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Rank: Member
Groups: Registered
Joined: 2/4/2010
Posts: 11
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Hi there,
I am looking for some help/feedback/advice if possible. I have now had 7 months of treatment for RA - Methotrexate on its own for the first 3 months and then with Hydroxychloroquine added in for the last 4. My symptoms are getting worse not better and both my wrists and my right hand are now pretty unusable for large parts of the day - the only relief coming from painkillers and anti-inflammatories and we all know these aren't really a long term solution. I have an appointment with my consultant next week and I really want to try and push for him to try me with Anti-TNF therapy (only available under NICE guidelines in my PCT and only then following long bids to the Trust). I am really getting desperate. I am only 40, have a one year old baby and have just gone back to work (full time). If there is no improvement to my symptoms soon I am going to have to seriously consider drastic action (i.e. changing my job/career) which would have a significant effect on my family (I am the principle wage earner).
Has anyone been through this process? Does anyone have any experience of trying to get anti-TNF on the NHS. I know that NICE guidelines state that I have to wait at least 12 months from diagnosis but I am getting to the end of my tether. I would be so grateful for any advice you may have.
Many thanks
Maddie
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Hi Maddie,
There are other DMARDs you can try before having to contemplate the Anti-tnfs. MTX works well alongside other meds, like Hydro (which is the softer option) and SLZ, Azathroprine and friends.
Did you have a depo jab before they begun the mtx? This usually brings the inflammation down very quickly so to allow the meds to get into the system more easily and rapidly. However it does take a long while, sometimes 6 months, for MTX to really take affect.
Love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 1/5/2010 Posts: 89 Location: Mereworth, Kent
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Hi Maddie,
I can appreciate your desperation, particularly about work and the family. Have you had a good discussion with your employer about making adjustments to your present job which might make life easier eg flexible hours etc. There maybe ways to buy you some time while you find the right meds.
I have just started an anti-tnf, but it took 18 months to try all the DMARD's before we learnt that I could not tolerate them (except Hydro which isn't strong enough for me) There are quite a few to try in all sorts of combinations and you may strike lucky. Once we started running out of options the rheumy team started talking about anti-tnf's and the assessments. It has been a long, difficult process but they did all they could to help me through with frequent steriod injections and infusions and support to help me cope.
I didn't find the process with the NHS obstructive, just that they didn't leave any stone unturned before deciding to try the anti-tnf. The final approval was VERY quick - I'm sure because it had all been so thorough.
Good luck with your discussions and don't be too despondent if your rheumy wants to try other things first.
I hope you get some relief soon
take care
Alison 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 Maddie and welcome.
it might be that steroids are needed in the shorter term to take the edge off things while you wait.
Your consultant can go into the PCT and make a special case for you. This happened for me with one of the biological drugs.
The other thing is to gently mention that there are other non biologics that might just suit you.
I have a 2 yr old and know how hard it all is on the hands.
I have severe RA and cant work (well, I am not able to work and be a mum basically), have been through the biologics and now out the other side.
they arent always the answer, and the unwanted effects including infections are not to be taken lightly but I guess you have looked at all of that.
Anyway- if you can access the old forum link on the forum menu page- on the pregnancy and RA bit you will find my blog and some useful threads of practical tips with a young baby.
In the meantime. look after yourself.
Jennihow to be a velvet bulldoser
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Rank: Member
Groups: Registered
Joined: 2/4/2010
Posts: 11
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Thank you all 3 for your responses. You are right of course, that Anti-TNF is only one possible treatment - the main reason I have focused on it to date is because it's the one most frequently mentioned in any research you come across. Also, a family friend is an Orthopaedic surgeon in Leeds and they offer anti-TNF treatment on the NHS (have done for a while) and he says it's been really successful in reducing the amount of surgery he has been performing on RA related joint damage. To be honest, I am just desperate to find something that works. Even though I am 7 months from diagnosis I am more than a year on from when symptoms first appeared and it just really gets you down. I have also found that my immune system is absolutely shot so as well as the RA issues I seem to have had a constant stream of colds and tummy upsets since November (having a child at nursery and a husband who is a teacher doesn't help!).
Jenni-B - it's great to have a fellow mum's input. You don't realise the amount you need your hands for looking after a little one until you are restricted do you? I really sympathise with your position re: Work. I am so desperate to hang on to my job for all sorts of reasons. I do have a very good employer and have a meeting booked with their Occupational Health adviser in a couple of weeks too but I feel as though things are coming to a bit of a head here and the next few months are going to be a real crossroads for me which to be honest is scaring the pants off me.
Anyway. Thank you all for listening to my rants. If I can ever do the same for you....
Maddie x
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Rank: Member
Groups: Registered
Joined: 2/4/2010
Posts: 11
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By the way Jenni - is your picture one of your little one? If so - what a sweetheart!
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Rank: Advanced Member  Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Maddie,
I can really feel for you! I was diagnosed six years ago when my little boy was just a few months old. I also worked although not full-time. It was a very difficult time and I can absolutely sympathise.
As the others have said, there are many combinations of drugs and dosages that are available. Most RA sufferers will do well on at least one combination of DMARDS without the need for an anti-TNF treatment. Finding this combination can take a long time unfortunately but may be worth doing. The biological drugs (ant-TNF and B-cell therapies) carry their own risks. I spent four years on different combinations before moving onto the anti-TNF's and now onto Rituximab, a drug that targets B-cells.
I know it's really difficult to come to terms with but I think it is worth trying various other combinations first. With any luck you'll hit upon the right combination early on ... many, many people do.
It's certainly worth discussing a temporary solution such as a steriod jab with your Rheummy, or perhaps another anti-inflammatory.
x x
Joanna
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Maddie
I am waiting to go onto Anti-TNF's. I was diagnosed in March 2009. I have tried Methotrexate, Sulphasalazine and Leflumonide over the last nine months but my health is deteriorating rapidly. I am the only wage earner in my house with a Husband who had to retire through ill health three years ago and unlikely to improve and a 13 year old Daughter. I saw my Consultant six weeks ago and he quickly realised through my blood test results, the inflammation in my joints and the severe pain I am in, that the only route left was Anti-TNF's. This will hopefully give me back enough quality of life to continue working. He told me that although it will not cure me, in 70% of patients, there is a significant improvement. I am lucky at the moment as my employer has been very understanding and is letting me work from home for two day's a week. I am an Admin Manager. I have had to completely change my lifestyle and at the moment am conserving energy outside of work hours to get through the working week.
For me to qualify for the Anti-TNF's they looked at my blood test results, examined each joint and asked me whether or not that particular joint hurt, and then asked me to point out my pain level on a score of 1-10. I have to go back again on 19.2.10 to be scored again and then they will apply for funding. I was told that our PCT has never refused funding.
I know how desperate you feel when you are the wage earner and also at 46 I am hoping that I have many years in front of me which I would like a decent quality of life. I know there are risks with the Anti-TNF's but these are far outweighed by my personal circumstances. Some people may not agree with my decision but I have considered this option long and hard.
I would definitely mention that you are the principle wage earner as it gave weight to my case.
I would also ask for a depot injection. I had two last year and it definitely eased the pain. This is only if you are not put you forward for Anti-TNF's. My consultant would not give me one 6 weeks ago as he did not want it to affect my scoring on 19th Feb.
I hope that you get something sorted when you see your Consultant and that you start to feel better soon.
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 Maddie,
I didn't say that I am also a Mam! I have had RA since I was a child myself and so have had all my children with it lurking about!
At one point we had five children under eight and some days it was sheer HELL just coping....let alone teaching and managing the house.
Caring for a little child can be so challenging when the RA is rife, all I wanted (and needed) to do was sleep!
I still have my dark days now but my eldest is 13 and a wonderful teenangel! And so I have so help and love here so it is worth it!
Love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
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Hi Maddie, my PCT also have same approval process, but it turned out to be major rubber stamping exercise, wtih consultant clearly wanting to prescribe them from as early as possible. By the time I got to where you are (also with baby in arms, and pre-schooler at knees) he was kind of queing me up to be ready as soon as possible. I used depot steroids twice while waiting for things to improve, in order to cope. Last summer, I saved up my depot offer, and had the jab the day before school holidays started, as I knew I cou;dn't cope otherwise. Then started anti-TNFs after that. You've not long to go, have some clear convos with your constulatn. In your shoes I would probably say what you want, listen to his/her feedback, use the depot to help you wait. Make sure they hear what you are saying about need to stay high functioning, and how the anti-tnf's have laods of evidence of that. ANd if you do start on them, save up some holiday - as I deflamed my joints got really sore for a couple of weeks and I really needed to rest them. Which I couldn't do. Ouch. Good luck, xfx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Maddie - sorry to hear aboout your situation and understand the pressure you are under work wise. I can't add anything else to what other members have said but would definitely agree that you ask for a depomedrone injection to help you keep going until you can sort out a longer term solution. Take care.
Julie
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 585
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Hi Maddie
glad you are here but sorry you have RA
when I first had this illness I had not long given birth to my daughter she was 4 months old she is now 14
it is hard when you have little ones but you manage to get through it
look forward to getting to know you better
take care
Mary L
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Maddie,
Welcome to the forum. I've had RA for a year now and did not do well on Sulf or MTX, because of problems with my liver and was put forward for ANTI-TNF treatment last October and finally started treatment on Humira 2 weeks ago. If it had not been for further test on my liver I would have started Humira earlier, but also think that where as the PCTs are concerned and granting Anti-TNF treatments it is very much a postcode lottery - I was lucky!
I'm also the main income earner in our household, however my daughter is a 23 student and my husband has a small business. I'm 50 and hoping to continue in work for as long as I can, if I have to retire then the whole family will have to make some serious life changes.
Hope you're successful getting onto an ANTI_TNF treatment soon.
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 Maddie
What dose of MTX are you on? It could be that the dose needs to be increased, you can go up to 25mg, and it can take 6 months to work to the full effect.
I am on Enbrel, after trying Humira. I didn't have to wait long to go onto anti-ntf's, so I would think one you've had your assessment you would be able to go ahead fairly soon after that.
Lyn
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Rank: Member
Groups: Registered
Joined: 2/4/2010
Posts: 11
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Hi all,
Thanks so much for all your thoughts, good wishes and advice. It has really helped me focus on what I need to ask at my Consultant appointment tomorrow and hopefully a suitable plan will be forthcoming. I can see that many of you are dealing with worse situations than me and feel guilty for getting so down about it but it has just got on top of me a bit lately. Anyway, thanks to you all I now have more confidence to ask the right questions tomorrow. Will let you know how I get on.
All the very best of wishes to you
Maddie
x
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Rank: Advanced Member Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Maddie,
You don't have to ever feel guilty! We're all in it together!
Good luck with your appointment tomorrow. Ask as many questions as you can ... I found I was so bewildered for the first year or so that it made coming to terms with RA all the more difficult later.
Let us know how you get on
xx
Joanna
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Rank: Member
Groups: Registered
Joined: 2/4/2010
Posts: 11
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Hi there,
Well a mixed experience yesterday. I actually took my Dad along with me (slightly embarrassing for a 41 year old!) cos I thought having another set of ears listening would be a good thing. I saw the most junior member of staff working yesterday (she looked about 12!) and so she was really sweet but kept nipping out to check things with her boss, so not ideal. She agreed that my current treatment wasn't working and confirmed what I already thought which was that my immune system is pretty non-existent at the moment. However she said she felt there were more options to explore before going down the Anti-TNF route (much as you all said). She also said my RA wasn't severe enough at the moment for me to qualify - which did make me really mad! She said that I was only presenting with 6 inflamed joints and only 3 of them severely which wasn't enough! When 2 of the severe ones are both your wrists and you have a one year old child I was moved to argue with her. To no avail. She wants me to stick with the MTX but has upped my dosage to the maximum now and has said to get some x-rays done and come back in 3 months. She did give me a depo injection to try and ease the swelling in my wrists though. Hopefully this will work, but I have said that if there is no improvement in 3 months I want her to talk to me about alternative routes - whether anti-TNF or anything else as I am close to having to change my job if this doesn't work and that will result in a major impact for my family. She was sympathetic to that and said that personal factors are taken into consideration when reviewing treatment. So we will just have to wait and see (and wait just a bit more!).
Hope to hear from you all again soon and thanks again for your support.
Maddiex
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Rank: Advanced Member Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
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ah came on to find out about you!
good, sounds like it's all lined up for next time.
i hope you have nice rest with the steroids working.
hope the MTX doesn't make you feel icky.
good luck, speak soon xfx
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Rank: Advanced Member Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Maddie,
I am glad that the appointment went well despite the relative inexperience of the consultant. The steroids should give you a window of good health / less painful joints to give the methotrexate time to work.
Keep us updated!
Joanna
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Maddie, I know exactly how you feel, although my own children and older, youngest daughter is 16, I childmind, so have two babies to care for. I have fellt so ill, and in pain, and each time its one more mtx pill and wait and see. i made a private appt with a consultant, and he told me that the joints were continuing to be damaged as the RA not under control with the mtx. He suggested adding sulfa and planequil to the mtx. Also to haved a course of prednisolone to get it all kicked in. I have an appt tomorrow with my rheumy to discuss what next, and will show them the report. It also stated that if the steroids work, to add the other meds straight away. My GP gave me the prednisolone and its been great, so much less pain, its amazing. Whether the NHS think so is another thing. I have also been lucky enough to be acepted on to the private cons NHS list at another hospital, so will transfer there. He actually listened to what I said, and says if its controlled theres no reason why I cant work, whereas the clinic usually say, it may be best to consider stopping working. My hubby doesnt work due to ill health (heart and diabetes) so I want and need to continue working. Sorry to go on, just saying that sometimes if you can afford it, its worth getting a second opinion, as it appears that the clinic onlly want s to give us the mtx. Good luck, I hope the mtx kicks in for you, and the depo too. Let us know how you go on  BARBARA
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