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Rank: Newbie
Groups: Registered
Joined: 10/12/2010
Posts: 9
Location: Somerset
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Hi everyone - I am a new member and was diagnosed with RA in Feb 2010. It took from November 2009 to get diagnosed and I'm not having much luck with treatments. I already had OA in both knees (probably through years of riding my motorbike !) but the RA is a totally different experience. It has spread very quickly from knees to hands, wrists, fingers, feet, toes and now both shoulders. I have had steroid injections into the joints which did not help. I was put on methotrexate which inflamed my liver so I had to stop, leflunomide which raised my BP so I had to stop and I have been managing on large dose steroids since May but these have not controlled my pain and stiffness at all. In desperation I saw a private consultant on Sept 18th and I am starting on CIMZIA  (anti tnf) injections this week. Has anyone got experience of these injections and what I should expect? At the moment a day of pain relief is all I want but I am very nervous of this new treatment although my RA nurse is very positive about the outcome. Any advice would be welcomed Sue
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Sue and welcome,
i also suffer badly with Osteo Arthritis in both knee's which is awful but agree RA is totally different !!
mine is also hands and wrists and fingers mainly.
sorry i can't help about the Drug as i am so far only on Methotrexate which hasn't worked to date having been on it since June and just had my dose increased.
interesting that you went privately does it now mean your National Health Hospital won't have you under their control any more..? would be interested to hear back on that one.
i think we are all nervous on taking these powerful drugs, there is a wealth of knowledge on here so somone will come back to you shortly with an answer.
i'm 57 married with a grown up Daughter.
look forward to hearing how you get on,
Suzanne
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Rank: Newbie
Groups: Registered
Joined: 10/12/2010
Posts: 9
Location: Somerset
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Thank you for your reply Suzanne. I am also 57 with a grown up daughter, Jess who is a journalist in London on a national paper. She's 30 ! I have been a very active career woman all my life and in my spare time rode Harley Davidson motorbikes all over Europe. Until I was struck down (and that's what I feel has happened to me !) with RA last November, I was always on the go. Since then I have been unable to walk without sticks or wheelchair on bad days, and have not been able to travel or work because of the severity of my pain and disabilities. RA stopped me in my tracks completely.
I saw a private consultant in September because I was told my next NHS appt. would not be until Feb 2011 even though I had failed to get any relief from 2 DMARDS and steroids. It cost me £220 for an hours consultation but I had a thorough examination (had not happenbed before on my only visit to an NHS consultant) and was told my DAS score was 7.9 and my ESR was 93 - both extremely high I was told. The private consultant then arranged for me to see my same RA nurse specialist back under the NHS and prescribed biologic anti-tnf therapy (CIMZIA) to start this week. I have had to wait 3 weeks for all the paperwork to be done but I think that's because the drug is being distributed by Healthcare at Home and being delivered directly to me. It is all now being done under the NHS and I will also have a follow up appt with the same consultant I paid to see privately but next time as an NHS patient.
I was in so much pain and absolutely desperate for help which is why my GP suggested I go private to get the correct drugs asap. I would not hesitate to do this again if I was in the same situation. Since I was diagnosed in Feb I have only seen the NHS consultant once for 15mins and was sent away with just leaflets to read. I think I was unlucky with my initial consultant -however the RA nurses are really great although are under so much pressure because they are so stretched.
I am just hoping for my body to respond well to CIMZIA but as yet have had no feed back from others currently taking it.
Good luck with your methotrexate....
Sue
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Rank: Advanced Member  Groups: Registered
Joined: 6/18/2010 Posts: 351 Location: Herne Bay Kent
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Hi Susan
Welcome to the forum. Sorry you have had such a rough time of it, I hope that from now on you will be treated better. I am 56 and was diagnosed 4 years ago. I cannot help you about the cimzia as I am in the same situation as you and waiting to start enbrel.
Hope that it has a dramatic effect for you. You will find this forum so helpful and supportive.
Best wishes
Sue
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Rank: Newbie
Groups: Registered
Joined: 10/12/2010
Posts: 9
Location: Somerset
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Thanks for the encouragement Sue....I've only started to use the forum today and have already gained so much more info ! I will keep you updated on my progress on CIMZIA.
Best wishes
Sue
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi again Sue, thanks for your feedback. i went to an NRAS meeting at my local Hospital in September and was so impressed as the whole Rheumatology Department gave up their evening as well including my Consultant ... and the NRAS Co-Ordinator said some parts of the country are without any form of Rheumatology Departments which is frightening !! and others have long waits as you say. fortunately mine is fantastic and she was so impressed with it. we have a weekly flare Clinic too if you are desperate and you can ring Rheumy Nurse when needed and if she's not available she does her best to get back to you on the same day. i can imagine that £220 was the best money you ever spent ( well maybe apart from a Harley .. lol ) i'm short with an inside leg of 26 inches so doubt i'd even be able to get on one if i was able too !!  but you must miss that feeling of freedom terribly. i manage to get round my local Tesco for a small trolley load of shopping to keep my independance, and the need to get out as much as i can if i can park near where i want to go. but for distance or shopping centres, sightseeing etc. then i have to have a wheelchair as well which my Hubby pushes ... i wouldn't be able to use my shoulders to push myself with the other type or wheelchair. i haven't worked for many years as Hubby is the Breadwinner but i can understand what a shock it is when all of a sudden you can't, i know by reading Posts on here how hard this is to come to terms with. you will soon get some feedback re Cimzia, and i hope you get some relief soon. keep posting, Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Hi Sue,
Welcome to the forum!
I am sorry a few of the meds haven't worked for you yet. Jenni on here is now on Cimzia and so you can ask her all about it.
I hope it works for you and helps reduce that nasty inflammation - you must be feeling very ill with a ESR of 93.
Having had RA since I was a child I have known may different rheumatologists and I have to say that nowadays I prefer to pay privately too. It isn't because we can afford it because we most certainly cannot however I wasn't prepared to see different Drs and wanted to have a good relationship with a rheumy I trusted and knew my history, it is just the way I am and something I feel strongly about. This disease doesn't go away and so it is of great importance to find a rheumy one can like and admire.
Love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 9/21/2010 Posts: 32 Location: west midlands
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Hi sue
Welcome to the forum, sorry to hear you have RA and are really suffering so much. I have had RA for 33 years and have had most of the different drugs. I have had two anti TNF's but had to stop them because of my low white blood cells and then I had a bad infection, I was a shame because the did help my RA.
Really hope they work for you.
Take care Gill x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello and welcome Sue,
My name is Rose aged 56 and also from Somerset. Who are you under ? I am under Dr. LAversuch
at Musgrove Park. She is great but as you say VERY streched.
I am waiting to start anti TNF and awaiting a call from my nurse after seeing Dr L last Friday.
fingers crossed I get it soon.
I await to hear from you. Keep chin up
Rose x
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Rank: Newbie
Groups: Registered
Joined: 10/12/2010
Posts: 9
Location: Somerset
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Hi Rose
Yes, I am now under Dr Laversuch but had to pay to see her privately at the Nuffield to get on her list. Now happy that I have been allocated her as my consultant and have still kept my rheumatology nurse specialist under NHS.
I had my CIMZIA anti TNF syringes delivered by Healthcare at Home this week and injected myself for the first time yesterday! Two doses each time for the first 3 times and I picked my tummy to start. Not too bad although the nurse was expecting a 'pen' syringe and they come as an easily held needle syringe. I've felt very tired and a little nauseous since but nothing that is too bad. I have got two swellings come up on my tummy though on the injection sights so I will keep an eye on them. Fingers crossed that I will get some relief from this therapy as I was beginning to feel very down after 11 months of stiffness and pain. I will keep you updated on how it's all going.
Good luck with your treatment. You can't be too far away from me in Somerset. I have attended the Yeovil Support group which I found very helpful, but I don't think anything is up and running for Taunton area yet. Perhaps in the near future something can be done as it is really nice to meet up and discuss what's happening to us.
Best Wishes and let us know how you get on
Sue
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Sue.
There you are I think you are the only person, other than me on the site who comes from good old
Somerset.
I live in Burnham-on-Sea and under Musgrove. Actually through work I have a private medical policy
and I was referred via the Nuffield from a Specialist Doctor to Doctor Lav. Nov 2008. So i started on
mtx , then sulpha, and laterly leflun all failed. So now last Fri referred for counselling for anti TNF.
I rec'd a copy of the letter Dr. Lav sent to my GP today and copy to Teresa my Rhummy nurse (is
she yours ?) I do so hope it will be soon. I have been off work since end of March and am due to
go back 1st Nov on a graded return. The trouble is with RA it appears to take months/ years
sometime to get a drug that is suitable. We are all different.
I walk with a stick the RA is is in feet, ankles, wrists fingers elbow back shoulders, along with the pain
which is awful the other thing which is suffer from is the fatigue - everyone says about that. Not in a
chair like you though you poor thing
Yes they are hopefully starting up a RA group in Taunton within next few months, I did go to the
launch, were you there? It would be good to get to know you.
Rose x
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Rank: Newbie
Groups: Registered
Joined: 10/12/2010
Posts: 9
Location: Somerset
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Hi Rose
We seem to have followed the same pattern with our drugs.......to get referred for anti-tnf was such a relief and so far so good ! I only injected the CIMZIA on Thursday but after 2 days of feeling really tired & nauseous I am today feeling so much brighter. Whether it's wishful thinking or something is happening with the drugs I don't know but it is great to feel less achey and painful at last.
Yes, my rheumatology nurse is Teresa and I live in Bridgwater, not far from you. I am managing on my sticks with wrist splints at the moment but only over short distances. I'm going up to London to visit my daughter next weekend so will be practising all week to build up some strength to do at least a few shops !!
I must admit that I rang Teresa a few times to speed up my appt. to discuss the anti-tnf therapy as I was in so much pain. Once Teresa OK's you it is then another 3 week wait to get the paperwork sorted. I'm being looked after by Healthcare at Home who have delivered 10 weeks supply of the syringes and they are very helpful. Perhaps now you have the letter from Dr Laversuch you could give Teresa a ring and see if she could fit you in at Bridgwater hospital for your consultation.
Anyway, best of luck and hopefully it won't be too long before you too receive the anti-tnf therapy.
Sue x
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Sue
Gosh small world just 7 miles away - perhaps next few weeks we could meet up for a coffee
Enjoy your trip with your Daughter it good news that you feeling better already.
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hi
the positive effect from the cimzia was almost instant- within a day I felt better.
by 6 wks it has its full effect.
I find taking an antihistamine stops the swelling around the site.
I have had to stop the cimzia now as had some rare side effect problems but it did tackle the RA brilliantly.
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Sue I don't think I've welcomed you to the forum; had a little time out due to a flare which knocked me for six! I'm Lyn, diagnosed with sero-negative RA 22 years ago. Been through the gamut of medication and several orthopaedic procedures along the way. Currently on Enbrel, Prednisolone, Naproxen and a bucket load of painkillers! I'm married to Mike have four children, Abby 22, Ian and Jake 17, and Louis 16, all in various stages of education; we live in Thornton Cleveleys in north west Lancashire. Pleased to hear that you are getting relief and starting to feel the benefits from the Cimzia. I was surprised to read that you saw a rheumatologist privately, prescribed anti -tnf treatment and then returned to the NHS. I was hoping to see someone privately and made enquiries a few months ago. I have been advised that once I go down the 'private' route I will not then be able to continue as an NHS patient for this condition. All consultations and medications would have to be paid for privately and would NOT be covered by the NHS. Needless to say I can't afford that option! I wonder how you managed it ... quite like to know!! Healthcare at Home offer an excellent service and although the initial wait for the prescription to go through is a couple of weeks after that it is all so straightforward and efficient. The deliveries guys are so cheerful too!! Hope things continue to go well for you, Lyn x
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