Comments for Birdshot Uveitis Society http://birdshot.org.uk A support group for people with the rare, hard-to treat, autoimmune, posterior uveitis called Birdshot Chorioretinopathy Tue, 01 May 2012 19:10:51 +0000 hourly 1 http://wordpress.org/?v=3.3.2 Comment on Bisphosphonates (Alendronic Acid) and possible side effects by Madeleine Fisher-Kern http://birdshot.org.uk/9573#comment-687 Madeleine Fisher-Kern Tue, 01 May 2012 19:10:51 +0000 http://birdshot.org.uk/?p=9573#comment-687 I was put on Bisphosphonates (Alendronic Acid) for bone thinning shortly prior to being diagnosed with Birdshot. I was wondering if there was a chance that Fosamax +D was the instigator of this once dormant condition? I was put on Bisphosphonates (Alendronic Acid) for bone thinning shortly prior to being diagnosed with Birdshot. I was wondering if there was a chance that Fosamax +D was the instigator of this once dormant condition?

]]> Comment on Government Rare Disease Plan – Consultation by Birdshot Uveitis Society on Facebook http://birdshot.org.uk/9599#comment-656 Birdshot Uveitis Society on Facebook Wed, 18 Apr 2012 23:58:08 +0000 http://birdshot.org.uk/?p=9599#comment-656 Sorry, I should have said it is the UK plan. Applies only in the UK. Rea Sorry, I should have said it is the UK plan. Applies only in the UK. Rea

]]> Comment on Government Rare Disease Plan – Consultation by Lynn Horwath Yankloski on Facebook http://birdshot.org.uk/9599#comment-655 Lynn Horwath Yankloski on Facebook Wed, 18 Apr 2012 23:24:11 +0000 http://birdshot.org.uk/?p=9599#comment-655 Is this plan only for patients in the UK or would it include those of us in the USA? Is this plan only for patients in the UK or would it include those of us in the USA?

]]> Comment on Bisphosphonates (Alendronic Acid) and possible side effects by Birdshot Uveitis Society on Facebook http://birdshot.org.uk/9573#comment-648 Birdshot Uveitis Society on Facebook Sat, 14 Apr 2012 22:13:25 +0000 http://birdshot.org.uk/?p=9573#comment-648 Hi Ann There is research to show that the use of alendronic acid should be constantly evaluated for risks and benefits, particularly after five years. We have posted about this research on BUS before. You can find the post be searching for alendronic acid. Some consultants believe that the benefits outweigh the risks of continuing on alendronic acid for longer, if you are on steroids. Others disagree. I think you need all the information from your consultant so that you and your consultant can make a decision. If you are not at risk of bone thinning or bone fragility, it is likely you will not be prescribed alendronic acid beyond the five years. Always difficult, these complex medication regimes! Rea Hi Ann
There is research to show that the use of alendronic acid should be constantly evaluated for risks and benefits, particularly after five years. We have posted about this research on BUS before. You can find the post be searching for alendronic acid. Some consultants believe that the benefits outweigh the risks of continuing on alendronic acid for longer, if you are on steroids. Others disagree. I think you need all the information from your consultant so that you and your consultant can make a decision. If you are not at risk of bone thinning or bone fragility, it is likely you will not be prescribed alendronic acid beyond the five years. Always difficult, these complex medication regimes!

Rea

]]> Comment on Bisphosphonates (Alendronic Acid) and possible side effects by Ann Hobbs on Facebook http://birdshot.org.uk/9573#comment-646 Ann Hobbs on Facebook Sat, 14 Apr 2012 11:03:25 +0000 http://birdshot.org.uk/?p=9573#comment-646 My understanding is that the Alendronic Acid is only prescribed for 5 years max. So what happens after that. I am in year three now and thus far not noticed any side effects TG. My understanding is that the Alendronic Acid is only prescribed for 5 years max. So what happens after that. I am in year three now and thus far not noticed any side effects TG.

]]> Comment on Birdshot shock by Rea http://birdshot.org.uk/9400#comment-642 Rea Fri, 13 Apr 2012 00:55:21 +0000 http://birdshot.org.uk/?p=9400#comment-642 Thanks for your comment Lauren - it is really moving. Keep talking too! It is the best way to be in control of this disease rather than letting it control you. Rea Thanks for your comment Lauren – it is really moving. Keep talking too! It is the best way to be in control of this disease rather than letting it control you.

Rea

]]> Comment on Food Poisoning and autoimmune diseases by Rea http://birdshot.org.uk/9533#comment-641 Rea Wed, 11 Apr 2012 19:34:57 +0000 http://birdshot.org.uk/?p=9533#comment-641 See the new post I have just added on micro organisms - we are really beginning to piece together some of the 'triggers' for Birdshot, and how our own genetic make-up, our diet and stress plays a part. Rea See the new post I have just added on micro organisms – we are really beginning to piece together some of the ‘triggers’ for Birdshot, and how our own genetic make-up, our diet and stress plays a part.

Rea

]]> Comment on Food Poisoning and autoimmune diseases by Rea http://birdshot.org.uk/9533#comment-631 Rea Sun, 01 Apr 2012 19:16:13 +0000 http://birdshot.org.uk/?p=9533#comment-631 Hi Jane Your story sounds very similar to mine, and you started your symptoms and got your diagnosis exactly one year after me! We are getting quite a large response to this post, so it may be a fruitful area for research. Rea Hi Jane

Your story sounds very similar to mine, and you started your symptoms and got your diagnosis exactly one year after me! We are getting quite a large response to this post, so it may be a fruitful area for research.

Rea

]]> Comment on Food Poisoning and autoimmune diseases by hamamelis http://birdshot.org.uk/9533#comment-630 hamamelis Sat, 31 Mar 2012 20:18:37 +0000 http://birdshot.org.uk/?p=9533#comment-630 Thanks. March 2009: labyrinthitis, possibly viral, with persistent fatigue (several weeks) and some visual symptoms, including flickering vision, which cleared and did not return. Dec 2009: ?norovirus sickness and diarrhoea, persistent fatigue for ten days. Feb 2010: optician-measured visual fields showed area not responding, left eye. Oct 2010: birdshot diagnosed when attending hospital for routine eye pressure checks. Thanks. March 2009: labyrinthitis, possibly viral, with persistent fatigue (several weeks) and some visual symptoms, including flickering vision, which cleared and did not return. Dec 2009: ?norovirus sickness and diarrhoea, persistent fatigue for ten days. Feb 2010: optician-measured visual fields showed area not responding, left eye. Oct 2010: birdshot diagnosed when attending hospital for routine eye pressure checks.

]]> Comment on Food Poisoning and autoimmune diseases by Annie http://birdshot.org.uk/9533#comment-629 Annie Sat, 31 Mar 2012 10:28:34 +0000 http://birdshot.org.uk/?p=9533#comment-629 Apologies that was a link to their news feed. I have amended now. http://www.dailymail.co.uk/health/article-2117948/Food-poisoning-lifelong-consequences-bugs-linked-host-illnesses.html. To find it I simply googled Fiona McCrae Daily Mail Food Poisoning and it came up top of the list! Apologies that was a link to their news feed. I have amended now. http://www.dailymail.co.uk/health/article-2117948/Food-poisoning-lifelong-consequences-bugs-linked-host-illnesses.html. To find it I simply googled Fiona McCrae Daily Mail Food Poisoning and it came up top of the list!

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