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Rank: Advanced Member  Groups: Registered
Joined: 5/7/2012 Posts: 149 Location: S E London
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Hi all,
Had my latest consultation yesterday, (with registrar) and this time requested to be transferred to a hospital nearer me, i then found out this would have happened next year anyway as the whole hospital is being closed down.
Was decided that the next step for me is to introduce Hydroxychloroquine alongside MTX. I'm only on 10mg of MTX as my bloods went a bit haywire when it was increased so they don't want to increase again just in case.
I'm to have monthly blood tests monitored by the hospital (I was hoping to be monitored by my GP by now but not to be just yet).
She has also requested I have lipids done with next blood test, I asked if this was a fasting test and she said I could if I wanted, strange answer!
I must admit I felt quite sorry for this young woman who was more than an hour behind schedule and seemed to have a mountain of papers on her desk. She mentioned me having a liver scan but I won't be surprised if that gets overlooked as she was so stressed.
I know lots of you are on this combination of MTX and Hydroxychloroquine, is there anything I should look out for, I know there are certain side effects, was surprised to find out tinnitus is one of them.
Off on holiday in a couple of days so am putting off starting new drug till I return.
Best wishes to all
Mary
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Rank: Advanced Member  Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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 Hi Mary When I was diagnosed 5 years ago, I was put on hydroychloroquine to begin with, then she added with sulfazalizine (sorry if spelt wrong). Then hospital consultant decided to add methatrix to hydro & sulfzalazine. So, take all of the medicines everyday. I don't think about the negatives because I have faith in my consultant from the rheumy team in hospital, I feel that if I took nothing, then my mobility wouldn't be great at all. I haven't googled the negatives in the medicines, I know with the monthly blood test it it would through up markers for my doctor and rheumy consultant to note and act on the information. I went back on methtrix last week after two years of trying for a baby, I relised I my body needed methtrixate to help me more mobile. don't remember any side effects. Just want a more mobile life to enjoy. Enjoy your holiday. Jane Xxx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Mary,
Hydroxy was added after about 6 months of being on Methotrexate ( unfortunately didn't work for me ) but still on it as i have now been on Humira for a year.
you are given a sheet of paper to check your eyes monthly .. forgotten the name, it's made up of grids and you just check with one eye closed on each eye.
also told to have regular eye tests although my Optician told me that to continue with my usual 2 yearly eye test. he said if any problems occur it's usually early on and it's very rare.
hope you enjoy your holiday,
Suzanne x
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Rank: Member
Groups: Registered
Joined: 5/15/2012
Posts: 18
Location: Essex
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Hi everyone, on 13 September 2012 my rheumy doctor started me on sulfasalazine (which my dosage increased every week) and Hydroxychloroquine 400mg once a day. After taken both meds for 9 days I started having sore throat, pain at the back of neck, sob and fever (fever went up to 39.5 degrees Celsius, even though I was taking paracetamol every 4 hrly). I ended in A&E and I was admitted. The rheumy team saw me and they decided to put on hold the 2 new medications and all symptoms went away gradually within the 4 days when I was in hospital. When I got discharged the rheumy doctor told me to re start the Hydroxychloroquine but take 100mg only, I re started the tablet on the 28 September and 7 days later all the symptoms was back again (sore throat, pain at the back of my neck, sob and low grade fever, plus pain in chest and between my shoulder blades). I called the NHS direct line and the doctor advised me to come down so he can see me. Saw the doctor and he advised me to stop the Hydroxychloroquine tablets until the rheumy nurse got in contact with me and advised me want to do. Rheumy nurse called me on Tuesday and I told her want happened she told me she going to discuss with doctor and she's going to call me back later during the day but I never heard of her after that. So guys anyone using that Hydroxychloroquine and had the same problem as me? I’m really worried.
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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I think they will probably stop the drug now that you seem to have had a second reaction. A similar thing happened to me with Leflunomide. I got an itchy hives leg rash. Stopped the drug on the advice of my GP and nurse. Was told to reintroduce it and the same reaction occurred. I then went onto a different drug altogether. I don't think you need to worry now that you've stopped the drug. I'm sure it will clear out of your system quickly. If you don't hear anything back by tomorrow lunch time I think you should call the nurse and ask what's happening. It's a shame she/he couldn't call back just to keep you updated. It wouldn't have taken more than a few seconds. Maybe they are completely rushed off their feet. Let us know how things develop for you......and don't worry, there will be another drug out there for you. Naomi, X
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Rank: Advanced Member  Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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mary, i am on 25mg inj mtx and hydroxy plus the rest,i was on mtx tabs then changed to inj as i felt sick and not too good on the pills,they were to slow on release for me,i find the injections so much better still have side effects but i know whats coming and deal with it,also i have tinnitus i was on sulph and thats when i got the bells in my ears,i did link sulph with tinnitus,doc wouldnt agree as per,i got a mri scan to check no bones were fused together in the ear and a hearing test both results were a ok,still hear a £5 drop, i do get the rashes,more so if i get caught in the sun(mtx prob) also i get the itchies with co-codomol more so if i take 2 at the same time so i take 1 every 2 hrs,i have had 2 biopsies for this and told it is eczema,which i strongly disagreed with, i reckon its the meds but the doctor who saw me wasnt listening as per,eye trouble on hydroxy is rare but you are entittled to get an eye test every year but tell the opticition your meds mix asap, also the hair may thin with the mtx i didnt get a lot of loss but had my long hair cut just incase as i did get a little thin on top, also tell the dentist about mtx plus the mix you are on as he needs to know before treatment,bet thats cheered you up  at least the stommach protectors are normally ok, wait till you try and pace yourself that took me a long time i still think i can run around like a 2yr old,a nap mid morning/afternoon is ok with ra,that is a perk we get,hope you had a nice break and good luck with your meds,its so annoying, its trial and error im affraid,dorothy
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Rank: Advanced Member  Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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I started on HDX and then added in MTX a couple of weeks later. I've been fortunate and haven't had any side effects from either med and they are definitely working as expected - it take a few months though to get full benefit. I was told to get my eyes checked regularly, so I see my optician every year and have a photo taken to compare with previous one - so far all is normal. Even though I don't suffer with side effects, I am very aware that I have to be swift to deal with any minor infections, because, with a dodgy immune system, they can get worse quite quickly and you cannot be too careful with eyesight. Hope all goes well - Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Dorothy, what was that about entitlement to an eye test on hydroxy? i have paid for my last 2 as no one mentioned anything about entitlement....though I always thought it should be free for people on this drug. Naomi, X
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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When I was first diagnosed I was only taking SLZ. When things got worse I was offered MTX or Hydroxy. I had a chat with my specialist nurse about side effects and I can remember her telling me that hydroxy can do irreversible damage to your eyes and she explained about having to have an eye test before I started the drug, having to check them myself at home and having to have yearly eye checks instead of the two year one that we are all recommended to have.
I asked the question that if I was on drugs that could effect my eyes and that I am told to have yearly eye test, was I entitled to free eye test and the answer to my surprise was No.
Like Naomi said in the previous post, because of what the drug could do to our eyes you would expect the checks to be free. We need to take these toxic drugs, we don't take them just for the fun of it.
Paula
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Rank: Advanced Member Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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SORRY wrong choice of words oops, i meant eye test every year instead of every 2 years, i dont pay now as on benifits and dla,so sorry will watch grammer in future but do look into it maybe there is a discount voucher,when i was paying i started to go to my local tesco as it is loads cheaper always deals on the go and i feel i get more personnal attention from them, i know my husband got his free due to his diabetes dont know if still the same,dorothy
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