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tocilizumab Options
Wolf52
#1 Posted : Monday, March 19, 2012 11:51:16 AM Quote
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Location: Wolverhampton
Hi all,

Hope everyone is well (or as well as can be).

I have been on tocilizumab now for four months along with MTX/prednisolene. Should I be seeing some improvement yet? I feel as if the RA is getting worse. I'm in constant pain, got swellings/bumps appearing where they haven't been before. The neuropathy hasn't lessened any despite increasing my folic acid intake. I called my rheumy nurse asking to see her and explained why and she has arranged an emergency appointment with the consultant (scheduled for Wednesday (21st) am). I am also wondering whether this rheumy team has taken me as far as I can go and whether I should ask them to refer me elsewhere, but if I do that, where would I go??? Can anyone recommend a rheumatologist (team)?

Sorry for the moan, there is so much going on at home (with hubby) that I feel as if I'm on the edge of, well I don't know of what, but something.

Nina xx
smith-j
#2 Posted : Monday, March 19, 2012 7:39:12 PM Quote
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Nina

Don't give up yet. I have tried Methotrexate, steroids, Enbrel, Humira, Rituximab and now on my third anti-tnf Simponi. It really is just trying to find the right combination for you and unfortunately it may take some time. I am two years and two months from diagnosis and still have really awful days.

If you do feel that you want to change your Rheumy team, I can highly recommend the Telford and Wrekin (Shropshire) Rheumatology team which would not be too far for you. They have a dedicated building which two Consultants, a rheumatology nurse, OT's and Physio's. They have only been in the new building about 12 months but have already outgrown it and need to move to bigger premises with better car parking. The team are wonderful and there is brilliant access to them. You can see the following article about them on http://nhslocal.nhs.uk/s...vice-telford-and-wrekin Their phone number is right at the bottom of the article.

The other option if you can afford it is to pay for a private appointment with a Rheumatologist. This will give you time to talk to a Consultant about all your concerns and he/she will then write to your Rheumatology team with a care plan. I did this in the very beginning when I was first diagnosed and it certainly helped. I saw Dr Butler (Consultant Rheumatologist) who is based at Shrewsbury Hospital but I actually saw him at the Nuffield Hospital in Shrewsbury (again not too far for you). See details here http://www.nuffieldhealt...om/hospitals/shrewsbury

I know when things around you are bad, your health will also suffer. I have a Husband who suffers from anxiety and depression and when he is going through a bad patch, boy do my joints also join in. I think stress really does have an impact on RA.

I hope your appointment goes well on Wednesday but if not then hopefully the above may be something for you to consider.

Take care

Jackie
xx
Wolf52
#3 Posted : Tuesday, March 20, 2012 8:55:46 AM Quote
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Location: Wolverhampton
Jackie thanks for your reply. I actually work at PRH and had decided to leave my care at New Cross as it kept work and health apart. I will give this more thought.

Nina xx
Wolf52
#4 Posted : Tuesday, April 03, 2012 1:36:30 PM Quote
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Location: Wolverhampton
Just a quick update. Had emergency appt on 21 March and saw my consultant. According to my bloods, the tocilizumab is working. My CRP is 1 and my ESR is 7 - never been that low before! However, now the RA is under control, they can see what other problems I have, namely fibromyalgia. I am waiting to see GP to sort out the drugs I have to have for this. Never rains, but pours.

Nxx
jeanb
#5 Posted : Tuesday, April 03, 2012 3:21:23 PM Quote
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Location: Timperley
Oh Nina, I can't believe this. Sometimes our blood results don't really indicate how we actually feel. I know that Fibro is pretty nasty and it may help you to get in touch with Fibro Society if you haven't already done so. I can't help with this as I don't have fibro. Presumably you are on a good regime of pain killers! Please keep us informed. Lots of love to you and gentle hugs. xxxx
smith-j
#6 Posted : Tuesday, April 03, 2012 4:51:38 PM Quote
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Nina

Good that you got some good news at last about the RA. Sorry about the fibro, I know it can be quite painful.

Jackie
x
dorat
#7 Posted : Tuesday, April 03, 2012 6:27:12 PM Quote
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Location: Huddersfield
Hi Nina,

Glad you are getting the RA under control at last but sorry about the fibro.
There's always something isn't there ?
Hope the fibro drugs help you.

Love Doreen xx
Rose-B
#8 Posted : Wednesday, April 04, 2012 9:18:55 PM Quote
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Joined: 4/20/2010
Posts: 1,749
Location: Somerset


Hello Nina.

Glad that your bloods appear better. However, it is so annoying when YOU yourself do not feel
any better though is it. I am in similar position(see my blogg), I was interested to note that you have
been diagnosed with fybromy. Well looking at the symptoms the other week I also wonder if I could
have that. I have dreadful fatigue and never appear to have had enough sleep, get head aches still
have aches almost everywhere, I get low and stressed.

Good luck Nina

Rose x
KathyC
#9 Posted : Friday, April 20, 2012 12:35:46 PM Quote
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Hi Nina,

I have only just read your posting and hope that you are now feeling better.
I too live in Wolverhampton and have attended New Cross Hospital for four years now. I initally had a few private consultations with one of the Rheumatologists there but became very disastisfied with the treatment which I was also getting and from 'The Team'in general, so therefore decided to change to another consultant, at the Hospital, in order to gain better treatment etc.

I have needed to attend the Hospital on a few occasions for steroid injections etc, and for blood monitoring etc, but always feel that there is no-one present who is really interested in your welfare and they never follow anything up. Which Rhematologist do you see at this Hospital ?

During the last two weeks I have needed further help and advice and have been met with the specialist only anti-T.N.F. Nurse being away on holiday, in addition also the Consultant whom I now see. I have tried unsuccessfully in ringing the help-line which they provide, without success as it is always engaged. I therefore decided to book another private appointment which I attended yesterday, with my new Rheumatologist. To be quite honest, it was a complete waste of money, as I got the feeling that he was not really interested. I had to suggest to him, maybe I would be better controlled if I started taking Mtx. with my humira, which is not working for me 100%, or he was suggesting following the Nice guidelines and getting me to now try a drug by 'infusion'

I have gained more knowledge and information and help from these Forums than in all the four years of attending New Cross Hospital. I now belong to a R.A. Group which meets in Telford every month and this has always been a great help.
Quite a few of the Telford Rehumatology support team from Hollinswood, have attended these meetings, which has also been very informative. Just being able to talk and compare with others having R.A. has also been a great help.

If you would like to attend the next meeting is on April 25th at Euston House,Telford (situated next to the train station) I am also considering changing my treatment to another team, to gain better treatment and more satisfaction.

Best Regards,
Kathy C
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