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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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i will do a longer post but I am so pleased for the lovely lovely Jean.
I have no RA control whatsoever, but it really isnt the most interesting part of me (promise! )how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 10/21/2010
Posts: 178
Location: aberdeen
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hello suzanne, hello everybody
mine isn't a long term story as I was only diagnosed in july of last year. after faffing about a bit, I started on 15 mg mtx in early september, having presented with a rf of 224 and anti ccp of 239. don't know what my das score was at that time but a follow up visit to the rheumie in november showed my das was 3.96 and on the way down. my mtx was increased to 20mg at that stage and a follow up visit in january of this year resulted in a das of 3.44. I'm due for follow up appointment in may/june. pain wise when I look back can't believe how difficult things were just six months ago, how I couldn't even move the duvet around me and doors were manouvered with anything but my hands (bum, elbows or feet). having completely come off the diclofenac in the last six weeks really gives me an idea of how far I have come, when I was initially desperate for all three of those prescribed each and every day. nowadays I manage the pain with the occasional co-codamol or paracetemol. Jean's news is wonderful for all of us.
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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it's been good to read the posts and know that Drugs do work, if it wasn't for this Forum i would be worried by now that this is my lot ... so i have to have faith that i will get under control, and nice to hear so many of you are doing so well.
Jean what an inspiration, am so pleased you are in remission after suffering so badly am sure it's give us all even more hope.
my next appointment for Anti-TNF is 23rd February then not sure how much longer it will be before i actually start them.
will cross that bridge when it happens.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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hi Folks - my first time on here! I was diagnosed very quickly about 14 months ago. My knuckle joints and index fingers suddenly swelled up but my gp knew what it was and referred me straight away. I also had a huge shoulder pain problem at the same time. I tried MTX first but had really bad side effects so had to stop. Then tried Leflenomide and added sulphasalazine. Neither of these have really worked and my knees all started swelling up - I had to have the fluid drained off and have had steriod injections and infusions! I'm still on Leflen and Suphas and 15mg of prednisolne and I'm just about to start Humira - being delivered tomorrow. So I'll let you know if it works! Would like to know any of the early side effects if anyone has tried it, as I'm off on holiday abroad soon!!  My biggest problem apart from the pain is tiredness! Anne
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Anne,
welcome aboard.
i was diagnosed quickly like you with a good GP.
i'm not on Humira but i'm sure others will soon help you,
why not put a Thread in the New Members section where we can welcome you.
and i think most of us can relate to the tiredness.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/16/2009 Posts: 156
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Hi Jean what good news it is to hear after all the pain and rotten days you must have had you are getting some happy and pain free ones back if i was you i would want to stand on the highest point and shout hooray Iam and sure most of the others that post on here are over the moon with your progress keep us all up to date with progress and it does help us to know what can happen. enjoy your new freedom Lots of Hugs Audrey. 
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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I was diagnosed in 1996-7 ish. I was in my last yr at uni. Living in Hampshire, looking back we know I had Lymes disease at the age of about 18....
started on suphasalasine- using the then newer idea of hitting the disease hard. Went onto full dose.
No effect.
started on MTX to go with SLZ to start with then dropped SLZ. living in Norfolk
Increasing MTX over a year to the then max dose of 35ml (they dont do this one any more!) liver problems and had to stop.
lots of prednisolone. Terribly active disease, many times in hospital unable to feed myself etc.
went down to london for the Enbrel trial approval appt- I got on the trial and within 24hrs felt different. so much better!
had strange lumps up my sides which the registrar ignored and made rude comments about my weight and these lumps.
seriously ill within 2 wks of seeing hosp with major surgery and pethadin for major abscess and blood poisoning.
the registrar panicked and took me off all drugs and refused to allow me to see the consultant.
my gran paid for me to see him and I went onto to have 2 further good yrs on the enbrel. I worked part time and was going on ok- still terrible pain at times but flairs were much reduced. Hospitalised only a couple of times a yr when ground to a complete halt...
by yr 3 I had got divorced and moved back to hampshire- I was placed with my adoptive children but by then the enbrel wasnt working so well and I started to get kidney problems.
Ended up with renal failure, plylonerphritis. my CRP and my blood pressure has never got down to levels they were previous to this. I met and married the lovely richard and we adopted the children together.
My rheummy wanted me to try the other anti tnfs but I was too afraid at that point so went for triple therapy. MTX, SLZ, Hydroxycloroquine. It didnt work. tried MTX by injection. No effect. Liver went up! off MTX. then tried leflunomide. No effect. I had to take medical retirement from teaching as just was not reliably well. VERY tough on all of us. Richard changed his hours to do 4 days a wk. we moved so we had less debt.
decided after much soul searching to try Humira. Severe D and V within 30mins of injection. this lasted 3-4 days. tried several times but each time got sicker. ended up with confusion and MRI revealed the Humira had effected my cranial nerves. So no more humira then.
My treatment moved to bath, they do inpatient treatments there. Several inpatient treatments of steroid pulses and intensive hydro and physio etc. Really good understanding care there but so far from my children and family it was ever so hard. Started to give me gold injections but immediately kidney readings were off. I kept taking steroids and they supported me in attempting to get prgnant. By then I was 29. They do say for you to have controlled disease before trying and come off all meds but actually in 10 yrs I have never been classed as clinically controlled (even on enbrel for other people this would be called non controlled). we lost a baby. we carried on and had some investigations which revealed we had basically no chance of further conception.
Sadly we resigned ourselves to it and we did have 2 lovely children anyway.
then I got really ill, hormones all over the shop and I felt terrible. Got admitted to Bath and was told I had developed serious steroid complications and needed insulin for drug induced diabetes. They wondered if I had perimenopause and then did a pregnancy test. I was pregnant!
I had Bernice early, amist several life threatening complications for us both- she was 6 wks early. Knowing what I do now I realise I went into adrenal crisis. (Only dx with adrenal surpression secondary to steroids in 2009- she was born in 2007).
anyway, again after she was born I decided with the families support to try a new drug called retuximab. 1st infusion, I felt so rough. but i stuck it out. a flair after a few days was to be expected and I went for the second lot. again very unwell throughout. I came back to southampton and my heart just started racing off. into rescuss 4 times. then the neuro problems started I couldnt co-ordinate walking and was slurred but the worst thing was the burning skin on my legs. I screamed and screamed. They had to move me into a side ward. they moved me to bath after a couple of wks pushing for pilar to post. they didnt know really what to do. did an mri and said it was normal. (I later find that it is not normal)
now having multiple complications we decide best to be treated at our local hospital without in patient beds. we go for southampton. having tried azothyaprin and yet more steroid i am offered another new treatment. Tocilizumab. With high high hopes of once more being well (!) I went for it. within minutes I cant breathe. my tongue swells. they get the crash team in....
I vow never ever to have a drug again....
Within months I am so desperate I will beg the dr for anything and so I agree to Cimzia. Brilliantly it works on the RA within 24 hrs. within a month the neuro problems become much more active having been "quiet" (not gone altogether as controlled by gabapentin). this ends in several hospitalisations, loosing feeling to swallow etc and MRIs and LPs where it is revealed there have been several strange MRIs...
the ra is awful, now eating various internal organs and processes. no choice really but to try another treatment and so agree with some trepidation to try abatacept.
we are awaiting the cock ups of communication to resolve although the progressive neuropathy may mean I cannot have it after all.
Severe disease is not much fun (only 3% of RAers get this), but I have a wonderful life full of interest, love, tears, more love and genuine joy. Infact I would say my faith and my joy are what really keep me going. I have defied this horrid disease and have done open uni and now am using my 2 functional hours a day to use the laptop and set up a social entrepreneurial business. I have one day a wk on the course for this and I am incapacitated totally for 2 days afterwards. My care package allows me to do this. I love a good laugh and am very blessed with a roof over my head and a very supportive family. we have needed it as apart from my disability- our adoptive children have very specific needs relating to their poor early starts. Our adoptive daughter is living at a therapeutic school now to help with her needs and her moving and the loss of her has caused my RA to escalate following the tocilizumab anaphalaxis.
if you are still alive after all that lot- congratulations!
AS i say, not many RA sufferers get this way, severe sero positive anti ccp + systemic rheumatoid with complex immune disorder and other (yawn) endocrine and neuro things make for an interesting life thats for sure!
only 3% get severe RA eh? well! nice to be in the top 3% for something eh?!how to be a velvet bulldoser
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Ps. you did ask! how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 3/24/2010
Posts: 102
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Oh Jenni - what a fantastically positive attitude you have - and we love you for it!!!!!!! 
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Jenni,
what can i say after reading what you've been through and at such a young age,
i applaud you for your positive outlook in the bleakest of times ... and your Children must be a blessing to you.
well done for all your achievements in life,
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 64 Location: Southampton
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Hi Suzanne & everybody. Well my story is as follows: I also live in Hampshire - Southampton to be exact. I was diagnosed 4 years ago next week (oh my god how time flys !). I know it is next week as it was just after hubby's birthday and a couple of days before we were due to fly off to Tunisia - now there's a story I will end with !! I had been having trouble with swollen joints -hands. wrists, fingers; feet, - walking and basically using my hands for a few months before then. I think the trigger was moving office and all that it entails. I was prescribed mtx and have been on this ever since. Current dosage is 7.5 mg weekly - quite low I know but I have been on higher doses - I think the highest was 15 mg but my liver & kidney results went off the wall - not good as I suffer from high blood pressure as well. I am still fairly mobile - I have probably only lost about 5-10% mobility and am still in my fulltime job as an office manager & PA. The story I am going to end with: well as I said I was diagnosed a couple of days before we were flying to Tunisia. The hospital had given me a steriod injection to ease some of the stiffness and swollen joints before I went off to Tunisia. It was an early morning flight from Gatwick to Monastir (with Thomson); we joined the rest of the passengers who are advised to board early if they have difficulty walking (never ever thought I would be one of those at that point). Got to Tunisia ok. Got our luggage and made our way to the coach for the transfer to hotel. !! I could not get up the steps of the coach; they were too high - Ian had to shove me up with the Tunisian driver trying to stop him as it is rude in Tunisia for a man to put to hands on a woman's backside - even if they are married!! It look about 5 mins to get me onto the coach; embarrasing or what; luckily we both saw the funny side of it
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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I always cry when I read about your RA journey Jenni. It touches me that you are always such a positive, supportive and caring friend when you have so much to deal with. God bless you xx
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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I agree Jean - Jenni's story is alive with courage and grit and love and hope. You truly are an inspiration Jenni Every one of us has a journey which can help others. I'm so thankful fo rthis forum and for all the strength it povides. Well done Suzanne - you started a fascinating thread! XX Ailsa
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Guys! How do I write a 23 year history in a nutshell! Hmm ... that is a difficult one! Each event with RA could be turned into a novel. So where to start ... grab a cuppa and a chocolate biccie and here goes! 23 years ago (1988, I am just 31) I had a baby daughter called Abby-Jay. Three months later I experienced the onset of joint problems, pain in my feet and ankles. Several months later, you had to wait a long time in those days, I see the rheumatologist. Watch out, man at work! He prods and pokes, twists and turns and not one joint escapes his interrogation. Phial upon phial of blood drain from me. Examinations were never my forte and this one was not going to be any different. Results imminent ... fail. You have severe sero-negative Rheumatoid Arthritis. Two days later I couldn’t move; I was in agony, burning up, nauseous, very tired. I had never experienced this sort of pain or distress before! I was prescribed high dose Prednisolone and Chloroquine; in those days steroids were the accepted way forward. Childbirth was the catalyst; it set the wheels in motion for the years that followed. In the following months I lost three stone as my appetite disappeared: I was only nine stone to start with! I could barely walk, I couldn’t look after myself, everything was so painful. I had a baby daughter I couldn’t look after … it was heartbreaking. I was not well enough to return to work and a year later, June 1990, I was medically retired from my management job in Legal Aid. I tried every drug I was offered. I wasn’t getting better but I stayed positive. Why should I let this beast of a disease take my life, my life with my family? I fought back. The arrival of our three boys, twins Ian and Jake in 1993, and Louis shortly afterwards in 1994, completed our family. The pregnancies gave me temporary relief from RA. Although not quite in the plan, I now had a large family, three babies under 16 months and a 6 year old. I remained positive, RA would just have to take a backseat, I had other things to do! Then followed a gut wrenching 8 years of different drug regimes as RA decided to wreak havoc and live a life of its own in my body; gold injections, sulphasalazine, leflunomide, azathioprin, methotrexate and the rest. Each worked for a time … then stopped. Its 2003, I am put forward for a trial of Infliximab (Remicade). The results of the infusions were literally amazing; I had my life back and with it I was able to do many of the things I believed I might never do again. A year later, it lost its potency, problems started to return. Three months later I was offered Enbrel (Etanercept) in combination with methotrexate. The combination has been wonderful and worked well alongside a maintenance dose of prednisolone, until … Early last year Neutropenia took hold; the body’s inability to produce sufficient neutrophils to fight infection. Cause ... Methotrexate! One infection after another saw me waving goodbye to my long time friend Methotrexate. Think I’ve tried and failed on all the DMARDS so now I wait and see how things go on Enbrel and Prednisolone (3mg). One operation later, one huge flare later in Cyprus (just where you want a flare!), things aren’t looking too good. I have Leflunomide added to the mix and now I wait … Thank you Suzanne for starting this thread. It's been great to read each story and it has encouraged me to add mine. I guess very few of you knew my story until now. It is not a story of particular success as I have significant joint damage from uncontrolled disease. That's life ... those of you diagnosed in the last 10 years have the benefit of improved and faster diagnosis and more efficient treatments and will, fingers metaphorically crossed, live a near normal life. So, when you are poppin’ the pills that you really would prefer not to take (they are, after all, mighty toxic stuff), remember, they are a means to an end and nothing more. A fistful of pills is a small price to pay for a life, yes, one with a chronic disease, but one hopefully without joint damage. Lyn xx P.S. I have blogged a more detailed version of this for the NRAS Health Unlocked site which is due to go live, tomorrow, Thursday 17th. February. Here's the link!
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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ohhh Lyn,
i knew you had been through the Mill, but it's so sad to read when it's diagnosed at a young age.
your knowledge is second to none in helping us on the Forum,
and when i start my " panic state " as i do very well when i have to start new Drugs, i.e. the Anti-TNF's i know i must be thankful that i was diagnosed in my late 50's and as you say where the Drugs have come on in the last 10 years.
that is one thing i clearly remember my Consultant also saying to me the day i was diagnosed last June.
thanks for sharing your story and your knowledge,
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 263
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Oh Dear Lynn ! What a terrible time you have had . You are wonderful to have coped the way you have. I really admire you and others on this site . My RA was horren dous six years ago . At least i soon picked up on mtx and plaquinel. After your story i cant complain as i am fairly pain free but very tired . Kathleen Mc.
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 263
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Hi Jenny , just read your post you are a fantastic lady to have managed to keep going and look after your family and be so positive. A good family is a great help.
Kathleen Mc.
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Jenni and Lynn
Thank you for sharing your wonderful , inspirational stories. Wonderful
Rose
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Rank: Member  Groups: Registered
Joined: 1/4/2011 Posts: 14 Location: London
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Hi All, I got diagnosed with RA at fourteen years old (now 21 years old), presumed to be due to stress due to my father leaving home and then passing away from an agressive form of cancer after a two year struggle. Initially I had a swollen finger, and due to the recent death of my father (who has presumed back ache, which turned out to be stage 5 cancer) I presumed the worse. The doctor stated that he was sure that it was tendonitis, but would do a routine blood test to ensure that nothing else was going on. And there it was - a nice little rheumatoid count in the blood. Initially this started off very low, and my specialist (Dr. Rod Hughes - amazing man!) stated that it could either go away (as I was on the cusp of Juvenile RA) or get worse, and unfortunately it got worse. Between the ages of 14 - 16, my weight dropped to just over seven stone, and I could barely dress, walk and somedays when my jaw was bad, eat. I felt like I had lost my childhood, and whilst my friends were out gaining their indepedance, I had reverted to what felt like either a very young or very old person- incapable of doing things for myself. Due to my age, I was very slowly increased on medication - initially only steriods, then arava, then a small amount of methotrexate etc. After about two years of the disease taking hold of me, things started to get better. I was finding that I was able to lift my arms above my head, and get into the bath just by bending my knees (rather than semi-falling in!). Nowadays, most of my friends say that they forget that I have RA, and most people who I tell are shocked. I live a 90% normal life. Yes, I get tired easily, and due to damage in my hip (almost bone on bone - ouch!) I do limp some days I now feel it is not ruining my life. I know that things will come along which I will have to overcome - having a hip replacement, having children etc - but I just feel that these are the cards I have been dealt with so I just have to get on with it. And on the good days - it makes me even more grateful. Looking back it makes me laugh how much small steps meant. One day I ran for the train when I was seventeen (only about 7 metres) and remember calling my mum in tears as it was the first time I had run in three years. Nowadays, I go out clubbing with my friends (on very large heels!), I have a full time job in central London, I have an amazing boyfriend, and I have got back into amateur dramatics which I had to stop at fifteen due to poor health. I know I am only young, but I do hope people take something from my long (sorry!) story. At points, I felt that I would never have a 'normal' life again, whereas now, I wonder how it was ever that bad. Just take each day as it comes, and I alwaysa cross my fingers each morning that mine will stay as under control. Sorry this was so long - the sad thing is, for 21... its only the half of it! Francesca x Francesca x
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Rank: Advanced Member
Groups: Registered
Joined: 12/8/2009
Posts: 43
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Hi Francesca
Sorry that you have RA,especially at such a young age.You seem very positive and determind to get on with your life.What you have been through you are an inspiration.
Poppyxx
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