I just received my diagnosis of Lupus a few weeks ago after 4 years of uncertainty, multiple investigations including LPs, MRI scans, nerve conduction tests and then eventually referral to rheumatologist due to abnormal bloods and swollen painful hands. I’ve since developed a rash on my face, arms and chest. I was put on Hydroxychloroquine but had to stop immediately as I developed a severe itch which could be potentially serious. I’ve been told that this was my only treatment option alongside NSAIDs which I’m allergic to. My biggest problem is severe fatigue and I’m finding this difficult to manage alongside full time work and a busy family life. I’m feeling a bit overwhelmed so any advice would be gratefully received!
Thanks x
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Pxs75
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Who told you that's the only treatment? I'd find a new doctor as there are many other meds used to treat lupus, such as steroids and a range of other autoimmune drugs. A short course of steroids is often prescribed for certain symptoms, though there can be side effects to them if they are used over a long period of time, but they can also be life saving.
There are also many lifestyle changes to make if you're diagnosed with lupus that can bring the illness under control and prevent flares. Many patients have trouble with exposure to the sun, so avoiding sun is important. Many patients have trouble with sulfur, so avoid things that are high in sulfur like wine. You must also work to reduce your stress since that can cause flares, so practice self care, and make rest a priority. You also may need to change jobs or cut back on your work hours if you have a high stress job.
I made the lifestyle changes and have been able to control symptoms very well, and I make my health my top priority. Get plenty of rest, eat well, avoid your triggers. I moved to a smaller, less expensive house so that I could also switch to jobs that paid less but put a lot less stress on me and were more flexible.
There is lots of info online about how to manage lupus with lifestyle changes, so start reading up on that and start with small changes. And find a new doctor if they say hydroxychloroquine and NSAIDs are the only medical options.
Thanks for replying AimeeA. I really need to start trying to do some light exercise and looking at healthier eating. I’ve been so fatigued that the easy option of convenience foods having been the normal for me but I really want to make positive changes to try and help symptoms.
It’s quite awkward with the medical and nursing staff in my local rheumatology dept. I’m a specialist nurse for another long term condition so they all know me from the hospital and I feel like they just expect me to know everything about lupus when the reality is I don’t! Also difficult to question their treatment choices as I feel like I’d be causing trouble. Anyway moan over, I am definitely going to take some of your advice and look at lifestyle overall xx
If you are extremely tired, also have your thyroid levels checked for low thyroid. It is extremely common for lupus patients to go hypothyroid because lupus can attack your thyroid gland. I went thru a period where I was extremely tired and just blamed the lupus, but the rheumatologist checked and I was hypothyroid. Once I started taking the levothyroxine to increase thyroid hormone, I felt 100% better.
Low vitamin D levels and anemia can also produce exhaustion, and that is common in lupus patients (and women in general), so get that checked.
A regular doctor can order a thyroid, iron, and vitamin D check (doesn't have to be a rheumatologist) and good doctors usually screen for it when they hear someone is tired. You may have already had the tests so check with your doctor to see, and if not, ask for them.
Add a daily multivitamin if you've been eating poorly. Nutrition can have a HUGE impact on how you feel and energy levels. Get sufficient protein in your diet too since you need your muscles to be strong if you're on your feet at a nurse. Many people eat too many carbs and not enough protein.
I found that reducing sugar helped too... Sugar gives you a quick boost, but then you crash and it makes you tired. I was pretty addicted to sugar, but when I started cutting it out except for special treats now and then, it helped stabilize my blood sugar and I felt much better and less tired too.
I am a sugar addict and always use it to give me a boost so that is a definite to look at. I love to cook and normally eat really well but have just been lazy recently but this must change. A multivitamin is a good idea, I already take vitamin d and b.
I had all my bloods done in June and thyroid normal but my neutrophil count and leukocyte count r both low so this will be contributing as well.
Hi Pxs75. I was recently nearly diagnosed with lupus but as my ANA was negative (it was positive a few years ago) and lupus antibodies negative the planned Hydroxchloroquine was not prescribed. I have nearly every other lupus symptom including malar rash, livedo reticularis, joint pain, fatigue, mouth ulcers, anaemia and frequent UTIs. I also had raised immunoglobulins apparently. My neutrophils were 2.2 and lymphocytes are always just below range or on the border as are my white cells. I’m curious to know what your neutrophils are as I consider mine low. I hope you feel better soon.
Your situation seems similar to mine. My ANA is negative but double stranded DNA positive so I was in limbo for a while. My immunoglobulins in my blood r normal but abnormal in my CSF. I have lots of typical symptoms like u describe.
So my last bloods were in June and my neutrophils r 1.1 and leukocytes 1.3, white cells 3.6 so all pretty low and I definitely think it affects my energy levels.
I’m sorry to hear your energy levels are so low and I can see your neutrophils are quite a bit lower than mine and your white cells. I do hope you find some solutions to your health - I have worked out I always seem to feel worse after sun exposure and stress (work related) and this really flared my mouth ulcers. I take lots of Vitamin C and my Vit D was recently over 100 so I don’t think I’m lacking either of those. I hope things improve for you with your health and thank you for reply !
Hi.what a pity you couldn't tolerate hydroxychloroquine.have they suggested azathioprine, mycophenolate or methotrexate to you.? There are other like cyclophosimude and cyclosporine ...sorry if the spelling is incorrect btw.I take hydroxchloroquine, prednisolone and mycophenolate for my lupus.it took 5 yrs for me to get a diagnosis and after finally been on meds appear now to be stable . As Aimee said there are alot of other adjustments that can be made that helps.sleep is a huge part nap if you need to and dont feel guilty.you have to put yourself first in order to be able to function.educate yourself then you can challenge your dr about meds.good luck x
The doctor is saying at the moment that my symptoms r not severe enough for the other treatments. Although I had no idea until I came into this forum today that other things I have been experiencing for years could also be related to lupus like altered sensation in my legs, nerve pain, cramp in my legs and feet and bowel problems. If nothing else lots of things to discuss with the medical staff. Thanks for ur advice and love ur photo. I’m a huge dog lover although for me it’s golden retrievers x
Are you getting at least 64 oz. (8 cups) of water a day? I was getting terrible leg cramps, and dehydration can cause a lot of symptoms like that. It can also make you tired, dizzy, etc.
It is also paradoxical, in that when you don't get enough water, your body hangs onto water and you can get swelling and associated joint pain from that. I found that when I get dehydrated, my blood pressure also goes up too high too.
With lupus, it helps to look at your body as the finely tuned machine it needs to be. A lot of wellness is related to how well you take care of your body and optimal nutrition rather than squeaking by living on fast food, junk food, sweets, coffee, wine etc. I was really bad at that, and recognized that now that I had lupus, I couldn't get away with it anymore if I wanted to survive and thrive.
It must be a mixed blessing to have a lupus diagnosis after all these years of suffering. It is tough to know you do have a chronic illness but now you know what has been wrong all these years.
I think what the doctor means is that your symptoms do not warrant the risks of the other medications for lupus. Steroids do cause problems long term and rheumatologists try to use them as little as possible. The other immunosuppressants have side effects like increased infection and liver and kidney problems.
You are in that area where you probably feel pretty bad but your rheumatologist worries about causing more illness from medication. One thing you could advocate is for a short course of steroids when you are in a flare. Sometimes they are more flexible about that because the side effects are minimal. It has helped me a lot.
Thanks, I think that’s exactly the issue. And I agree, I was very side effected by the hydroxychloroquine that I’m reluctant to jump into new treatments. But I need to find a way to manage the symptoms I have now and it looks like healthy diet and lifestyle should help loads
Be honest with your rheumatologist about your functioning level. They may be able to offer solutions.
Graduated exercise has been shown to help fatigue in lupus patients. There are some doctors who will even try stimulant medications, I think. It is important that your rheumatologist get to know you. You will work together to give the safest way to deal with your symptoms. They know the fatigue is the worst!
Hi and welcome to the group I had to come off hydroxychloroquine also as it messed with my eyes - I take Methotrexate which has helped but still get regular flares and hasn’t really helped with fatigue but it’s different for everyone, have you seen a rheumatologist yet as there are different options available to you - I had to give up work in the end but not the same for everyone- best wishes xx
I saw a rheumatologist in the midst of Covid but no definite diagnosis then. When I developed new symptoms of extreme fatigue and rash I spoke to him on the phone and was diagnosed with lupus. I am really keen to stay working, I love my job but need to learn to manage my lifestyle more effectively
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