My Rheumatology have reduced my plaqunil dosages from two tablets to one tablet a day, as my blood test have been showing that Lupus is in remission. Although I do not feel that at all. I agreed to reduce my medication and now after two weeks I feel so stiff, terrible joint pain, headache, fatigue, my heels swollen and painful to stand on,and have hot and cold flushes, if this is remission I hate to remember what a flare is. Anybody had any experience like this, I would like to know, I rang my Rheumatology and been advised to take the full dosage again.
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ALFRED-GEE
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Hello Alfred: this doesn't sound like remission to me!
I question how expert your consultant is at treating lupus patients. My understanding is that blood results can improve while our daily meds are being effective. This doesn't necessarily mean lupus isn't still active and we don't need our meds!
I hope you'll see your gp asap to talk about this flare during this hydroxy (plaquenil) reduction. Your gp, I think, should write to Rheumatology about this asap. And while you wait for Rheumatology's reply, my feeling is that you & your gp may well decide to return your daily hydroxy dose to its previous level
NB there is such a thing as "pharmaceutically induced remission" in which our blood results improve along with our signs & symptons so that we are seemingly well, but actually this is due to the effectiveness of our treatment plan meds
Take care Alfred
Please let us know how you get on
🍀🍀🍀🍀 coco
PS a few years ago, my rheumatologist had me stop hydroxy while immunology began to investigate sinister bone marrow blood results (I remained on my daily mycophenolate & pred...I just stopped hydroxy). After 5 months off hydroxy I was told to return to my full daily dose because my lupus-related neurological + vascular signs & symptoms were flaring severely. Things improved as soon as I was back on hydroxy
Hi I had a similar experience coco has explained why brilliantly only add that it took me a few weeks to feel really poorly and like you rheumi said to up the dose again asap and it took me months and longer to feel better as I had before reducing it.
Rheumi this year suggested maybe trying to reduce again in a couple of years very slowly and not half the dose immediately....I am better with staying on a full dosage just over a year on through the winter, very UV sensitive wear 50 factor even on cloudy days...feel better. Ml
Just curious how many milligrams is each tablet. My wife takes 200mg. I'm wondering if her condition would improve if she were taking a higher dose. Right now she's not functioning well due to fatigue and pain.
Hydroxy dose is calculated relative to patient weight. Dosage seldom is more than 400mg daily in lupus cases. E.g. I'm 1.7m tall & weigh 65kg and am prescribed 400mg daily.
I take 1 tab @ breakfast & 1 tab @ evening meal
I'd definitely ask her medics to reconsider her dosage
Thanks, that's very helpful. My wife used to weigh that much before all the medical problems started. (And she's about the same height as you, too.) But she gained quite a lot of weight. Don't ask -- I'm not supposed to know, and I wouldn't be allowed to say, even though I'm using an alias.
Hello ALFRED-GEE. Yes, I have experienced exactly that situation. I was diagnosed with SCLE (subacute cutaneous lupus erthymatosus) in November 2013 and I started on 2 x 200mg of hydroxychloroquine on the very same day that I was diagnosed. At that point I was told by both a private rheumy and dermy, and later by an NHS rheumy in March 2014 that with SCLE I would experience flares in the summer only - due to the fact that my type of lupus was skin only and primarily the sun was my trigger. I was even told that some people with SCLE came off their meds completely in the winter and only needed them during the summer. I was niave and believed them, thinking as far as lupus went, I was very lucky, I would go so far as to say I was relieved. However, this always confused me as I did not only experience skin issues by other systemic issues too but you in those days I believed what the doctors told me. After that diagnosis by the private rheumy, I then saw the NHS one in March 2014. She told me that she wanted me to reduce my hydroxy in the winter months. I felt like the hydroxy had barely started to work at that point. I'd only been on it 4 months. Looking back, I think really I had been in a flare for the whole of 2013. It was also, in hindsight, my 2nd ever flare. My lupus started after the birth of my 3rd child in 2008 and I'd had a big flare in 2009, that went undiagnosed. Anyway, I digress. So I did tell the rheumy I was reluctant to do this, as I was scared of slipping backwards again. I managed to get her to agree to me reducing it in October 2014, rather then September. But by Christmas 2014 and New Year I was slipping further and further backwards. I had reduced to 2 x 200mg a day one day and 1 x 200mg the next but the effect was terrible. I did not know what to do, as I had no way of contacting her and had no lupus/rheumy nurse. So I write to her explained how I felt and told her that I was putting myself back up to my initial dosage, 2 x 200mg a day. She replied, saying that was fine. She couldn't see me any sooner than my appt, (always 11 months apart) as she was too busy. I could either see my GP or with SCLE I should be under the care of a dermy anyway and they would help. I had no dermy at that point and there wasn't one at that hospital any more. To cut a very long story short of how I have got here, March 2017, I was lucky enough to strike gold with a very good rheumy last year. My Knight in Shining Armour. He took control of my case last year for 9 months, before leaving. He amended my diagnosis to SCLE with systemic issues and I am now on 3g a MMF a day too. Those doctors who were initially involved in my case totally misled me about my form of lupus. SCLE is an overlap of SLE and DLE. All my records say SLE anway. I have flares all year around and it doesn't only effect my skin. So my advice would be listen to you body. You were probably feeling better due to the meds. Now you have reduced them you feel unwell again. Unfortunately, for me at least, my bloods have never showed the true picture. I had a positive ANA, ENA and Anti-RO in October 2013 and my bloods were not positive again until July 2016. So about 2 and 1/2 years of negative bloods in-between. But I had symptoms that whole time. A good rheumy will not just rely on your bloods but listen to you - and you must listen to your body. Good luck.
Thank you for your explanation, I am not the only one who feel all the symptoms all the time. Thank you for all your support. I appreciate it very much
No, you are definitely not the only one. This support group is fantastic. Please ask any questions. There is always someone who can help or just give you much needed encouragement.
I feel for you. My Rheumy took me off plaqunil completely in January after being on it for five years. He thought I was having an allergic reaction to it as I'd developed a rash on my arms and legs and bruising. I'm waiting to see a dermatologist and until I do he won't let me take it. I really didn't appreciate how well this medication was working until I've stopped talking it. I feel like I've stepped back in time to pre diagnosis. If they will let you take them
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