I have had to stop my hydroxychloroquinine due to the drastic increase in my psoriasis on my face. But now getting the joint and muscle pain back along with fatigue. I can’t suffer the psoriasis as around the eyes is painful and makes me want to be a hermit! But can’t stand the pain and fatigue. It’s going to be a Hobson’s choice unless there is a viable alternative. Anyone have any ideas?
And got those who know me now seeing a research neuro as I have been told by Prof Hunt I have frontal lobe hyper-profusion and it makes me a fascinating subject! So off to Queens Square!
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Greenmil3
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Kelly I think it’s legal but I used to smoke the crap so don’t want to go down that route! Sorry not to have been around a lot on here as my app isn’t working as it won’t let me log on
Hi, I'm lucky so far, can still take Hydroxychloroquine without any contra issues. When I have tried to reduce the dose within days the pain was back, took months to get back to 'my' normal. So I have total empathy with you.I also suffer with neurogenic-arterial TOS along with sjogrens too - it was suggested here for me to try Low-dose naltrexone, I did a lot of research and eventually tried it, not looked back since, pain reduced with added benefit less flares.
I wouldn't suggest you start this if you are trying new things with Prof Hunt (She is also my consultant) or your new neuro, but keep the idea on the back burner, so there is always hope?!
I have an electrical heart condition called Long QT and sadly HCQ made it worse so although it really helped me with symptoms of Lupus and Sjogrens (APS came later) I was about to have a heart attack and had to stop it.
My consultant Prof D’Cruz put me on Mepacrine and that helped a bit although it isn’t licensed for those conditions and later Azathioprine (immunosuppressive drug) as well. I was already on steroids (and omeprazole & Adcal with vitD) so I stayed on them. He also advised Omega-3 oils.
As well as that I now take Apixaban (replaced Warfarin) and Asprin for APS.
Recently I’ve been put on Candesartan for APS migraines and it’s been amazing.
I take a mixture of painkillers (and Fibro gel sachets to help with their affects on the bowel). I obviously take heart pills, and decided to take vit C with Rosehip (which is ok so long as u take it all the time)
It’s not much fun juggling all those meds. 23 pills a day! Some don’t interact with others so can’t be taken at the same time, some after food, some best before… But it helps me get out of bed each day!
Anyway Mepacrine and Azathioprine replaced HCQ for me. Not as good but by far better than nothing! (I did stop AZ for 2 years and go onto Methatrexate Injections. It helped the symptoms but I was extremely nauseous all the time it was a miserable existence so I stopped it and restarted AZ.
I wish you all the best. If u can’t take the best meds for the job I’m afraid it will be trial and error with a mixture of other drugs.
I know people who swear by ‘Gummies’ but I’ve not tried them.
Personally, I wish Cannibis was legal for medical use in theUK as it is a medicinal herb. But that’s for another post! 💋 x
If you are able to selftest at home regularly for your INR levels (are you on warfarin?) not to be affected, I would try CoQ10 400mg .... as a safe experiment.
It is by far the best performing supplement I have taken.
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