it has been a while since my last post. I was diagnosed in December in the end, with SLE and started on hydroxychloroquine and methyl prednisone.
The last few months have been a bit all over the place. On the one hand, I’m so grateful not to be crazy. On the other hand, I’m angry that for so long I was fobbed off (as pretty much everybody is it would seem) and then on the other other hand, I’m still trying to wrap my head around having this disease. So all in all, it’s a bit of a head mess 😅🙈
when I spoke at length with my rheumatologist in December, she ventured a guess that it probably started earlier than a year ago (which is when I thought it started) and she connected a few dots for me that just hadn’t occurred to me (dry eyes, dodgy digestive system etc etc) so that has been a relief actually. It seems that maybe all of these random issues that I’ve had over the past several years may all be connected to Lupus!
the two things I’ve struggled with the most are my psychological wellbeing (that’s how I’ll describe it but what I mean is the very dark thoughts and low moods I seem to be plagued with recently) and the hair loss which has probably upset me the most. I don’t know why I’ve found it so hard to cope with losing my hair. But I have spent many days crying in front of the mirror
I have my next rheumatology apt in April so I will mention this stuff to her and see what she says. Has anyone else experienced these things?
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Rocinante_89
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hi Rocinante_89, I can relate, there would be something amiss if we didn’t lose our equilibrium in the face of it all. The hair loss affected me terribly. I didn’t have good hair to begin so I’ve always had ‘hair envy’ with age and lupus the thinning and bald spots really got me down. Between the hair loss and changes to the skin around my eyes which led to severe eczema (both likely exacerbated by the hydroxychloroquine) I was a psychological mess. Eventually I consulted with a trichologist - expensive but worth it. There are several types of hair loss, I have two going on, some types may be treatable. If not there are other solutions we can use to disguise which I didn’t know existed. Even if it turns out nothing can be done sometimes just taking positive action is better than having something gnawing at me constantly, it empowers me. Really wish I’d gone to her years ago but better late than never. Now I’m using a scalp application twice a day and learned about the importance of such things as protein, iron, vitamins B12 & D on hair health. I made changes to my diet. The trichologist wrote to my GP who checked my bloods and prescribed as required. My iron and vitamin levels were within ‘normal range’ so appeared ok but the trichologist explained that they may be sufficient for general health but not for hair health, also factors such as a raised ESR further reduced their level. I tell you all this because I know how hair loss can have such a profound effect on us - it is well-recognised and if a trichologist is not accessible for you your GP will understand the psychological effect. I still have hair envy! Lupus hair is lupus hair, mine is like candy floss but no bald spots & I feel so much better when I look in the mirror, I have resumed hairdresser visits and highlights, it all helps. psychological issues are part and parcel of this blasted condition, be kind to yourself, they wax and wane like the physical symptoms. My own body attacks itself, I’m constantly fighting myself in my head to overcome lack of motivation and depression and I have to keep pushing through the healthcare system - no wonder I’m tired! seriously though, it is hard work, and everyone on here understands only too well the impact on psychological wellbeing. The ancients understood that there is no health without mental health, we’re beginning to catch on. Sending love x
Biotin supplements, caffeine shampoo and a good hairdresser can help. My hair is tons thinner but with a good colourist it looks thicker and honestly I swear by caffeine shampoo, it takes a while to work but does make any hair you have left feel thicker. Don't be afraid to look at wigs either. I am not scared to go there if I thin much more. Many of my friends are Caribbean and wearing wigs is normal and they look great. They taught me not to be afraid to at least try one when needed. I started my peri menopause in my late 30s. Keep an eye out for it as that can make your moods swing like mad. I know what you mean though. It's great to finally get a diagnosis but that doesn't mean it makes living with the condition any easier. Give yourself a break, get plenty of rest, eat healthy with the odd naughty thing when needed. This condition can be life changing and it's ok to be sad, angry or whatever you like as often as you like. This site has good support and Lupus UK has some great regular zoom, whatsapp and face to face groups with supportive people who have been through everything you have. It's a great place for comfort and help. Good luck with your Rheumy and tell them everything that worries you and you think needs attention. xx
Hi Rocinante, welcome! I’m glad you are finally getting answers to all the troubles that have plagued you over the years. I too am on hydroxy for lupus and experience gut issues and mental health ramifications. It is quite normal to feel down about it; tbh, how can you live with a crazy-making disease like lupus and NOT be affected?! We all get down from time to time, and anxious about what the future holds. The good news is that even when the disease flares up, it usually settles down again. We find a way to muddle through. The support on this forum is phenomenal, so please do post here anytime. 🌻🌈💚
I just wanted to reach out and say hello and that I totally understand how you’re feeling. I was diagnosed about 12 years ago now, and I had some very dark days in the beginning. I remember those early days when first diagnosed were a mixture of relief that I finally had something I could blame my symptoms on, and shear panic about what the future held for me. I eventually spoke to my rheumatologist who said lupus is like a cold, some people only ever have mild symptoms and some people develop pneumonia, you just never know how it’s going to develop. He said the best thing to do is look after my health, try to not focus on the future too much as I had little control over it, and to try and get on with my life. I found this really helpful in getting my head around things. I’ve had 12 relatively good years with it, but recently I’ve had more symptoms and I can feel myself slipping back into those dark days panicking about my future. I’m also suffering with hip bursitis and tendinitis down my right side which is a new diagnosis and apparently not connected to lupus. I’m totally fed up at the moment and feel quite isolated with it all. I’ve tried really hard over the years to not let it define me and or get into my head too much. If I was having a flare up I’d just let it do its thing and shrug it off, but the past few months have taken its toll and I’m finding it all really hard to deal with. I hope you feel better soon and find ways to cope with it like I did x
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with age and lupus the thinning and bald spots really got me down. Between the hair loss and changes to the skin around my eyes which led to severe eczema (both likely exacerbated by the hydroxychloroquine) I was a psychological mess. Eventually I consulted with a trichologist - expensive but worth it. There are several types of hair loss, I have two going on, some types may be treatable. If not there are other solutions we can use to disguise which I didn’t know existed. Even if it turns out nothing can be done sometimes just taking positive action is better than having something gnawing at me constantly, it empowers me. Really wish I’d gone to her years ago but better late than never. Now I’m using a scalp application twice a day and learned about the importance of such things as protein, iron, vitamins B12 & D on hair health. I made changes to my diet. The trichologist wrote to my GP who checked my bloods and prescribed as required. My iron and vitamin levels were within ‘normal range’ so appeared ok but the trichologist explained that they may be sufficient for general health but not for hair health, also factors such as a raised ESR further reduced their level. I tell you all this because I know how hair loss can have such a profound effect on us - it is well-recognised and if a trichologist is not accessible for you your GP will understand the psychological effect. I still have hair envy! Lupus hair is lupus hair, mine is like candy floss but no bald spots & I feel so much better when I look in the mirror, I have resumed hairdresser visits and highlights, it all helps. psychological issues are part and parcel of this blasted condition, be kind to yourself, they wax and wane like the physical symptoms. My own body attacks itself, I’m constantly fighting myself in my head to overcome lack of motivation and depression and I have to keep pushing through the healthcare system - no wonder I’m tired! seriously though, it is hard work, and everyone on here understands only too well the impact on psychological wellbeing. The ancients understood that there is no health without mental health, we’re beginning to catch on. Sending love x 
new to lupus and diagnosis: pain and what to do! 
Update... change in diagnosis... 
Diagnosis 
Advice needed with Diagnosis
