Otezla and rash

[Duncan]

Used Otezla for 5 weeks now. No bad side effects. Had them all very mild and all cleared.
I now have started with a bad rash. Mainly at the top of my legs. I also have it behind my knees, behind my elbows, under arms. Every where my skin folds ( other than top of legs). Didnt bother me at first. Slight itch. Its now a tad irritating, at times. Sometimes its like when you get burnt in the sun. Other times I forget I have it. Had it for about 2 weeks now. Telephoned Hospital and she said to continue if I can. It was the nurse I spoke to.
Today I feel a bit bad. Like mild sun stroke. Then it clears. I can cope with it if I know it will clear. Its listed as a side effect but what I want to know is, Has anyone here had a rash that has cleared?
If my body gets used to it and clears, that's fine. If its a allergic reaction, then not

[Fred]

Yes it is listed as one of the side effects, but a "most common" one so you could just be unlucky and it could pass.

Best to keep some notes and take them with you to your next appointment. But I don't think a Nurse is best suited to give you answers.

Most rashes will clear after a couple of weeks but if it is still there or gets worse then you should get it looked at.

Another thing is, sometimes our bodies take a while to settle down to a new treatment so it could just be a matter of waiting and see.

*But always get any rash checked out by a professional if you are not sure.

[Kat]

I agree with Fred, and if you are unsure then I'd get back to the doctor. You mention allergic reaction ... if you think AT ALL that the rash could be that then definitely check with your doctor!! Better to be safe.

[winjr]

This has been my experience with Otezla and rash.

Started off days 1 - 5 with 30 mg in the morning.  No evening dose.  On the evening of the 5th day, a rash broke out all over my chest.  By the following morning, the rash had spread everywhere - legs, arms, back.  I quite taking the Otezla immediately, the rash started to subside and 10 days later the rash was completely gone.

I started back up, very gradually.  I split the pills in half and took 15 mg every other day for about two weeks.  During the first week, I still would have a reaction of some sort, always different, but mild and it would go away within an hour.  When that stopped, I started taking 15 mg every morning, without any side effects.

I'm now taking 15 mg in the morning and 15 mg in the evening with no side effects.  The Otezla certainly seems to be working.  As of today, the plaques on my hands (I have PPP), are virtually non-existent, though probably a good part of that result is the just the natural tendency for flares to go in cycles.  Still, even 1-2 weeks ago, when plaques were forming, they were much more subdued than previously.

Bottom line, though, is don't do what I did.  I probably should have seen my dermatologist when the rash appeared.  You should, too.

[Duncan]

I went for my review after 8 weeks, 2 weeks on the full dose 30mg morning 30mg night.
 I showed her a picture of my rash, from my phone. She was quite shocked. I told her the nurse told me to try battle through it. She said she would have taken me off them but the nurse made the correct choice as it was clear.
I must admit, I went through hell and back but really wanted to give it a try as it was the only drug that did inflammation also.
Some days, I set off to work and felt so ill, I went home again. It was like sun stroke/ having a chest infection.
It all cleared just before seeing the consultant (6 weeks).

My head is now clear, but wasn't bad anyway.
Above my ears is clear.
My wrists are clear.
My hands are clear.
Other places are showing signs of reduction. Mainly the red skin around the bad parts. Upper torso.
Feet don't look no where near as red. No flaky skin.
My legs arnt doing as good but I can see results.

My consultant said, legs always take longer.
The Otezla sales rep said, you know when its working because the itching stops. I still get bad itches on my legs. The odd itch on my bum etc, but 80% less than it was.

Side effects:
 Feeling like death has now MAINLY gone. I still get the odd wave come over me but passes fast.
Sickness. I still get it. It didn't start until about 4 weeks in. Usually 1 hour after taking tablet.
The trots. This was the biggest and worst side effect for people. I was waiting from day 1 for the trots to start. It didn't really start until 7 weeks in. Last week ( week 9) was my worst. Usual morning trots but then after eating I would have to go again. Evening bowl movement was fine.
 Some times I would get massive stomach craps. Didn't last long. 1 week where it was bad

This is my first try at  systemic treatment. Couldn't use some as I  have high blood pressure. Now I can see it working I feel much happier. I just hope it continues to work. I have battled through hell to give it a chance

[Kat]

I'm glad it's working for you. That is a LOT to go through but it's good that you are finally seeing the benefits!

[jiml]

Great to read otezla is working for you,although the side effects at the start sounds horrendous thank goodness you are getting them less often now as your body adjusts to the drug
Hope you get clearance soon

[Caroline]

What does the word “trots” mean in this context?


Great that it is working!

[jiml]

What does the word “trots” mean in this context?


Great that it is working!

It's running to the loo urgently Caroline an English term

[Caroline]

What does the word “trots” mean in this context?


Great that it is working!

It's running to the loo urgently  Caroline   an English term

Ahhhh, could have never found that.