Rheumatology Appointment - Finally!

[Leenie0811]

Morning Everyone,

Finally had my specialist appointment on Friday and even though I went alone with no support (currently living back with my mum as I separated from my long term partner) they have decided to start me on Hydroxychloroquine as the specialist said I am showing all the signs of Lupus or another Connective Tissue Disorder - he is doing some more bloods (not exactly sure what I didn't catch what he said) and I have to see the eye specialist soon but I feel like I am finally getting somewhere!

Has anyone recently started on Hydroxychloroquine or can you tell me about your experience with the medication if you've taken it for a while? I'm feeling nervous about starting it but hopeful it will help my symptoms as I've been put on absence review at work. I'm not sure they understand but I also don't know if I need to share this with work either - can anyone offer any advice on how much to share with employers?

Thanks,

Leenie x

[loopy4me]

I’ve had an excellent experience with it! No noticeable side affects. It is also taming my body down. I’ve been on it for about two months. I take two 200 mg a day spaced at twelve hours. It slowly begins to help, so be patient! It doesn’t provide sudden relief like prednisone. But like I said I have not witnessed any side affects

[Leenie0811 in reply to loopy4me]

Thank you so much for sharing your experience, I had a chat with the nurse who said it might take up to 12 weeks so I'm going to note that in my diary when I start taking it. Have you been to see an eye specialist before taking the meds or was when you had first started them? I worry because waiting times at the hospital I'm going to are long! xx

[loopy4me in reply to Leenie0811]

I went to eye dr about a month after starting the medicine. The test would show degradation of the eye. As long as you can get the test within a few months, I would feel it’s ok. I think they are looking for a slow degrading trend of he test. I got the feeling from the dr that it wouldn’t be an immediate problem but a slow degradation if you are affected

[Leenie0811 in reply to loopy4me]

Aw thank you that has put me at ease knowing it should be soon after starting the meds, I'll write a reminder to chase it up in a months time if I don't get an appointment in the meantime x

[loopy4me in reply to Leenie0811]

One oddity I noticed after taking the meds is that I have really bad dry mouth at night. After studying up on it, I’ve determined that it is most likely from Sjögrens and not from the med. not found any links connecting plaquenil to dry mouth

[Leenie0811 in reply to loopy4me]

Good to know too Thank you again for all your info! xx

[Lupiknits]

I’ve noticed a definite change for the better from it. The first couple of weeks I had an upset stomach (before I realised it’s best to take something with it) then I was very itchy all over but that, too, settled. It seemed to take a little longer for me than for most before the benefits became noticeable.

My ophthalmologist is very clued up on potential eye problems associated with hydroxy, and I’m happy enough with that

[Leenie0811 in reply to Lupiknits]

Thank you for sharing! I hope it helps I really do can’t be dealing with the unknown anymore 😞 xx

[F1zz]

Hi, I started it in June. It takes awhile to kick in but I feel it helps. I haven't had any prolonged 'ill periods'. I still have to pace myself but it's fatigue now rather than a throat full of ulcers or feeling like I have flu. I still have pain but find it's linked to me overdoing it( which is a relative term as overdoing it for me is vastly different from my friends or family). Defo make sure you eat before taking it, I forgot once and my tummy was not happy!!!! Good luck, we are at a similar place in diagnosis as that was what the doc said to me in June. I gave my second app in December x

[Leenie0811 in reply to F1zz]

That's good to know we will have to keep each other updated on how we are, I checked my online record and the GP has the letter saying to start me on 200mg daily. I completely understand how you feel with overdoing it, I work a 42 hour week and do uni part time, some weekends all I do is sleep to catch up with everything! I'll keep that in mind for sure when I take it my tummy is already sensitive enough haha, do you take it in the morning or later in the day? x

[F1zz in reply to Leenie0811]

I take mine with breakfast x

[Leenie0811 in reply to F1zz]

That’s good to know, I’m not a breakfast person but I’ll make sure I have it at the same time of day to keep it regular... another alarm to add to the many on my phone! Xx

[Hamptons]

I have taken it for years with no issues. It was incredible and turned life round, I had very few flares and symptoms for many years.

In terms of work, be honest, they have a legal duty to make appropriate measures so can only do that with full disclosure. Ask for occupational health involvement and if you are in the UK there is Access to Work that you apply for. They see what you need at work to help you. Just try to keep things written down so everyone knows what has been said and agreed.

Good luck

[Leenie0811 in reply to Hamptons]

Thanks for the work info I will get onto them as they did speak to me about talking to Occupational Health but I was struggling to understand what they do for you and my manager wasn't the best at explaining the whole situation with them. I was having one of those days where nothing was going in which didn't help! I think now with a diagnosis it would be more beneficial as I just had a massive question mark over everything in the past.

I have multiple notebooks and write everything down, it is something I've always done but now I have a small diary too so those little things I don't forget either - its essential to have that diary about these days it's my life saver! x

[Hamptons in reply to Leenie0811]

I used occupation health to explain to my boss what needs were and what they could reasonably expect. Sounds less drama queen when a recognised professional says ‘may get lost in office on a bad day’., removed the emotion.

[Leenie0811 in reply to Hamptons]

I think I will take up the offer to speak to them then because I know sometimes I can do work really quick but then like yesterday it was like working in treacle I just couldn't get anything sorted and felt as if I wasn't getting anywhere. Really I should have gone for a walk to clear my head, the open plan office doesn't help at times but there's not much they can do for that not even the management have their own offices in this building!

It does appear that unless people know someone close to them with an autoimmune condition then it is really hard to understand how it varies from day to day.

Also, I wander between floors of my building forgetting where I am supposed to be going too! xx

[Hamptons in reply to Leenie0811]

Give them brochures from this site too. I gave the symptoms page to my staff which says can be fine one minute then not the next. Has helped a lot. I have also explained I may not proceed first time Whats said. I know feel more supported. I hate sharing my private stuff but it impacts them so bad too.

[Leenie0811 in reply to Hamptons]

That's a good idea, I am in the middle of changing jobs so it's something I will definitely do for my new role xx

[Krazykat26]

Hi Leenie

Welcome to the hydroxy club!! 💐

I've been taking it for a couple of years..started on 400mgs daily in split doses n I'm currently on 300mgs per day.

At first I had quite bad heartburn which is unusual for me..so I take it with a small glass of goats milk which sorted the problem!!

I'm totally with u on the diary..I'd be lost without my notebook..even the docs say to me now..that's it put it in your book!! 😹😹

So glad to hear that you're getting somewhere now..yayyy!!🎉🎉

Kat 😽😽 xx

[Leenie0811 in reply to Krazykat26]

Thank you I have been started on 200mg daily. I will defo keep that in mind about the heartburn because I already suffer with acid reflux which is a nightmare but I have some tablets to control that when it gets really bad x

[Salzer in reply to Leenie0811]

Hi Leenie. I'm 10 weeks into taking 200mg per day and just starting to see some changes I think! My head feels clearer for first time this year and no mouth ulcers for a few weeks now so feeling hopeful. Fatigue/joint pain still an issue but I'm hoping that will turn around too. It's definitely a slow burner for many of us I think. Lots of great advice here to stick with it. It upset my stomach for about a week or so but I take it with dinner now and no probs. Good luck with it and with getting work sorted out. S

[Leenie0811 in reply to Salzer]

Wow that's so good I'm pleased for you! I'll probably post on here about work depending on how it goes. I told one of my managers that I have medication now and he seemed okay, just didn't understand why it takes so long to kick in but at least he knows x

[pattypatchwork]

Hi,

I have been on it since July last year and so far so good. Did have to come off it for a short while as a lump was found in my right eye (I had an eye test a couple of months after starting it) and I have developed a blurring in my left eye vision but after intensive tests (1 involving me being injected with left dye so I resembled a minion for a few hours) itr was decided that it wasn't the medication so I was allowed back on it.

I have found that I am not as tired when on it (I was able to do a bit of a comparison with being taken off it briefly) and my joints and bones don't ache as much.