Me again

[Haylz2109]

Hi all, Hope everyone is as well as can be 😊

Still not sure if I'm posting in the right place but you guys have always been so helpful 💕

Found out this week that the lip biopsy I had done did not have any sjorgrens syndrome showing which is what they were initially looking for, however the new rheumatologist I am seeing (only seen her since January and she's been amazing) is now saying she believes it's connective tissue disease along the lines of lupus. This is due to my symptoms such as the issues with my liver enzymes showing in bloods and the fact that I've also responded to steroid treatment, so what she has now suggested is trialling me on hydroxychloroquine to see if this manages my symptoms whilst we wait for the antibodies to show in bloods to specifically diagnose it. She's also providing me with total sunblock from the gp and hopefully that will give some relief to the rash I have even if its cloudy and I walk outside.

Has anyone had something similar happen or tried/is on the medication hydroxychloroquine?

I'm just not quite sure what to expect from here and still find everything a bit overwhelming tbh.

Thanks if you've read this far and thanks in advance for any responses 💕

[Chris21]

Hi Haylz2109, glad to hear that it sounds like you’re finally getting closer to what is causing you problems. I think the majority of us on the forum take hydroxychloroquine. It works for some but not all. It does have side effects like all medication. The most important thing is to get your eyes tested before taking it and then every year while taking it, as it can cause problems ( I’ve been taking it 7 years and still have no issue with my eyes). I would say give it a try, it can take a good few weeks before you see any difference and if doesn’t work you can always stop it. 🙂

[Haylz2109 in reply to Chris21]

Thank you 💕 yes I'm keeping everything crossed that I'm closer to definitive answers but definitely grateful to have some help medication wise than being left like I have been previously! Yes the rheumatologist did mention its a low maintenance one that needs to be have eyes checked on it so that's definitely something I've kept in mind 😊 thank you for that information like you say if it isn't right it can always be stopped so fingers crossed this works 🤞🏻💕 x

[LuluM25]

My main advice would be, as you've already mentioned it, to take great care to shield your skin from the sun. Any rash activity is inflammation that, if you have SLE, will circulate around your body and cause inflammation elsewhere. Since I had a very big skin flare 5 years ago my skin is constantly a problem so that I'm still taking steroids 5 years later. Also I'm taking hydroxychloroquine and Azathioprine so you may find yourself in a similar situation in the future. I've just noticed you're 35, same age as I was when diagnosed! I'm now 70 and managed to work full time until retirement whilst also looking after a family. I hope you'll find a way to cope and carry on as 'normal' a life as possible and manage your symptoms. Do your research and learn as much as possible . Know your own body and be prepared to push for help, treatment etc from medics as required. There are many knowledgeable contributors on this site so I think you've definitely posted in the right place. Best wishes.

[Haylz2109 in reply to LuluM25]

Thank you 💕 yes i do try my best with the sun protection currently using factor 50 whenever I leave whilst I wait for the total sunblock to be prescribed. Sorry to hear that you are still having to take steroids hope you're not feeling too bad with it all. Does it mean that when your face has the rash that you're in a flare then? Lately I don't think I've had a day go by without having the rash and that's with being on steroids. Good to know that there is the possibility of needing extra treatment etc depending on how it goes.

Oh really? Well I started having symptoms after my second child so I was around 32 and then it's just gotten worse since then. I am glad to hear that managing work and child care is a possibility once on the right track as unfortunately I've been off work since going back after maternity as my job is extremely stressful and caused numerous problems but I am hopeful that I can return once feeling more normal.

Thank you i have tried to research as much as possible as a couple years ago I questioned lupus but without the definite answers I didn't want to be focusing on the wrong thing, now that I know its looking to be likely I feel more comfortable getting the information.

Thank you very much for all that information 💕 x

[Poshcards]

Hi, I have been on Hydroxychloroquine for well over 25 years now and been fine, I have had Lupus for over 30 years xx

[Haylz2109 in reply to Poshcards]

Thank you 💕 I appreciate that information glad to hear it seems to work and is a long term option for things 💕 x

[Krazykat26]

It does certainly sound like you have a good rheumatologist there. I've been taking hydroxy since diagnosis in 2017. It's a Disease Modifying Anti-rheumatic Drug (DMARD) and is used in preventing malaria originally.Your doctor should give you a little white booklet called a DMARD booklet and you will have to go for regular blood tests to check that you're ok on the drug. If I remember rightly I had to go every two weeks at first n then it went to monthly bloods.

There are several different brands of hydroxy n some brands can cause tummy upsets so if you experience anything like that it is possible for the doctor to prescribe another brand. Lupus UK have informative leaflets about this.

The main side effect for me at first was heartburn after I'd taken it so I now take my meds with a small glass of goats milk n that sorted out the heartburn problem. It does say in the packet that you can't take any heartburn meds so the milk worked for me.

As others have mentioned it's important to have your eyes checked regularly but your doctor will probably tell you this.

Best of luck 🍀I hope you find it helpful 💜🌈xx

[Haylz2109 in reply to Krazykat26]

Hi Kat thank you 💕 I remember you previously commenting and providing help with my situation 😊 Yes I am currently waiting for the leaflet to arrive about the medication so that I am happy to try and see if it helps and she mentioned she's going to put blood forms in I'd assume to use prior to starting it so they know where I am at.

Currently tapering down off steroids so hopefully it won't be too long afterwards that I can start the hydroxy.

Ah she didn't mention any extra bloods but I'm assuming that's something she'll do as we go along, oh was it ? Yeah with the steroids etc I'm currently on I'm not allowed heartburn remedies so hopefully it won't be too bad or like you the milk will be the resolve 🤞🏻

Yes I have got an eye appointment prior to starting now so hopefully they'll know to keep an eye on it from there so can see if it's a problem or not.

I've definitely lucked out with this rheumatologist as she's sent me for the works prior to getting to this stage so I really can't fault her and can't explain how much it means to have a dr actually listen etc which you're probably more than aware of.

Thank you for all that, I really hope this is the start of feeling better and having quality of life back 💕 x

[BonnyB]

I was diagnosed with UCTD , with lupus features a couple of years ago. My rheumatology team gave said tgey think it is lupus but not quite enough evidence, more things may show up over time. But as sge explained...I'm treating you for lupus anyway with hydroxychloquine so not point getting hung up on the diagnosis basically. I personally can only tolerate zentiva brand. They others name me I'll. Almost stopped taking hydroxychloquine until I saw on her about tge different brands and side effects. Had no problems since.

I've reduced my working hours by one day. So I can rest on a Friday and then get to have a better weekend.

Hopefully they work for you, take x

[Haylz2109 in reply to BonnyB]

Thank you 💕 so I'm definitely not alone then, yes she did explain it can take years to actually show in the bloods so I think she wanted to get a head start on it based on all my symptoms and the liver etc. Yeah I'm trying not to get hung up on the diagnosis just hard when work try to ask me for updates and I can't give them a definite one but at least this could be the right medication to get me feeling better and back to work.at some point. Ah ok so there is different brands if one wasn't the right match, that's good to know thank you!

Yes I can imagine it would be draining, I am lucky though I went part time after having my children so usually do 2 days a week but might see how it goes when I manage to go back I do also have an option of working from home so hopefully it won't be too difficult when I feel well enough.

Thank you for all that information 💕 x