would cloud the picture, meaning you are unable to assess the effect of the prescribed meds. Just a thought.......
x Lola
Welcome Anju.

I am newly diagnosed with Lupus too and I am on Plaquenil also.

I have no good advice to give you as I am learning the ropes too.

I just wanted to say welcome.:wink2:
Welcome to the forum Anju

It's tough after diagnosis because everything is overwhelming if not downright scary. As the others have said, it can take time to find the right medicines and for them to work. You have come to an excellent place for understanding encouragement and reliable information about all aspects of life with lupus. I hope you have a concerned and knowledgable doctor. That is important, and so is telling your doctor about all the problems you have to get them explained and investigated.

Plaquenil takes several months to feel the full effects. If you mean you are worried about Prednisone affecting your kidneys, it is used for treating kidney disease as well as bringing down general inflammation fast and reducing the severity of all symptoms. It does have a number of very serious long term side effects so for that reason it is used for as short a time as possible at the lowest doses necessary.
Plaquenil has no more potential side effects than OTC medicines that people take without a second thought.

There are a number of complementary therapies, that is added to medicines, some of which have been mentioned above that can bring relief and inmprove general health. You might want to ask your doctor about calcium and vitamin D supplements because Prednisone can cause bone loss over time.
Fatigue is a really big issue in lupus. Make sure you have been tested for anemias. There's a disease called fibromyalgia which causes all sorts of symptoms some very like lupus symptoms that about one third of people with lupus have. One of it symptoms is disrupted sleep patterns so sleep isn't refreshing. Ask your doctor about that.
Most of us find we can't do everything we used to. Rest is very important so make time for yourself by prioritising and minimising. Learn some relaxing and stress reducing techniques. Don't expect too much of yourself. It is a demanding disease that can't be fought by sheer will power. By careful adaptation of your life you will learn to live with it and as well as possible despite the limitations it imposes.

There are no natural replacements for the medicines used for treating lupus although there are lots of people online making money by claiming 'cures' and so on. Big claims need big proofs - you need to be as careful with your health as you would be with any important purchases.

All the best
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Hi Anju,

Welcome to the site. I hope you will find the valuable information and comfort you need to help you deal with Lupus.

You didn't say the cause of your chest pain. Is this something new? Presently I am dealing with my first bout of Pleurisy. It is sure scary when you can only take so little breath at a time. I have found that eating smaller meals and applying heat along with increasing my Prednisone have made things more comfortable for me. Instead of taking deep yoga breathes I am doing very slow shallow breathing to keep from irritating the lung lining any further. If you have discovered anything that works for you I would love to know.

Take care,
Welcome Anju. I would firmly ask your Dr to carry out lung function tests and ALL other necessary tests to get to the bottom of the pain.

I'm newly diagnosed also so can't offer any more advice than that. Sorry
Hi Anju,
I'm newly diagnosed with MCTD and just found this site last week. I've received meaningful support here already.
I just wanted to mention that my rheumy ordered 'baseline' studies of my lungs and heart. Non-invasive pulmonary function tests for lungs and an echocardiogram for my heart. She said she wanted the tests done at diagnosis, so she could assess any progression in my disease in the future. It made a lot of sense to me... Have you had any testing like that, somewhere to start ? Perhaps its something to consider asking doc about...
Good Luck...
Hi Anju,
I am also newly diagnosed and I don't "get" this disease at all....I too am plagued by profound fatigue and I go through periods of a very heavy chest. I went through a workup with a cardiologist and thankfully my heart is not affected but my rheumotologist did say that difficulty breathing is a sympton too. I have been on plaquneil for three months and sick for two years until I was diagnosed as my initial diagnosis was lymphoma - I wish you luck and I know what you are feeling. All the best,
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