Category Archives: Members posts

Forum

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This is just to let you know that we have set up a discussion forum for the Birdshot Uveitis Society.  You have to go to the forum and register there, before you can  sign in and participate.   (Also if you have any difficulties signing up, tell us you want to, and we can do this for you.)

We want it to be a private area where people can discuss issues and chat to other members so that you can become more involved in this growing community.

Currently we have over 180 members registered on our database.  The membership comprises patients, supporters, relatives, and professionals.

We need your help with this. The forum is going to take a bit of time and your input to develop to see if it is something that you want and value, and works easily and efficiently for you. Please log on and leave your discussion threads and then feed back to us what works well and what doesn’t so we can improve and develop it.  We hope you want to sign up and tell us what you would like us to do for you!

To get to the forum, click on the Birdshot logo on the right of the main page.  To get back to the main Birdshot site, click on the logo at the top of the forum page, and you will find yourself back here.

Annie and Rea

Immunsuppressants and bad cold – advice please!

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Real Ale has quite a nasty cold at the moment and wants to know if he will recover more quickly if he stops taking his immunosuppresant for a few days. This question could also apply to people who have caught the flu and/or have other infections. He suspects it won’t make any difference because of the amount of time it takes to suppress the immune system in the first place. None the less he is tempted by the idea of a faster recovery. Does anybody have any thoughts on the idea  and has anybody actually tried doing this?

Hospitals failure to communicate with GP

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Has anyone had the same problems as Real Ale?

Recently his consultant changed his immunosuppressant from Azathioprine to Cellcept (mycophenolate moefetil). He collected his prescription from the hospital pharmacy. This was fine until he nearly ran out and asked his GP for a renewal.

His GP refused to prescribe it (Cellcept) as he hadn’t received a letter from his consultant. His GP, through his surgery, asked him to ask the consultant for a letter explaining why he was now on Cellcept and the dosage. The consultant duly responded and confirmed that he was on 500mg of Cellcept twice a day. Except Real Ale wasn’t. He had been upped to 750mg twice a day… and so his doctor refused to renew the prescription until he had a letter confirming this… Real Ale suggested to his surgery that he could explain to the doctor why he was on this medication and how he should be monitored and what tests were needed. This offer was declined and Real Ale had to write once again to his consultant asking for all this to be made explicit.

In fact it was nearly four weeks before Real Ale was able to get his prescription for Cellcept sorted out. It seems he was a victim of the ‘Shared Care’ protocols which specify (or should) the respective roles of one’s own GP and the consultant in the management of a patient’s condition.

It seems to me that this might be a common problem. I had a battle with my own GP in the beginning, until my consultant very kindly rang him up and explained – the GP had said it was down to the consultant to get in touch with him when I suggested he phone the consultant up, not the other way around! This required phone calls and faxes from me to my consultant’s secretary before the necessary conversation took place.

Our  message to patients is be persistent, you are the only one who can sort the problem out even if you have to act as go between… And if your consultant has promised to write to your GP check that your GP has actually received it!

Experience of IViG treatment?

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Has any one experience of being given IViG for their Birdshot?  We have a member asking us for information about experiences with this form of treatment and how successful it has been.

It would be really interesting and helpful for us to know about individual personal experiences of IviG treatment.  It has been successfully trialled in France for Birdshot but we’d like to obtain more first hand information as, in our view there is nothing to beat that.

Thanks!  We look forward to hearing from anyone who might be able to help this member.

Annie and Rea

I'm new to BUS

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Hello all

I’m new to this forum and don’t have Birdshot, rather I have Still’s – aka juvenile rheumatoid arthritis + uveitis. But I am very relieved to find this forum, and will post more elsewhere in more detail if anyone is interested, as I am happy to share my experience with long-term use of oral prednisolone. Continue reading →

Steroid induced hump

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Here is a question that a new member Vicky asked us to pose to see if anyone has any useful advice for her.  This is what she says:-

“Do any of you suffer from a hump?

Is there anything I can do to help with this?

To anyone else I guess this would sound ridiculous – but I’m hoping you know what I mean.

I find it quite distressing that my face has changed shape and that I now have a hump on the back of my neck, I understand that this is a side effect of the steroid usage but I was wondering if there were any members who have the same thing and have any tips for helping with this?”

Both Rea and I see chiropractors in our efforts to stay straight, improve our posture and reduce aches and pains that these drugs seem to inflict upon us, but we’d be interested to know if members know of other things that can help alleviate this particular problem.

Thanks

Birdshot and Complementary Therapies

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When faced with the news that you have been diagnosed with not only a rare eye disease but one where the prognosis is not good for the future, it is easy to see how you can feel as if your world has been turned upside down.   In some ways it can be looked upon as losing control of what is going on in it.

After being given details of the various medications (and their side effects) which may or may not work, it is almost certain that your emotions and thoughts are going to change – positive one minute and negative the next.  This in turn will have an affect on the physical body especially if one begins to feel helpless in this situation. Continue reading →

Help needed with invitreal injections!

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Dave, a registered member of BUS has recently written  to us asking for our members help.   He wants to hear from people who have had experience of invitreal steroid injections as the current steroid treatment he is on isn’t dealing with his inflammation.

Can anyone give him guidance on what to expect and what their experience was of this procedure?

We are happy for you to post comments below or if you want to get in touch with him via birdshot@live.co.uk we will be happy to pass on your experiences to him if you don’t want to do this publicly via the comments section of the website.

Hope someone is able to provide him with info about their first hand experiences of this.

Thanks

Annie and Rea

Coming out at work

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This post has been written by Adrian,  a member of the Birdshot Uveitis Society.

Dear All,

I thought I’d write a post about the Disability Discrimination Act 1995 (DDA),  sharing  my own experience at work.

To gain protection under the DDA you must normally have a disability.  It is for you to provide the evidence that establishes that you have a disability.

The effect of a disability is not always obvious in the workplace. There are a number of conditions that can amount to a disability but aren’t always recognised, such as fibromyalgia, depression, dyslexia, etc.

Someone is defined as having a disability (for the purposes of the DDA) if they have “a physical or mental impairment which has a substantial and long term adverse effect on her/his ability to carry out normal day-to-day activities.” Continue reading →

Battle to find Cellcept

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Rea has just had another battle to get hold of cellcept. Usual story – all supplies used up. She finally got it from her very local, small pharmacist who is now trying to find further stocks for her and one other patient they have on cellcept. Rea is not alone. Annie’s pharmacist has experienced a recurrent problem getting hold of the pills, but he has, up to now, never let her down.

The difficulty seems to be that wholesalers use up their quota of cellcept quite quickly. Smaller pharmacists seem, in our experience, much more willing to order direct from Roche (the manufacturer of Cellcept), if the wholesalers have used up their supplies. Smaller pharmacists are, in our opinion, also able to build up a relationship with their customers and understand their illness, and the complications inherent in each type of medication their customers are using. As Rea said: ‘My local pharmacist spends a lot of time with me, working out when I am next likely to need medication, and trying to ensure that the medication will be readily available’.

If faced with a problem in getting hold of cellcept, BUS recommends that it is best to build up a relationship with a local pharmacist rather than rely on the larger chemists who don’t apparently understand the difficulties for people with Birdshot when they do not have access to their prescribed brand of immuno-suppressant.

One person we know was told by the “large chemist”, to just ask your GP to prescribe a different immuno-suppressant!

Annie always tries to make sure she has at least two weeks of pills left when she requests her repeat prescription to allow her pharmacist enough time to hunt down a supply.

Do others encounter this difficulty? Perhaps we need to draw the problem to the attention of Roche. What do you think?