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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Hi All
A further update to my previous post. I have now been on Enbrel for 4 weeks but have been unable to get rid of a rash which developed. After much too-ing and fro-ing between my GP and the Rheumatology Department they finally decided yesterday that Enbrel may be causing the rash. I wanted to shout "Hurray - Jenni B told me this 2 weeks ago". Thanks Jenni for all your advice. I did pester them and told them what you had been through and finally they listened.
I am now off the Enbrel to see if the rash clears up and also because I am facing major surgery in the next couple of months and I will have to give up the Enbrel for a while then anyway.
I am now back to square one and going to have to exist on the Methotrexate. It's funny my Husband only said the other day that he did not know why I was being pumped full of all these drugs as they did not seem to be making me any better. He actually looked quite startled when I said "but I am not getting any worse" and he had to agree with this point. I was very much looking forward to seeing an improvement in my health now that the Summer months are fast approaching but it looks as if I am going to have to be patient and solider on. I am quite gutted that I am going to have to have major surgery when I have spent the last year and a half fighting this awful RA.
My Mother cried last night when I told her. She seems to think it is all her fault that she "produced a bad egg" and she wishes she could go through for me what I am suffering. Bless her she has not had an easy life herself. I told her I do not think this is the case and life is very much a lottery. Look at Martina Navratilova. Healthy diet, extremely fit and she still gets breast cancer. Luckily I am a very positive person and I have a wonderful support network to see me through this, but I do sometimes feel like shouting "Give me a break!"
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Jackie, Sorry to hear that you're unable to tolerate Enbrel, and it seems like we are both going through a similar roller-coaster ride with the anti-tnfs. I am now off Humira because of a rash on my feet and hands and have been subsequently diagnosed with Palmoplantar Pustular Psoriasis, a rare but not unknown side effect of Humira. Yes, thank god for Jenni who also alerted me! I too am facing surgery for my back later this year and I'm now of all meds apart from pain killers, and feel very much that I am back to square one again. Bless your poor mother, and can sympathise with her feeling this way. My daughter was recently diagnosed with another inflammatory condition called hypo mobility, which she has inherited from me as I also have this condition. However, although I nearly had kittens when she told me, she is very stoical about the diagnosis and has told me not to worry. Pleased to hear you're keeping positive  love, Barbara XXXXXX
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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 you've had to come off Enrel because of your rash.
I can understand how your mother must feel, my daughter has ME. and I'd do anything for her not to have it.
Lyn
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Barbara and Lyn
Thank you for your kind posts. Barbara I am so sorry you are also having problems with your anti-tnf's. It is so odd as I followed your posts when you were first approved for the drugs and then when you started to take them and I was about two months behind you thinking that will be me soon. I was told this week that if it proves I cannot tolerate the Enbrel I can try the Humira which was my first choice but the Consultant persuaded me to go for his favourite Enbrel. It looks like the Humira is also not going to be a great choice either. I know it is very much trial and error with all these drugs but it is hard when your hopes are dashed. Maybe we just need to swap over and we may find the magic forumla for us.
I hope you find a good solution soon and that the back surgery goes well for 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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Hello Jackie
I am so sorry the Enbrel hasnt worked out for you, Humira is an option as it doesnt use mouse protein so people who have not been able to have infliximab or enbrel can try humira.
BUT it can cause allergic/ intollerance reactions Im afraid I cannot tolerate either and my reaction although different (instant severe D and V followed by confusion) meant I had to stop it.
These drugs were heralded as the "end to RA" when they came out in the late 1990s. Certainly my cousin was doing her dr training then and they were told that the anti tnfs were the answer to all RA patients, no more risk than RA itself they were told and it has been shown this is simply not true.
Having said that many patients do very well on them without any nasties at all.
In fact, the vast majority seem to start it and not look back and Im so sorry you, me and a few "special" others were not in this club xx
how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 854
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I am so sorry that you girls could not be in the club either. Hope that your poorly skin improves and sending you all the best of luck.
Eleanor x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi Jackie seding you warm smily cyber hugs so sorry see enbrel seemsbe causing this rash problem,sounds like good timing in terms having come off for surgery though not good that had helped top RA getting worse. my hubby felt mtx was doing nothing for me,and i thought so to but can see it had stopped inflammation going any higher though not reducing it. humira may be an option hun,heres to postive new drug less problems. must be so difficult say least for your mam,can say my mam is feeling her fault to re immune problems bless only natural.can they give you steriods to help til surgery,woudlnt wnat you to have more pain beforehand. lots lv 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: 1,582 Location: Oxfordshire
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Dear Jackie,
I am so very sorry about all the problems and pain with Enbrel.
I have to say that even though we all know how potentially dangerous uncontrolled RA can be, the meds can also scare us silly too. One needs to really weigh up whether it is worth the risk and usually there is no choice, however when they fail or make one so ill, like yourself and Barbara, there comes a point when you think 'why?'.
Much love to you and I hope and pray you will find a med which works for you.
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Jackie, I'm so glad someone finally listened to you but sorry it has meant that you have had to stop the Enbrel. I did wonder if it would have time to work with your surgery coming up though. Do you have a date yet? It might be just as well to be off the anti tnfs until you recover. Hope they can offer you more options after your op.
Julie
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Julie
Thanks for your note. No date for surgery yet. I am seeing the Consultant again on Monday 19th April. I am very lucky that I have private medical insurance so I can virtually choose the date myself. I am hoping to go for the 2nd or 3rd week of May which allows me to sort things out at home and work. I know I should not be thinking about work when I need major surgery but they have been so good to me in supporting me on the RA and health front. Will keep you posted.
Jackie
xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Jackie, I have been thinking of you this this weekend and was wondering how you are getting on? I have been told that I will not be able to take anti tnfs as indicated by the reaction I had to Humira, apparently only 1 person in 10,000 gets this type of side effect, so I guess I must be "in the special club." LOL. However, I would like to know what other drugs are available ans an alternative option to anti-tnfs, Jenni do you have any ideas? Jackie, if I can be of any help please do email me: barbara.d-gama@virgin.net. love, Barbara XXXXXX
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Rank: Advanced Member
Groups: Registered
Joined: 12/8/2009
Posts: 43
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Hi Jackie
The same thing has happened to me on enbrel. I had 4 injections and had to stop it.The 3rd injection i had a slight rash on the injection site,by the 4th one my other leg had a massive inflamed lump that was red hot.So like you i am now just taking MTX until my appointment in June.I also wonder how bad i will feel on this alone.
Anyway take care and sorry you have the same problem.
Love Poppyxx
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Rank: Member
Groups: Registered
Joined: 1/21/2010
Posts: 22
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Hi Jackie
I have been on Enbrel for nearly five years.
When I first started I also got a rash where I did the injections.
Unfortunately I can't remember how long I had it but it must have
disappeared in time as I am still on it.
I couldn't take MTX as I used to get ulcers in my mouth.
Anyhow I hope you get your medication sorted soon.
Take care
Marlene
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Jackie
Sorry to come in on this so late - I can't help but I do so feel for you and everything you are suffering at the moment.
Much love and a big, big cyber hug
Jeanxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Hi All
Thanks for all your support.
Barbara - The rash is improving but I have stopped the steroid cream and have yet to have my first free week from Enbrel - injection is due on Wednesday. My last injection was last Wednesday and yesterday I noticed I had an inflamed circle where I had injected. This is the first time I have had a reaction at the site injection since started 4 weeks ago. I can only assume that I must have a very slow reacting system if the inflamation did not come out until 4 days later. Now I am very confused. Was it the steriod cream causing the rash or was it the Enbrel? I think I am going to leave off the Enbrel from this week as advised and see how it goes. I am seeing my Consultant about the surgery I need next Monday, so I know I am going to have to come off it at some point. I may or may not be part of the "special club".
When I spoke to my Rheumy nurse, she did say that if it turns out that I am allergic to the Enbrel they will swap me over to Humira and see how I get on with this.
I like you feel very disappointed at the moment but I am lucky as I seem to have hit a plateau with my RA and it is definitely not getting worse, but maybe I am speaking too soon and need to knock on wood or wash my mouth out so I do not tempt fate.
I too would be interested to know is there anything else available after anti-tnf's have failed. I can put up with the pain but what gets me down more than anything is the all consuming fatigue. I do not have any intention of giving up work at the moment as I really enjoy my job and I am the only bread winner in my house. I spend all my time conserving energy so that I can get through the next energy sapping episode.
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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oh goodness me!
Jackie what a tricky situation, for what its worth I think you are doing all the right things.
there are B cell treatments, like rituximab and there are other anti-TNFs of course. Other drugs like T cell treatments are available but your rheumatologist will have to apply for special dispensation.
Much love
Jenni x how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Barbara and Jackie,
I too was on Humira for a few years until it stopped working and moved on to Infliximab. I developed an allergy to it after only five or so infusions and had to stop.
My rheummy said there was no point trying the third anti-TNF and I went straight on to Rituximab, a drug that targets B-cells that are apparently responsible for inflammation.
I had my two Rituximab infusions in early Feb and have had a lot of trouble with my tummy since mid March which I think is as a result of the Rituximab. Personally, with the wonderful benefit of hindsight, I wonder if I wouldn't have been better off trying the Enbrel first. Anyhoo
I'd be surprised if you both weren't offered Rituximab as you would qualify on the grounds of having failed two Anti-TNF's.
Good luck with it
x x
Joanna
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Rank: Advanced Member  Groups: Registered
Joined: 12/19/2009 Posts: 182 Location: kilwinning north ayrshire
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hi jackie, sorry to hear about your rash just to let you know you are in my thoughts and prayers sylvia
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