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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Dear All I have finally been contacted by the Rheumy Department to tell me what they have decided to do with me (put me down hopefully  ). I have failed on all medications taken so far, including the two anti tnf's Enbrel and Humira. They have decided ........... wait for it ............... to put me on Methotrexate injections rather than tablet form and that is all. I am very confused. My RA is worse now than when I was first diagnosed. I am on bucketsfuls of pain killers and struggling to keep going in my job. Why would they just give me Methotrexate? When I challenged the RA nurse she said it may work and to give it time. If it does not then they will move onto Ritimuxilab infusion. So that possibly means many more weeks in pain. I was so flabbergasted I forgot to ask how long I have to try the injections for. Maybe I am being inpatient and ought to give it a chance but I do not know how I am going to keep going. I have had a depo injection but that did not seem to work and now it is going cold and I know my joints are not going to like that. I just want to feel better even for a short while or is this what it is going to be like long term? Jackie xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Jackie,
You must have been devastated to hear this and I can understand it making you feel very let down by your rheumy team.
I don't know why they have decided you have to try the mtx by injection but can't help wondering if it's to do with funding and their criteria for funding Rituximab may be that you have to have tried all other options first. I'm probably wrong, it's only a guess.
Can you discuss it with your GP and see what his views are, might it be worth getting a second opinion?
Do start the mtx injections as soon as possible though, because it will be better than having nothing at all.
Hope they work for you Jackie,
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Dear Jackie,
Gosh, not sure where to start to cheer you up. Poor you, you have been through the mill.
Not sure how they come up some times with there decisions on the drugs. You certainly
have had a fair old choice.
All I say is that I really hope you get relief soon Jackie. (I am waiting also to go on
an anti TNF ) The waiting game is definatley awful.
Chin up
Rose x
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Rank: Advanced Member  Groups: Registered
Joined: 1/29/2010 Posts: 264
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Jackie, that's awful for you, why should methrotrexate injections be any better than the tablets. When I also failed on Humira and Enbrel and still taking the methrotrexate table they said I had to do was wait 1 month for the enbrel to get out of my system and then I went in for a Rituximab infusion, nothing was said about waiting for funding and as my das score was still way over 5 there was no problem. I would ring the rheumy team again, you can't go on in this pain, and its unfair to make you do so. At least with trying Rituximab there's hope that it will work and like most things we try it does take up to three months.
Thinking of you
Best wishes
Sheila
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Jackie
How awful for you, it really doesn't make any sense does it? I always thought that anti TNF were the next step up if the DMARD's failed, this seems to me that your treatment is going backwards and not forwards.
The only thing that I can think of that would make any sense is a something that my specialist nurse said to me when I had to make the decision of having another DMARD added. I had been offered two, one of them being MTX. She told me I had to fail on two DMARD's, one of them having to be MTX before I would be considered for anti TNF drugs, I was told this May this year. I don't know when you started taking anti TNF drugs but if the guidelines from NICE have changed whilst you have been taking them, this may be the reason why.
Thinking of you.
Paula x x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Jackie,
really sorry to hear this,
i've only ever been on Methotrexate to date and so far it hasn't worked started it 17th June and increased dose to 20mg 4 weeks ago, got to give it another couple of weeks before they decide what next.
when i last spoke to my Rheumy Nurse she said Methotrexate by injection does get into your system better, but at your stage of the game i would say you would need more than this but i'm still learning here,
can you ask your GP for his opinion perhaps.
hope you can get somewhere,
let us know.
Suzanne x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Dear All
Thanks for all your kind replies. I should qualify for Ritimuxilab as I have failed on two anti-tnf's so I really do not know why they are only putting me on Methotrexate injections. I did wonder about funding as my RA nurse said "oh you should not have a problem with the funding for the Methotrexate injections as it is far less than the anti-tnf's" This made me wonder if they have over prescribed and are low on funding.
I have made an appointment to see my GP on Wednesday as I cannot bear the thought of more months of pain whilst trying to keep my full time job going.
I am angry now so hopefully will be able to get my point across on Wednesday.
Jackie
xx
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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 This is actually good news!!! I know it may sound hard to believe but it could well be the answer. Methotrexate injections are known to be considerably more effective than tablet form as they enter the blood stream directly without first going through the normal bodily functions which lessen the efficacy. They can be given at a lower level than oral meds thereby causing less side effects. A number of studies have been done and I understand that in virtually every case Methotrexate by subcutaneous injection has given superior results; faster effectiveness (3-6 weeks), more effective, less side effects. I think this may be a good way forward in the knowledge that should this fail Rituximab is still available as a back up. Quite often when anti-tnfs do fail the next step is to revert to Dmards; RA is, as we all know, an ever changing, ever moving disease. It's quite possible therefore that a drug that has failed at one point in the disease process may actually have excellent results a few years down the line when the disease is at a different stage. Anti-tnfs, despite the hype, are not a cure-all nor are they suitable for everyone. I have over the last 22 years had just about everything on offer and at some point everything has failed except Enbrel which I'm currently on. No doubt that too will run it's course at some point!! I would be happy to re-start the cycle in the knowledge that second time round something might have a better more lasting affect. Please be hopeful Jackie. Get some decent pain relief from your GP, take the maximum dose and keep it topped up (even when not in obvious pain) and get started on those injections! Lyn xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Lyn
Thanks, you have given me hope. I was dreading having to inject for maybe the twelve weeks and still not feeling any better. I am definitely going to give it a go but I think I need some more powerful pain killers to keep me going in the meantime.
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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How horrible for you to hear that you were going right back to the beginning. I'm glad Lyn has been able to offer some positive advice. People who see you at the hospital just have no idea of the pressure some of us are to stay at work. I think it's a good idea to seek some alternative pain treatment. Take care.
Julie
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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How horrible for you to hear that you were going right back to the beginning. I'm glad Lyn has been able to offer some positive advice. People who see you at the hospital just have no idea of the pressure some of us are to stay at work. I think it's a good idea to seek some alternative pain treatment. Take care.
Julie
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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 think if you can manage the pain better you will perhaps feel more positive about the Methotrexate. I take 2 x Co-dydramol thee times during the day (500mg paracetamol and 10mg codeine) and 2 x Dihydrocodeine at night (500mg paracetomol and 30mg codeine). This seems to work well, generally, although of late I've thrown in some Tramadol at night when my knees have been particularly bad and I've not been able to sleep. Hope it goes well Jackie. Thinking about you :) Lyn x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Hello All Just an update on my situation. Went to see GP today to talk about why my RA Consultant has put me onto Methotrexate injections only after failing on Humira and Enbrel. It was so embarassing as I burst into tears as I started to talk. I am lucky that I do not normally get down and do not suffer from depression but I think the continuing pain day and night has finally "got to me". My GP explained that my Consultant is probably following NICE guidelines on what he prescribes me next. However, he was very concerned that I have only been seing the RA Nurse and not the Consultant over the last fifteen months. He is writing to the Consultant to ask that he sees me on my next appointment. He has told me to go armed with questions written down. e.g. what is my long term prognosis, am I likely to have to give up my job, is the pain I am experiencing damaging my joints and if so, what could happen to me in the future. I felt such a fool crying but he was very understanding with a box of tissues etc. He has also given me some slow release Dihydrocodeine to take with the parecetemol to try and get the pain more under control. I went into work after the appointment and everyone could see how upset I was. They were all shocked as, although they know I have RA, I do not think they realised how badly it is affecting me. I spent the rest of the morning talking to people about my condition and crying a little more. By lunch time I was completely wrecked but felt better. I don't think the news today about the Government cutting benefits has helped. If I do have to give up my job because my health has deteriorated, what are the chances of getting benefits? It is very worrying for the people who are genuinely ill. Anyway onwards and upwards (if only the stairs did not cause so much pain  ). Jackie xx
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello JAckie,
So glad you got on well with your GP. I agree that it is bad if you have not seen your doc for 15 months.
There must be something there. Yes to cry is good though as it does release the tension about it all.
I can remember a time when I went to Rhummy Nurse when I think I cried the whole appointment.
I have also cried with the Doc.
Hopefully the GP letter will speed things up for you.
Love Rose
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Jackie,
Thank goodness for your understanding GP! Glad he gave you some better painkillers too.
Don't worry about crying , I'm sure most of us have cried in front of our doctors, it's the frustration of it all as well as continually feeling ill.
I would think it has done you nothing but good at work too, letting people know exactly how the RA is affecting you. Perhaps they may be a little more understanding towards you in future.
I can well understand you worrying about all the government cuts. I am thankful I am now 61 and don't work anyway but so many of you are younger and trying to hold down jobs and deal with this disabling illness and I really feel for you. You certainly could do without all the worry.
I hope you find the new painkillers effective and maybe the mtx will be too this time, have you started on it yet? Maybe with your GP writing to your consultant you will get to see him soon (I haven't seen a consultant since January 2008 but that's another story!)
Here's hoping things will start to get better for you soon.
Love, Doreen xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Doreen/Rose
Thank you for your kind replies. Things have changed slightly since I last posted. I was encouraged by the company I work for to use the company medical insurance to see my original consultant who diagnosed me privately in January 2009. This will give me time to ask all the questions I have without worrying about a NHS ten minute time slot. Therefore I have made an appointment to see him on 1st November. I cannot get treatment through the health insurance but they are happy to fund a consultation which is fine by me. As this consultant works hand-in-hand with my NHS consultant, I am hoping that if he suggests a different tack of treatment that he can speak to the NHS consultant.
As for the Methotrexate injections, I last spoke to the RA nurse a week ago and she was applying for funding. Have not heard anything from her to date. It is worrying as I do not know how the Government cuts are going to affect the funding of medication. My only hope is that I had the funding for Humira which, as you know is extremely expensive, and now moving onto Methotrexate injections, this will be a lot less expensive.
Took my first lot of Dihydrocodeine last night and definitely had a better night's sleep. Also feel in a better frame of mind today to plough on.
Take care
Jackie
xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Jackie,
Good to hear you had a better night's sleep, it helps enormously. I'm glad you have been able to make a private appointment with a consultant , hopefully you will come out of it with a better treatment plan. We should not have to do this but sadly it is becoming the only way that some of us can see a consultant.
Hope you can get on the mtx injections soon.
Love, Doreen xx
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Jackie,
glad you've now got an appointment and hope that this proves productive.
i'll be interested to hear the outcome, as i am due for review in a couple of weeks ( only by phone with the Rheumy Nurse after next bloods ) as to date my Methotrexate hasn't worked having been on it since the 17th June and last time i spoke to my Rheumy Nurse she hinted that Methotrexate injections could be the next move ... my next appointment with Consultant is at the end of November, but they do have a weekly flare clinic if needed and they are good at slotting you in.
the funding is worrying and something i haven't encountered yet as i'm fairly new diagnosed.
glad that you had a good nights sleep and safe in the knowledge you have your appointment soon.
take care,
Suzanne x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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I'm so pleased that you have found the strength to take such positive action to get a proper consultation.
I fully understand the turmoil you are feeling. I am in exactly the same position but have just started on Humira. Although i work part-time and my parter is working, I have been a civil servant for over 25 years and my salary is equal to about a third of our income. I have a 9 yr old son as well. I have been really struggling to stay in work for some time. I manage a team with another woman, she does the HR stuff and I do the technical/legal stuff on immigration casework. She is taking early retirement and finishes work tomorrow. We get on really well and she is the only person I ever talk to about RA at work. We had a meeting today and she actually said to me 'why don't you tell people about your RA - nobody has a clue how it affects you - they just don't realise because you soldier on loaded on painkillers and whatever toxic drugs you are taking'. I nearly cried then. It's good that you have spoken to your colleagues. I'm sure it must be something of a relief.
I too was gobsmacked by the announcements yesterday. Instead of thinking, if the worst comes to the worst I will have to claim sickness benefit. I now know that although I have worked since I was 16 (now 46) - after a year, I would probably get nothing because Julian is working. Whereas people who have never worked a day in their lives will continue to get benefits!!!!! It seems unfair that our partners who have also worked all their lives will have to bear the brunt of our loss of income and will effectively have to pay for us being ill.
Please don't don't think I am being completely negative. I am also trying to do positive things to get stuff sorted at work. If you feel like having a chat, ask NRAS for my e-mail address or phone number. I'm sure we have lots in common.
Julie xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Doreen/Suzanne and Julie Thank you for your replies. I will keep you up-to-date about the funding and hopefully starting the Methotrexate injections. No news yet. Julie - do you think the NRAS should give Mr. Cameron and Mr. Clegg a guest log in to this site to see how we are all frightened now that we will not be able to claim benefits? I am a year ahead of you, I am 47, and I cannot see how on earth I am going to be still working at 66? I keep buying those lottery tickets but have had £10 since it first started (not quite enough to retire on . I know the Government needs to stop benefits for a lot of people who are capable of working but it is going to be very tough on those who are genuinely ill. I will ask the NRAS for your email address. Take care all Jackie xx
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