Male with lupus? Treatment advice

[Pizzanightin]

Hi, I have joined this on behalf of my boyfriend . He was diagnosed with lupus about 3 years ago And he is 23. Recently he has had a flare up and began taking steroids again, he particularly suffers from chest pain and swellings of his joints. We would love to hear from people about their advice and how they manage lupus (diet, lifestyle ect) particularly males as we have never known/met any other males with lupus. We are from North Yorkshire So if you could recommend any other groups nearby for us to join that would be great too!

[Apricot100]

Hi pizzanightin (great name!), welcome and thank you on behalf lupus folk for your consideration in trying to understand this complex disease and help your boyfriend.

I do have lupus but I'm afraid I am female and twice your boyfriend's age so can only offer advice from a limited comparison. I do live in North Yorkshire though, and haven't yet found a lupus support group. I attend Chapel Allerton Hospital for my rheumy appointments- does your boyfriend or does he go to Harrogate?

Lupus is so dramatically different from person to person so it's a slippery fish to try and offer useful advice. However things that have helped me are:

Reduce stress - major trigger of flares. So simplify lifestyle and his demands on himself

Diet - many on this forum have found a dairy and gluten free diet works better for them

Exercise- find something that is achievable. Again this varies massively depending on his condition. Some days I can run 5k and lift very heavy weights, other days I can't get out of bed. But even a daily walk is beneficial if possible.

Find a good rheumatologist and don't be fobbed off. You / he knows his symptoms and what he is suffering. Lupus is complex and even many so called experts don't know everything.

What medication is he on? This can be a trial and error process - I've tried loads that many on this forum take and help them which made me worse. It's an individual thing. I suffer from swelling of my joints and Etorixcoxib has made a huge difference. I also take hydroxy and I'm waiting for C19 clearance for another infusion of Rituximab.

If he's on Instagram I would advice following "the lupus trainer" a lady in the US who used to be a crossfit trainer and who very openly discuss her battle with lupus

Finally Google "Spoon Theory". This helps to explain things to family and friends, as well as himself.

If you do find a North Yorkshire group let me know!

Take care and welcome xx

[Pizzanightin in reply to Apricot100]

Thank you so much!!i will look into all of this xx

[Spanielmadlady]

Hi and welcome.although the majority are female there is still plenty of support and advice available here after all we all experience lupus symptoms pretty much the same.i second what Apricot says...I would add a couple of things.rest ...sleep sleep and more sleep.napping during the day helps give you a boost till bedtime.pace yourself,be kind to yourself and learn to say no to everyone if you dont feel up to it or you know it will wipe you out.if you dont you will pay for it with a couple of bad days .Have you have you renal function checked ? About 60% of lupus sufferers have kidney involvement without knowing. Stay out of the sun cover up head to toe ,use factor 50+ and a hat.uv sensitivity is quite common in lupus. I have it and it gives me a migraine if I dont wear a hat and my joints ache.if you dont have a rheumatologist ask to be referred as gps dont know how to handle us lupies.i get chest pain ...it's not unheard of as lupus can also affect the lungs,heart,kidneys and brain .lupus has damaged my lungs and kidneys and inflamed my heart in 2014 putting me in heart failure for a year but that is now resolved with only some minor regurgitation on 2 valves.educate yourself...theres so much to taken in with lupus at appointments etc that it can help if you understand some of what is being said especially with regards to treatment plans.dont be embarrassed about having a symptom list as long as your arm ....we all have one of those ! Ask for help if you need it from employer, occupation therapy can help with things like compression gloves for your hands etc.

It is a rollercoaster of a journey so patience is a virtue but together we stand strong .keep smiling x

[Pizzanightin in reply to Spanielmadlady]

Thank you ☺️Xx

[SurferGuy]

Hi and welcome Pizzanightin,

I'm that rare species that is a male with Lupus

I've been a bit lazy in my reply and have copied and pasted my first post on this forum as it gives some male and general perspective of Lupus.

Since my post below, there has been some significant and positive changes to my condition over the last few months. My symptoms seem to have subsided considerably. This has led to a reduction in my prednisolone.

I still get mild aches and pains, but nothing like what I had before. I've also been able to exercise a lot more without getting fatigued or having to wake up with stiff joints. To give your boyfriend (and others on here some hope), on Friday, me and some friends went on a 10 mile walk around Ashridge Estate. The day before, my family and I walked around Brighton. We amassed nearly 9 miles. A couple of days before this, we walked around and climbed each of the 4 hills in Northala fields TWICE! Unfortunately, all the healthy aspects of this exercising were wiped clean by having ice creams, milkshakes, and various other very naughty treats before and after each of the walks!

If your boyfriend wants any male specific info, please do let me know

Now, before I ramble on, here's my initial post on this forum:

"Firstly, I hope everyone is keep well at this difficult time for all – and more so for folk like us with serious underlying conditions – and I hope we all have managed so far to steer clear of this dreaded large.

I’m a 44 years old male from the UK. I was diagnosed with Lupus in July 2008. Like most, to say I was distraught and scared witless is an understatement. I was worried for myself, but more than this, I was worried for my wife and mum. If it was just me alone, I would’ve been absolutely fine with it and would have just gone with the flow.

Prior to diagnosis, I was an absolutely fit and healthy guy. Very rarely sick. I was playing football twice a week – sometimes twice on the same day, afternoon with my work colleagues, then evening with my friends. I went to the gym twice a week. Ran twice a week. Surfed a couple of times a year (wasn’t very good at it… and still not very good at it now). And a few other sports thrown in in between.

But all of this ground to a halt soon after returning from a ski trip. After returning I felt a mild pain in my left knee. At first I thought it might have been a mild strain from football, but couldn’t think how I could have got it. Then I got the morning pains and fatigue. Couldn’t bend my knees or fingers, walking up and down the stairs became difficult etc.

I was sent to a rheumatologist who at first diagnosed it as arthritis. After initially being distraught, I thought “OK! I can live with this”. But soon after I received a letter telling me it was SLE. I’d never heard of this so done a Google search. And that was it! I was scared witless. Distraught.

I was put on the usual base line drug of Hydroxychloroquine. Then a couple of years later I was on prednisolone.

I had no organ involvement until 2017 when all of a sudden my kidneys were attacked. I was put on a high dose of steroids and mycophenolate. I was also asked if I wanted to participate in a trial for Belimumab (Benlysta). I’d read of this drug and the feedback seemed very positive, so I jumped at this chance. As with most trials, the only downside was that I could be trialling the REAL thing OR just a PLACEBO! But I was up for it. Here’s a link from a UK forum I’m part of of my journey on this trial. Warning! It’s a lengthy read! thelupussite.com/forum/inde...

I’m currently feeling a lot better than I was a few years ago, but then I’m also on very high doses of all my medication!"

[Pizzanightin in reply to SurferGuy]

Thank you so much! Really great to hear from you! My boyfriend is currently at work but I will show him your reply When he’s back. I think he would love to talk to you more about it if that’s okay!

[SurferGuy in reply to Pizzanightin]

That's absolutely fine Feel free to PM me and I'll reply.

[1sam]

Hi. It is so good to hear from a young person to be this involved in his boyfriend health

Just 2 things as I am a woman... 1 this condition affects everyone in a different way. 2 please don’t dismiss “chest pain” as a minor symptom; your boyfriend needs to pay attention to his body and be more specific when reporting it to his Drs...

how is the pain? sharp? dull? oppressive? focalized? constant?

When does it happen? Can he exercise or use the stairs as usual? Is there any shortness of breath? Are there any other symptoms at the same time? Fluid retention (ankles, hands, face)?

Most of the time (my experience) Doctors need to be pushed to give us the best treatment to improve our symptoms.

Your boyfriend’s chest pain needs to be fixed soon.

Best luck!

[Pizzanightin]

Thank you!x

[Londonlupie]

Hi Pizzanightin,

I'm super late to the party here but am relatively new to this group and just saw your post. I found it by searching "male" on the forum, as there are seemingly so few of us!

One thing I have found in my experience with lupus is that doctors, even specialist lupus rheumatologists, consistently undermine my lupus symptoms because I am a man. That is not to say this doesn't happen to women, of course it does! But I have been outrightly told in the past by a rheumy, "I can tell you 100% it is not lupus, because you're a white male." I have been told by doctors that they have never treated a male patient for lupus, and that if it is lupus, men have an easier time with it.

So, with that said, make sure your boyfriend advocates for himself and ensures doctors take his complaints seriously. I don't think it's that there's an inherent bias here against men with lupus, it's that doctors both don't expect it and have little experience with it.

To share my symptoms with lupus (as I think this can be useful): I get widespread joint pain affecting my hips, knees, ankles, fingers, toes, wrists, bases of feet, and neck; random shooting pains throughout my tendons; pulsatile and ringing tinnitus; kidney pain and recurrent kidney stones; mouth ulcers; sore throat (even with no tonsils); burning hot ears; malar rash on face; sensitivity to sun with occasional blistering skin and severe itching under skin; EXTREME fatigue after exercise and general daily activities; recurrent chest infections and pleuritic pain; excessive sweating; dry, itchy eyes; dry flaky scalp and dry skin on ears.

This isn't exhaustive as I can't remember every symptom I've ever experienced, that's the joy of living with lupus! It's a million things wrapped up into one...

I'm currently on HCQ and occasionally prednisolone, although as I have severe asthma and have had lots of steroids in my time, doctors prefer to prescribe this sparingly due to long-term damage. I manage my symptoms with lots of rest, morning stretches, trying my best to reduce stress, saying no to social invitations when needed, and exercising within my limits (which can be a fine balance and I still get it wrong a lot of the time!).

I eat lots of fresh fruit, vegetables, and good quality meat. I take a cocktail of herbal supplements for fatigue, including Gingo Biloba, Korean Ginseng and Schisandra, as well as Vit-D, fish oil, and B-Vit complex on a daily basis. Who knows if it helps, I haven't noticed a huge difference but it can't hurt!

I hope you and your partner are coping well. I'm incredibly lucky to have a supportive partner myself, so I'm sure he appreciates your concerns with all of this. Encourage him to post here if he can, it's hugely validating to read through the posts

Take care for now,

Alex