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Rank: Advanced Member  Groups: Registered
Joined: 12/6/2009 Posts: 177
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I am still breaking out in rashy spots after 15 weeks since my last Humira injection. I am seeing the dermatologist again this afternoon so hoping he can offer a solution.
I went to see rheumy on June 13th and she said she would do the paper work for me to start Enbrel but i'm still waiting. How long should i wait, it's been 4 weeks?
I'm off on holiday to Spain on Thursday for 2 weeks and soooooo looking forward to it. It will be great to go this year as last year some of you may remember i ended up in hospital the day before i was going with liver failure caused by the leflunomide and had 2 1/2 weeks in there instead! Not quite the same!
It's all the waiting all the time that i find so annoying. The medical profession don't seem to understand the pain we are in and the impact it has on our life. I'm in the wheelchair most of the time when i go out now because of the pain when walking. It's so frustrating and upsetting. The tiredness is terrible and i nearly always sleep through the morning how ever hard i try to get up. I used to be an early bird.
Love Shirley x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Shirley, Not sure how long the wait should be, but sometimes the wheels of the NHS turn exceedingly slowly!! I hope you don`t have to wait very much longer, and I also hope the dermatologist was able to find a solution to the rash. I do remember you missing your holiday last year, so I`m wishing you a very good time in Spain this year, and hope you have a lovely holiday. We`ve just come back from 2 weeks in Portugal, and it was so nice to feel the sun on my joints, and do some swimming. Hope you`ve asked for airport assistance, and flights go smoothly for you. Take care,,Kathleen C x
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Shirley Good luck with the Enbrel hopefully it wont be much longer..I know what you mean every change in meds takes forever! Have a fab holiday will do you the world of good.. Love Ceri xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Shirley
I had to give up on the Humira for the exact same reason. They moved me on to Enbrel but it took about six weeks to move over waiting for all the paperwork to be sorted and the delivery etc. It was a very frustrating wait. As you say I am sure if these people had RA themselves the service would improve no end.
Keeping my fingers crossed it will not be too long for you.
Jackie xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/6/2009 Posts: 177
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Hi All Came back from Spain last Thursday and had a fabulous holiday! Started being sick on the plane on the way back and that continued until Friday. Never been so sick, i know they say the immune system is suppressed and you get iller but i hadn't realised i could be sooooo sick!
Had a call about Enbrel in Spain and i started on Monday. I had to inject in to my leg as i couldn't push the pen down into my stomach. Does anyone else find them difficult to release? Nothing good happened yet, still feeling very stiff and lots of pain in elbows and knees this week.
Still breaking out in spots, 18 weeks now since last humira. I'm going to ask for another opinion as i only had 4 injections, i can't believe it can be the cause.
I hope you have all enjoyed the summer weather so far.
Shirley x
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Welcome home! Glad you had a good time but shame you were so sick! I would definitely get another opinion about the spots, surely they shouldnt be still popping out! Hope the Enbrel kicks in soon. Love Ceri x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Apart from the flight I am pleased your holiday was enjoyable
Good luck on the new drug.
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi
Another member had a rash after humira, she developed a sort of excema- a pustula something I think it was.
You need to see a dermatologist really
PLeased the holiday went well
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Shirley
Glad you had a good holiday but shame you had to have such a rotten ending.
I had a Humira rash and had to give it up because of that. However, the rash did ease about three weeks after my last injection so yours is definitely unusual. Maybe it is not the Humira. As everyone has suggested a Dermatologist should be able to get to the bottom of it.
I had Enbrel by pen and found it very difficult to press the plunger and then jumped a mile when it did happen. It does take practice and I found it hurt far more in my leg than it did in a good grip of tummy fat. You have to get it at the right angle on your tummy and it can be difficult at first but I found this the least painful and it did get easier with time. I then moved on to Humira by syringe and needle. I never thought I would be able to do this and watch the needle going in but I did not feel a thing and would opt for this every time.
Take care
Jackie xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/6/2009 Posts: 177
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I've seen a dermatologist and had a biopsy taken which showed it was a drug reaction and the assumption was the Humira. This was back in May.
Jenni, my spots are also with a pustula bit in the middle. I wonder if it's the same thing.
Thank you all.
Shirley x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi again.
This person, even after stopping the drug (It was either humira or enbrel- I cant recall) kept on with the pustular excema-ry things and now has lotions etc.
You are going to have to go back to see that dermatologist- sorry.
Jenni how to be a velvet bulldoser
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