mdewees

Hi Rocco, I am so interested in anything you can share because I was diagnosed with same rare side effect.  I am the only person on this trial to have this side effect and the doctors are struggling because there are only about 3 cases documented, one of which is yours.  They actually just closed the arm of the clinical trial I was on (high dose IPI for Stage 3B patients based on my reported side effects 3 days ago).  I am receiving treatment at PENN.  Was originally diagnosed with swelling of the pituitary gland and scleritis – also given topical drops but had 1 day IV and then oral steroids for pituitary gland.  Eyes improved for 3 days but then got really bad especially as they tapered to 60mg prednisone.  Got put back on 1G IV for 3 days and now on 100mg prednisone.  Swelling and pain decreased but still major issues with double vision and vertigo / continue to have Grave's like response (can only see if I patch left eye and that really only works when I am still – when up and about I still get dizzy even with eye patched),  but do not test positive for Grave's antibodies (pituitary gland seems to have resolved).  All Thyroid tests are within normal limits now accept TSH and TRAB which are low – I am also on 100mg of synthroid.  I was just hospitalized 3 days ago for left side facial and neck numbing / decreased sensitivity.  They are trying to determine if related to Grave's or if this is a new symptom related to neuropathy.  

Your story is inspiring!  It looks like it has been a long road but I would be so interested in anything you can share about your treatment, doctors that were knowledgeable or helpful, how you coped – any resources.  I am only 39 years old with 2 young girls and an amazing husband so I am very eager to do whatever it takes to work through this!

Thanks so much!

Melissa   

Hi Rocco, I am so interested in anything you can share because I was diagnosed with same rare side effect.  I am the only person on this trial to have this side effect and the doctors are struggling because there are only about 3 cases documented, one of which is yours.  They actually just closed the arm of the clinical trial I was on (high dose IPI for Stage 3B patients based on my reported side effects 3 days ago).  I am receiving treatment at PENN.  Was originally diagnosed with swelling of the pituitary gland and scleritis – also given topical drops but had 1 day IV and then oral steroids for pituitary gland.  Eyes improved for 3 days but then got really bad especially as they tapered to 60mg prednisone.  Got put back on 1G IV for 3 days and now on 100mg prednisone.  Swelling and pain decreased but still major issues with double vision and vertigo / continue to have Grave's like response (can only see if I patch left eye and that really only works when I am still – when up and about I still get dizzy even with eye patched),  but do not test positive for Grave's antibodies (pituitary gland seems to have resolved).  All Thyroid tests are within normal limits now accept TSH and TRAB which are low – I am also on 100mg of synthroid.  I was just hospitalized 3 days ago for left side facial and neck numbing / decreased sensitivity.  They are trying to determine if related to Grave's or if this is a new symptom related to neuropathy.  

Your story is inspiring!  It looks like it has been a long road but I would be so interested in anything you can share about your treatment, doctors that were knowledgeable or helpful, how you coped – any resources.  I am only 39 years old with 2 young girls and an amazing husband so I am very eager to do whatever it takes to work through this!

Thanks so much!

Melissa   

Hi Rocco, I am so interested in anything you can share because I was diagnosed with same rare side effect.  I am the only person on this trial to have this side effect and the doctors are struggling because there are only about 3 cases documented, one of which is yours.  They actually just closed the arm of the clinical trial I was on (high dose IPI for Stage 3B patients based on my reported side effects 3 days ago).  I am receiving treatment at PENN.  Was originally diagnosed with swelling of the pituitary gland and scleritis – also given topical drops but had 1 day IV and then oral steroids for pituitary gland.  Eyes improved for 3 days but then got really bad especially as they tapered to 60mg prednisone.  Got put back on 1G IV for 3 days and now on 100mg prednisone.  Swelling and pain decreased but still major issues with double vision and vertigo / continue to have Grave's like response (can only see if I patch left eye and that really only works when I am still – when up and about I still get dizzy even with eye patched),  but do not test positive for Grave's antibodies (pituitary gland seems to have resolved).  All Thyroid tests are within normal limits now accept TSH and TRAB which are low – I am also on 100mg of synthroid.  I was just hospitalized 3 days ago for left side facial and neck numbing / decreased sensitivity.  They are trying to determine if related to Grave's or if this is a new symptom related to neuropathy.  

Your story is inspiring!  It looks like it has been a long road but I would be so interested in anything you can share about your treatment, doctors that were knowledgeable or helpful, how you coped – any resources.  I am only 39 years old with 2 young girls and an amazing husband so I am very eager to do whatever it takes to work through this!

Thanks so much!

Melissa   

Hi Luke, I am very interested in your story and any info you can share.  I was diagnosed with this same rare side effect (Graves Disease of the eyes yesterday at PENN).  I am in a clinical trial (Stage 3B) and got assigned to high dose 10mg/kg and decompensated quickly after 3rd dose.  Was hospitalized for severe headaches and vomitting (along with eye pain and mild swlling which was originally diagnosed as sceritis) and they found that my Pituitary Glad was swollen.  Cortizol dropped to 2 and mild hypothyroidism and slightly low sodium level.  Was put on high dose steroids but when they tried to taper headaches increased and eyes got really bad (bulging from head and lost ability to tack and move eye muscles).  No one seemed to be able to figure out what was going on.  Had an amazing day at PENN yesterday (there from 8am-9:30 pm where they worked in conjunction with a Endochronologist and and Neurooptomologist and did a full workup) – It feels so good to finally have a diagnosis, however I am nervous because although they have treated 12 patients with the Pituitary/Thyroid response I am the first to be diagnosed with Graves's eye disease.  Any feedback or resources would be so appreciated!!!!!

Thanks so much!

Melissa

Hi Luke, I am very interested in your story and any info you can share.  I was diagnosed with this same rare side effect (Graves Disease of the eyes yesterday at PENN).  I am in a clinical trial (Stage 3B) and got assigned to high dose 10mg/kg and decompensated quickly after 3rd dose.  Was hospitalized for severe headaches and vomitting (along with eye pain and mild swlling which was originally diagnosed as sceritis) and they found that my Pituitary Glad was swollen.  Cortizol dropped to 2 and mild hypothyroidism and slightly low sodium level.  Was put on high dose steroids but when they tried to taper headaches increased and eyes got really bad (bulging from head and lost ability to tack and move eye muscles).  No one seemed to be able to figure out what was going on.  Had an amazing day at PENN yesterday (there from 8am-9:30 pm where they worked in conjunction with a Endochronologist and and Neurooptomologist and did a full workup) – It feels so good to finally have a diagnosis, however I am nervous because although they have treated 12 patients with the Pituitary/Thyroid response I am the first to be diagnosed with Graves's eye disease.  Any feedback or resources would be so appreciated!!!!!

Thanks so much!

Melissa

Hi Luke, I am very interested in your story and any info you can share.  I was diagnosed with this same rare side effect (Graves Disease of the eyes yesterday at PENN).  I am in a clinical trial (Stage 3B) and got assigned to high dose 10mg/kg and decompensated quickly after 3rd dose.  Was hospitalized for severe headaches and vomitting (along with eye pain and mild swlling which was originally diagnosed as sceritis) and they found that my Pituitary Glad was swollen.  Cortizol dropped to 2 and mild hypothyroidism and slightly low sodium level.  Was put on high dose steroids but when they tried to taper headaches increased and eyes got really bad (bulging from head and lost ability to tack and move eye muscles).  No one seemed to be able to figure out what was going on.  Had an amazing day at PENN yesterday (there from 8am-9:30 pm where they worked in conjunction with a Endochronologist and and Neurooptomologist and did a full workup) – It feels so good to finally have a diagnosis, however I am nervous because although they have treated 12 patients with the Pituitary/Thyroid response I am the first to be diagnosed with Graves's eye disease.  Any feedback or resources would be so appreciated!!!!!

Thanks so much!

Melissa