Update: Firstly BIG THANK YOU to everybody who gave... - LUPUS UK

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Firstly BIG THANK YOU to everybody who gave me input last time I posted!!

This is where I'm at now, after my rheumy ref me to an Opthalmologist - After dilating my pupils & using an imaging machine to look at my retinas I saw a consultant who explained the images & also showed me what a normal image is compared to mine he concluded that I have a toxic build up of hydroxychloroquin thats affecting my retinas& its irreversible!! Thankfully I am still within the legal limit to drive, I have an appointment to have a field test coming up & he wants me to have a procedure that involves electrodes on my eyeballs that give another image (?!} I rang my rheumy the following morning & she had had his email & instructed me to stop hydroxy IMMEDIATELY...

SO, Here I sit, ravaged with joint pains & swelling, muscle pains, nerve pains, hair coming out in clumps, if I eat I vomit- if I dont I feel sick. I cant sleep for the pain & when I can the pain wakes me again. I want to cry outwardly like what going on inside but Im too exhausted. Who knew 6 weeks without meds would make me feel this bad?!

I'm due to see my rheumy again to discuss what to take instead (PREDS are out of the question after last time) but not til the end of MARCH!

Sorry, I'm whining now. Hope all of you are keeping well.xx

17 Replies

Nanuuk, I am so glad that you caught this early, another reminder to us all to get those check ups. It is also a reminder of how much the hydroxychloroquin is actually doing for us in a positive way. I hope you find something else to make you feel better soon, can you not get an earlier appointment under the circumstances?

I have tried. Yes it does highlight the good the hydroxy was doing for me. At the moment Im exhausted & in pain but doing research in medication options when Im not working (scared of taking time off - this sickness abcsence record malarky) & taking it as gentle as possible. Thanks for your reply Chapter.

Hidden in reply to Nanuuk

Hi Nanuuk - thank you so much for sharing this. I really sympathise about your eyes. Hope you can start feeling a bit better soon.

However, I need to tell you that it sounds as though you should not be at work right now. I know you are scared of having time off (in case you lose your job) - but will your organisation show such loyalty to you in return? The answer is no, they won't. When they want to get rid of you they will, regardless of how much sick leave you didn't take and how many days you struggled on feeling awful. Please, take the time off when you need to - put your health first. There are other jobs. But your health? When its gone its gone.

I have given this advice to others - based on my own experience. My kidneys are wrecked because I didn't take time off - I will never get that function back. And I am now out of work anyway.

Take care,

Nanuuk in reply to Hidden

Thanks MaggieS & you are of course right, on all counts. Isnt it shocking that we fear being penalised for looking after our own health FIRST. I am going in today soley to speak to my boss to say exactly whats happened, how its affecting me & that I need time out without fear of that stage 4 sickness abscence triggered (ie dismissal!)

Sorry to hear that you are suffering so much...I have just been diagnosed (for years they said it was Fibromyalgia) and I still have a lot to learn about the meds and other complications etc....At the moment I am on a steroid (prednisolone) and have to start taking metotreaxate this week (am going to do it tomorrow as am not sure the effect it will have on me and don't want it to interfere with my working days!)...I am also having probs with work and am on short time at the moment (2 days-6hrs a day per week) last year I was working 12 hr shifts 4 days a week!! I can't get low income benefit as am not working enough hours-and I can't get any other benefit as I am 'still working', my poor old parents are having to pay my mortgage! God bless, I'm so lucky that they can do it for me! Anyway hope you feel better soon and get some other meds to help you, as I said I am still really new to the meds. And as someone else said it is lucky you caught this early...bam1993

letslaugh63 in reply to bam1993

Did you take out insurance with your mortgage, check it please you could be having help there .

bam1993 in reply to letslaugh63

Simply answer...NO...been a single parent since 1993..(hence the name, ex-hubby passed away!!) and was always skint-my kids are grown up now and am a very proud nanny to Raife 2yrs old. Always seem to miss out in the benefit world-when my kids were little I had 4 jobs, (there was no working tax-single parent benefit then!!) Missed on the widow benefit as hubby and I had divorced/also mortgage did not get paid off as his name was off of it by then...so I just worked as much as I could. Now when I really, really need it, as I simply cannot work to earn enough to keep myself-I'm not entitled!!! I did say to the chap that told me 'so you are saying I would be better off not working?' reply ' I didn't say that madam!! I am just telling you the rules'.....anyway bottom line is I do still WANT to work, as I think if I give up it would be like throwing in the towel, and I am not ready to do that yet!! Anyone else ever had to claim benefit and had it refused?

letslaugh63 in reply to bam1993

I am same as you hours have just went up at work thankfully,before that since Dec was approx 4_8 hrs a week.I'm seperated but my husband helped me pay rent and bills.system totally wrong you get help if you work 30 hrs I would be well chuffed with 30 hrs.I know not much but you can get hc1 form which helps for prescriptions not sure what else but it's a help x

Thanks bam1993 - hope you find the meds that help you soon too.

The toxic build up is quite pronounced but I was on 400mg chloroquin phosphate for as many years as hydroxychloroquin basically.(20yrs total!) Opthalmologist told me that its not reccomended that anybody be on it for more than 5yrs so to say I feel lucky is an understatement! 3-4pm anything I planned to do gets shelved - the exhaustion ramps up, then a further crippling wave hits 8pm but I just cant get to sleep for pain then if I do manage to, the pain wakes me!

Its making me come unhinged I swear!

Hi Nanuuk

This post has really made me think as I have been on hydrox for 8 years now, and there is no immediate plan to take me off it. I have regular eye tests, which so far have all been fine, but if you are not supposed to be on it for over 5 years, I think that maybe I need to speak to my consultant about it in March. Another thing to add to the ever growing list lol.

I'm really sorry you are suffering so much as a result of coming off the hydrox, have you spoken to your specialist nurse or the secretary of your consultant, both of who can explain the circumstances to the consultant on your behalf and maybe get some advice? I always find that dealing directly with the consultants secretary works well.

Really hope you manage to get some help soon :)

hello nanuuk,

im sorry to hear youre feeling so poorly. ive just booked my eye test after reading your blog as ive put mine off for three years. i send you big hugs x

Hi Nanuuk,

I'm so sorry that the hydroxy has caused this. I too am on this 400 mg daily as well as building up to 15 mg methotrexate. I tried to cut down to 200 mg hydroxy previously and the joint pain was overwhelming again. You have made me realise to keep checking my eyes too. I hope you get sorted real soon and that your pains and fatigue get sorted too. Take care xx

Gosh I didnt mean to cause any alarm! Every time I went to the consultants I mentioned flashes when I blink, seeing floaty things across my vision & my eye colour seemed to have changed & it was by chance that mentioned my inability to see 3D in the last few years & new rheumy ref me to the opthalmology ((my opticians refused to comment & just said to ask the consultant next time I go)

The last couple of years I have really noticed deterioration in my sight (and need to book another eye test AGAIN).

Thank you everybody.xx

Sorry 2 hear this.

I had a brief spell on Hydroxy a few years back (it did bugger all 4 me, just gave me loads of extra problems 2 complain about) & I was warned about the retina damage b4 I started taking them & told 2 make sure I had eye tests every 3-6 months but I WAS told that the retinal damage, if it occurred was REVERSIBLE. Just goes 2 show that sometimes they don't always give the correct info :-(

l'm not on any drugs as undiagnosed.I'm so sorry that your having such a bad time and hope you get help soon x

Hi Nanuuk, sorry to hear your experience. I have been on Hydroxy for about 9 months and have had good results. My original rheumy was very good, he gave me an information leaflet and told me to read it carefully before I started to take the meds. He also asked if I visited the optician (which I do every 6 months) and advised I discussed it with him. I'm horrified at your optician's comment. My optician has been great, he explained everything carefully, told me what to look out for and he is now doing additional checks every 6 months. The great thing about this site is that we can all learn from other people's experiences, both positive and negative. Nanuuk, I hope you get precribed something else to help with your symptoms. Good luck.

Its heart warming to know that other patients are given all the info needed to make informed decisions! My opticians, knowing my meds, reccomended eye tests every TWO YEARS!! Neefless to say both myself & child are going to move opticians - there have been other gripes over the last few years. Azathroprine & methotrexate have both been mentioned as a choice (not together!) - Im looking at this now as anopportunity to evaluate WHAT my symptoms are, keep notes then present to Rheumy then she & I are both fully aware. & can move foreward from there. (OK I had totally NO sleep again last night!)

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