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So unhappy!

So after being told I had lupus, telling my employer and getting sacked over it, a 2nd rheumatologist said it was undifferentiated connective tissue disease. Having read up on it, it's no life threatening in the way lupus is. I've steadily declined in the months since my initial diagnosis, had one infection after another too. It's with the additional problems my diagnosis was downgraded which makes little sense to me. Ana is high, anti dsdna positive, on top of positive tests for APS. I have most of the symptoms of lupus except the malar rash. I was prescribed hydroxychloroquine which has done nothing for me except upset my stomach so I don't see the point. I persevered because I had hoped it would improve quality of life and I was aware it could prevent the disease damaging my organs etc. If it's undifferentiated connective tissue disease then there is no risk to my organs. After being unable to enjoy the summer holidays with my kids, spent most of today in bed, being in agony no matter what pain relief I try I've decided to quit the hydroxychloroquine. What's the point in risking my eyesight too for a drug that is useless when there is no risk of getting more involvement than I have?

I officially give up!

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Please don’t give up. It’s very confusing and distressing when you get your head around (or do our best to) one diagnosis, only to be told by another doctor it’s sonething different. Unfortunately, it’s very common with lupus and the related connective tissue diseases. Which rheumy do you feel is correct? Can you go back to the first one? Some people get told it’s UCTD if their bloods don’t show indicators of lupus (despite having many symptoms and being very unwell) but yours seem to so definitely worth clarifying.

The most important thing is that you’re still feeling so unwell, in pain and can’t be the mother you want to be so you need help, support and treatment regardless of the doctors current difficulty or disagreement in agreeing the name.

Have you only been on the hydroxy for 2 months? It really does take 3 months for many of us and the tummy side effects often get better and it is a great drug for so many. It has been proven to reduce the chance of the disease progression and, although the eye damage warnings are concerning, that is mainly in those who have taken high doses for many years.

Have you got helpful GPs who you can discuss this with? Have you been prescribed steroids at all?

Don’t give up, the eventual diagnosis and the right treatment can take awhile but you sometimes need to push to get there (and the last thing you feel like is pushing when you feel rotten 🙁).

X

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That's true, it's just a fight I don't have the energy for. No one has bothered explaining anything. Last rheumatologist also tested for Behcets, I'm assuming I'll only find out results if it shows something up, however I Googled what was on the blood form and I think she got her hla numbers confused! I'm not bothered what my label is but there's a big difference in long term issues. If it's uctd then there's little chance of having the kidney issues associated with lupus. I'm at 3 months now with hydroxychloroquine. I thought initially it had some effect but as time goes on I think the difference in fatigue levels was actually more a result of losing my job, and my studies alongside it.

I'm pretty good at plodding on and have been learning to pace myself but when I have several areas of intense pain it gets the better of me.

I've got a long history of neumonia, bronchitis, chest infections. I think this needs to be taken into account too, but nope! Feel like I'm just being left to get on with it. I only have steroids when my chest is bad. Thank you for your reply, sometimes you just need to hear from someone who understands xx

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Hugs! Hugs! First line could be my story...but my Rheumy used the positive dsDNA as one of the diagnostic criteria for SLE (there is only one approved rheumatologists' guideline for SLE in the UK, and the criteria for diagnosis in it have to be used: academic.oup.com/rheumatolo... - Table 4).

Have a look, if you think you match, take the Table to your GP and ask for a referral to a different Rheumy, and about hydroxychloroquine.

Don't suffer in silence, if you have a look through posts, you'll find diagnosis is a journey rather than a destination, sadly. Be strong, and be persistent ! mo xxx 😗

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Forgot to say that 4 from 11 criteria is a SLE diagnosis. xxx

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Thank you, I'll check it out xx

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I have 6 from the list x

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I think the issue with dx was to do with c3 and c4 (?) being ok. Dsdna was 24.5. Ana was something/640 and I know antiphosphilipid was abnormal (it's just been repeated) and history of miscarriages until I was advised to take aspirin as soon as positive which I did and went on to have 2 more successfully. No one ever followed this up. I've also had numerous suspected clots but never confirmed. X

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If you are confirmed to have APS, (also known as Hughes Syndrome or "sticky blood" ,there is an excellent forum here on Health Unlocked.

ghic.world/

healthunlocked.com/hughes-s...

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Please it’s not the badge, it’s the treatment. Go back and discuss with your GP. Write all your concerns down and hand them over. Best wishes Kevin

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Maybe I should try, just feeling so defeated at the minute x

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Hi Cathy. It’s not easy, we all support each other on HealthUnlocked and we are all here for you. Kevin

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Thank you. Means a lot xx

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Been thinking maybe I shouldn't be here, feeling like an imposter now x

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This is your forum. Lets help each other. It is really good to talk. Kevin

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You’re definitely not an imposter and this difficult time is probably when you’ll need support most. Remember that so many of us have been in your shoes with delays in diagnosis and collecting misdiagnoses along the way.

There are lots of people on here with a UCTD diagnosis and it’s no less of an important or real disease than lupus (although your blood results do seem more suggestive of lupus). Low C3 and C4 are only one of the possible measures, you certainly don’t need them for a diagnosis. Did you have your total complement measured? It will be written as CH100 or CH50 on your results depending on the lab. Sometimes people with lots of previous infections like you have can be low in this overall measure but have normal C3 and C4 as C3 and C4 are only 2 of the possible ones that can be low out of C1 to C9 (C1 to C4 most often in lupus) but routine tests only usually measure C3/4 so you might have to request it.

Hopefully you’ll find a dr (or several!) to help you put your own autoimmune puzzle together and find out what you need to get much better.

I always used to get a worse flare in the summer holidays when my children were younger, partly the sun I think but also the added stress (although lovely at times too 🙂) of having to occupy them and then the guilt of having to feel I’m letting them down by being in bed or pain etc. I’m trying not to feel guilt anymore - a counsellor friend said to me guilt is only a useful emotion if it’s about something you did wrong and can change/ make amends for. It’s not our fault we’re ill, we do our best for our children even under extremely difficult circumstances, we can’t change the fact we have a rubbish disease. The only thing we can influence is getting the drugs right, learning from each other and searching until we find the right drs to help - then lots of people have mostly very normal happy lives and I so hope you do too.

There is no harm in writing to the consultants. I have written to drs asking them to explain their reasoning for a certain diagnosis/ changing of a diagnosis etc. It might be worth asking them to put their reasons in writing for changing your diagnosis and why they think differently to rheumy 1? You could attach the list Eekt sent with the results/ symptoms highlighted you think you fulfill (I’d maybe say ‘think’ rather than ‘know’ so they feel in charge!) and say you are confused by the UCTD diagnosis because you think it looks like you might fulfil many of the serological (blood) criteria and symptoms.

Say you still feel ill and ask if they could please help you get better. Nothing to lose!

X

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No I didn't have the full measure you mention regarding c1-c9. When you've written to consultants have they replied? Xx

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Yes, in fact it was so successful and made me feel much more empowered to question things that I regularly write now to clarify points or question things either they or I haven’t fully understood. The neurologist I saw (who I was then told by 2 rheumys had misdiagnosed) admitted his understanding of lupus was poor - although I did then tactfully point out that he should have said that rather than making up a diagnosis without understanding the primary disease 🙄. My letter telling him the science of why I thought the rheumys were right and he was wrong made him then book an appointment for me with a neurologist colleague who knew (a little!) more about lupus. My GP also wrote to him requesting they do some of the tests they’d forgotten.

I also wrote to an immunologist (who was investigating my low complement) to ask to clarify a couple of points because it differed from what another immunologist has said. The biggest thing I’ve realised the more I increase my knowledge is that it’s a very tricky area of medicine and there is a lot of guesswork - hopefully informed but certainly not always and that some drs will state their opinion very confidently but it doesn’t always mean they know about lupus or are right.

I used to contact my rheumy through his secretary but she is very inefficient, would take a week or more to respond and then not pass on the message accurately. He gave me his email and responds very quickly - usually within a few minutes if he’s not with a patient, although now I’m a lot better I’m trying not to bother him too often but if you can get the rheumatologist’s email, it’s often just their full name (if it’s not too common a name) with NHS.net at the end. It is sometimes easier for them to send a quick email clarifying things then write a proper letter.

It is possible that they haven’t really thought about it or the effect on you. They may see lupus and UCTD as fairly interchangeable and not be aware of all the questions it’s made you ask but they may well be able to explain and reassure and offer more help.

X

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How right you are Kevin !!!

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My Rheumy told me it didn’t matter if I had mixed connective tissue disease or full blown sle, the treatment was the same. At least she treats it the same

I don’t know what I have, I have the blood rna etc and the rashes and ulcers and titers etc

But I know to be “official” it is her label not mine

I know I feel sick and run down and achy and puking. I had to stop the planquenil after 6 months due to a problem in my eye.. I only know that if I’m one of the “milder” cases with my unexplained joint swelling at feet and fingers, I CANNOT imagine what my brother and sisters here must be going through for years

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I'm the same. If my symptoms are mild I do not know how people cope with worse! I just have the feeling there is more wrong - pain in my trunk - maybe there are joints there that I'm clueless about but the rib, chest, shoulder blade, kidney area pain is getting me down. What do you take now? What happened with your eye? Xx

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My eye has a blind spot in it. I still get them checked every 6 months I was stopped on planqunil and put on azathiz-something and eventually given methotrexate bc I have terrible swelling in my hands and fingers unrelated to my Raynaud’s disease

I also have Sjogrens, so that might play into the eye problems. I’m getting my eye lids tucked in October which should help my vision ( and make me look younger!!!!) she put drops in to see what my lids would look like, after. Omg high school eyes. I could see better!

Back to the lupus: I have been really run down lately but I know I haven’t been eating properly and I’m not excerising due to fatigue so that doesn’t help

It hit me, duh the meds lower my immune system so I’m more likely to fall to virus etc. I’ve got a bad tooth or two that I’ve had to wait for the oral surgeon! No wonder I’m dragging !! I’m so careful to wash hands and stay away from people but I can’t avoid heat, sweating, or this tooth.

Back to bed🤧

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I had a strange ribcage pain - possible cartilage inflammation, didn't know I had cartilage there...! xxx

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The Rib cage has sooo many muscles that are tight and attached to it. This is a huge trigger spot for Fibromyalgia patients . Just wanted you to know this area is killer for me. I have SLE Super ( high ANa ) and A veteran Fibromyalgia Gal with bad Thyroid and Degenerate Discs . It makes sense they hurt on a flare or day you may be holding lots of toxins . 😲

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When my gp thought I had ms and referred me to neuro about 3 years ago, and it wasn't ms he said he suspected fibromyalgia. Nothing more was ever said or confirmed. In a letter back to my gp he said an illness that likely falls under the CFS umbrella. So who knows, maybe it's a mild case of fibromyalgia coz my ribs hurt like I've coughed for a month straight! Xx

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Wo-o-o-ah! Been awake since the early hours again with a burning back. Time to add it to my list of things for the Rheumy! Thanks for the tip! xxx

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Hello cathylou,

There are no official diagnostic criteria for UCTD. It is a poorly characterised but systemic auto-immune disorder which may affect a variety of tissues and cause a variety of symptoms. It's not called 'SLE/lupus' only because it fails to meet the necessary criteria for that specific diagnostic label, but that does not make it innocuous. People with UCTD may be affected by severe joint pain and swelling, fatigue, rashes, Sjogren's-like dryness, Raynaud's syndrome and so on. All of these conditions have areas of overlap and uncertainty, and changes in diagnostic category are common - because our bodies' immune systems are dynamic.

Sadly, your assertion that UCTD cannot damage your organs is incorrect. One common complication of UCTD is Interstitial Lung Disease - which can be very serious, and which I had at first diagnosis. Luckily, after about *4* months of treatment with hydroxychloroquine and steroids, my ILD resolved with minimal lung scarring and has not returned (touch wood).

In your earlier posts, I think you said that you've had a lot of trouble with recurrent chest infections, so I wonder if ILD is something that you've discussed with your clinicians?

It is also possible for UCTD to develop into lupus. In my own case, I have developed myositis and now have a positive ds-DNA result (which I did not have on first diagnosis), so it is possible that my current diagnosis of UCTD may be revised in due course as my auto-immunity profile evolves. x

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You just gave me a lot more info than any Dr I've seen! I'm glad I posted as I now understand. Why am I always left with figuring things out on Google? Do you have the same issue with Dr's? No one has mentioned my chest problems. It usually takes 2 lots of antibiotics minimum and a course of steroids to get me breathing again. Should I bring it up to someone? I just get told 'you can expect to have frequent infections coz your immune system isn't doing its job as it should, it's par for the course'. X

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For those first months, I was completely floundering and at the mercy of whatever the doctor in front of me said. For the first 6 months or so, even after an echocardiogram, I was told I had heart failure. It was only after I had a cardiac MRI that this diagnosis was revised and I got referred to see a rheumy. Since then, this forum has been a major source of information and support - if I'd had to depend on the doctors explanations alone, I'd still be baffled by it all.

Anyway, to add a bit of detail, I should say that a lot of people with UCTD seem to remain stable with that diagnosis. In fact, this article says that UCTD is often mild hss.edu/conditions_undiffer...

The trouble is that - as the article also points out - UCTD is not a clear diagnostic category (it is diagnosed by excluding other possibilities), and that different studies tend to come up with different prognoses. I have seen figures as low as 10% and as high as 50% for the number of UCTD diagnoses that progress into a clearer diagnostic category, such as Sjogren's or systemic schleroderma. What's more, it is very difficult to predict who will progress and who will not. Just to add to the confusion, the same article reinforces your suggestion that "Problems with the kidneys, liver, lungs or brain are almost unheard of in UCTD." - but it also says that "Pleuritis or pericarditis – inflammation of the lining surrounding the lungs or heart" is another symptom of UCTD. If these aren't 'problems with the lungs or heart' then I'm even more confused than I thought! As I mentioned, I was diagnosed early on with ILD - inflammation and

damage to lung tissue. I suspect that my case is unusually severe, but

it only goes to show that these labels can be misleading. UCTD can be a wolf in sheep's clothing!

Your GP is not exactly wrong to say that recurrent infections are par for the course in people with malfunctioning immune systems, but to put it like that doesn't help you connect the dots, does it? Have you had chest imaging (other than X rays)? x

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I had a chest x ray when an out of hours gp sent me to hospital as I had very bad pain and very breathless. They said the x ray was ok and they didn't know what was causing pain and sent me home with broad spectrum antibiotics. Xx

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My understanding is that ILD may be diagnosed on Chest X ray, but sometimes requires CT scanning (or more). Likewise, pleurisy can be hard to visualise by X ray alone. Given your history, plus AI markers, it might be worth asking whether a lung CT scan would be advisable to check for theses possibilities? Nothing wrong with antibiotic treatments in either case, but it might give you more confidence that you are on the correct treatment regime? x

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Chest problems sound like Lupus. I think you should look into chest issues cardiovascular issues . There’s many names for these under Slee/ Lupus for swelled chest and muscles in that area. Do A search under The heart and chest - Lupus. You’ll see the swelling on that area and other organs is very common .

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Wait, they can’t legally fire you for an illness can they? I can understand if you have missed days without calling in....

But people with disabilities have rights.

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Nope, hadn't missed time, struggled in even when I was in agony and couldn't move my neck! I went through Acas and they are paying me off. It's barely 2 weeks wages but I'm taking it as money is tight now I'm unemployed x

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I got fired for “ it’s not working out “ I knew it was my sickness! If they are a privately owned Corp/business, they can do what they want sadly. That’s here in the US

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You have better rights once you've been employed 2+ years which is why I think they didn't miss a beat. Told them on a Tuesday, arranged meeting on the Thursday to tell me on the Friday! X

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That’s horrifying!! I’m so sorry! You should definitely look into that! I was at my job 6 years. Karma came in and took the man that fired me not long after . Good luck to you, you sound so similar to the type of things many of us go through. Do not give up! 🌺

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Thanks xx

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Hi cathyliu

So sorry at what your going thru right now. You can't be sacked for being ill. You could get Citizens Advice help as they have employment advisors who can help. They will also ensure you get the money owed to you and can run a benefits check to see what other help you could get now your circumstances have changed!. Tel 03444 111 444.

As to your health, you've had a brill reply from Whisperit re UCTD which I can't add to although I'm a fellow sufferer. I do think that Rheumy is wrong as you have anti dsdna that I don't have. It is a condition that needs watching as it can suddenly change to lupus more clearly!. I wonder if you could seek another opinion when you've got your strength back!. It's so hard fighting when feeling so rotten. Hope that's helpful and best of luck X

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It's unfortunately the case that you can be sacked for any reason and the employer will leave it up to the 'victim' to take it to an employment tribunal if they are well enough/can afford a lawyer/can cope with the stress and humiliation/are willing to get a non-reference. The Equality Act doesn't afford protection, just defines 'protected characteristics'. Disability is one, but if you do lodge a claim, it's up to you to evidence that you meet the definition of disability in the Act (cancer, HIV and MS automatically meet the definition)...oh I could go on and on and on

Any tribunal claim has to go through ACAS mediation first. That could mean brokering a compromise - settlement plus non-disclosure agreement. Sometimes that's the best option. Hold out for more as long as you can CathyLou! xxx

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Hi Cathy Lou

I am feeling the same have cancelled all future appointments. Just can't cope with anymore. Have about ten different immune problems. The scleroderma/Raymond's has paralysed bowl bladder and oesophagus. Think in lungs but not 100 percent. I no when gets to 💓 it's over. My daughter has grown up now so easier for me.

Wish you lots of luck fighting for you and your family xxx

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Hi cathylou, I'm sorry to hear you are so down, I can relate to a lot of your problems. I was over six years getting a diagnosis of MCTD, the illnesses I had were very serious, inflammation in my head, my lungs, in fact every year a serious one popped it's head up. It's like the old "it's a virus" senario which I also attended the infectious disease unit for a year only to be told this. I also lost my job, I was in hospital with pneumonia when my work did a matrix system on employees who were off work and I came top of the list. It also took six about six months for my stomach to accept the hydroxy as I was sick all the time, still seeing a gastro doc. I went to my doc with a lump on my neck and I mentioned the MCTD, she said it cud be complicated with having that. It turned out to be cancer, I'm off all my meds, even the dreaded hydroxy, back on very high steriods and getting chemo. My dry mouth and eyes are bad at the moment, but it's to do with MCTD,. I'm not a big fan of my rheumy doc, I see her in October after two cancellations by her. She will prob discharge me because of my other illness now. The hydroxy certainly kept my inflammation down, I'd stick by it cathylou, it's better than nothing as you don't know what's round the corner. Wishing you all the best x

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So sorry to hear all that you've been through. I wish you all the very best with your treatment xx

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First of all, I completely understand how you're feeling with regards to being incredibly frustrated and upset about your situation. I am just beginning to go on my own journey trying to get diagnosed and figure out what's wrong with me, so I'm nobody who is able to help as much as many of the very informative and kind people on here.

But being fired for having a medical condition really draws my ire. As far as I know, that's completely illegal, at least where I live in the US. If you're in the UK, it would shock me if that weren't also the case. I would definitely contact the proper agency to let them know you were fired wrongly. It's very important for people who do something like that to anyone suffering get their just desserts. It's wrong and I know there are people who can help.

I wish I had more to offer, and I wish you all the best. If you need anyone to talk to, I definitely can oblige.

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Yep. In the USA, if one gets fired due to this especially if it’s been labeled by ssi, one needs to go the labor board for discrimination. I think it is the EEOC

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Both doctors and patients like firm diagnoses but undifferentiated connective tissue disease is a real entity. As my doctor says, it is only a label. Rheumatologists have different ways of characterizing patients who do not fit neatly into one label. Some say incomplete lupus or lupus-like connective tissue disease. In my case, although I have distinct lupus symptoms, my rheumatologist calls it UCTD. After many years, I asked his reasoning. It is my low positive ANA and normal complement level. Your doctor will explain his reasoning. There is no absolute agreement ever in these cases. You will be treated and followed the same as any lupus patient. Your illness could evolve. You could also get better. I got much better with time. My doctor told me in my early years to stay out of the sun so that he didn’t have to tell me it was lupus. Make sure you protect yourself in the sun. You are being treated appropriately with medication. That is the most important thing. If you list your symptoms, I may be able to take a guess at your doctor’s reasoning. But you really should bring this up at your next appointment. No one knows the complexity of autoimmune diagnoses like a rheumatologist.

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If you feel you shouldn’t be here then I certainly shouldn’t because I don’t have Lupus or any of the blood markers for it. I have Sjögren’s and Hashimoto’s with an exotic array of autoimmune rarities and common degenerative disc disease.

Heck it’s taken me years to get this far and I’ve found a community of friends here, joined Lupus UK just so I can learn more and also be useful occasionally - particularly about the various manifestations of Sjögren’s.

So don’t let the label changes get to you - you have antibodies and characteristics of Lupus and, as my first rheum used to like saying “things can change so try to keep an open mind. After all RA (my first (mis) diagnosis) is just a term coined by a bunch of rheumatologists travelling together once on a long train journey! Nothing about rheumatology is set in stone”. How true this turns out to be for many of us here.

Finally, after 3 years, he told me I could come off Methotrexate and 3 other DMARDs because my RA appeared to be of the “non erosive type”. Hardly surprising when it was Sjögren’s mimicking RA all along! But Sjögren’s is often seriously underestimated and I think he felt I’d be much better off with the RA label for the sake of treatment options and expedience. Even when I relocated and told him I’d been rediagnosed with primary Sjögren’s he replied saying it was all much of a muchness, reminding me to try not to get overly hung up on disease titles!

It’s great that you so far haven’t got any internal organ damage of course - but this doesn’t mean you won’t in future. As Whisperit has said things did change and are changing for him. A good rheum never underestimates the slipperiness of these diseases and the potential for overlaps or morphing.

So far I have seronegative Sjögren’s (confirmed by lip biopsy), +ANA with unusual pattern usually associated with Scleroderma or Myositis. ENA panel entirely normal always. My guess is that I actually have hereditary EDS with infancy triggered MCAS and small vessel vasculitis due to vessel instability caused by Sjögren’s/ EDS and MCAS (allergic drug reactions). In fact I’m almost certain that I have this combination.

But my rheum seems happy to stick it all under the umbrella of Sjögren’s/ CTD with autonomic dysfunction and small fibre neuropathy.

So the only thing I need to pin her down on - tomorrow hopefully - is the vasculitis and whether or not my consistently raised inflammatory markers and +++trace blood in pee and elevated IgA suggest I actually have a very rare IgA vasculitis underlying. The reason this matters to me is because a) I’ve been taken off all meds for a “wait and see” approach for 8 months now and b) I may be slowly but surely sustaining kidney damage.

Otherwise I’m okay with the Sjögren’s with UCTD idea because I’ve all but exhausted all drug options apart from going back on Mycophenolate. I’ll never be offered big gun treatments now unless the disease is clearly shown to be attacking my kidneys or brain or eroding my joints. And my track record of horrendous drug reactions makes me too scared to push for treatments such as Biologics anyway.

I put up with nausea on Hydroxy with Methotrexate for over 2 and1/2 years but finally anaphylaxis ended my relationship with Hydroxy and feeling sick constantly on MTX injections just wasn’t worth the benefits.

I may come out tomorrow feeling very dismissed or a mild case - and feel disbelieved and miserable. It’s happened many times this way for me before. However I know for a fact that nothing about the way I feel is remotely mild. Sure some have aggressive seropositive RA or Lupus or Sjögren’s - but it’s often brought under good control due to good drug tolerance and hitting the disease hard in early stages due to clear antibodies coinciding with indisputable early erosive damage.

Others, like us, slip and slide - never getting good disease control due to not meeting all diagnostic criteria, being seronegative, complexity of overlapping comorbidities, drug sensitivities and other stuff. Are we more or less likely to meet a sticky end than those with one severe autoimmune disease? Who can say. Are we struggling any less due to being complex babes in the clinical wilderness? - absolutely not!

I think 3 months is maybe a bit soon to quit Hydroxy but it’s your body and your choice. I do know that feeling nauseous 24/7 is lousy. I think if I were in your shoes with the anti dsDNA I’d request a second opinion on UCTD v Lupus but I really wouldn’t get too disheartened by a change in label in the meantime.

So sorry about your work place - that’s really lousy. X

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Hi cathylou,

I'm really pleased to see that you have received so many helpful, supportive responses from other members of the community with lots of information and advice. I would like to echo what they have said and advise you not to give up and please at least discuss your medication with your consultant before stopping it. Hydroxychloroquine takes a long time to accumulate in the body and therefore usually takes around 3-6 months to exert its full effect. In some cases I have heard of it taking up to 12 months for people to notice the full benefit.

If you are struggling with the side effects then it is worth discussing this with your consultant. There are other brands available (if you are taking the Quinoric brand it is well-known for causing gastric upset in some people with lupus), you could try a different dose or you could potentially change to a different treatment.

If you are unsatisfied with the communication that you currently receive from your consultant or the treatment plan you are on, then I would encourage you to discuss this with them. If you need any tips on preparing for your next appointment and getting the most from your consultations then I recommend that you take a look at our blog article here - lupusuk.org.uk/getting-the-...

Alternatively, if you wanted to change to a different consultant you could ask your GP to refer you for a second opinion. If you want to know about any lupus specialists in your area, please let me know whereabouts you are based and I can provide you with information about any we know of near to you.

If you haven't already, I would also encourage you to speak to someone about your current low mood and to access some additional support. Your GP is often a good place to start. Being diagnosed with a chronic health condition can have a big impact, especially if it is having a big impact on your life such as your ability to work or spend time with your children. Talking with someone like a counsellor about this may be helpful. You can read more about accessing mental health support and the different services that are available at lupusuk.org.uk/coping-with-...

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I've been overwhelmed by the support I've received here as well as the abundance of information. I've decided not to quit the hydroxychloroquine just yet and have made myself an action plan as to how to move forward from the tips here. Once my kids are back in school I will get to it. Thank you to everyone who commented, it really has made all the difference. Xxx

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I am feeling same way, What do you guys think of Hydroxychloroquine? I have SLE / Fibromyalgia/ Thyroid disease

My eyes were bad before , but Now I’m really blurred however,The benefit compared to dryness and migraine eye it makes feel better I do love. I don’t love I have gained 17 pounds and counting. I had just dropped 35! I was so looking good and feeling light! Now I’m climbing back up and I feel pregnant 🤰

More depressed and the feeling better From Having SLE is now slipping back to how so felt pre - diagnosis. Back to living on migraine pills of all different varieties. Can’t afford the chiropractor and massages anymore . Bills are piled up .

Giving up ... then 2 our of 3 kids are getting married!!👀😲🤣. Great I’ll be fat and bald and blind for the weddings now!

I’m being dramatic 😄 but kind of serious . Any suggestions on meds ( of course I’m going back to my Rheumatologist to ask . Just curious what’s worked for you all? . I started my Hydroxy on Jan 10 2018 .

Thanks for any feedback on this med.

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Wish I could advise. I'm sure you're beautiful but just thought I'd say a wig has given me some confidence back. It only cost £10 but it looks good - Amazon. Xxx

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Yes, I’ve often thought of one! 😉😁

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