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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi, saw one of my GPs this morning to ask for the referral to Royal Free. She was happy to do it, and asked me why I wanted to change consultants. I explained what happened and gave her the report from Dr Kaul, she agreed to give me more pred to continue taking 5mg per day, and also more amtitriptyline. I asked her about the eye test I have been asked to get before going on the hydrochloroquine and she said to just make an opticians one. I thought it would need to be a special one at the optomotrist, but apparently not. I also mentioned about the haemophillia appt and the problems with the platelets, but she said to wait for the report from the department. (more about this in previous topic "been a bit silly") At least I know I can transfer to Dr Kaul now, which puts my mind at rest. I also told her about being advised to stop working, and she didnt seem surprised about it. I said thats another reason to transfer as Dr Kaul thinks if the RA is controlled there is no reason to give up, at least not for a while. BARBARA
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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Hi Barbara Sounds like you got the result you wanted; good to hear a success story every now and again! I think when I was on hydrochloroquine my eye test was done at the local opticians. Its a fairly straightforward check where they look at the general health of the eye. In rare cases the drug can cause blurred vision and damage to the retina but this is usually avoided by careful dosage. Hopefully a new consultant will give you a more positive outlook on future employability! Good luck, Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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So glad things are moving on Barbara. The eye tests at the opticians are so advanced now it should be ok. My opticians have a machine that takes a photo of the back of the eye and the optician said they would be able to check any damage to the retinal from that.
Julie
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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"Unlike optometrists and ophthamologists, opticians do not require a license and cannot conduct eye exams or treat patients"
Thought this may be useful. Presumably most opticians have optomotrists working for them, and they are the people who conduct the eye tests? Don't really know the answer!
Barb - delighted you are getting listened to and being transferred to Dr Kaur's list.
Lots of love Jeanxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/6/2009 Posts: 84 Location: Northern Ireland
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Hi Barbara Glad to hear things are moving on. I just go for a yearly eye test, I have been on HCQ for quite a while now and I have had no problems. Joy
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Hi Barbara
I'm glad you're getting some answers now. I would have thought that if you see Dr Kaul, and get the right drugs for you, you would then be able to carry on working.
I hope you get to see him soon.
Lyn
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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well, this is what I think for what it is worth.
Some rheumatologists are extremely clever about the way these diseases work.
they tend to think RA PATIENT + DRUG = WELL PATIENT.
What a lovely thought that is!
Reality is that even with relatively mild RA that is well controlled with drugs YOU STILL HAVE CRAPPY HORRIBLE RA. You will be tireder, more hormonally effected, if a trauma happens in life it will effect you more, over time your muscles tend to weaken, the tendons have problems, you struggle with wearing things like heels, you get down more easily, someone knocks a joint and it hurts WAY more than it should do. Your body is doing its best to fight off this nasty immune disease which is hell bent on chewing your joints and other bits and if you pile on the pressure on yourself with a full time job plus- something is going to give- and I dont want it to be LOVELY YOU!!!!!
Im not saying everyone should give up working immediately on diagnosis. I worked very very hard at keeping my job for a long time with severe RA, but someone sat me down and explained that keeping active and balancing things was really important.
You are going to have to really think about the job you do and how long you can do it at the rate you are. In primary teaching I changed to doing older children as I knew I would struggle to do all the shoes and little chairs etc. So I took the training courses and changed to doing older ones. Which I loved. I did part time until I physically kept falling down and was completely useless once I came home after just 2 days in the classroom.
Once or twice I have met people who are in remission but this seems rare to me.
I think Barb, it is time to see an Occupational therapist or a Health Psychologist to talk about this stuff. Accepting that you have a chronic, debilitating diseases is really hard. Most people have grumbling disease that is always there in the background and really bites you hard from time to time.
You need to pace yourself in away you have not had to do before.
I do hope you do well on this drug- I really do and I hope I havent been too harsh on this post but going to see a dr just because he said something you wanted to hear is not always the answer to good treatment in my experience.
Be kind to yourself and that body of yours- it really is trying its best!
Love
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Jenni, yes, I know deep down you are right, and as you say its what I wanted to hear from the consultant. I think because the pred has been working so far, just gone down to 15mg today and tomorrow and then Friday on 5mg on regular basis I feel so much better. I can only see how it goes, I know I am probably fooling myself, and will have to admit defeat at some point, but for now I will keep trying. It means alot to me at the moment to keep going, to feel that I am useful, and I think also I am terrified of not being able to work, and being home all the time. I totally understand what you are saying, and why you stopped being with the little ones. Thank you for bringing me down to earth!! Sometimes its a logical mind, and a kick up the bum we need!! I hope you are doing ok, and that Gemma is now getting what was promised, and that Bernice is well again, take care x BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Jenni, I did mean to ask about seeing an OT at my last visit to the rheumy, but it was such a rush I forgot. Do I need to go through the GP? Thank you x BARBARA
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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Hi Barbara I just wanted to add my two penny worth from my experience of this yukky disease!! What Jenni says is spot on and she knows from her vast experience of this debilitating illness. What I would say is if it is at all possible do try to hold onto your working life as long as you can even if it means adapting along the way. It's the one thing that keeps you in touch with daily life and reality. As you say it is important to your general well being that you feel useful. The modern range of drugs are now so good that more and more people are able to continue a comparatively normal lifestyle with possibly only minimal joint damage. Unfortunately for people like Jenni, myself and others on the forum who were diagnosed yonks ago, before the availability of such wonderful drugs, we suffer the consequences of a cruddy disease. I felt fortunate, at the time, that I was retired on ill health at the age of 31, (although I had worked really hard to get to a management position) because I got to spend time with my young family; something I couldn't have considered whilst employed. However my youngest, of four, is now 15 and I feel redundant. I spend a lot of time doing volunteer work when I am able but it doesn't match having a career and a job to go to on a daily basis. It serves only to remind me that I am different, living with a disease that is incurable. That said I try to remain optimistic with a positive attitude towards life (despite the constant reminders; daily mounds of pills, twice weekly injections and monthly bloods etc...!). We all want to hear positivity from our medics and many of them are extremely good. Mild RA can be controlled with the right drugs it's a case of finding the combination that is right for you. You must keep trying and hoping for a good outcome. Defeat should not even be a consideration! Just to add, although you weren't asking me, I got my OT appointment through my GP. Things might have changed though it was a while ago! Take care, Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Thanks Lyn, will look into the OT appt. Thank youf or your support re working. I know from my mum's damage to her feet and hands what the disease can and does do. She was only 17 when diagnosed and spent 3 months in hospital unable to walk, the only med was aspirin. The meds now are of course much better and hopefully do help much more. Will hope for the best anyway x BARBARA
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