I am new to Health chats, I have Lupus was diagnosed at least 6 years ago and have been taking Hydroxychloroquine since.
I have been experiencing joint pains but my rheumatologist has dismissed these are linked to my Lupus.
I do feel tired regularly and recently have stopped taking my meds because of fear of side affects on my vision.
Not sure what to do my appointments to see a specialist take up to 2 years I am contemplating seeing a private specialist can anyone recommend one please.
I live in the Northwest so someone near me would be suitable.
Is it careless of me to stop my meds I met a friend who has Lupus and doesn't take any meds that is what swayed me but I have been struggling with knee pain.
Can anyone advise please. xx
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Sensory123
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I am so sorry that you are having to wait so long before you can see your NHS specialist and I think your idea of seeking private advice would be good. Sorry I can't support you with that as I am the other end of the country.
Re- hydroxychloroquine. I think it might be unwise to follow your friend's lead without professional advice. Hydroxychloroquine has got an large body of evidence to support its use in Lupus, both in controlling the disease and in protecting the body from some of the hidden risks, e.g cardiovascular. We all worry about the risks of retinal damage but these are relatively small. I have been taking 400mg for 5 years at well above the recommended dose of no more than 5mg per kg, but all attempts to reduce it have resulted in significant flares. I will be having my eyes tested this year by a specialist at the hospital as taking higher doses for longer increases my risk. Has an eye test been offered to you, if not is it possible to ask the hospital to arrange this. The eye test is more specific than any you can get at the opticians.
My aim is to reduce the dose but I know that I can only do this, when more potent drugs are introduced, which is the current plan.
You don't mention your age. I get different joint pains- some are age related and some Lupus. My initial presentation was inflammatory arthritis but this is less significant now - other manifestations have taken over !! There are quite a few members for whom joint pain is a significant feature of their disease. Seeking a second opinion might help to clarify the source of your pain. Have you looked at the Lupus UK site re joint pain?
Thank you so much, everything you have mentioned has reassured me to go back on my meds to be honest the pains started after I stopped taking the meds.
I have been to the hospital because I insisted due to having blurred vision etc but luckily everything is okay and they will call me back.
I am 52 yrs old so it's hard to guess am I just getting old or are the leg, neck and head pains linked to my Lupus.
I have only just realised about Lupus Uk will have a look.
Your very welome. I am pleased that you have gone back on the HYD. Even when I was really struggling with Azathioprine , e.g. vomitting, I sought advice from rhuematology before finally stopping it. Versus Arthritis has a great site on the different meds - my Rhuematologist often refers me there to check out a potential new drug. The Lupus Encyclopedia is also a great source of information. It would be good to get the source of your joint pain sorted (it's interesting that they became worse after stopping the HYX). x
I agree with others, definitely back on the hydroxy meds. I am 74 years old and was diagnosed with Lupus (SLE) when I was 30. I have been more or less flare free for 15 years, then 18 months ago, suddenly a massive flare. High dose of prednisolone for 8 months and hydroxy, now just 400 mg hydroxy per day, seems to be keeping things fairly quiet.🤞🤞Unfortunately Lupus has a mind of its own, it affects your body in so many different ways.
Does your rheumatology dept have specialist Lupus nurses? If so you can contact them for advice, this can also get you to see consultant quicker. Good luck.
Hi, another NorthWester! I am in the same boat kind of.. I’ve been having some weird eye problems and it’s made me really nervous about taking the hydroxy. But I think as long as we are checked annually at the opticians we will be fine. I need to book mine in at the moment and I’m sure they’ll put my mind at rest. Whereabouts are you? Which hospital you at?
Hi, I’ve been on hydroxy for about 10 years 400mg, my optician told me the risk is minimal and as long as I get my eyes checked every year I should be ok. Obviously if you feel something is wrong get it checked sooner. I get a yearly check with an ophthalmologist at the hospital. It takes months for hydroxy to work, did you inform your Rheumy about coming off it?
Agree with the others, you feel as if it’s not doing any good but it’s when you do come off it, symptoms start creeping up again. I’ve not long seen my Rheumy and she was reluctant to reduce my dosage as she said it’s keeping it at bay especially the rashes I get.
hi I live in the north west and have found our appts have been very quick, though don’t know if this is due to a very recent diagnosis. I always email the PA to the consultant about follow up appts to see when they are. I also phone the hospital Matron (contacted through the hospital switchboard) if I have any concerns or need to speed things up. Have also used PALS at the hospital who are very helpful.
Maybe ask your GP to refer you to a specialist centre for Lupus, not sure where you live, but there’s one in Manchester
hi it’s my husband who has Mixed connective tissues disorder, we’re in Wigan and he’s under 4 different consultants (Rheum, physician, gastro, cardio) Since he became very ill in aug 24, hrs had approx 20 appts (lost count!) CTs of every organ possible, 2 gastroscopies, angiogram, x rays of joints, ECG, ECHO, bloods every 2 weeks.. Also referred to dietician and physio (physio appt taking its time) also seen by haematology and hepatology in this time. We even had an appt with physician which was called a ‘good news’ appt to let him know his second chest CT was ok!
We are really happy with his treatment, tho, as a nurse, I’d rather go to specialist centre in Manchester but husband happy with his care in Wigan
Thank you I wasn't aware of the specialist centres will get in touch with the GP.
I have an appointment now because spoke with the Lupus nurse who I had no idea existed I think I need to be more proactive this forum is great I have learnt a lot.
I am just outside Leeds and I see Mr Das or his team at the LGI. I see them about once a year but I can ring the rheumatology nurse number and someone will either get back to me or will arrange an appointment. This is a good system and I thought most rheumatology dept did that. Once you are diagnosed and have seen a rheumatologist you are there for life. I take hydroxycholqquine and have my eyes tested at the hospital every 2 years. Different to a normal eye test because they scan and take pictures.of tour eyes. This is to make sure the medication isn't affecting your eyes I had to stop hydroxy when I had a knee replacement and I could tell I needed to go back onto it. I ha spinal stenosis and other joint and muscle problems so I have requested an app to see the rheumatologist and it came through a few weeks ago for March. I'm hoping they can help with other meds or at least give me advice before I agree to back surgery. I would say go back on hydeoxy and ring the rheumatology dept for an appointment.
Just to support the other comments. I have been on hydroxy in varying doses for 17 years and the key thing is an annual eye test. Before they were available in specialist units, my local optician has kept them going including visual fields. All the best.
I had a full testing of my eyes, scans, field tests etc before I started hydroxy some 20 years ago. I was told they would use this as a comparison if problems came up. I was on 400mg for about 15 of those years until my rheumatologist and the eye doctor agreed I should take 400mg/200mg alternate days.
It is not because of eye problems, just an awareness that it has been a long time and perhaps see how I get along. I also take 5mg prednisolone daily.
Last week I was at the eye clinic, (I go for twice yearly check ups) and was asked if I thought I could manage just on 200mg daily. I agreed to give it a try.
I don't know if it is my imagination or really happening, but I am back to having migraines and bad joint and muscle pain and the dreaded Raynauds.
My next yearly rheumy appt is in July and I am not sure whether to ask for an emergency clinic appt before then. If I am told this is just side effects from weaning off the hydroxy and I will get used to it, it seems a bit pointless, on the other hand, I don't want to come over as a hypochondriac and waste everyones' time.
The eye clinic assures me there is nothing wrong and he was surprised I had been taking them for so many years without problems. I understand there can be a risk to the retina but that hasn't applied to me fortunately and he says it is very rare. My years of taking it just confirms it.
Do I persevere and just continue with 200mg and consider myself lucky not to have eye problem but there is still a risk, or should I ask to go back on the higher dose? I am 71 years old and only wear glasses to read.
Sorry Sensory123 for hijacking your post but it seems we have much the same dilemma. As for going private, I say yes, if you can afford it. It may even be the same rheumy you have on the NHS! You can be referred back to the NHS afterwards, it just means you have jumped the queue a bit. Alternatively you could ask the lupus nurse connected to your clinic and get advice and maybe an appointment sooner.
Don't apologise I know where you are coming from, I have so many headaches and my memory is so bad I had to check the notes to see what I am on and how long apparently it's been 8 years not 5.
I have an appointment in a few weeks and I will go armed with questions.
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