I'm new to the site and received a diagnosis of lupus 6 months ago. It's been a 4-year battle to get to this point even with a diagnosis of discoid lupus 20 years ago, a speckled ANA, and my life being pretty much destroyed over these 4 years as I've deteriorated. I've had endless problems with the three rheumatologists I've seen. The first discounted lupus, the second said I had chronic pain, and my current one has grudgingly agreed to a diagnosis of 'on the lupus spectrum'. I've been prescribed hydroxychoroquine which I've now taken for 6 months and not only have I not got better, but I have developed new symptoms. I've been strongly advised against taking immuno-suppressants, but I still feel that the doctors don't fully believe how bad things are. I have no history of hypochondria or excessive visits to the doctor before this started and every one of the symptoms I've reported (and not previously connected) are on Lupus.org. I am close to the end of my tether - partly because I live alone and find everything harder to manage, and partly because I'm very tired of this continuous begging to be believed. I've requested a change of rheumatologist and would like to be a little more informed before my next appointment. Does anyone have this experience of the hydroxychloroquine not working? If so, what did they try next? One of the reasons I'm being told my lupus is not 'severe' is because I have no problems with my organs.
Sorry for the long post... I'd be very grateful for some advice.
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Joni2011
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Welcome to the LUPUS UK Community Forum. I hope that you find this a helpful place for information and support.
I'm sorry to hear that you've had such a battle to get to your current diagnosis and treatment. It is disappointing to hear that the hydroxychloroquine isn't helping as for many people it is very good. Unfortunately, lupus can be difficulty to treat as it is so different in everyone and not all people respond to certain medications the same. Most people would notice the benefit of this treatment after 3-6 months, although I have heard of people taking 9 or so months to feel the effect - so it isn't impossible that it could still work.
Usually if hydroxychloroquine doesn't help then they would consider trying an immunosuppressant medication. The consultant would need to carefully weigh up the potential risks and benefits of such an approach though.
With regards to your lupus not being considered 'severe' by your consultant - this wording is used by doctors as part of their classification for lupus. It is generally classed as 'mild' if their is no organ involvement, but this doesn't mean that your symptoms can't be severe and have a big impact on your life. One of our members MelanieSloan raised this with some leading UK consultants as part of a research study she is working on and many haven't truly appreciated the impact that a label such as 'mild' can have in undermining someone with lupus - especially if they have had to fight tooth and nail to get a diagnosis in the first place.
If you are seeking a referral to a different rheumatologist then it may be worth asking your GP to refer you to someone with a specialist interest in lupus. If you are in the UK, please feel free to let me know what area you are based in and I can let you know about any lupus specialists we may know of near to you.
Thanks very much for such a quick reply. What you say is very interesting, especially about the mild/severe diagnosis. If I simply hadn't improved with the medication, I might be able to try it for longer, but I have developed more symptoms that I didn't have before and therefore really don't feel it's working. The thought of trying it for longer after being unwell for so long+- is just unbearable, especially if it doesn't work and then I'm back to square one. I have had to stop doing all the things I like, I have worked at home 75% of my time for the last year, I struggle with cooking, shopping, even dressing at times.
I am in Cambridge but the problem is that my initial referral to rheumatology was by a Senior Physiotherapist who thought I had lupus, about 2.5 years ago. The consultant he referred me to was the lupus specialist. She discounted it and because of that, I never fully looked into it and the rheumatologists I've seen since haven't considered it. So, I don't have much faith in her...
Hi joni2011, welcome to the community. Sorry to hear of all the issues that you have experienced with the diagnosis of your condition and the ongoing consultant visits and meds.
Re your current medication being Hydroxychoroline. I was only on that fir 2 weeks, had a bad reaction. Currently on Mycophenolate Mofetil, but being weaned off this immune suppressant, and being transferred onto PROGRAF.
It is difficult to get up every day and fight the Lupus Battle. It is very difficult when you see these Professionals and they don't comprehend how hard it is to do simple tasks, how your life has turned upside down, it becomes very depressing, and especially when you you come home and you wish there was someone there to express how you are feeling and get relief from the stress building up.
As there is no cure that fits all with this condition, it is a hurdle for these cobsultants to deliver the best overall treatment, however, they must take seriously how your condition has impacted on every aspect of your well-being.
I wish you lots of good luck going forward, and fingers & ties crossed that Hydroxychoroline is the med that works for you.
Thanks very much for these kind words. And it's useful to have some knowledge of other medication to discuss at my next appointment. I wish I'd joined this site earlier! x
What symptoms have you developed since starting the the hydroxychloroquine?
Addenbrooke's Hospital in Cambridge is now a LUPUS UK Centre of Excellence led by Dr Frances Hall. If you're not currently under their care then it would probably be best t try and get referred there.
I developed Carpal Tunnel after about 4 months on the meds.
I am being treated at Addenbrookes and would certainly not describe it as a centre of excellence in any respect!
I didn't see Dr Hall, however. I have requested a change of doctor, which they are sorting out, but I don't want to add to my demands asking for a specific doctor. I'm already being treated like a silly woman making a fuss, and I'm not someone who does make a fuss, usually. This has all been the most humiliating experience of my life and it's only my 100% certainty throughout that there is something very wrong that has kept me fighting.
I'm sorry that you have been having a negative experience at the hospital. Have you tried speaking with one of the specialist nurses, such as Sr Jane Hollis about your concerns? This could be helpful?
Thanks for the advice - I will make a note of the name. Right now I don't have the strength (mentally) to talk to anyone new about this. I've seen more different GPs than I can count, more physios than I remember, 3 rheumatologists at Addenbrookes, 1 private one.... I just can't face going through it all again. I've written to the Head of Rheumatology to request a new consultant and I've asked that they have a proper look at my whole history before I see them, which I don't think any of them can have done before. I will see what happens with that.
I'd like to add Paul, that I am not claiming to know the best medication for me at this point. I just feel that if I'm being treated by a doctor who doesn't believe how bad things are (which has been the case up to now), then it's not possible to be sure I'm being given the best drugs for me. What I want is to be believed and treated accordingly and I feel that's everybody's right, especially after so long.
Just a quick update on my long-awaited appointment with new consultant at Addenbrookes. Paul_Howard I had an appointment last week with Dr Frances Hall (who you recommended) and it was a completely different experience from anything I've had before. 1.5 hours and she talked through the whole thing right from the beginning (first time) and was also the first medical professional in 4 years who asked me further questions about all my symptoms rather than just nodding at me like I'm being a nuisance. Going to try new meds so I'm feeling more positive about feeling better as well as having the burden of not being believed lifted. So, thanks for the tip! I haven't been posting much but have been reading lots of posts and fee l a lot more informed generally.
Glad you have seen someone who listened - I am also being treated at Addenbrookes and have mild SLE and a rare hypertrophic lupus of the skin which has been terrible
That is such good news. I'm glad to hear that you had a good appointment and I hope it is the beginning of a positive change. Thank you for letting me know how it went - you've made my day.
That's good to hear! This site does some very valuable work. I was very close to the edge when I first posted on here, but hearing that other people have such similar struggles gave me the strength to keep fighting.
I have been diagnosed with Lupus profundus and been hydroxychloroquine for nearly 10 years. Over that time I’ve had to have a number of additional treatments on top of this because all the drugs have stopped working after a period of time. Currently I’m on 100mg of Dapsone previously I’ve had methotrexate and others. I feel I’m regularly at the Docs for this and that. Unfortunately it’s not a one size fits all and immune suppressants are the only thing that keep my illness manageable.
Steroids worked for a time but again the side affects are awful.
Can I suggest you ask your Rheumatologists why your taking these drugs and how will they help and ask what others they suggest.
I had the same experience with Dr Hall at my first Appt with her, after a bad experience with a rheumatologist who had left me in tears as he was so rude & unhelpful. She is so kind & reassuring so I'm happy that you've found your way to her clinic. Jane Hollis the specialist lupus nurse is lovely too & you can phone her with queries between appts. Best wishes x
Several rheumatologists left me in tears before seeing Dr Hall! She is so good. Thanks for the info about the nurse - it's useful to know the best people to talk to. x
I have no experience with that medication, but I do have experience being extremely ill and living alone. I feel for you and want you to know that you're not the only one. I struggled alone for 2 years, and many days, I felt as if I should be hospitalized because I could not care for myself. I finally found an integrative physician and began implementing his recommendations one at a time, and slowly, VERY SLOWLY, I started getting better. 2 more years later, I can finally live a mostly normal life. Still have to ration my energy, keep stress down, eat healthy and get plenty of rest, though, or I will have flares. However, my flares are shorter and less intense than they used to be. I'm not trying to make this about me, but attempting to give you hope.
I know all about being too exhausted to take the garbage to the curb and leaving it sit until the following week - or even the week after that! I know all about being too sick and in pain or lost in brain fog to do grocery shopping and prepare meals. I also know what it's like to lay in bed feeling so ill you wonder if you might die. So, hang in there my friend, be kind to your body and give it the rest it needs. Do research when you can, let as much go as you can and don't stress over it! Also: ask friends and family for help, and don't be ashamed. There is hope.
It's funny - I had a big mental wobble this weekend. About how hard every single thing is, like cleaning and cooking. And about how long the meds take to work as I initially postponed immunosuppressants because of Covid and now I've started on methotrexate but no improvement as of yet. And everything is made so much harder with the extra isolation and difficulties caused by the pandemic. Been trying really hard today to look at the positive things and then out of the blue I get your message. It is exactly what I needed. A bit of random kindness from a stranger who not only understands lupus but dealing with it alone as well. Thank you! xxx
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