Hi everyone I was diagnosed in Sept with Lupus sle and have still not had my hydrixychloriquine. I believe it is now with the dr and I’m waiting for him to prescribe it. I have been experiencing breathlessness and mild chest pain so I have had chest X-ray and and High resolution Ct scan both clear, my breathlessness became worse so dr given me a spray fro angina which immediately took my chest pain away and I’m not as breathless but it’s still there. I have had to go privately in order to get an echocardiogram which dr said I needed as he thinks this is lupus affecting my heart. I’m due to have this in 10 days time. Has anyone experienced this before and help in anyway with advice.
Anxiety not helping but not the cause as I’m sure you all know but a chat with anyone with advice would be great. Thanks everyone
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CindersSue
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Hi there sorry you are suffering - please get your thyroid levels checked as this happened to me and it was Lupus/low thyroid combined - if your levels are at the bottom of the scale it is worth you being considered for treatment but you would have to find a sympathetic endocrinologist - probably private - I always say if you have investigation after investigation and nothing found as it was in my case - it has to be hormonal !
Thank you for the advice, I never thought about underactive thyroid.
I had a new heart valve last October, the operation took 71/2 hrs instead of 4. I needed blood transfusion and was kept asleep for 24hrs. I am worried sick that something is wrong with the heart valve or maybe one of the other valves when he said it could be a heart problem as the chest x ray and ct were all clear. My bloods are all normal, my anxiety goes through the roof and it’s making me so tense. Just had my first hydroxychloroquine this morning.
Hi CS I am not a medic and hence would not even try to add to what your doctors say regarding your illness and symptoms. I do however think there must be a problem if you still have not had the hydroxy you were prescribed. In our case (it is my wife who has SLE) initially the hospital rheumy dept. prescribed and the hospital pharmacy supplied the hydroxy whilst the rheumy monitored with blood tests to ensure the correct dose was being given. After some weeks the rheumy wrote to our GP to ask him to take over the supply of hydroxy.
I would suggest you contact your rheumy or specialist nurse and ask why there is a delay. If you need a medication the sooner you get it the better it is.
Thank you so much for your advice, I actually took my first hydroxychloroquine this morning. It had been sitting in my drs emails for 2 days . Does everyone have a specialist nurse as the one that spoke to me was a specialist medicine nurse who didn’t know much about Lupus. She told me to pick my meds up from the drs and I would see my consultant in about 3 months and if I have any problems to stop taking them and to let them know. I’m struggling to get answers as there doesn’t seem to be the support there. Thank you for explaining what’s happened at your hospital I hope your wife is tolerating the med and is coping well.
I was talking about a team of specialist nurses attached to the rheumatology department. Ours are very knowledgeable and if they don't know they will find out or refer to the rheumy consultant. They have a dedicated phone line (which is usually an answer phone) but they do ring you back within the day. We can also ring them any time during the week -- a very good service. I hope you find that you also have this valuable service.
I should have said that my wife also had chest pains for many months -- never actually found the actual cause. The rheumy thought (amongst other guesses) it could be the SLE attacking the joints between ribs and chest bone. The trouble is that SLE can attack any part of the body causing aches and pains all over, at different times,, so it is very difficult to tie down. At one stage every morning there would be a new pain somewhere else. Thankfully, that is now in the past and there are no persistent pains but plenty of fatigue -- she is presently having a nap after attending the local village remembrance gathering.
Be patient with your hydroxy it could take several months before you start to feel the benefit. I wonder what dose you are on? My wife eventually settled on 300mg per day (made by Black Rock Pharmaceuticals), but yours could be more of less than this.
Hope this helps. There is also plenty of good advice on this site.
I’m on 200mg twice a day for 4 months and then 200mg once a day, Zentiva film coated. It’s early days but so far so good in that I haven’t any side effects. Thank you for the information on what to expect. It sounds like I should just take 1 day at a time. It’s all a learning curve, and I’m certainly learning more and more ….. and all the information I’m getting is gratefully received so thank you.
Have you been told that you need an OCT test on your eyes? I think the initial test is just to get a measure of your eye condition when you start hydroxy it is then used as a comparator when you have further tests in years to come. This test takes a number of photographs of the back of your eye -- it is absolutely painless and at Specsavers it costs an extra £10.
Hi. Sorry you have this, its my main Lupus problem. Had Pericarditis 18 years ago which leves me with breathlessness, random chest pains and palpitations / ectopic. All of which have been investigated. My heart is OK, bit enlarged. One day I'm fine, the next I'm out of breath at top of stairs. Like all Lupus things it's unpredictable and scary at times. My drugs keep my Lupus under control and I'm lucky that I don't suffer extreme joint or muscle pain . Since last year I have Bisoprolol for palpitations .
It's frustrating and socially limiting at times.
You definitely need to get it checked of course just to rule out any other problems but hopefully then you can put your mind at rest and get appropriate treatment for it. I find gentle exercise is far better than being sedentary all day. Sometimes I have to push myself to get out but it helps. Best wishes ❤️
Thank you for explaining why you have the symptoms I have. I was wondering if this could be pericarditis, my dr thinks it could be heart related and possibly linked to a heart op I had in Oct’23. It took 71/2 hours instead if 4 and blood transfusion. I’m worried sick as I was quite poorly . It was a replacement valve and I’m worried this has stiffened or its one of the other valves. Why he mentioned it is beyond me as he can’t possibly know until I get the echocardiogram. He’s given me more stress and anxiety! Take it easy on the stairs and just try and pace yourself. I’m a newby with Lupus and I’m hoping that this is not to serious.
I too had severe breathing problems. The pulmonologist kept repeating the tests because he couldn’t find a cause. Eventually, he referred me to a neurologist. After half a dozen tests, I was diagnosed with small fiber neuropathy, Vasculitis, Central Nervous System Disorder, Autonomic Nervous System Disorder, chronic Stroke, and many more issues. Many who have Lupus also have other disorders not diagnosed. I also have Sjogrens as well as MTHFR. This is a genetic disorder that inhibits the liver from doing its job of methylation. There are many delineations of MTHFR. I have the mutation that inhibits my body from metabolizing vitamin B. This can cause Homocysteine to build up in your bloodstream. Without giving your body the correct methylated vitamin B and Folic Acid, the homocysteine will build up in your bloodstream and cause heart disease, stroke and blood clots. After I went into Complete Heart Block while in recovery from out patient surgery, they implanted me with a pacemaker/defibrillator. A simple blood test can measure the homocysteine in your bloodstream. It is a type of amino acid, a chemical your body uses to make protein. Normally, vitamins B12, B6, & folic acid break down the homocysteine and changes it to other substances your body needs. There should be very little Homocysteine left in the bloodstream. If your levels are high, it may be a sign of a vitamin deficiency, heart disease or rare inherited disorder. Excess levels of Homocysteine may increase your risk for blood clots, heart attack and stroke. Symptoms include:
Dizziness, Weakness, Fatigue, Pale Skin, Sore Tongue & Mouth, Tingling in hands, feet, arms, and or legs. In addition, hydrixychloriquine was the first medication I was put on. After 18 months I was taken off due to damage to my eyes. Beside causing optic nerve atrophy, it calluses macular issues as well as balance issues. I would fall multiple times a day, hard, many times hitting my head. Eventually a neurologist sent me to a balance specialist who diagnosed the problem and sent me to an eye specialist that had prisms put in my glasses to retrain my brain. It only took a year and I stopped falling from the first time I put the glasses on.
I still have breathing issues with any exertion, however, it is tremendously improved.
I refused to go on any more drugs to manage the lupus and Sjogrens with the exception of cevemeline or pilocarpine for mouth dryness. I was prescribed scalara contacts for eye dryness. I take adderall for chronic fatigue. I also invested in an infrared sauna. Using it daily for 9 months, using liquid glutathione as well as stem cell patches, I put myself in remission.
Goodness me you have been through the mill. I can’t believe that you have had to deal with all of these issues. I wish you well and hope that you remain in remission for a very long time. x
I too cinderssue suffer with chest pain and breathlessness periodically. Had all normal heart tests so it was put down to pericarditis. I just want to say if you get a similar diagnosis then it can be treated very effectively with colchicine and other NSAID's. Colchicine was a complete gamechanger for me and still is. I'm also on bisoprolol, a beta blocker which has helped the rapid heartrate i was getting. Good luck for your echocardiogram . I hope its good news and the hcq works soon for you. Xx
Thank you so much for giving me some hope misty14. I’m having a panic thinking that it might be that my new aortic valve (Oct 23 ) is failing as the symptoms are the same as what I’m experiencing. The anxiety isn’t helping, it’s such a waiting game although it’s only 6 days to my echo I’m struggling. The breathlessness came on suddenly, chest pains not to bad. I take bisoprolol , clopidigrel a statin which all help. Dr gave me a spray for angina and another BP tablet. . My heart op didn’t go well and wasn’t woken up for 24hrs. I fear the worst at the moment. Sorry I’m having a bad evening can’t seem to pull myself out of it. Thank you for your help. 💕
Not surprised your worrying so much cinderssue as your recovering from such a serious op. Your echo can't come fast enough can it?. I do feel for you at this tough time. Is there a heart nurse attached to your heart surgeon's team you could talk to?. They are invaluable and can be very helpful. Usually the breathlessness does come suddenly with pericarditis and you might be having a flare up of lupus after having such a big op.
I will keep my 🤞you get the right help and are better soon. Keep us updated and TAKE CARE. Xx
Thank you so so much for your lovely reply. There was a heart nurse who rang after my op and rang again 6 weeks later but I didn’t get a contact no. This breathlessness came on suddenly and it’s worse on exertion, the chest pain even though Dr gave me a spray I tried ibuprofen instead, that has helped as I had pain in my shoulders. I never thought about it being a flare up as having just started with it to be honest I didn’t know what to expect. I’m normally good at reasoning things out but for some reason I’m not seeing wood for trees, I feel the anxiety and know it’s not doing me any good, that doesn’t help, I do the breathing exercises, I should be out doing walks but I’m scared the breathlessness gets worse. So far so good with the hydroxy so that’s a positive. Roll on Saturday.xx
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