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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Dear All
I am now into my third year of RA since diagnosis and my RA has been very active in all this time. I have tried and failed on Enbrel, Humira and Rituximab all of which I had severe allergic reactions to. On Saturday I am about to take my third injection of Simponi (anti tnf), which I have to take once a month. I have had no allergic reaction to this drug thank god but it has done nothing to improve my condition, in fact I am at my worst than I have been in twelve months. Every joint is causing considerable pain and I am at my lowest ebb.
What to do .......... Shall I see if the third injection works or shall I ring my Rheumy team now before I cannot get out of bed? I so wanted this to work as my Consultant is at a loss on what else he can offer. I have now had three anti-tnf's and Rituximab. I have been pondering for days on whether to make the call as I don't want them to think that I have given in too soon. If I ask for a steroid injection, this is not going to tell me or them if the Simponi suddenly starts working.
Any advice would be very welcome.
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Dear Jackie. I just wanted to send my best wishes, and I'm sorry I can't offer advice. I can see the dilemma you're in with the steroid. I hope you have some decent pain relief to get you through this difficult time. Naomi.
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Jackie
I am so sorry to hear that you are suffering so much I have taken the following of the SImponi website which may be so some help.
While some people using SIMPONI® may experience symptom relief in one month, studies show that SIMPONI® relieves pain and stiffness in some people with RA, PsA, or AS after 3 months. Results may not be the same for everyone.
You could give the helpline a ring tomorrow for their thoughts, can fully understand your reluctance to continue when you feel so poorly. Hope things turn the corner for you very soon.
Love Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Jackie,
So sorry to hear how bad your RA is at the moment and that you have as yet had no relief from the Simponi. However, as Julia points out, there is still time for the drug to take effect.
I think you should ring your rheumy nurse and say how bad things are but I also think it's worth persevering with the Simponi, especially as you have no bad side effects.
You would benefit from a depo steroid injection ,just to tide you over until the drug kicks in.
Hope you can get some relief soon.
Love Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 242
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Hi Jackie
It's so frustrating waiting for these drugs to work isn't it, when you are suffering from agonising pain? I haven't tried Simponi (yet) but when I first went on to Enbrel it took 3 months to see any difference at all. I became completely bedbound waiting for the drug to kick in, so I just kept having steroid injections until I realised I didn't need them anymore.
I would definately keep trying Simponi, especially as you have no side efffects and have a steroid shot to tide you over until the Simponi works.
Hang in there!!!
Best wishes
Rebecca
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Just want to agree with everyone else, Jackie. Don't give up as it may take a while to kick in. Prayers and love
Jeanxxx
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Jackie,
Nowt to lose I reckon, could help to change your life yet? I would take it Jackie but fully understand if you choose another path. I wish they'd get on with this personalised medicine thing so we didn't have to go through all this trial and error stuff, thoroughly tedious!
Sara
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Rank: Advanced Member Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Just wondering what the personalised medication is that you mentioned Sara. I haven't heard of it before. Naomi x
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Rank: Advanced Member Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Naomi,
They have a long term aim to be able to take your DNA and personal body chemistry away for analysis and work out which drugs will work. Frankly its a bit Star Trek but they're making good progress with things with genetic links like breast cancer. I think they're trying to do the same sort of research with RA to work out which bit of the immune system and the inflammatory chain reaction is breaking down or wonky so they can prescribe the drug combination most effective for your type of RA. Its probably a long way off but something we can all hope for! You can tell I've been doing too much reading of late and Radio 4 has a lot to answer for!
Sara
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Rank: Advanced Member Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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That sounds brilliant Sara and if they can achieve this in the future it would make a huge difference to people with RA. It's really encouraging to hear of research and developments such as this. Thanks from Naomi.
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Rank: Newbie
Groups: Registered
Joined: 11/25/2011
Posts: 6
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Hi Jackie
The same thing happened to me with Simponi, I had 2 injections and it made me worse, my rheumy nurse thinks I developed drug induced lupus. I was taken off it and started rituximab last week.
Mary
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Jackie I posted a reply a couple of days ago but it seems to have disappeared! Anyway just wanted to say, sorry you are feeling so unwell and hope things improve for you soon. I think in your shoes I would stick with the Simponi for now, it still has time to work. Do report back to rheumatology though as they may have other ideas. The one thing about personal medicine is that exactly this sort of situation will be avoided. We all know that Rheumatoid can be caused by a number of different inflammatory markers, B-cells, T-cells, IL-6, TNF etc. and each drug is specific to one of those. Very trial and error!! Many developments in the pipeline, can't come soon enough  Lyn x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Thanks for all your kind replies. Third Simponi injection tomorrow so really hoping it will kick in. I now have to wait for an appointment with the Rheumy Team as they have only prescribed three injections. There really is nothing much else for me to try now but I am ever hopeful that something new is just around the corner. I have taken a weeks holiday to try and rest and recuperate. The company I work for have been so wonderful. I work five days a week but I can work from home on two of those days and I really believe this has helped in me not taking any sick leave for over 12 months. Yes it is a struggle and some days I am not sure how I manage but it keeps me sane. I really like the idea of the personal medicine as there is something going on in my body which is not being touched by the range of drugs available for RA. I have even given up the chocolate for the last week to see if that makes any difference. Times must be bad  I have put on quite a bit of weight since I was first diagnosed three years ago as my mobility is awful and I spend so much time sitting around. I really am going to try and make an effort to lose some over the summer. If only the weather would warm up a bit, that lettuce leaf would definitely be more attractive. Hope you all have a good and pain free bank holiday. Jackie xx
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Rank: Advanced Member Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Jackie,
Well done for being so brave and sensible! Seems like the best route to me and I just hope the drug does the trick for you, everything crossed.
I know what you mean about the weight thing, Since giving up smoking and reducing the amount of activity in my life and not adjusting the calorie intake I've also put on a pile. Its so hard to get your head round losing it as well as everything else. Luckily or otherwise I've managed to get myself noro virus the last couple of days so, hey every cloud! Even that lettuce leaf makes me feel queasy, that's the first 6 pounds then!
Sara
x
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 854
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hi Jackie, hope that you have had some improvement from the third injection of Simponi. Can I suggest that you telephone the Simponi freephone number and talk to the nurse advisor. They may be able to reassure /advise you. I am just about to have my third injection too and am noticing some improvement. xxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Hello All
Well today I have been back to see my Rheumy Consultant. I have now had my third Simponi injection and, if anything I am worse. I have pains in joints that I have never had before. My toes feel as if they are broken, I cannot get my wedding rings on and both hips and my right knee are making sleep almost impossible.
The problem is, there is nothing much left out there for me to try. Humira, Enbrel and Rituximab have either not worked or I have had a severe allergic reaction to them. The only possibility is Tocilizumab but, they are unsure they will get the funding, particularly as the PCT is being disbanded as from 1st June.
The Consultant says I am a difficult case, so the plan is to carry on with the Simponi for another three months. I have also had a depo injection today and have been told I can have one every three months. I have been prescribed Pregabalin (a pain killer I believe) which I can take on top of the Tramadol. Is anyone else on Pregabalim and how does it affect you?
I am also being sent for my hips to be x-rayed as things are not looking good with either of them. They also want me to go back to the Orthopaedic Surgeon to discuss the knee replacement on my right knee. However, I have declined at the moment as my mobility following the left knee replacement in January 2011 is still very poor. It continually swells and I have great difficulty with stairs etc.
All in all I was feeling very sorry for myself, then my lovely Husband came up to see me. It is our 21st wedding anniversary tomorrow and he gave me a beautifully wrapped present (courtesy of my Daughter I think) and a card. He said to open them now as I have to go to work tomorrow. He has bought me a Kindle. I have been wanting one for ages but money has been tight. I am so overwhelmed by this gesture that I now have a big smile on my face. My Husband is not big with words and gestures, so the present and a very touching card could not have come at a more welcome time.
Jackie
xx
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Rank: Advanced Member Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Dear Jackie. I'm sorry things are so bad for you at the moment and it must be difficult to stay positive about the Simponi. However they wouldn't be continuing with it if there wasn't a chance of it working so try to hang in there and remain positive. At the very least if it doesn't work it will spur the experts to get their thinking caps on to find something else for you. Congratulations on your 21st wedding anniversary. Best wishes from Naomi.
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Rank: Advanced Member  Groups: Registered
Joined: 5/7/2012 Posts: 149 Location: S E London
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Hi Jackie,
That was a really nice pressie from your hubby, congratulations on your anniversary.
I love my kindle, have fun downloading loads of books.
It's a real shame you are in such a lot of pain, I hope they can sort something out for you.
All the best
Mary
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Jackie Just sending lots of best wishes on your Wedding Anniversary today  what a wonderful gift from your husband ! Just wondered whether you would be able to be considered for Cimzia, the drug company provide it free to the NHS for the first twelve weeks, I have been on it for nearly a year now and taken along side mtx by injection has worked well, I failed on all the dmards and infliximab. Thinking of you, Julia xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Thank you all for your best wishes. I still can't get over my present as I have wanted one for ages. Happy to say that 30 hours after the depo injection, the pain is starting to ease. I don't like having steroids but oh it is a blessed relief. Julia - Never thought about Cimzia - thanks for pointing that out. I will remember this when I go and see the Consultant again in three months. I will try anything to get this dratted disease under control. I would like a half decent summer after freezing for most of the winter. I just want to go out for a few days, nothing too adventurous. We can't afford a holiday this year but a day at the sea side would be wonderful but it is no good going if I am in pain all the way there and back. So fingers crossed the depo will keep on working and I have now collected the new pain killers Pregabalin, so will hope that they also work. Have a good, pain free and at last sunny weekend. Jackie xx
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