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.

To make a very long story short, very recently I came off the pred (I was on 20mg give or take a few mg for the better part of 30 years and have noticed a dramatic decrease in vision.

The short-term solution that has been suggestion is to try a triamcinolone injection.

So I read the above posts with interest. I had an intraocular injection as a child many years ago, and it was so distressing and clearly painful that my mother smacked the doctor.

I am now marginally more prepared thanks to your insight but have some concerns/thoughts which I thought I’d just throw out there.

1) I think I will take a little something to calm myself down ahead of time (I will ensure there are no contraindications)

2) I am concerned about the experiences of some posters re: pain/prolonged redness / soreness etc etc., as I was told it would be mildly uncomfortable but I would be “fine” by the next day. Hmmm.

3) Also concerned to hear about Liz’s experience with depression, as it is my understanding that direct injection has *none* of the side effects as oral meds – of which depression is definitely one.

4) I can particularly empathize with Liz’s comment about reading a book for pleasure – the very first sign I was losing my sight – and it really took me weeks to notice, because I just didn’t expect it, there were none of the normal signs of inflammation that I’ve had in the past – was that I just didn’t feel like reading and started making excuses.

I really hope the shot does the trick…

Maggie

This was posted as a comment for the post about invitreal injections, but I thought I would repost it here so that everyone sees it in case it got buried and unread!  Annie

“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

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.

Over the years as a therapist, I have seen many people with various ailments and diseases.  I have noticed that a great aid to the healing process occurs when clients feel that there is something that they can do for themselves instead of handing over control to someone else.

Complementary medicine or therapies are exactly as the name states – to complement and not replace orthodox medicine.  It is important that advice from a Doctor or Consultant is sought first in any instance rather than relying just on complementary treatments.

If we look at how Holistic Therapies work it can give a greater understanding to those seeking help in this way.  Holistic (meaning looking at the whole), focuses on not just the symptoms as with traditional medicine, but the whole body in a mental, emotional, physical and spiritual way.  This way it is possible to find one or more areas that may be out of balance that could be contributing to the physical symptom.

From a personal perspective, I know that the way we think and feel will most definitely create a physical reaction or symptom.  Over time ignoring these signs can lead to major diseases.  As an example you will be aware that just the thought of taking an exam – whether that is a driving test or written exam – the body produces physical reactions such as a feeling of nausea, butterflies in the stomach and ultimately several trips to the toilet.  All this from just a single thought.

Anger as an emotion can increase the heart rate, raise the blood pressure, tense the muscles and give a feeling of stress.  Again, all this from a single emotion.

We are constantly reacting to situations around us, and energetically this will influence how energy moves around the body.  It has been shown scientifically that energy is in all living things and Kirlian photography and electromagnetic readings have shown this.

If energy is blocked in a part of the body then physical signs will start to appear.  Many therapies involve the use of moving or clearing energy via meridians (pathways) to start to bring about the healing process. Ultimately Therapists are the catalysts and the person is healing themselves.

So how can Complementary Therapies help you in the situation you find yourself in?  Any therapy that assists in relaxing the body not only in a physical way but one which uplifts the spirit and gives you a part to play inevitably will help the healing process.

Massage, Reiki, Reflexology, Acupuncture, Acupressure and Meditation to name a few, all bring about a state of relaxation.  I have given a brief description of how some of these therapies work.

Massage

Gives the physical touch (which we all need), relaxes the body, is stimulating, relieves muscle tension, works on removing any swelling (maybe due to side effects of drugs) and gives a sense of wellbeing.

Reiki

This therapy works energetically by raising the vibrations of the body as a whole, on a physical, mental, emotional and spiritual level to bring about healing.  The recipient remains fully clothed and it is a relaxing and uplifting experience.  This is now available in some NHS Centres.

Reflexology

This therapy works on the feet or hands by using massage techniques that stimulate energy movement via meridians and zones that map the entire body.  In doing so the therapist can work on specific areas that are out of balance and has been shown to be effective with hormonal problems, IBS, lowering blood pressure, relaxing and relieving stress symptoms and many more.  This therapy is now available in some NHS Centres.

Facial Reflexology

This is a relatively new therapy that combines ancient healing methods from the Malpuche Indians, Vietnamese face mapping, acupressure points, neuroanatomy and Oriental meridians.  This therapy works as the name suggests over the face and head and has brought about some very quick results.  It is a relaxing treatment which also works on cranial lines and points.

Acupuncture

This therapy works by using needles that are inserted into the skin over meridian lines.  By stimulating these needles energy can be moved and blockages freed to assist the energy to move as it should around the body.  This treatment is now available at some NHS Centres.

Acupressure

This treatment works in a similar way to acupuncture but without the use of needles.

Meditation

There are many different forms of meditation that can take you to an altered state of awareness.  By stilling the mind and relaxing the body you are allowing the body to unwind from the stress and tension that is carried and continues to be present whilst in the alpha or active state of mind.  Simply by changing our breathing, or focusing on an object, the mind can become still and the change in brainwave patterns will lead to a more relaxed physical state allowing the body to be taken to a place of homeostasis or balance.

By using one or more of these therapies you are gaining self help and when including positive thinking you can be on the way to assisting your own wellbeing.

Ask yourself ‘What can I do to alleviate this situation?’ and feel the power.

Sue Rogers CThA, VTCT, ITEC

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

Saturday 11th September 2010

Doors open at 10.00 for coffee and registration and the conference ends at 16.45 – detailed programme to follow but the day will bring patients and professionals together to network, learn from each other, hear about the latest treatments, build a Birdshot community, lobby for better treatment and design a research programme for the future.

Presentations about Birdshot Chorioretinopathy and future treatments by leading consultants, inspirational speaker, Mike Brace of Vision 2020 (UK) ; an introduction to a possible model that could be used to improve treatment of Birdshot through the UK – Phil Hibbert (UIG); Rea Mattocks and Annie Folkard explaining how the Birdshot Uveitis Society came about and what they’d like to achieve from Birdshot Patient Days.

• There will be up-to-date news and information on new treatments
• Patient and consultants stories about treating birdshot
• Separate breakout groups
• A question and answer session

The conference, including lunch, is free,  as we have managed to obtain sponsorship but we do require a £20 refundable registration deposit. This can paid on line here (debit and credit card & PayPal).  We plan to have an informal social get-together afterwards, details to follow and these will depend on numbers interested.  Please contact us for details if you would like to join us for this  get together as well. ( birdshot@live.co.uk)  You can also apply for tickets by post. Cheques should be made payable to: Uveitis Information Group. You can download the form Patient-day-flyer , fill it in and send it to:

BUS PO Box 64996, London SW20 2BL

Please noted: if you are unemployed we will waive the deposit as we do not want people to be prevented from coming due to financial constraint.

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.”

Since the act was amended in 2005 , a person who has cancer, HIV infection or multiple sclerosis is deemed to have a disability from the point of diagnosis.  They won’t need to go on to show its effects.  Anyone who is certified or registered as blind or partially sighted is automatically covered.

If Birdshot isn’t affecting your ability to work and you can’t show its effects on you, then  your employer might say that he/she doesn’t have to consider you as having a disability from the point of your diagnosis, but only from the point it starts to ‘impair’ you.  I would counter this with the fact that progressive conditions amount to a disability,  if medical or statistical evidence indicates that they are more likely than not to have substantial adverse effect at some stage.  As Birdshot is a chronic and progressive disease your employer should err on the side of caution and treat you as an employee with a disability, even if they don’t have to make any immediate adjustments.

From the point of diagnosis, and before, I have been having appointments every four/six weeks at Moorfields and a week before each appointment I go in and give a blood sample.

When you are having such regular appointments it is difficult for your employer not to be aware that something is going on. When I received confirmation of the Birdshot I was immediately started on a high dose of Prednisolone and an immunosuppressant.

For a long time I had felt guilty about the number of appointments I was having and had got into the habit of disguising them through using my annual leave. The combined effect of the diagnosis and the Prednisolone was very stressful but I managed to hide my situation from my employer for nearly three months. There came a point however when I realised that I could no longer hide what was happening to me and so I calmly rehearsed my story and what I wanted to happen next.  I chose Friday late afternoon and met my boss, with the letter from Moorfields confirming the diagnosis and the medication prescribed. I promptly broke down and cried. It was hideous.

Once you have established that you have a disability the employer has to make ‘reasonable adjustments’ (failure to do so is a form of disability discrimination). This includes time off for rehabilitation, assessment, or treatment.

Later I was asked to state how the medication was affecting me. Below is essentially what I wrote but each person will be a bit different.In retrospect, it would have been more appropriate for me to have focused on the effects that the medication is having in terms of my performance in post. I have therefore summarised them as follows:

• My sleep pattern has changed in that I do not get the same deep sleep as previously. It takes me longer to get going in the morning.
• The steroids work by suppressing the adrenal glands which sit on top of the kidneys. This has caused me lower back pain.
• I have had periods of feeling nauseous
• I have periods of mental confusion and an inability to concentrate for long periods.
• My spelling and use of grammar has markedly deteriorated (but I think it is recovering).
• I have had periods of forgetfulness when I can’t quite remember what I was going to be doing.
• Tasks I would have completed on the day I complete several days later if I have an energy slump.
• I haven’t felt able to do as much  work in terms of slots as others, as working till seven and getting home at 8:30, has been really tough on the occasions I’ve done it.

On my current level of medication I would struggle to take on a role where I would be expected to initiate and co-ordinate projects, absorb a large amount of information quickly, plan training programmes, manage staff etc.”

Once you have disclosed to your employer you should ensure  that absences connected to your Birdshot are recorded separately from other absences.  Prednisolone and Azathioprine (in my case) reduce your immunity and make it more likely that you will pick up infections which  will also be longer lasting.  You should point this out to your employer.  I was told that the recovery time from an infection would be up to 50% longer than normal.  If I would normally be off with flu for two weeks, then now it would be three.

This matters because in a redundancy situation your employer could end up using sickness records as one of the criteria for selection.  If you have been off work a lot because of a compromised immune system your score on this measurement is going to look bad.  You’ll want to make sure that Human Resources factor this out so that you are not disadvantaged (or advantaged) in comparison to your fellow workers.

At some point I may well have to use Access to Work.   Access to Work is an organisation that can come into your workplace and carry out an assessment and help your employer to defray some of the costs of making reasonable adjustments.  It can also help you if you are unemployed or self-employed. This is a link giving more details.

I’m lucky in that my boss has been supportive (in a non-emotional practical way) and so has my company.  I am now considered as an employee with a disability.

Adrian

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’.

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?

If others have skills that they’d like to offer BUS, we’d be delighted to hear about them! Please do get in touch via birdshot@live.co.uk.

Happy New Year to everyone who has registered on the birdshot website and thanks so much for all the support and the enthusiastic feedback that we are getting.