Update on Embrel

[Jora]

The first week, I was sick the day after injection. The second week, I was sick on the evening of injection (which I had done in the morning). Being sick isn't nice, but it's doubly tiresome if the lead time is going to be inconsistent. I've also had a different pain in my hands; sort of stinging. I'm wondering if this is Embrel working or my body reacting against it.

The nurse is coming again on Friday, so of course I will be asking her. I must say, contrary to what I was expecting, I have had excellent service from HaH; the nurse even rang mid-week which I hadn't been expecting.

[nomoreheels]

It's so disappointing when a new med has this effect & is inconsistent to boot. I'm not on embrel so sorry I have nothing to offer you but empathy but do hope the HaH nurse has some helpful advice for you Jo. x

[Jora in reply to nomoreheels]

Thanks NMH. I've now come out in a rash , so am a bit suspicious. The heat doesn't help'. Too much for me, though some people love it, of course.

[nomoreheels in reply to Jora]

Oh no. Is this a listed side effect do you know? I know you'll be sensible but I'd watch the sun & try & keep cool & contact your Rheumy team/GP, just to rule out it's not heat rash, though as you say it does seem suspicious along with your other new problems. It could be if it's a drug that builds up in your system it's another reaction, as I say I don't know much about embrel never having needed to go that route, thankfully. Do you have any aloe vera gel or even after sun, either may help the rash calm a little possibly. I realise if it is the embrel it won't go but may ease any itch if you have some. x

[Jora in reply to nomoreheels]

Thanks. Heat could be a factor , but not direct sun as I've avoided that. I'll see what the Health at Home nurse says on Friday, then ring the Rheumy registrar. I actually want the rash to still be there on Friday, so will resist any drastic treatment, but thanks for reminding me; I think I do have some aloe gel. I have to remind myself of the enormous improvement since last year. The only thing I could hold then was a plastic teaspoon. Loo visits were rock bottom!

[nomoreheels in reply to Jora]

Sort of hope it eases but best it doesn't then as you can ask someone soon if that makes sense, it's MTX day & getting tired now! It just alerted me as I suffered with heat rash one year as a result of high temperatures, albeit a lot higher than we're experiencing at the moment, not long after starting my new meds as I'd not long been diagnosed at the time & I thought it was te drugs causing it having never had heat rash before as I'd always been a sun worshipper & it'd never caused me any problems before. It turned out it was my sweat glands just couldn't cope. I hope she can offer some suggestion as to what it may be anyway. You were in a mess then weren't you? It's awful when we hit that place, whatever the problem. Hopefully it won't be the embrel & it works well for you can start enjoying what you do with even happier hands. x

[Jora in reply to nomoreheels]

Wow, that's a long sentence! (how does one insert smiley faces into this forum?) What I do with happier hands is paint.

can't direct you to my website here. maybe through the pm system. I'll try. night night. Jo x

[nomoreheels in reply to Jora]

Yes, now I read it again it is isn't it? Sorry, but I did say it's MTX day, excuses, excuses!!! Unlike me as I'm a bit pedantic about such things as it's always been a large part of my working life & dislike it so when I do such things. That's the problem when I ramble. I normally check before submitting but typically I didn't this time. Harrumph

You did a smiley face yay - is that your first one? If so back at you I'm honoured

Thanks, will look for it when you pm.

Hope you manage to have a reasonable night. x

[cathie]

So sorry to hear this. I'm os 12 weeks of enbrel coming off pred. I'm having very achy mornings after being up a few hours I feel better. Had a site reaction but have treated it successfully with antihistamine. I hope you start to do better soon

[Jora in reply to cathie]

Thanks, Cathie. I live in hope. I actually think that lack of sleep ( Prednisilone and heat) are very unhelpful. But of course, I can only control the former very gradually, and if I could control the latter ...

[cathie]

Yes. I'd love to reduce my pred more but early mornings are just dreadful. I can cope with not sleeping but it's the getting up the next day is so difficult. My sleeping solutions, shower before bed if it's too hot, calm, empty bladder! , and talk on radio on ipod to lull me to sleep. I think a routine helps.

I hope it cools down for you. I live in a stone tenement with thick walls so it's cooler than more modern buildings

[Jora in reply to cathie]

Thanks. Yes, I find a coolish shower at night helpful. The radio too, though "lulling" is not something I've experienced for a long time! Jo

[cathie]

Try the shipping forecast!

[Slightly_ginger]

Hi, it took around four weeks for the nausea and indigestion to subside for me, but persevere , I cannot speak for you personally, but for me, Enbrel has made huge difference to PsA. With much less joint paint and swelling. It hadn't gone completely but I would say it is worth it.

[Jora]

Thanks Slightly_ginger, that gives me hope. I will persevere, unless blood tests indicate that I shouldn't.