Hi my husband is 15wks into assessment and Drs feel he has Lupus. Now looking at treatments and Rheumatologist is suggesting Methlytrexate as the first line treatment. Any opinions on this or other treatment options out there please. Any information greatly received, we’re a bit overwhelmed by it all. Where’s the best place to search for up to date treatment options.
thanks so much
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Jump to repliesIt can be very overwhelming when we first get diagnosed and I think we have all been in the situation of trying a medicine to find the one that works for us. I am now on my third. Lupus UK lots of information and has a section on drugs as does Versus Arthritis which has an excellent section on drugs like Methotrexate. The British Rheumatology Society has a section on Guidelines for treatment- it has one on Lupus which is currently under review - but it also outlines the remit / rationale for the review which is a very useful document too. I hope that gives you a little start.
Hello,
Welcome to the lovely lupus family 
I felt so overwhelmed at the start of my diagnosis and still at times feel overwhelmed now over a year in. I take hydroxychloroquine, methotrexate and have had rutuximab infusion. It all seems very scary at times but you do just have to find what works for you. I've read lots on here about people being prescribed steroids, I've tried and they don't do anything for me. The best advice I can give is make sure you advocate for yourself, if something isn't working be honest and voice it.
Having the regular blood tests was the bit I found the most annoying at the start of methotrexate, but they are important so make sure you go when they say
There's lots of good advice on here, the lupus uk Instagram page is good too and believe there is a support group for men with lupus on there too
Good luck, your not alone xx
sorry to hear that, I had methrexiate when my lupus flares up and the pain was unbearable. It help I was on hydroxyochroquine before but was put on this as well which assisted with the condition. Hope this helps
According to my Rheumatologist who is at a lupus centre of excellence, hydtoxychloroquine is the first line of defence in lupus treatment. Then the dose can be increased if needed and then the stronger drugs are given like methotrexate are added if hydroxychloroquine is not so effective. I am guessing there must be a reason why he is not trying hydroxychloroquine first? You should ask why if you weren't told. What's important is that he's given something to dampen his immune system down. Unusual that the Dr feels he has lupus without some proof. I would say the majority of us only get a diagnosis of lupus once there is concrete proof with a positive blood test.
hi think husband has had all tests n scans possible so going off these results rheumatologist saying lupus but difficult to diagnose he says as we are only 15wks into symptoms. Yes we are definitely going to ask why methotrexate and not hydroxychloroquine-seems strange.
My husband is so much better after 4 wks on steroids, how do drs decide dosage etc? Thanks for your help
Hi. Drug doses go on your weight. Steroids are great and can help immensely but there are alot of side effects and risks associated with them including dependency. Kind regards SML x
Hi I think the first thing to remember is that all lupus sufferers are different if not unique. It follows therefore that the medicine regime is different for each patient. I think the first thing you need to do is get a copy of your husbands blood tests. We use Patient Access that you can obtain via your GP reception. You will have to do your homework and use Google to find out exactly what tests have been requested and the find the range associated with each test. You can then see how far above (or below) the range you are. Clearly this difference indicates how severe your lupus is which knocks -on to which medicine you need. Also when you have a copy of the tests you can go to your rheumy appointment armed in advance with your results and you can ask questions about what they mean and ask how they are interpreted etc.
My wife was taking methotrexate for 20 years to treat her RA when she gradually got ill and in a downwards spiral until she was very ill indeed and had to be fed through a tube for 6 weeks. We now think that the strength of the methotrexate plus the stronger baricitinib combined virtually destroyed her immune system. causing multiple infections to arrise. It was after she had been discharged that a blood test cam back to the hospital indicating that her dsDNA (the key indicator for lupus) was over 1000. She was then diagnosed with SLE and put on hydroxychloroquine which was described to us as "a much gentler drug". It took nearly two years to bring the dsDNA down to within range. Thankfully, she is now much better but still far from her old self.
Other tests to look out for are ESR and CRP which are indicators of infection.
Finally, please be carful of steroids. I was given them for 6 weeks for loss of appetite when I was on chemo. The result was (with hindsight) that I was "as high as a kite" renewing tiles on the roof and laying concrete slabs etc. It resulted in me having 3 X fractured discs in my spine and osteoporosis. The consultant in the metabolic bone medicine clinic said that many of their patients had been previously treated with steroids. Just something to be aware of.
Hope this is of some help. Good luck.
hello If your husband has a diagnosis of Lupus the WREn project is one look up for support for those with a new diagnosis. They have funding for Wren Prject now for men which is great
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