Can I ask you for some advice please. I started hydroxychloroquine last week, had 5 days with a really upset tummy ( the nurse warned me about this) fortunately the side affects have settled down quickly and I'm tolerating the medication now.
Unfortunately, I still feel so rubbish. The last couple of days I've just slept and slept, my hands are very painful and swollen fingers. The rest of my body aching and I'm stuff. I know the hydroxychloroquine takes several weeks to work.
I'm wondering if there can have anything else I can have? Waiting for rheumatology nurse to call me back today.
I confused because I've read first line of treatment hydroxy, then read first line is steroids?
Am I right that hydroxy treats the diagnosis ( uctd for me) and is long term. Steroids treat the symptoms and are a quick temporary fix in a flare not long term?
Thank you X
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BonnyB
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Hydroxchloroquine takes at least 8 weeks to start to work and 6 months to get full effect.i had a bad head every day for a month when I started hydroxchloroquine. Steroids keep the inflammation under control until the hydroxchloroquine kicks in .Often a low maintenance dose of steroids goes along side the hydroxchloroquine and maybe at some point a drug like mmf or methotrexate. I'm on hydroxchloroquine, steroids and mmf x
So sorry for late response. I've been out of it. Thank you very much.I went out on Monday in the sunshine for a long walk with my friend. It was cold but bright sunshine. I'm now thinking it might be the sun with me starting on Hydroxychloroquine? I asked my nurse about this, she said it will just cause skin irritation from the sun. I tried to explain that I've seen many posts on here saying photosensitivity causes disease flare with joints, etc.
Then doubt myself that I'm getting mixed up.
Suppose I am just trying to find out what set me off on Monday night and the only thing I've done differently ( been stuck in house for weeks really) is a lovely gentle walk for 2 hours on a beautiful day all wrapped up to keep warm in hat, gloves etc
Thanks so much for replying to me, I really do appreciate it X
Dont worry about it.im photosensitive people with lupus often are. If I go out in the sun I get a bad head,fatigue and my joints ache alot more.after a couple of days indoors it eases.factor 50 + wide brimmed hats and cover up is required all year.also be wary of fluorescent lights and windows.this is a great place to ask if you want to fact check xx
Thank you, pretty sure I've seen some of your posts about it now I have my brain back in focus😆 .this isn't something I've noticed in the past. However, I'm not a sun person really, much prefer the shade. So if it is photosensitivity it could be due to starting on Hydroxychloroquine. Thanks again you 💕
The UV rays cause skin and systemic symptoms. The nurse must have been referring to the medication and sun or something.
Wear sunscreen even in the winter. You may have worsened from the two hour walk.
Did your rheumatologist see your fingers when they were swollen? I am curious what others say. But it seems many are put on an immunosuppressant if there is clearly inflammation in the joints.
Hi Bonny. Usually if you are in a flare and need immediate relief, physicians will give you steroids. Since hydroxychloroquine (HCQ) takes about a month or so to have any effect with maximum effects gained after about 6 months, some will take steroids for immediate effect while waiting for HCQ to kick in. Taking a short course of steroids while waiting for another immune modulator/suppressant to work is called “bridging” in medical terminology.
If you were only given HCQ then your physician likely felt your current state did not warrant steroids. If you find that your symptoms are limiting your functionality to a severe degree then I would reach out to your physician to discuss steroids until HCQ starts working. For me, HCQ seemed to make things worse for about a month and then I noticed improvement after about 3 months - hair, skin, joint problems improved first and then tiny things improved after about 6 months.
Hope this information helps and you find relief soon!!! ❤️ xx
It does, thank you very much. I'm still trying to work out what my triggers are and how to get through them. Thanks so much X
Hi Bonny, my diagnosis on paper is uctd as fortunately I'm not symptomatic at the moment but my anti dna is high and indicative of lupus. I have been on hydroxychloroquine since end of 2018 and have not experienced any side effects, the aim of taking it is to try and prevent organ damage. A minor beed on the brain was found early in 2017 and neurologist subsequently advised was a venous anomaly... The Lupus was found on testing to see if it was the cause and came back positive. I hope you start feeling better soon... But do contact your GP or consultant re course of steroids.
Thank you for replying. I have positive speckled ANA. As far as I know nothing else in blood work. I had eye test at opticians before I started hydroxychloroquine. He said my eyes were dry( I've noticed this happens when I have other symptoms) suggested some eye drops and they have really helped.
Pleased to hear you've had no side effects from Hydroxychloroquine. Thanks again X
You might want to tell your rheumatologist the level of your fatigue. Particularly with UCTD disease activity can be difficult to assess. They really don’t like to use steroids unless there is more life-threatening stuff. But sometimes rheumatologists will allow for short courses of prednisone. Be really clear about your functioning level.
Hope you feel better soon. The fatigue is dreadful, I know.
Thank you. I will do that. I see the nurse in 8 weeks. I've kept a diary. I feel tired, aching all, swollen fingers all of the time but I'm able to cope most of the time then BANG it all gets much worse for a few days, then settles back to my normal( which isn't everyone else's normal that I know) I can tell some family, friends are losing patience with me- finding comments like" I think you're run down" ..." You're stuck in a rut" etc ...this isn't helpful and certainly not helping me. I've given up trying to explain now X
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