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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Hi All
Glad to say the rash has definitely started to improve and is nowhere near as sore. Have increased the amount of hydrocortisone cream I was prescribed. I did my third injection of Enbrel yesterday and have had no reaction so far with the rash.
I must say I have felt completely wiped out for over 24 hours after each injection. It has really knocked me around compared to the Methotrexate which I am still taking. Everyone keeps on saying to me that they thought this was the miracle drug and I look worse than ever. I have spent all day at work literally dragging myself around and just wanting to put my head down and go to sleep. I know it is early days yet and I think I am feeling a bit down at the moment. The rash, unfortunately is one of many health problems which seem to have worsened over the last few months. I am in incredible pain in my knee when I walk. I try and rest as much as I can but I have a full time job, although I am allowed to work at home two days a week. I also have a 14 year old Daughter and I used to love going shopping with her but I find it really difficult now and get incredibly irritable with the pain going around the shops but I do not want to let her down. She is such a good girl and works so hard at school, she deserves a treat.
My other problem is that just after my Daughter was born I had to have a hysterectomy because of damage caused during childbirth and then twelve months later I had to have a bowel and bladder prolapse done, again from the damage caused during childbirth. Everything has been in its rightful place for the past 13 years but over the last few months everything has dropped again dramatically causing all sorts of problems.
I am sure some of these problems are not RA connected but I just feel as if I am falling apart at the seams. I have two appointments at the doctors next week, one with my GP to discuss the knee situation and one with a lady doctor to discuss the prolaspe. I am sure that the prolapses are going to involve surgery again and I feel so weary about having to deal with all the ramifications of my health.
I am sorry to whinge but sometimes just putting the problems in words can help. At least it is Easter and I have four days of rest to look forward to.
Happy Easter to everyone Jackie xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009 Posts: 336
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Hi Jackie, it's good to get things off your chest and with everything happening as it is you are having a terrible time and we all have have a bit of an idea of how you are feeling, I hope you have a good Easter break, try to get some rest. x
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009 Posts: 1,035 Location: in a house
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be carefull increaseing the cream if it has strieoid in it .It will thin the skin and the rash might come back . but i anit a doc Christine The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi Ya Jackie Thats good rash easing,you may just need some adjusting time for anti tnf to get used to its stength wishing you happy easter. good no site reactions. hugs. melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Jackie,
Sorry you are having such a dreadful time at the moment, all your problems seem to be coming at once. When I was on the trial for Humira I had a huge flare not long after I started it and my rheumy nurse said it's quite common to have a flare when starting a new drug so I wonder if this is the what's happening with you? I sympathise with you over shopping with your daughter, I know the energy that's required on these expeditions! Hope you can get lots of rest over Easter. Sending you lots of hugs, Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Right Jackie
Practicalities: I KNOW you will hate me for saying this, but if you love to shop with your daughter (as I do), most places hire scooters these days. OK, so it's not cool, but it sure is better to be able to shop and not drop at the end of it!! Lucy and I can happily spend a day at the Trafford Centre - mooching round, having lunch, drinking coffee and nattering. BUT there's no way I could do it without assistance from the scooter. It makes all the difference to shopping and spending time with my beloved daughter without getting tired, frustrated and fed-up!!
Try it - maybe just once, and see what a difference it makes!
I'm so sorry you are having to cope with so many problems and really hope and pray that the Humira will soon kick in and give you some relief.
Much love Jean xxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Hello The rash is back. I think it is definitely linked to the Enbrel and will need to track my Rheumy nurse down next week. I had injection on Wednesday and got up this morning and it is very red again. Will watch what I am doing with the cream and not go mad with it. Bought some new cotton bras this morning hoping this might help. I was also wondering if I was having a flare as my RA symptoms are definitely worse since starting the Enbrel. Hopefully things will settle down again soon. Even though I felt rough this morning, I dragged myself out of bed to go on the the shopping expedition with Daughter. 15 minutes shopping, 5 minutes sitting down and so on. She is wonderful and never complains bless her. Luckily a lot of changing rooms have little stools in them now so Mum is ensconced in the corner whilst she tries on all sorts of weird and wonderful outfits. I like the idea of hiring the scooter, especially as we toured the shopping centre many times and then she bought the outfits in the first shops we had visited  I am not intending to go over the doorstep for the rest of the weekend but I am pleased I made the effort for my Daughter. Take care all of you. Jackie xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi jackie
Sorry to read about this- I wish I could ring you rather than put it all on here- But I cant! So here it is.
I was cross to read about this nurse saying it was not to do with the Enbrel because me and 3 other people on the trials for Enbrel nearly gave our lives to have them listed on that damn leaflet. All of us were left too long, told it was not near the site of the jabs (although I had red itchy large raised areas there too actually) and all got serious infections- emergency surgery etc and was seriously poorly. One lady died of serious infection relating to these lumps. I am FURIOUS that this nurse didnt know about them.
About being ill following the start of the enbrel. there is something called "serum sickness" you can get it with different drugs, you are especially susceptible if you have allergies to other meds like pennicilin. On the leaflet it clearly mentions hives, itchy rash ANYWHERE and feeling unwell.
I have had one form of serum sickness or another with every Biologic drug which is RARE.
The protiens they use in the manufacture of the meds cause the bodies immune system to attack the drug in your body in some patients- they dont fully understand why. For a person who has an over active immune system anyway- you can quite understand why it makes you feel worse. Another member has recently had similar and this person has had to stop the medication which is the RIGHT THING TO DO.
With me, I decided to take the enbrel again as there was no alternative at the time, and I was only 24. In my case, the lumps did not return and nor did the site reaction interestingly. In the end, after another 2 yrs I had recurrent wee infections and had to stop it when I got renal failure (now fully recovered but not forgotten!)
They are serious drugs and not to be messed with- it makes me cross when these rheumatology employees are so blase.
Much love Jackie.
So sorry you are going through this.
Jenni xx
PS I agree with Jean and mobility- I hire a power chair as it is smaller and easier for me round the shops (little joy stick) it gives me such freedom round the shops with my family and friends.how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Jenni
Many thanks for your kind reply. The rash has almost gone again. Next injection due on Wednesday. Have an appointment booked with a GP for Thursday morning to discuss all manner of problems and will tell her what you have told me and print off your previous post about the possible side effects. I know that Enbrel is a very serious drug and I do not intend to take the possible side effects lightly. I am most likely going to have to have surgery within the next few weeks to sort out my bits and pieces so the Enbrel is going to have to stop for a while. It will be interesting to see if there is any rash then.
You and the other members of this forum are the reason I joined this website. All the years of training doctors go through is nothing compared to actually living with a condition and the medication we have to take. You are all my best source of information which I can then use to logically think about my problems and confront the medical profession with a level head. You are also a source of inspiration to me. My problems are nothing compared to yours and yet you always have the time to offer advice and comfort - thank you.
Kindest regards
Jackie xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Dear Jackie,
I am so very sorry to hear of all your suffering and how worried you must be.
The anti-tnf meds are still reasonably new in the RA world and should be treated with the utmost seriousness, of course. I hope your GP will be supportive and that you will make the decision which is right for you. It is so very hard.
I am also sorry to hear about the prolapse and I will say a big prayer for you..please let us know what the Drs say.
With love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Hi Jackie
I'm sorry to hear you have other health problems on top of the RA. I hope you can get them treated without another op. I've been injecting enbrel for about 3 years, and I never connected my rash with it. As I mentioned before, I use Canestan cream, but not every day. If it isn't too bad I dilute some Tea Tree oil in water and dab that on. It does seem to help. I think it's a condition that will not go away, just come and go.
Lyn
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Oh Jackie I am pleased that you feel supported. I know that my RA is blooming awful but if it can make one person suffer less by my experiences then that is why I spend such time on the forum.
I get ever so maternal about it all! Silly girl I know!
Much love and I do know there are great medics who really do get it out there. Hope the GP is helpful.
Perhaps you could just see a dermatologist and then be able to continue to success with the enbrel?
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi again
I think Jenni is right about an appointment with a dermatologist - you certainly need some help with this.
Love Jeanxxxx
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