I’m a 61 year old lady who after 4 years of symptoms has been diagnosed with SLE and Raynauds syndrome. The last eight months have been particularly difficult due to the fact that my mobility is not as good as it was, this has been getting me down as I’m very independent. Fortunately I do have great support from my husband.
I’m relieved to have been diagnosed but reading all the information that I’ve been given has also made me feel terrified. I have been prescribed Hydroxychloraquine which I’ve been taking for 2 weeks, which was when I was diagnosed. I haven’t seen any improvement yet but on a positive note I’ve not had any side effects.
I live in South Wales so would like to find out if there are any help groups near to me. I would also be grateful for any online support from the group.
Thank you.
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Halcyon-Days
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hi and welcome to the group, we are a very friendly bunch so anything you need information on please ask. I have SLE and Sjogens , I was diagnosed 5 years ago and like you I was terrified . Hydroxy takes about 6-8 weeks I think to start working, although I had to stop taking it as it effected my eyes so I’m now on Methotrexate .
Make sure you have eye tests every year . I would suggest just reading a little bit of the information at a time regarding SLE , then you will process it and then move on to some more information.
It took me a good year to accept my diagnosis and also accept my new life, I had to give up work. It was very hard as I was used to being extremely active, but eventually I did accept it and I love my new life, I moved to the country , we have 2 little dogs and I like you also have a very supportive husband .
Thank you so much for the lovely welcome. I’m already feeling uplifted by all the positive messages.
I think you’re so right about digesting the information in small doses, it’s overwhelming otherwise. I am trying to do that now.
I like have had to give up work, it’s been eight months now and I’m still finding it difficult. I’m trying to focus on keeping active and getting myself feeling better. thankfully now I do at least know what I’m dealing with.
I’m so pleased that life is good for you now. What could be nicer than living in the country with two little dogs. I used to be a veterinary nurse and I know how important peoples pets are to them.
lots of love and thanks again for the lovely welcome
Hi and welcome. Unfortunately there are no magic wands or quick fixes . As SV said hcq takes many weeks to start to work and up to 6 months for full effect.even then you may need another drug....its all trial and error I'm afraid until they find the combo that works for you. Yearly eye tests are essential to check for a rare complication of hcq called retinal toxicity..you should have one before you start taking it. your opticians can do an OCT test but i think its the hospital that do the Cambridge colour test. With sle and hcq can come photosensitivity so stay out of the sun and cover up with clothing,hat,sunglasses and factor 50 all year. Acceptance is a huge part and in time you will be able to adjust ,work out your triggers and see any patterns. Learning to pace yourself is a must....Google the spoon theory and get plenty of sleep. Stress is a known major trigger so keep it minimal.It does all seem overwhelming at first but it is manageable with compromises and adjustments. We are all affected differently too so whilst you will be able to identify with some you won't with others. Most of us have a symptoms list as long as your arm....me inc lol 🙄
I was diagnosed 4 years ago ( after a 5 year battle) with sle,lupus nephritis and sjogrens. I take hcq,mycophenolate and prednisone.
Thank you so much for taking the time not just to reply but also share so much information. My Rheumatologist is a lovely man but didn’t really have the time to sit and explain much to me. Taking it all in would probably have been impossible anyway.
I’m very pleased to have found this site and do already feel much more positive. I’m looking forward to getting to know you all.
I do hope things are well controlled for you and that you’re managing these complex conditions.
Hi Jill. I can't work now either.i saw my rheumy on tues and it is difficult to take it all in at the time.i always ask to be copied into letters then you can remind yourself if necessary in your own time. After 3 stable years this one has been a hard one. My Lupus affects my lungs and I suffer bouts of pleurisy ....hence the steroids. There are a few of us here who have dogs and cats which are fantastic for mental health. I have 2 spaniels.
Hello and welcome. It is well worth joining Lupus UK who will point you in the direction of a local support group and local contacts who you can ring and talk about what you are going through. There is a Cardiff Support Group and one in Pembrokeshire. Good luck.
Thank you Cwmtaf for taking time to reply, I am definitely going to join lupus uk and hopefully find a support group. I’m in Swansea so either of those isn’t far from me… I’m delighted to have found this group, I’m already feeling more positive so thanks again. Jill 😀
Yes I agree join Lupus UK. I am in the Cardiff group although I live in Wiltshire (there is no other group nearer me). We zoom once a month and often have a subject or speaker as a theme. The ones in Wales also meet face to face every so often. We get good advice based on a sound medical basis and last month we got to put questions to a Rheumatologist from Kings College, London who joined us on zoom and was an excellent speaker. If you join they'll put you in touch with Dalila, who is lovely, on our whatsapp group. You can also ask advice via the whatsapp group too. Hopefully you'll join us soon👍🙂.
it’s very lovely to hear from you and to know that there is support out there. I’m definitely going to join lupus uk and hopefully the whatsapp group too. The zoom meeting sound like a great help, sadly I’m a bit of a dinosaur so doing that may just be a bit beyond my capabilities 😩
Kindest regards and thanks again for the warm welcome Jill 😀
Be lovely to see you. We have new ones join regularly. Some with lupus, some not diagnosed yet, some with other disorders and lupus. Its ok you get a link via email and it connects automatically. With this site and lupus uk and other autoimmune associations, you are not alone. I agree about hydroxychloroquine, it took nearly six months for me to see any benefits. You have to give it many months. It may be the only benefit you see is not getting any worse, therefore stabilising your symptoms.
Hello and welcome. You will find all the support you need on this safe and friendly site. Hydroxychloroquine takes 6-12 weeks before you notice any difference. I am 61 too and live in South Wales. I have never had a support group near me which is a shame. I remember 13 years ago when I was diagnosed being handed an Arc leaflet and told I must take a drug that coukd cause blindness. My husband and I sat and cried, firstly with relief that I wasn’t going mad with the range of issues I had but it had a name and secondly it was overwhelming. I joined Lupus UK and ordered some books to help me get a better understanding. Everyone is affected differently but we all have similarities. If you have a good Rheumatologist it is a huge advantage and you will find comfort and laughter here xx
Thank you for the lovely, welcoming reply. I can tell by your message that you’re diagnosis and response to it is exactly what we are going through now…. My husband and I responded in the exact same way.
I hope that in the 13 years since your diagnosis that you have found a treatment that works well for you.
My rheumatologist was very nice but also very bus. I didn’t get a chance to ask many questions so finding this site has been a godsend. I’m going to join lupus uk which I’m sure will have lots of information.
Lovely to meet you Jill. Life can be stressful, demoralising and painful with Lupus but you can come to this safe space and vent, laugh, cry and you will always find support and giggles along the way. Take your time to find what works for you. It is a marathon not a sprint. On the positive side you are now a member of a club that has the nicest, kindest people in it. Be kind to yourself. Julia xx
oh yes I indentify with that feeling. One day the pain is here then it’s there, then the rashes, headaches, ulcers uuggh. Which part of South Wales do you live if you don’t mind me asking? I live in Tredegar. Sadly I have had so many Rheumatologists and every time my diagnosis changes. My current one who I have had for three years I have never seen. He prescribes over the phone. I am afraid in Wales we do not have a centre of excellence that they have elsewhere. Xx
I have already read that we are very lacking in resources here in wales… I live just outside Swansea which I guess is really West Wales, we’ve only been here for the last eight months… but I was born and bred in South Wales near Llantrisant.
I know Tredegar, it’s got the iconic clock in the town. Have you always lived there?
That’s awful that the rheumatologist hasn’t been seeing you. Things have changed so dramatically with hospitals and GP surgeries since Covid. It’s almost impossible to see anyone these days. Xx
Why a beautiful place to live, close to so many beautiful beaches. Wendy has a group in Pembrokeshire so maybe that would be good for you. Yes the town clock and the park are sadly only a few of the remnants of a once thriving, valley’s town. The high street is run down and there is little reason to shop there.There are small signs of hope with regeneration of the Miners Institute, the very first National health office and the TA . I grew up in Tredegar but moved to Angle for a year, then Roch for another year before returning and settling in Tredegar again. Xx
Oh that’s such an awful shame about the town… so many Valleys towns are suffering the same fate. I do hope they manage to regenerate it. It’s vitally important to the people who live there…. I know Roch and Angle very well too, we holidayed in Newgale for years when my son was growing up as he was a keen surfer. The campsite was directly opposite the beach which was amazing. It’s a very beautiful part of wales, isn’t it.! ❤️
I absolutely loved Angle. I got a job managing an alternative to secure unit in Llandriddion near St David’s. The best commute to work ever. I love Newgate beach too, my favourite is Freshwater West, followed by Barafundle. Had I not became sick we would have settled there. I need a Lotto win and I will be packing my bags 🤣 xxx
Yes exactly, some people never get to live in paradise. Look after yourself lovely and please get your eyes tested regularly with Hydroxychloroquine xx
Hi Halcyon-DaysWelcome to this amazing group. I was diagnosed in August 2020 during the covid lockdown after many years of pain. I was also very frightened of the diagnosis but this group has help me so much to understand what is going on. The people on this forum are like an extended family.
Hydroxychloroquine takes a while before it starts to work so just hold on in there.
welcome! You couldn’t have come to a better group than this one. I can’t add any more advice than you’ve already been given.
I’m down in the east of England region, got diagnosed in 2016 with SLE and sjogrens and have since had other conditions added. It is quite scary when you first get your diagnosis, I’d never even heard of lupus! But over time with help from lupus uk and the forum I’ve learnt a great deal. We all suffer in various ways, at the moment my main problem is GP and rheumatologist saying well, you are getting older! I’m only 67 and have days when I like to think I’m still 21. 😁
Thank you Chris for replying to my post. It’s so reassuring to know that there are others out there who understand the difficulties that come with these complex Autoimmune Disease’s
There is so much amazing information linked to this site, all I need to do now is navigate my way around. I am a bit of a dinosaur 😂
Kindest regards and thanks again for the warm welcome Jill
I also have both. Hydroxy can take a good while to kick in, sometimes months, so don't be disheartened. As for the Raynaud's, I recommend getting silver lined gloves, they are the only gloves that stop my fingers going completely numb (they aren't cheap, but I find them really helpful) healthandcare.co.uk/raynaud... I also wear 2 pairs of socks, normal socks and fleece socks on top to help (I think you can also buy silver socks somewhere but I'm too tight). There is also medication for Raynaud's which can help (calcium channel blockers) if it's really affecting you but they can cause your blood pressure to drop so I don't take them any longer for that reason (the amount of times I've ended up in rose bushes etc due to this is unbelievable!). Most of all, these conditions, although an absolute bugger, can be managed with the right medications and treatments. Good luck.
thank you for the lovely message… I’ll definitely look into the gloves as my hands are really badly affected. My feet don’t get cold or numb but are incredibly painful. Sometimes to the point that it’s difficult to walk. It almost feels like somethings going to snap😳
I think I’ll give the calcium Channel blockers a miss, I’m giddy enough as it is😂 I’d definitely end up in the bushes😱 but thank you anyway..
it’s very lovely to be part of this site. I’m only just finding my way around and have been panicking incase I haven’t replied to anyone.
Lovely to be in touch with you and thanks again Jill xx
thank you and sorry it’s taken me so long to reply, you slipped through the net😩 I’m only just finding my way around the site.
It’s very reassuring to find others who understand what’s going on with you, it’s been pretty scary. One thing I do realise is that I’m a lot better off than some.
I was diagnosed with SLE Lupus June 2022 & have still not come to terms with it! I absolutely hate it - it’s the bane of my life which affects so many aspects of all I do. I plan what I’m going to do for the day, then evil Lupus throws a spanner in the works…
I’m 57++….., retired Paramedic, Person-Centred Counsellor/Psychotherapist, former Dental Nurse. Did my work experience in a Veterinary Practice as that was my chosen career but life had other plans for me …..
Being a sporty type, constantly active, gardener & outdoorsy person, (despite having several spinal & other orthopaedic problems), this Lupus malarkey has completely ruined my life. I coped far better when I had a gynae Sarcoma a few years ago!
Thus far I’ve had no success at all with 3 different medications Rheumatology have given me -
Anaphylaxis to Depo-Medrone Steroid injection whilst in consulting room at Rheumatology Hospital, 2 lots of Adrenaline, 999 🚑 + 🏥.
Severe reaction & several side effects to Hydroxychloroquine - instructed by Rheumatology to stop immediately.
Extreme, detrimental reaction & several side effects to Prednisolone after only a few days - It was supposed to be a 14 day trial but Rheumatology stopped it (without tapering) after 10.
Being newly diagnosed, I hope you have better luck than me with any meds you’re given, some on here seem to have much relief and are able to tolerate them.
I’ve gleaned much information from the marvellous Lupus UK but try to avoid battering my brain with too much in-depth reading about it.
I battle PTSD, depression & anxiety anyway & am far better at helping others than I am myself!
thank you for the lovely reply and please forgive my delay in replying. I’m only just able to navigate my way around the site, I don’t do any social networking and I’m also a bit of dinosaur 😂😩
One thing from reading the posts makes me realise that I’m not half as bad as many others are. It’s definitely a struggle and does pull you down. I feel desperately worried about what the future holds. I know this is a bad thing to do but your mind takes over😣 being unable to work has been a blow, mentally and financially which again brings its own worries.
I’m very fortunate that I have support from my husband, but I’m also furiously independent so that sometimes clashes😂
This site has been fab for info, but most importantly connecting me with people (like you) who understand. So thanks again for that😘
I do hope things improve for you soon and that you find a treatment that will give you relief x
I’m Jill by the way, you may know this already but I didn’t know if my reply to others are visible to all? Xx
I too avoid social media & am still learning my way around this site. I can see all the other replies you’ve had, so I guess (unless there’s something in ‘settings,’ that’s the norm).
Being ultra independent also, despite having a supportive hubby, I get so frustrated with this awful, debilitating Lupus & constant Raynaud’s - my husband says I have no circulation! He’s 62 with Rheumatoid Arthritis for which he has lots of meds & IV infusions of Rituximab. He was also diagnosed with Coeliac last year - up until 6 years ago he’d never been ill & has only had one day sick in 22 years & one week in 46 years of working! He works 16 hours part-time now after becoming semi-retired 3 years ago. Both RA & Coeliac are autoimmune diseases & not age related at all. We now both go to the same Rheumatology Hospital, lol!!
I agree it is a worry for the future but hope you have some ok days along the way.
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Ive just been diagnosed with mild Lupus! Im currently feeling confused! Ive been in a lot of pain for 2yrs!!
Newly Diagnosed
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