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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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John
I am sorry you are feeling so down and finding it hard to cope. I would seriously consider Julie's suggestion of steroids in either injection or tablet form. I am waiting for my next medication to be delivered and I have been so low and in pain over the last couple of weeks. My GP has prescribed a two week short course of steriods and today I am feeling a lot better. It is not the ideal fix but it will get you over this hurdle. If you are in less pain and less tired you can start to get your mind around what is happening.
I believe that they have some fantastic people you can talk to at the NRAS helpline if you have not already tried this. You need to speak to people who have been there. Doctors are alright but until you have first hand experience of this, you cannot begin to understand how we are all feeling. They can give you practical advice as well as emotional support.
I am afraid there is no easy fix for this and you are quite right, the lack of support is appalling. The NRAS is doing a wonderful job in increasing awareness of this disease. I believe they were instrumental in changing the NICE guidelines last week in allowing access to further drugs when the sufferer has failed on their first choice. As explained previously I am also new to this disease but I think there is a lot of hope with the drugs that are out there but unfortunately you have to play the long game to access them. If money were no object for the NHS we would all be a lot further down the line with our medication.
Hold in there John and keep pushing for the things you are entitled to.
Kindest regards
Jackie
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi John
Julie makes a very good point, I had one the other month, and certainly does help while meds are still trying to kick in.
I m very sorry to read your latest post, I ve always worked for myself, and it can be really hard at the best of times. I hope your position improves very soon for you. We all understand here more than most, as I m sure you know.
Julia x
PS I like the new name, did well there!
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Rank: Advanced Member  Groups: Registered
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Hi John, Yes you should ask if you have not yet had The Depomedrone Steroid Injection. I had 2 of these around 6 weeks apart they are amazing. At the point I had my first one I was in agony and almost every joint was affected., within a few hours I was able to move a little bit and flex my hands which up to that point I had not been able to do all week. I got the 2nd one 6 weeks later and by that time along with the Triple therapy I was beginning to see a real difference. Try to keep a diary of how you feel I did and you can clearly see when you feel better and when you don't, I kept mine for the best part of a year. Also try to remain positive I truly believe it helps, I was from very early on and believe me there was not a lot to be positive about at that point, I was and had been so ill and bedridden as it was too sore to move, I had muscle wastage in my leg and ached everywhere. You have to believe in the drugs they will help you, you are going to get a bit better, its not always going to be this hard. I went from that to now able to do all I did before BUT with more care and pacing myself. The pain is something I think that lives with you, It does get easier but you never forget. Try to keep strong and believe it will get better and I am sure you will see a difference too. Sending positive thoughts  Lorna
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I reckon the leading research places for RA in England are Imperial College and Leeds (Chapel Allerton Hospital), where Prof. Emery works. I got my second opinion from him on the day my previously negative rheumatoid factor results came back and were sky high. Sadly, from what I read in patient magazines like Arthritis Care I do not think clinical services are the same around the country. I am incensed that people with RA don't get offered anti-TNF drugs within 3 months of diagnosis. I would go for a second opinion and tell your GP you want an urgent second opinion given what is at stake.
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I have had many (perhaps too many) steroid injections - so can't keep going there, I'm afraid.
Alice-S - thank you. I have spoken to Paul Emery, as I wanted him to confirm whether or not a suggestion to see Dr Simon Allard was one of my best options, which he did. I spent days worrying about which one of the three specialists which had been recommended I should go with. My GP has been supportive and has just asked me to name whoever. Today, I made a decision to see Dr Allard at West Middx. and for it to be urgent.
I've been doing quite a bit of looking around, and I agree with you, a lot of PCTs are falling short of the ideal. They are all probably doing their best under difficult circumstances and high demand - but it's small consolation for us, right? It would be great if we were being well managed and well informed, rather than having to ask/beg all the time.
It is a tricky one, this prescribing anti-TNFs after 3 months of diagnosis. Before, I agreed with you (& believe me, the way I've felt over the past few weeks, I still do - how can they expect anyone to carry on functioning let alone working when you're body just seizes up on you) but I keep hearing from the R nurse to be 'patient, mthx can take up to 3 months to work on max dose.' Also, experienced people on this forum and (to a lesser extent my GP) think that these biologics may not be a quick fix/'magic treatment'. For some they've not worked and, because of their toxicity, can cause harmful side-effects.
Let's see what a second opinion brings...Did the 2nd opinion agree with the first?
How are you? What treatment are you on?
John
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john-a wrote:............. a suggestion to see Dr Simon Allard was one of my best options, which he did. I spent days worrying about which one of the three specialists which had been recommended I should go with. My GP has been supportive and has just asked me to name whoever. Today, I made a decision to see Dr Allard at West Middx. and for it to be urgent.
John I know Dr. Simon Allard! He was my expert Rheumatologist in my PI claim. Hope he lives up to your expectations John. Carol
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Oh dear Tabbycat...that doesn't sound like much of an endorsement! Unless I'm mistaken. Was he any good for you? It's not too late to change...
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi All
I think the idea of NOT putting patients onto anti tnf's within three months of diagnosis is that many respond very well to the DMARDS. Anti-tnf's are very serious drugs, as you know, and can have some horrendous side effects - MS being one.
I certainly would have refused anti-tnf's until all the other avenues had been explored.
I do agree, though, that Prof. Emery is one of th best rheummies in the country - I hear that Prof. David Scott is also pretty brill .
Do hope you get everythng sorted out very soon, John. It sounds a complete nightmare at present.
Love Jeanxx
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Hi Jean B
Prof David Scott at King's, London or the one in Norwich..?
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Rank: Advanced Member Groups: Registered
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Norwich, John. He's an NRAS adviser and always spoken of very highly by NRAS.
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Hi John, I do hope you get the answers you are looking for, it sounds like a nightmare situation for you. I really hope the drugs kick in soon and you get some relief from the pain. How is your partner handling all this, I hope she is being very supportive, you sound like you need lots of TLC at the moment. Love to you and your family I really do know what you are going through. Lorna 
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Hi John Poff Scott ( david ) is still around he is retaired or retaring .He may have a private clinc at his home ??? He is or was based at the Norfolk Norwich hospital he speaks at the RiNg group and group that meets in Hethersett Ra in Norfolk group they have a web site When i got dx it came on very quickley and i was useless after working thank goodness i have a hubby . but now i am very good on MTX and i don,t work now but can do lots of things and keep going infact people on think i am mad Where do you come from ? Phoff scott said at the meeting Norfolk is a good place to live if you have R.A AS it can be a postcode lottary means you will get treated and the rummies and r.a staff are good in Norfolk .Kings Lynn and Norwich i know about . christine The chocolate eating housewife ...The washer woman .....naughty lady
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john-a wrote:Oh dear Tabbycat...that doesn't sound like much of an endorsement! Unless I'm mistaken. Was he any good for you? It's not too late to change... ........ we've since spoken. Carol
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Dear John
I know exactly how you feel. There is an urgency in your messages that I remember feeling myself when I was going around seeking information about RA. I am sorry I didn't see your reply to me until today. Like you, I am new to this site and haven't sussed out how to tag messages.
For what it's worth, this was my journey:
I developed increasingly frequent bouts of severe pain in various joints from October - December 2007 associated with an intermittent carpal tunnel syndrome. The CTS proved to be a red-herring although much time was spent investigating it. All inflammatory markers were negative. In March 2008, my consultant rheumatologist prescribed Plaquenil (as a disease-modifying drug for RA). At that stage, I was reluctant to try methotrexate as I was still in "health mode" and it appeared to be a toxic drug. I said Arthrotec, the anti-inflammatory drug, did not help because at that stage I was expecting a cure. Later, I realised the error of my ways and went back on it because it took a significant edge off the pain and I could sleep. But, as you probably know, this is not a disease-modifying drug.
Plaquenil did not touch me and neither did a mega-steroid injection. I was hobbling by this stage, to the great amusement of my teenage son; he coped admirably, even when I said to him: thank you for offering to help, darling, but I only need help when I ask for it. This was about learning how not to be disabled. I would rather struggle with a disability gadget in the kitchen than ask my OH for help. But I always ask for help when I need it.
Methotrexate did not help. By this stage, I was beginning to grieve my health. Knowing that my time was running out for anti-TNFs, I found out about Prof Emery and got my GP to send me for a second opinion. The week before I was due to see him, I saw my own consultant rheum. and asked him to repeat rheumatoid factor levels. On the same day I had seen Prof Emery, he rang me to say the results had come back positive and CRP was now elevated - at 96. So he had finally diagnosed my RA. Looking back, I now know that RF negative RA is not that rare, so I don't know why that wasn't mentioned to me. But Prof Emery's team had diagnosed me in one day, with a series of people in the MDT (ultrasonography, etc) and without the results of the inflammatory markers. From the pattern of joint inflammation, I think it was something about the 4th metatarsal head, they said: this is RA.
I was then offered to go on a research trial for one of their new anti-TNFs which was not yet available for another two-three months. I asked my own consultant rheumatologist where I was more likely to get faster access to anti-TNFs. He has been marvellous since, and really supportive. I got my DAS scores and within a month was on Enbrel.
I have had a marvellous response to Enbrel. Having suffered such agonies and stiffness - I was literally draggin my feet into work - I gave up my disability car badge a month ago, as I had not needed to use it for some months. Gadgets have gradually disappeared from my house and I am now on a serious exercise regime.
Enbrel has its problems, the main one for me being a series of minor, irritating infections of various times: the main problem is having to come off Enbrel when an infection won't go away after a few weeks. That is what causes me problems and it is only then that I have to come off work.
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Update:
I have had two bad months, but nothing compared to what I've been going through over the past few days. I sleep for a maximum of 4 hours per night. 2 last night. I have been in limbo for a month - some days unable to get out of bed and my upper chest is tight through anxiety. - probably coming to terms with what I have, the risks involved and the state of 'flare'. All these things are caught in some kind of vicious circle.
I see the rhuematologist (R) tomorrow. I asked the GP at the beginning of the week for help, but she's said, effectively, let the R see how bad you are.
The GP wants to give me anti-depressants. Do I need more pills? I'd be fine if my legs, fingers, and wrists were able to move & if my feet didn't feel like dead weights! Maybe I just need a pill to help me sleep...? Can you get hemp products on the NHS - it is a natural pain killer is it not?
I've thought about not wishing to live like this. Please don't email me alarmed and tell me to stay positive. I am not going to do anything silly, it's just honestly how I feel and I AM staying as +ve as I possibly can.
How the R possibly expects anyone to live/function like this for another month - which is what I was told - is beyond me, wholly unacceptable and this has to change. If not for me, then for all those poor people who will suffer after. PCTs have to up their game on this disease. They seem to be far too reactive or under resourced.
I am angry (when I have the strength) that I have been left like this. There is no dignity, a seeming lack of empathy and an issue of only dealing properly with you when there is an absolute emergency. Should I not be in hospital?
PLEASE NOTE: The following is for information only and to get it off my chest for people who may read this and have similar questions. I'm NOT asking for the questions to be answered or advice given.
If tomorrow, I'm told the DMARDs have not worked, & we'll need to start applying for anti-TNF. Well, Which one...? How long will it take? The PCT may refuse. I may have to battle. I've not had time nor the energy to look into these nor the pros and cons of each one. They all work different for different people, right? I've heard HUMIRA may be a good option - but I don't know! - we only get 2 strikes, right?
It seems right now that the blind are leading the blind and that there is relatively far too little evidence/experience of these new drugs out there.
Right, got it all off my chest. Need to sleep now.
J
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hello john
sorry you are having a really rough time.
I have spent time in hospital- only as a last resort but sometimes it is the only way to get to see the global specialists as you are right under their noses. Whn I can no longer move to feed myself then I know I have to face going in. Hospitals are no fun, they are geared for elderly acute care mainly so you will be begging to get out of there within minutes of going in....but go in with a goal in mind- like starting a new drug, hydro package in place and having investigations into a bit that has gone wrong- you can keep your mind on the goal and cope with hospital.
Im not sure why you put the questions not to be answered on your post? Bearing in mind all the answers are on these forums- or on the link to the old forum. there is A LOT of evidence about the anti tnfs- their comparisons etc scientific and experience based. Some of us have almost (and some literally) given their lives for those studies John.
LOTS and LOTS of information- by ALL MEANS ask.
Plus you can go from one to another sanctionned by the NICE (should be NASTY.) people
I would recommend the happy pills, but consider talking therapies and proper relaxation first. I have been lucky in the respect of blueness. but sleep issues etc have been tackled with successful pain relief- I think you need an urgent drug review and to see the pain clinic. Butrans patches come to mind with breakthrough pain control tramadol/ oramorph.
I tell you what John, if you are feeling depressed it is an illness that is largely treatable and can make SUCH a DIFFERENCE to your ability to cope with life. Take the damn pills- no medals for martrydom here! there are herbal things you can take- richard takes Kalms sometimes.
Further, chest pains and hurting ribs can be part of the RA John, I have a couple of things that cause this 1) Costocondritis and 2) Pleuritic pain. I have known people go in an ambulance with suspected heart attack the pain gets so bad- so I know it really really hurts.
Your immune system is different to everyone elses on the planet. there are bits that they KNOW go wrong in people with RA in general but they cannot know what is exactly going to work on you they can just go by statistics and in general MTX is the gold standard drug. It works for most and is well tollerated. Never did work at all on me. I went through a lot of treatments and now am doing well on the Cimzia having failed or not tollerated the others.
the NRAS main site has a lot of links about the drugs, the history of RA and treatments and other ways of dealing with the pain (energy conservation, hot and cold treatments etc.)
Flair management is something you need to discuss with R and his/her nurse. A BIG stab of depomedrome is generally a way forward with hydro after (if you can get it)
As much as I wish it were not true- sometimes there are no answers, magic wands or miracle treatments that will stop the RA. You are going to have to find a way of working out life with this crappy disease and that is not easy. Life coaching with a Health psychologist might be worth looking into (If you're anything like the blokes I know counselling is not something they would find easy to embrace but life coaching feels better to them so go for it!)
But there are things that improve the lives of suffers immensely- its just finding the right one for you but in the meantime that pain needs sorting out. I have been so bad I would have cheerfully bitten off my own hands at times so I do understand.
Love
Jenni
PS If you are on Sulphazalazine- it can make you feel gloomy. Just one thing to watch. how to be a velvet bulldoser
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Rank: Advanced Member
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What a Good reply Jenni!
Depression is often a physical illness, not a wimpy state of mind, and 'Ending it all' is a thought that many have considered, but it is often un-voiced.
Hang on in there, and when you can, fight for what you want. Life with RA will be different, but in which ways, we cannot predict. We are after all, the most adaptable form of life on this earth.
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Thank you jenni, so much. I've just come out of my Appointment: das 6.7, inflammatory markers all up.
She's starting process for humira. I hope pct doesn't interfere and that I'm on it soon. Putting up pred to 30mgs per day.
I am seeing a counsellor and have been given tamazipan to help sleep.
I need to ask for more therapies and have been told I need to ask physio for hydro, pain, hands, podiatrist.
I'll look into the other things you have mentioned and will search the site for drug info.
Thank you so much for your generosity. Am so glad that cimzia is working for you!
I was told by a doctor that it's methatrexate that can make you feel lethargic & tired...? I am on salfasalizine, but like I said, I don't think it's doing anything!
J x
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Rank: Advanced Member  Groups: Registered
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Hi John,
So glad that you are being considered for Humira- I'm about to start it myself. I don't want to say that there is any medical evidence for this but must tell you that I tried the Sulphasalazine with methotrexate and felt really depressed. My rheumy said that it wasn't the drug - it was the RA - then lo and behold, I read on here that other people had a similar experience. I was in a really bad place (also trying to keep on working as although I have a partner - my salary contributes to about a third of our income). I had to stop the sulpha eventually because my stomach didn't like it - the rhuemy finally agreed when I got a strange rash as well. Three days after I stopped - it was as if a big black cloud had been lifted. I'm still struggling to find the right meds but have never been so down as when on Sulpha. I do feel tired and lethargic after methotrexate but it passes the day after. Sorry not offering any solutions but just wondered if would be worth a trial period without? Take care.
Julie
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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John, I'm with Julie on the depression side of sulfa and mtx. I have just stopped sulfa due to rash and tummy problems. Am on mtx and hydroxy and looking at leflusonide (??!!) spelling - no mention so far of anti=TNF so will have to see, thinking of seeing my GP re feeling so down though, not sure about taking anti depressents, but hey, we do what we have to just to keep going, and working is so so hard at the moment!! Good luck JohnBARBARA
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