DustyKat
Super Moderator
- Joined
- May 8, 2010
- Messages
- 25,247
Wow, didn’t realise how long it had been since I have visited. 
So S, now 28, moved from Japan to the US at the beginning of 2018 and by the end of the year she was flaring.
She had not been on medication for about 9 years. Suffice it to say the first GI/practice was hopeless. In December of that year they put her on Pred and a 5ASA as a monotherapy. Advised her to get out of there ASAP but by the time she was able to get things sorted she ended up being on Pred for 5-6 months. 
New GI commenced her on Humira at about the 3 month mark. All good with the Crohn’s side of things now.
Now, at the time of the flare she had symptoms that persisted throughout and following the settling of her intestinal symptoms and they became progressively worse. The symptoms were joint pain that was bad enough she could not walk up stairs, sore eyes to the point that on some days she could not drive, and excessive hair loss.
She went to the GI and Opthalomologists numerous times to no avail and was awaiting a rheumatology appointment. By now it was August 2019. To say I was worried would be an understatement especially with her being so far away. I wanted her to come home for review and she did that month.
Once home the GP ran all the usual tests we normally do for her Crohn’s plus some extras as one of the Opthalmologists queried Sjogrens. All returned normal except for one. Everything pointed to her Crohn’s being in clinical remission with the one outlier being her Vit D, it was low. Not exceptionally so when looking at NRR but I think they are set too low in the context of chronic disease.
Given the severity of her symptoms I was doubtful but hopeful that Vit D would be the answer so she started taking 10,000 units a day. Fast forward to 3 months later, November 2019, and all the persisting symptoms had resolved. She said she felt like she had gone from an 87 year old to a 27 year old
I have stressed to her that she needs to be the manager of her health especially as the system there is different to ours, it is more fragmented. That she co ordinate her care and stay on top of results. It turned out that when they did her Vit D in Dec 2018 it was undectable, they didn’t tell her that just that it was a bit low. They supplemented for a few weeks and then no follow up, no repeat blood test, no nothing. Grrrrrrrrrr.
Main thing is all has remained under control since.
I hope you are all coping okay particularly in these very trying times. I do feel for you all and think of you often and hope for those in the US you soon see an end to the devastating COVID figures.
So S, now 28, moved from Japan to the US at the beginning of 2018 and by the end of the year she was flaring.
She had not been on medication for about 9 years. Suffice it to say the first GI/practice was hopeless. In December of that year they put her on Pred and a 5ASA as a monotherapy. Advised her to get out of there ASAP but by the time she was able to get things sorted she ended up being on Pred for 5-6 months. New GI commenced her on Humira at about the 3 month mark. All good with the Crohn’s side of things now.
Now, at the time of the flare she had symptoms that persisted throughout and following the settling of her intestinal symptoms and they became progressively worse. The symptoms were joint pain that was bad enough she could not walk up stairs, sore eyes to the point that on some days she could not drive, and excessive hair loss.
She went to the GI and Opthalomologists numerous times to no avail and was awaiting a rheumatology appointment. By now it was August 2019. To say I was worried would be an understatement especially with her being so far away. I wanted her to come home for review and she did that month.
Once home the GP ran all the usual tests we normally do for her Crohn’s plus some extras as one of the Opthalmologists queried Sjogrens. All returned normal except for one. Everything pointed to her Crohn’s being in clinical remission with the one outlier being her Vit D, it was low. Not exceptionally so when looking at NRR but I think they are set too low in the context of chronic disease.
Given the severity of her symptoms I was doubtful but hopeful that Vit D would be the answer so she started taking 10,000 units a day. Fast forward to 3 months later, November 2019, and all the persisting symptoms had resolved. She said she felt like she had gone from an 87 year old to a 27 year old
I have stressed to her that she needs to be the manager of her health especially as the system there is different to ours, it is more fragmented. That she co ordinate her care and stay on top of results. It turned out that when they did her Vit D in Dec 2018 it was undectable, they didn’t tell her that just that it was a bit low. They supplemented for a few weeks and then no follow up, no repeat blood test, no nothing. Grrrrrrrrrr.
Main thing is all has remained under control since.
I hope you are all coping okay particularly in these very trying times. I do feel for you all and think of you often and hope for those in the US you soon see an end to the devastating COVID figures.
