Recently been approved for Cosentyx
#11
(Wed-29-06-2016, 15:11 PM)Fred Wrote:

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Good news Alex. I was due to go on it this week but the funding isn't in place yet.

Can I ask why you said "maintain my smell and taste" ?

Hi Fred, 

I hope the funding comes through for you soon. 

The reason is, Humira, although wonderful for clearing my skin, made me lose my sense of taste and smell within a month.- I mean 100% gone. I could only taste sweet, sour and salty but not any flavours. I had no smell at all either.   I didn't put two and two together (I had made other lifestyle changes at the same time too, such as exercising and quitting smoking) so I went a round a year without 2 senses! I had various tests and investigative procedures to try and figure out what was going on but by chance we discovered it to be an adverse reaction to the Humira (hence the change to Cosentyx!)
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#12
(Wed-29-06-2016, 15:28 PM)alex.BMW Wrote:

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(Wed-29-06-2016, 15:11 PM)Fred Wrote:

[To see links please register here]

Good news Alex. I was due to go on it this week but the funding isn't in place yet.

Can I ask why you said "maintain my smell and taste" ?

Hi Fred, 

I hope the funding comes through for you soon. 

The reason is, Humira, although wonderful for clearing my skin, made me lose my sense of taste and smell within a month.- I mean 100% gone. I could only taste sweet, sour and salty but not any flavours. I had no smell at all either.   I didn't put two and two together (I had made other lifestyle changes at the same time too, such as exercising and quitting smoking) so I went a round a year without 2 senses! I had various tests and investigative procedures to try and figure out what was going on but by chance we discovered it to be an adverse reaction to the Humira (hence the change to Cosentyx!)

That's interesting, I lost my sense of smell a couple of years ago. But they have confirmed it was nothing to do with the Bio's and was due to a bad bought of the flu. Unfortunately for me they have also confirmed it won't come back, though I still do have some taste.

I thought there may have a link, but your situation looks different to mine.

Yes the funding will get there, but I'm not to bad on Stelara for now and hadn't planned on changing till the end of the year.

I'll be watching your progress with interest.

Good luck. Thumb
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#13
(Wed-29-06-2016, 15:35 PM)Fred Wrote:

[To see links please register here]

(Wed-29-06-2016, 15:28 PM)alex.BMW Wrote:

[To see links please register here]

(Wed-29-06-2016, 15:11 PM)Fred Wrote:

[To see links please register here]

Good news Alex. I was due to go on it this week but the funding isn't in place yet.

Can I ask why you said "maintain my smell and taste" ?

Hi Fred, 

I hope the funding comes through for you soon. 

The reason is, Humira, although wonderful for clearing my skin, made me lose my sense of taste and smell within a month.- I mean 100% gone. I could only taste sweet, sour and salty but not any flavours. I had no smell at all either.   I didn't put two and two together (I had made other lifestyle changes at the same time too, such as exercising and quitting smoking) so I went a round a year without 2 senses! I had various tests and investigative procedures to try and figure out what was going on but by chance we discovered it to be an adverse reaction to the Humira (hence the change to Cosentyx!)

That's interesting, I lost my sense of smell a couple of years ago. But they have confirmed it was nothing to do with the Bio's and was due to a bad bought of the flu. Unfortunately for me they have also confirmed it won't come back, though I still do have some taste.

I thought there may have a link, but your situation looks different to mine.

Yes the funding will get there, but I'm not to bad on Stelara for now and hadn't planned on changing till the end of the year.

I'll be watching your progress with interest.

Good luck.  Thumb

Interesting indeed.  I mean, I came off the Bio around 3 months ago now and my taste and smell is 90% back.  It started to creep back after around a month so at that point i knew it was the Humira. 

Worth maybe having a trial gap if you can bear it. 

Alex
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#14
(Wed-29-06-2016, 15:42 PM)alex.BMW Wrote:

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 Worth maybe having a trial gap if you can bear it. 

I did ask about that, but they have done hundreds of tests on me and confirmed that I have Anosmia and it's very unlikely from the test results to come back and I just have to live with it. But hey ho life could be worse.
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#15
Good luck with your cosentyx, Alex. I read lots of good reports about it here. My sense of taste goes off for a bit (flavours, not decoration) when I take DMF. It also makes my nose run for a while.
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#16
(Thu-30-06-2016, 09:20 AM)Bill Wrote:

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Good luck with your cosentyx, Alex. I read lots of good reports about it here. My sense of taste goes off for a bit (flavours, not decoration) when I take DMF. It also makes my nose run for a while.

Thanks Bill. Do you find it comes back quite quickly?
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#17
Very short lived. Perhaps an hour or two only. I will take a bit more notice when I take my next dose. Curious.
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#18
Update! I have completed my 4 / 5 loading doses and am already 95% clear. P has gone from my face and arms and torso too. Very happy. 

I get a stuffy nose a day or two after injecting, but overall, side effect free.  I have still got my sense of taste and smell too. Win!
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#19
(Mon-01-08-2016, 11:48 AM)alex.BMW Wrote:

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Update! I have completed my 4 / 5 loading doses and am already 95% clear. P has gone from my face and arms and torso too. Very happy. 

I get a stuffy nose a day or two after injecting, but overall, side effect free.  I have still got my sense of taste and smell too. Win!

That's great news Alex. You must be delighted to have achieved virtual clearance on Cosentyx
I guess a stuffy nose is a good trade off for a clear skin
Good luck I will keep following your progress with great interest  Thumb
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#20
Welcome Alex.....  look forward to hearing your progress on the new treatment x
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