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Date: 08.05.2011
From: Gillian

Subject: Introducing myself

Dear All. Just thought I would introduce myself seeing as I have replied to a couple of questions from other members. My name is Gillian (54 yrs of age) and I have finally been given a diagnosis to my aches and pains over the last 3 years or so. I have seronegative RA and saw the consultant 6 weeks ago and was prescribed Hydroxychloroquine (Plaquenil)400mg daily alternating 200mg. I work full time and there are times I find daily life really painful and depressing. Although it was a relief to finally get a diagnosis I felt very sad at the prospect of an illness which could potentially take over my life. I had a steroid injection in my bottom at the consultants appointment and by the next day I could walk relatively pain free and with little stiffness. Felt so good. But I understand that this will only last about 12 weeks but hopefully by the time this happens the Hydroxychloroquine will be kicking in. It frightens me somewhat to think that the tablets wont work and I will be back to square one. Trying to keep positive but its hard to at times I must be honest. I suffer from quite profound tiredness where I could sleep and sleep. I also take anti-inflammatory/pain relief tablets. I just hope I can remain positive and enjoy life like I used to. The pain and stiffness in my hands and feet/ankles has over the last three years has taken over me of late and it makes me feel very low although I keep a smile and remain cheerful on the outside, inside I feel am hurting. Thanks for reading this and wish you all very best wishes. Gillian
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Date: 08.05.2011
From: rachel

Subject: Re: Introducing myself

hi just a quick question, did you have a eye test when you started taking the hydroxychloroquine? if so was it a full eye test or is it different if just testing re medication? rachel
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Date: 09.05.2011
From: Patricia

Subject: Re: Introducing myself

Hi! Nice to hear from you Gillian. Like you, I am seronegative RA and it took years for the Doc to diagnose me. I am also on Hydroxychloroquine and it has helped a little but feel that I have reached a plateau with it now. Fortunately Gillian there is always something else to try so don't give up hope. I completely agree with you that it is sooooo hard to remain positive all the time although on the outside we put on a brave face. To be honest we wouldn't be human if we didn't feel fed up sometimes with this chronic pain and terrible fatigue :-(. You must be completely worn out working full time and dealing with RA. Hope all goes well for you. Take care...x
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Date: 09.05.2011
From: Patricia

Subject: Re: Introducing myself

Hi Rachel! When I was put on Hydroxychloroquine I was given a VERY basic eye test by the rheumatology nurse. It was a case of how far down the chart I could read with my specs on. That's it!!! I decided that wasn't enough for me, because having researched about the drug found out there is a very small chance it could cause retinal damage. I went to my optician and had a full eye test and paid extra for more tests to check the health of my eyes. I will have this done every six months. It would seem that my hospital don't provide this on the NHS. Hope this helps...x
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Date: 09.05.2011
From: rachel

Subject: Re: Introducing myself

thanks for info gillian hope you feeling abit better,its my other half thats the sufferer of pa,hes also on methatrexate and in a bad way,hes just had a couple of weeks off but is such a fighter he hates having to give in but hes not helping himself by trying to be tough!! Poor lad hes gone from the active happy go lucky 40 year old to walking with a stick,having a hand splint and being a proud owner of a blue badge within 10 months. Rachel x
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Date: 09.05.2011
From: Gillian

Subject: Re: Introducing myself

The consultant did a basic eye test when I had my consultation with him. For peace of mind I am going to make an appointment with my optician just to make sure with a more detailed sight test. I wear glasses for work and contacts for weekends.
I am going to ask about a blue badge. I am not on DLA or anything even tho I did try almost two years ago and did all the appeals etc. I have bad asthma as well you see and I applied because of that but it was turned down at the final hurdle. I had exhausted all my appeals/tribunals. I would really appreciate a blue badge as I get so tired and walking is long, slow and painful. I go shopping at weekend to supermarket and I look at the disabled bays empty and think 'if only' and park in a normal bay. It would really help me so much. Going to ring the Council this week to make an appointment to see if I can have one.
Yes I do get very tired working full time and days are often long. Just feel that if I go part time I am giving in to this pain and stiffness. Just hope the tablets will help me. Thank you all for your replies. Gillian
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Date: 10.05.2011
From: Nadia

Subject: Re: Introducing myself

Hi Gillian
Sorry to hear about your diagnosis. I have been pa for many years, was an upbeat - go getting - doing kinda gal - and now somedays I just can't even get out of bed. However - my main message for you is to be kind to yourself - this has taken me FAR TOO LONG to realise. I moved from full time to 3 days a week, so that I could have a days rest for methatrexate, then a day off to do my 'chores' and still have the weekend with my family without completely exhausing myself trying to do everything in a 2 day weekend as well as putting up with MTX side effects.

I now find it so much easier to manage every day, have a brighter aspect on life, and find people extremely supportive of my decision - my work particularly - wanting to support me to keep working, whist understanding my limitations. once our limitations are understood by us - it's surprizing how others simply accept them - the hard bit is accepting them ourselves - but trust me - it's a huge step in getting balance and happiness back in your life.
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Date: 10.05.2011
From: lynn h

Subject: Re: Introducing myself

hi im lynn i have pa i was given hydroxchloruquine and i like alot of you on here was given a very basic eye test by the rhumy nurse at hospital i was on this for 5 months with various anti imflammtrys but they did nothing for me so i was taken off them and put on sulphsalazine which i took for 3 weeks they took allergy to the drug and have since been taken off so at the moment im struggling on with anti- inflamotry and tramadol for the pain. I am in constant agony an feel so depressed i am off work at the moment to i just wish i cud get something that would help my pain the rhumy was talking about methatrexate but im not sure about these. i am 34 and have 3 children in primary school so getting up and getting them to school is a major problem for me because i am so sore, i just hope the next dmard will help me.
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