|
|
Rank: Advanced Member  Groups: Registered
Joined: 3/17/2010 Posts: 42
|
Hello All I haven't posted for a while so I thought I would bring you up to date with my situation and then ask for your advice. I was diagnosed with RA in March 2010. Since then I went straight onto a drug trial where by I was treated with MTX, Etanercept and Folic Acid. The aim of the trial is to see if hitting the RA hard after first diagnosis could reduce the progression of the disease. The trial lasts for around 2 years. The first year you are given the drugs with the aim to get the disease under control. The second phase started after 12 months when you could be put onto either a reduced dosage of the drugs or a placebo for a further 12 months. I started the regime last May and I have just entered the second phase of the trial. All had been going well until March 2011 when I started to experience pains in my left wrist. All the other joints were under control and I was managing to hold down a full time job as a NQT teacher in a busy secondary school with the absolute joy of forgetting I had RA. Anyway I went to the doctor and they took a look at the wrist. They said they could not give me anything for it as it would not meet the protocol of the trial. I definitely could not take any steroids or anti-inflammintories since this did not meet protocol. I was told that I could take paracetamol or tramadol for the pain and was told to wear a splint. The tramadol made me sick so I decided to stick with paracetamol and just wear the splint. My wrist was getting stiffer and I was reducing flexibility but I kept on thinking all of my other joints are under control keep pushing on til the 12 month review when I was told I could have a shot of steroids before moving on to the second phase of the trial. May 2011 - I went to the hospital for my annual review fully expecting to move onto the second phase. I was feeling well apart from my dodgy wrist. They took some X-rays and did some blood tests and then the nurse came back to tell me that my DAS score was too high and I was now off the trial. She then told me she could not give me any drugs but I should come and see the consultant in 2 days time to find a way forward. I went back and it turns out that the reason my DAS was high was to do with another medical condition totally unrelated to my RA in which case there was an argument to put me back on the trial. Great!! Well it took a further two weeks of arguing and one stroppy letter from me before I was put back on the trial and given some medication. Yes - I was left for nearly 3 weeks with no treatment. I never got an apology about this and it left a bitter taste in my mouth. I have now been in phase 2 of the trial for 5 weeks. I can honestly say that my symptoms have got a lot worse. I am not as bad as when I was first diagnosed but I now feel rough every evening (not so bad during the day). In the evenings I feel shattered and my legs and arms ache. I hobble around and have to sit with my feet up to rest them. My left wrist is ok (either that or I am just used to it now) but my left arm looks wonky. I am now seriously thinking of leaving the trial because I feel I am being treated to a protocol and not in the best interests for me. I had an appointment with my NHS consultant this week and voiced my concerns. He was sympathetic to what happened to me in May and said that he had never heard of a patient being managed in this way before. He has given me a prescription for 15mg of MTX and naproxen to take when I feel pain. He did not give me any folic acid and when I enquired why he said " I will tell you if you needed it".  So my dillemma is - despite my treatment in May (when I had no meds for 3 weeks) should I stick with the trial or is it a case my symptoms are getting worse and I should get off it and go with the standard NHS treatment? Have any of you taken MTX without taking Folic acid? My pharmacist thought it was odd and I should check with my GP. Sorry to have gone on. I wanted you to know the background just in case anyone else receives this same treatment whilst on a trial. I also have no idea how I should be feeling one year on after diagnosis. Should I be pain free or is a level of discomfort normal?
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
|
Hi Agneso,
It sounds to me as if your RA was not well enough controlled for you to go onto the second phase of the trial and be given a reduced dosage , or you could even be on the placebo.
The 3 weeks without drugs probably would not have made any difference as the drugs you had been on would still be in your system. That effect has now worn off and you are not responding to the reduced dose or placebo, whichever you are receiving.
When I went on a trial for humira after having RA for 7 years, everything was clearly spelled out, especially the fact that I could not take other drugs for the RA while I was on the trial, and this should have been made clear to you.
I personally do not think newly diagnosed patients should be offered drug trials. In the first couple of years you should be taking drugs prescribed and controlled by your rheumy consultant so that he or she can have a true picture of your progress.
The consequences of possibly being treated with a placebo are unacceptable for patients in only the second year of diagnosis.
You have every right to come off the trial and I think that is what I would do but the choice has to be yours.
As to your qestion about folic acid, I know there are some consultants who prescribe mtx without giving folic acid, but the majority prescribe both together.
Good luck, I hope you can get some improvement of your RA soon.
Love, Doreen xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
|
Hello Agneso
What a parlarva. I have not been on trial drugs or either have a done a drug trial so no knowledge.
However reading Doreen response , from a woman that knows , her advice sounds good.
When I was on mtx (I am not now) I also took folic acid, but as Doreen states Consultants do
have different ideas.
Good luck though
Rose
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 4/12/2011
Posts: 79
|
Hello Agneso..
Doreen's reply sounds logical to me and one thing I can't believe is you weren't told or didn't consider the risk of being on a placebo in year 2 that could have had you deteriorate anyway.
Given your symptoms can you make them tell you whether you are on placebo?
-Darshin
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
|
Hi
I am so sorry that you are having such an awful time with your RA after a successful first 12 months on your drug trial. I have only been diagnosed with RA for two years so I really don't know what to advise you on this front, although Doreen really sums it up.
You say you are only taking paracetemol for the pain. Are you taking the full eight tablets every 24 hours continuously? It can be very good as long as you take the maximum you are allowed. You also say you tried Tramadol but it made you sick. I was also prescribed Tramadol and I stopped taking it because of the same symptoms. At the beginning of the year I went into hospital for an operation and they pumped me full of morphine for several days. I can now take the Tramadol without any side effects. I asked my GP why and he said it takes your body time to adjust to such a powerful medication but if I had persevered for a few weeks, then eventually the symptoms would have worn off. You can also get some anti-sickness tablets if you need them. You also say you are taking Naproxen. This is not a pain killer. It just decreases the inflammation. Pain relief is not a solver of problems, just a way for us to get through difficult times.
The only other advice I can offer is that after 12 months following my diagnosis I did not think my treatment was going along the right lines. I paid to see a Consultant Privately (£125) and he went through all my medical history, listened to what I had to say and gave me a good plan to move forward. He had the time to talk to me and listen which is not always easy with a NHS appointment. He then copied in the NHS and they were happy to follow his suggestions. Just a thought, as I know this is a lot of money, but it was worth every penny to me.
I hope that you are able to come to a decision soon and that you can find some relief from your RA.
Jackie
xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
|
Dear Agnes I can't comment about the trial as I've never experienced it. I've had RA since 2007- diagnosed in Feb 2008.I'm on standard nhs treatment of methotrexate and sulfasalazine. I can go through phases whre I am relatively pain free although I do have some discomfort for most of the time. It may be stating the obvious but, being a teacher myself, I find the stress of the job does contribute quite a lot and at times of high pressure like coursework deadlines and practical exams I can have a flare for several days afterwards. I find it also affects my wrist- particularly if I use the computer for long periods. A splint helps- not the most attractive of items. I'm thinking of customising mine and jazzing it up a bit  This could possibly be a contributory factor to your problems- especially as you are going through the tough time of being an NQT . I think it's easy to underestimate the effect our job has on RA.(sorry-I hope you don't think I'm being patronising- I don't mean to be). Like you, I feel worse at the end of the day- as a result of being on the go all day. I still haven't learned the art of pacing myself - but then, in our job, it's not easy. and yes, keeping busy does help us to forget we have RA. When I'm feeling ok I carry on as normal- until it hits me!! I also found that about 18 months after I was diagnosed, I started to get worse- so I was put on the methotrexate after being on sulfasalazine only. Such is the unpredictable nature of this rotten disease. I take paracetamol on a regular basis- one a day which does help. I was advised that in order for it to beneficial it was necessary to do this rather than wait until I was actually in pain. I tried tramadol but it did nothing to help. I was on naproxen at first but am now have meloxicam if I need an anti inflammatory. Well done for getting through the tough year- the end is in sight- only a couple of weeks to go- yay! Best wishes- hope things are sorted for you soon Take care Maria ps have you had an occupational health assessement with your local authority? I did at the beginning, when the Head referred me, and they were very helpful, making recommendations for the school to make 'reasonable adjustments' to help me.
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
|
hello
Just wanted to send some empathy your way.
I have been on a drug trial.
I took the enbrel trial.
Here is what happened to me! I lived in east anglia at the time...
I took the enbrel trial in 2000-2001. Within 24 hrs of the first jab I felt better. Like you, I was a recently qualified teacher (primary though!) and wanted to work but had had a lot of time in hospital having failed the available options at that time.
Within a few wks of starting the Enbrel I developed some spots/ lumps down my sides and started having some injection site reactions.
I mentionned these to the jnr dr in the rheumatology dept who was monitoring the response to the drug. He asked if I had changed washing powder.
About 3 wks in I had a bit of a flair up and the dr told me you couldnt have flair ups on the anti-tnfs.
(rubbish!) I had bed rest and started to recover. The enbrel seemed to be tackling the RA- I felt well in myself.
The site reactions and the spots continued.
The spots became angry looking welts.
They were now more like welts/lumps and the jnr dr told me that it was because I was over weight and sweating too much. (I was a size 16-18 at the time so not exactly massive). There was one that seemed to be getting bigger than all the others and was very hot and painful. he didnt even look.
It went a bit black in the middle and went to the dr again and he refused to see me as it wasnt monitorring day and he was off for the Easter break. I tried dobbling it with TCP.
Over the Easter bank holiday I was camping (in a caravan site) and within 12hrs suddenly felt so unwell and I couldnt bear even a light sprinkling of shower water on the lump which was now huge. I literally had a whole night of no sleep.
I went to see the nurse on the camp site, thinking that she would dismiss me with some cream... No! She sent me to the local a and e. (Different to my normal hosp.)
I was whizzed through, not having to wait beyond triage which I felt was odd.
The dr saw me and explained that he was admitting me straight away.
I was admitted and by then I couldnt stand up straight- bent double to the right. the pain was horrific. they put me on pethadin and had emergency surgery within a couple of days.
I had an enormous abscess. It was down to the layer above the chest wall. I had scepticemia. HDU for 4 days.
How I screamed when I came out of surgery as they had hurt my arm- even the pethadin didnt get it. They eventually got the on call dr to prescribe some anti inflammatory and it was a lot better.
After a few days they started packing the wound from the inside out (the first few ones always hurt more) and sent me home. On the way I rang the local hosp to my then home, and explained that I had been in the hospital X near the camp site with this lump and had surgery- could I take the trial drug again as it was due the following day?
They were ever so angry on the phone and I just couldnt understand why.
I came home to a furious message from the jnr dr saying I never should have gone to hospital X and that I need to come to HIS hosp immediately. I did and a strange thing happened.
ALL of the notes about the lumps seemed to have mysteriously disappeared....
ALL of them.
We were taken to a different room to normal and this time was attended by 2 nurses, the dr and someone else who took notes. The door behind us was locked.
When I explained what had happened, the dr was furious and denied having seen me ever before, then relented that perhaps he had seen me once or twice. They took me OFF all medication.
Within a wk I could not move.
I was suicidal with the pain.
The district nurse was coming to pack my wound and I couldnt bear her to touch me.
The hospital staff would not allow me to be seen up there and wouldnt let me see the snr consultant. they deliberately obstructed all efforts to do this. Nurses and receptionists and even the rheumatology ward staff that I had treated as friends suddenly were very cold and offish. When I commented to the rheumatology nurse about this on the phone she said "you have to understand why Jenni" and frankly I couldnt.
I rang the local drs surgery and in the end the GP came out and injected me and gave me some morphine and I just slept. I honestly didnt want to wake up.
My Gran and my Mum came to see me (from Hampshire) and told me that they had clubbed together and paid for me to see the consultant privately. They drove me to see him the following afternoon.
By the time I had seen him I had had nearly 8 wks of no treatment or drugs apart from the morphine.
I went to see the snr consultant privately who WAS RESPONSIBLE for my care and he had been told NOTHING ABOUT ME or what had happened and was horrified.
I explained that the hole under my arm had nearly healed and was desperate to take anything and agreed to take the enbrel again. He referred me on the NHS to see a dermatology consultant who looked at the lumps down my sides and photographed them.
I, and the other patients on that trial who reported lumps are why that appears on the drug leaflet!
I had special creams to clear up the remaining welts and site reactions.
I took enbrel, successfully for a further 2 yrs and the lumps down my sides never did reappear. I worked, adopted 2 children, divorced and moved to live near my family in that time. I was as well as I have ever been since developing the RA- a few flairs but I could walk etc.
In the end I had to stop it as it wasnt really working and I ended up with very regular UTIs and kidney troubles which in the end caused acute renal failure through pylonerphritis.
I dont know if that helps at all but it helped me being cathartic!
Hope you are able to apply some wisdom from it....
Jenni
PS I never did see that awful dr again after that and wonder if he got his marching orders. I hope so....how to be a velvet bulldoser
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 3/17/2010 Posts: 42
|
Hello Again
Thank you so much for the feedback.
Jenni - your experience sounds like a real nightmare. I am surprised you decided to continue taking the Enbrel after that reaction. I am glad the drug worked well for you for a while but its a shame that it eventually stopped working. In the past I have read a little of what you have been through and my heart goes out to you. You do have a positive outlook and you are very supportive of others on this forum. I do hope things work out for you in the long run. It does go to show you of all the restrictions put upon a person when on a drug trial. I can say that the doctors and nurse have always taken my calls and seen me if I have had the odd niggle so I can't fault them there. Where I do have an issue is that whilst on the trial the hospital can only treat me according to the strict protocal as set out by the drug company. Whilst on the trial I was not even allowed to take ibuprofen and whilst on the trial I was not allowed to take any other anti-inflammatories. They could not even increase my dosage of MTX after I had been on it for 3 months since it would then mean that my condition was getting worse than better so then would not have qualified for the trial.
Maria - there seems to be a lot of us on here who are teachers or ex teachers. My RA came on just after I started at my first teaching practice. I am sure that it is a contributory factor to my condition. This is not helped by the fact that I struggled through my teacher training and my NQT year. I am not great at behaviour management so this stress has not helped me manage my RA. Wearing the splint whilst at school was actually fine because it was a visible sign for the students that all was not well with me. Kids can't see pain but at least a bandage is a signal that something is up. It sadly looks as though the school is not going to recommend that I pass my NQT year to the LEA. I am now having to go through the stress of fighting this but the union is on my side. I have decided to leave the school at the end of this term. I do not think the school is right for me and I need to take time to decide if teaching is the right career for me. I don't think my working pattern helps my RA. I tend to start work at 7.45 and leave the school at 6pm only to carry on working at home until 11pm at night. I am exhausted and I need to get my life back. With regards to taking the paracetamol I only take two every morning. The nurse did say something about taking it regularly (ie every four hours) since this would have a beneficial effect. The only reason I didn't do this is that I kept on forgetting to take it during the day whilst I was at school.
Jackie - I like your advice about seeing a consultant privately. I guess it is good to get independent advice. I just don't know how to go about choosing one. Did you just google one or did you have a recommendation? Interesting that the NHS would also follow the private doctor's advice. My consultant seems quite arrogant but I guess I can but ask.
Doreen - thanks for your suggestion. The hospital did give me a whole lot of information when I started the trial but they did not talk to me about the consequences of being on a placebo in the second year. I have no idea if I am on a placebo or not and I will never know but I do feel worse than I did a few weeks ago.
I just want to be clear whilst I have taken a prescription from the NHS consultant I have not yet actually taken the medication (MTX and Naproxen). I am waiting until Monday to talk to the trial nurse before making my final decision about coming off the trial. I am likely to come off tomorrow but I want to give the trial people a chance, let them take some blood and chat to them to see if what I am going through is common or not. I will then make my final decision. Thanks for the info about Folic acid.
I hate RA. I still think why me. Guess I have just got to get on with it.
I forget who asked but my school never referred me to the OH specialist despite me filling in the health questionnaire at the beginning of my contract. If anything I am working harder than the rest of the department because I did not have any year 11 classes this year so I am working a full timetable whilst all the others are benefitting from extra free periods now that the year 11s have gone. They are proposing to do the same to me next year (assuming I stay that is).
Agnes x
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
|
Hi Agnes I'm another teacher with RA! The best thing that I did was to do a post-grad course in teaching children with specific learning difficulties. I did this a couple of years before RA reared its ugly head and it is the only reason I am able to keep teaching full time. It is still busy and stressful but is much less physical. My lessons are all small group or one to one and most of the time I can sit down if I need to. It is also really rewarding. I recommend it. hugs Sue 
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 3/17/2010 Posts: 42
|
Hi Sue
That sounds interesting. What is the course actually called? Do you work within a school or do you freelance?
I have to say being on my feet all day is beginning to take it's toll. Last week I had to make sure there was a free chair nearby to sit on when I went from group to group.
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
|
Hi Agnes The course was a certificate of advanced studiy in teaching children with specific learning difficulties. Basically teaching children with dyslexia. I started out in a state school and now am in a private school. This can be self-employed or as an employed member of staff. I was never too hot on behviour management so this is great as in small groups you get to build up great relationships with the kids. If you are interested have a look on the British Dyslexia Association website which is very informative and lists lots of courses. Good luck Sue 
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
|
Agnes
With regards to seeing a Private Consultant I asked my GP to refer me. He said he could not make any recommendations so I Googled and found the most senior Rheumatoid Consultant in Shropshire and phoned his secretary and booked an appointment. My GP faxed over a referring letter on the day of my appointment.
It was the best £125 I have ever spent as I had a whole hour with someone who knew what they were talking about.
We have a wonderful new Rheumy service in Telford which has now been up and running for about eight months. They have their own dedicated building and are increasing their staff with a new Consultant, nurses, occupation health and physio. The two new Consultant Rheumatologists also work closely with their fellow Rheumatology Consultants in Shropshire so we are very lucky. I just wish you all had access to such a good service.
Take care
Jackie
xx
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 856
|
Hi Agnes
Sorry to hear that you have had a tough year and that you are considering leaving teaching.It's not for me to criticise but it sounds like you haven't been given much support. I'm saddened by the fact that you think you're not good at behaviour management. It's hardly surprising you found training and NQT year hard given that you have had to come to terms with having RA and have had to struggle with the physical side of the illness. It's not my place to criticise or make assumptions but I get the impression that you haven't been given much support. It seems a bit late in the day to decide now that they are not going to recommend you pass your NQT year. I mention this because a similar thing happened to me many years ago when I was in good health. Those were the days when we had county subject advisors. Mine was livid that the school did not want to pass me and really took them to task over the fact that he had never been alerted to any problems and that my so called mentor had given me no support. Needless to say, I passed and 2 yrs later became Head of Dept in another school!
I also don't mind sharing with you the fact that last year, after many years teaching and dedicated service, the Head called me in to tell me that he was concerned about my performance and that he was instigating capability measures against me! He produced a list of so called shortcomings, all of which I'd never been alerted to before and were simply, to quote my union rep- 'silly'.It turned out that a very unpleasant colleague in my dept had been causing trouble. The timing was impeccable as I'd been feeling quite ill, and had just suffered a bereavement. I was devastated and felt like resigning, but decided I was going to fight it and although it was tough, with the help of the union I won, mainly on the grounds that correct procedures had not been followed, and if there were shortcomings, why wasn't I alerted to them and given support earlier? I was so angry that I was treated like this when my only 'crime' has been to get RA.
I hope that it will get sorted out for you- hang in there!!!
Maria x
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 856
|
Agnes
Me again- just read the end of your post re OH referral.It might be worth talking to your union. I haven't got my stuff to hand but OH are there to support staff and management to help them to put strategies in place which will help both parties. There should be information on your LEA website. I have a feeling you are entitled to an assessment.
Have you read the NRAS booklets about work? They contain some very useful information.
Maria
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
|
I hadnt picked up on the NQT bit. I had a real struggle with my NQT yr in a dreadful unsupportive school with a real bully for a head teacher. The year after mine, they brought in all the support not that this helped me. They really did try and fail me, and when they couldnt find something material to pick on they went for my health record and made me attend for medical.
I think it is very tough being a teacher and when you are not feeling 100% managing 30 individual children in a class and keeping them geared up and engaged when you are exhausted is tough indeed. The hours were a total killer as an NQT I rarely did less than a 60-70hr wk.
Are you in a union? I am in the NASUWT and they have always been excellent.
they helped me out and introduced me to a little village school that were entirely different and hugely supportive.
I did well there and became in charge of key stage 1 and science co-ordinator. When I moved here I worked with 4 children with autistic spectrum disorder, team teaching in a large well run school just part time. Then I got my best job ever working in a mixed catchment school. I was sent into to work with a class who had had poor teaching from a teacher who was abusive...
I sorted them out, I got promotion and job shared with the deputy head.
Lovely job in yr 5...!
You might consider going back to college/ doing OU and getting a psychology degree and becoming an educational psychologist. I know its the career route I would have chosen having had my time again.
Jenni xxhow to be a velvet bulldoser
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
|
PS I have become an expert in educational techniques for children and young people who have had early trauma now. I did a lot of study as a result of having 2 adoptees from this sort of background. When you are baby P who survived, access to education is really impossible for many adopted and LAC. Thats my area of interest now! how to be a velvet bulldoser
|
|
|
|
|
|
|
