I have had APS since 2016, living in Norway and have “fatigue”. This is by far the most demanding problem with my APS. I read on the APS support UK page the following recommendation:
“Take 200-400g hydroxychloroquine daily. This drug has long been used to treat fatigue and joint pain in autoimmune conditions such as arthritis and lupus, and is now becoming recognised as an important medicine for APS too. This will need to be prescribed by your GP, and it is also very important to have a hydroxychloroquine retinopathy eye test once a year as long-term use (over five years) of this drug can sometimes damage the retina.”
What is your experience with this ? Do someone have ant research articles to recommend on this subject?
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Jonr
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I did do a 3 month trial not long after being diagnosed and didn't notice any difference but many on here say it has helped. I also have Epilepsy and that is main cause of my fatigue after having had a seizure. About 6 months ago I had a fairly mild case of Covid treated with anti virals and did have a longish bout of fatigue but I attributed this to Covid rather than APS.
It could be worth a try to see if it helps.
I am drinking 400 per day, and it has made a huge difference in my fatigue levels and join pains that I experienced.
in reply to
what are you drinking Apsinthehouse? 400 of what? I am interested to know.
I was put on HXCQ many years ago. I had a full eye exam before I could begin including the field of vision.
Initially I had terrible tummy issues They lasted about 3 months, which was difficult to work through but then I noticed massive positive changes.
It felt like I had found my miracle cure. Then I went for a check up with Prof.D’Cruz in London. There was something wrong with my heart. An ECG revealed my QT (time it takes the heart to recharge to beat again) genetic testing followed and it was discovered that I had Long QT Syndrome (my family were tested too. It became apparent that my dad, his sister and all their offspring had it!)
That was that I had to stop taking HCXQ as to continue would have led to a cardiac arrest. Many drugs can do that to patients with Long QT
It’s awful knowing there is something that made me feel so much better - but I can’t have it! Good luck with it if u try it but remember that it takes a good 3 months to work and you will probably experience an upset tummy during that period. X
Hi, I was on it for many years helped me tremendously. But one side affect is it does affect your eyes. I was diagnosed with macular degeneration so was taken off the Hydroxychloroquine and now my eyes are stable. I know it doesn’t affect everyone the same but having you eyes checked every year is crucial.
yea I had mine checked every year Inc field of vision. I thought it only affected the field of vision. Did it cause ur problem? Glad it’s stable now. X
They said it was the cause and had to stop the it immediately. Which wasn’t helpful as I had no backup meds. I am now on warfarin and steroids would prefer to be on the Hydroxychloroquine.
me too! I’m on Azathioprine, Mepacrine, 10mg Steroids, Apixaban (replaced Warfarin), Asprin, Nexium, heart meds, CalVitD, Candesartan, Dihydrocodine, Paracetamol, sometimes Oromorph, Omega 3 oils (advised by Prof.D’Cruz), Fibrogel, vitamins, it’s way too much and with all that lot I’m totally fatigued, in pain 24/7 and have no quality of life. 😩. It’s not easy for us is it x
fatigue can be lessened with lifestyle changes as well. Mindfulness and yoga are proven to reduce fatigue and improve quality of life in lupus and cancer patients. Walking thirty minutes per day, improving sleep Hygiene and a high fiber diet are also proven to improve fatigue. Treating any under lying comorbitities , such as depression, anxiety or metabolic syndrome is also very important.
I have never taken that. But fatigue which would come and go over my entire adult lifetime vanished when I discovered quite by accident that I have gluten sensitivity! The effected not just my adult years. Turns out, my physician father and his colleagues suspected this when I became anemic at age 4. My mother thought they were gaslighting her. They divorced and I thought that the come and go fatigue was just who I was. I was dx with APS in 2001 with high cardiolipin antibody titers and high IgG, M and the other one ( cant recall.) Since going gluten free in 2004 all those tests are now negative and I feel better at age 67 then I did at 27! So, talk to your physician. Going glutenfree can be very annoying, but the only side effects are the requirement to grill waiter, waitresses and chefs about gluten content, and reading labels at stores. Oh yes! And gluten free groceries end to be pricier! But if you are gluten sebsitive or have outright Celiac, you will have more energy and time in your day. Worth the cost!
I consulted with Cleveland Clinic Functional Medicine some 10(?) years ago and based on my blood tests, I was presented with their conclusion that I was eating something I am allergic to. I was put on a VERY inconvenient elimination diet for 2(?) weeks and then invited to resume eating those eliminated foods, one at a time. "When you reintroduce the culprit you will know that day!" And indeed I did. The hidden culprit? Cashews. Of all things, cashews! Other nuts including peanuts are fine. Now my blood factors are, to quote one hematologist who thought I wasting his time) are " boring." I like boring. And after eliminating gluten I didn't think life could be better. Silly me. I now am a big fan of functional medicine: find and treat the origins of ailments, instead of attacking those continuing results.
I trialed on hydroxychloroquine a few times but it causes severe migraines for me. My doctor laments that I can’t take it to help my fatigue and pain issues. There is nothing else that’s similar apparently.
I started on hydroxychoriquin 6 weeks ago and have noticed a positive difference in intestinal distress and overall less negative symptomology - I was reluctant at first just because of the Apixaban, Clopidigrel, atorvistatin, etc … didn’t want to keep throwing more meds in the mix, however it has me feeling better overall and I’ve not noticed negative repercussions.
Thanks.. do not like to add more medication either….., but nice to hear it start helping for You…, yesterday I was totally fatigued, due poor sleep.., today better…
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