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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi all
been to the GP this morning and things are going wrong
I am now very very anaemic and it is getting worse not better. They are testing me for aplastic aneamia and other blood disorders- none of which sound very pretty at all. or I am bleeding from somewhere inside. my B12 is ok so it isnt the normal pernicious anaemia stuff with the RA- also if it was the RA then I would be getting better as the RA is now classed as "controlled" (Crp now down to 20 and esr 31!)
the other problem is that I showed the GP the legs where the hardness and the neuropathy started. The weakness in the muscles is no better and I have noted the finger tips are feeling strange like they are touching something silky all the time.
This all started after I had serious reaction to the RTX a couple of yrs ago.
anyway he examined my legs and from being fairly dismissive and "take more gabapentin" for pain then, his face fell and he is going to refer to a neuromusculo specialist at wessex neuro. the leg parts that the neuropathy effects is visbly different to the rest of the leg now. It is shrinking and is tight. The lumps and ridigity are much increased and the couple of nights after the cimzia the neuro pain in my legs and things is incredible.
I said I didnt mind- just taking oramorph and being out of it the following couple of days is no trade off in the general scheme of things for feeling well on the drug but the GP says if it is increasing the neuro problems there could be a serious issue here after all.
I am going to have to phone rheumatology.
then it is a bloody answer phone.
OOOH I hate this stupid awful crappy disease.
a pretty p'd off
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
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it's the ansaphones that break our backs isn't it!
I'm sorry to hear about this Jenni, it sounds quite a marked change, is that what you feel? Are neuropathies a known Cimzia problem (Sorry, I know they started with rtx, but just wondering).
I hope your referral to neuro is quick. I worked for a year at the national for neurology about a decade ago, and i know it is so damn hard to be a neuro patient or clinician. It is a very tough thing and I am thinking of you, every day.
I hope you're feeling more joyful jenni than justabout jenni soon, your capacity to process and progress with things never ceases to amaze me. here's my virtual hand hellping hold you up while it's all 'meh' my love. xfx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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So sorry to hear this Jenni, just when you thought the Cimzia was helping you. It's the pits isn't it?  Hope you get the neuro appointment very soon. Sending lots of love and hugs, Doreen xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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I know
It is a blooming nightmare. I am SOOO WELL on the Cimzia. The RA is almost hardly there, yes I am still stiff and the joints hurt from time to time. Get swelling in the evenings etc but no where near where things have been. It is the best I have felt for YEARS. I will be gutted totally gutted if I have to stop this drug.
I am very tired in the afternoons. Thought this must be to do with the Endocrine things but this is not the case and it must be to do with the anaemia.
Its the hardness and lumps/ neuro probs in the left leg particularly but some in right leg and forearms and global muscle weakness that is effecting me still. I have one single nerve effected on my face which controls the left lower part of my nose and left side of my mouth.
It is the hardness in the leg and lack of muscle strength that stop me standing/ walking stably.
I just went to the GP today for a general check and I realised that the feeling in my finger tips has altered over the last few days. He noted that the lumps and rigidity are much progressed in a month since I last saw him and this needs a new neurology appt to see a specific specialist.
ARSE! BUM! ARSE! BUM BUM BUM
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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sorry, pardon the language but I am AARGH!how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 1,035
Location: in a house
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HI jENNI Would Dame poff Carol Black or poff Chris Denton be of any help based at royal free London . christine The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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 Have e-mailed
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Rank: Advanced Member
Groups: Registered
Joined: 2/26/2010
Posts: 271
Location: hampshire
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Oh Jenni, feel so bad for you, I'll say some bad words on your behalf that you cant print on the site!!!!
Big hug and lots of positive thoughts
Heatherxxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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i'll give a helping hand here with the swear words too!  Hugs, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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Jenni
Big hugs to you. So sorry to hear things are so.... pants. Positive thoughts that you get sorted.
Mari
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Jenni, I can well understand you feeling seriously p***d off. I can only hope and pray you don`t have to wait too long for the neuro appointment, and you will be able to continue the Cimzia. Hugs, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hello Jenni
It is a real nightmare, I hope that you can get that appointment urgently with the neuro specialist, you certainly should under these circumstances. It might well be the cimzia and legs problems are not necessarily related and something else is going on, so the sooner you get there, to be investigated, the better.
Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Gentle hugs Jenni grr arhh as much u want we here pray the grrs answer there phone,thank god for gp referring you pray also not have stop cimiza so good see RA responding so well. lvv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 90
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So sorry, Jenni, to hear about your new problems. Obviously the Cimzia is working well on the RA. The ESR and CRP results are just amazing, considering the numbers you usually have to contend with.
Neuropathy, numbness and muscle weakness are very much associated with diabetes. I know from my husband, who has very bad neuropathy in his legs especially at night. Often he can`t bear the duvet on top of his legs. Ofcourse I am not a doctor but I thought I would mention it, because I know, you have diabetes, which is an illness and a half on top of, what you already have. I feel very sad for you, that you are in so much pain.
Merete
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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O Jenni,
Sending hugs and cuddles and thinking of you A LOT xxXxx
Hope appointment sorted very urgently,
take care, and we're here -we got tough ears, grrrr all u need
Unprintable words already whispered here,
.....moving straight on to say a l'il prayer now xxXxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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I could weep for you Jenni - I hope you get an appointment through quickly - I agree your rheumy team need to advise a.s.a.p. Thinking of you Jenni and refraining from writing unpublishable swear words.
Julie xxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Jenni, was so sorry to read your post. Everything was going so well. The sooner the appt arrives the better. Thinking of you Jenni, and sending lots of love and ((((hugs)))))BARBARA
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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m_nanasbaum wrote:
Neuropathy, numbness and muscle weakness are very much associated with diabetes. I know from my husband, who has very bad neuropathy in his legs especially at night. Often he can`t bear the duvet on top of his legs. Ofcourse I am not a doctor but I thought I would mention it, because I know, you have diabetes, which is an illness and a half on top of, what you already have. I feel very sad for you, that you are in so much pain.
thank you merete and the others too. I am sorry to hear your husband has neuropathy in his legs. I do know that mine is not diabetes related. I have only had it for about 4 yrs and in that time my blood control has been pretty good. my endocrine dr explains that this level of neuropathies dont come until many years in. I got the diabetes secondary to long term steroid use for the RA. I take insulin and am careful with my eating and take metformin.
I wonder, merete if your husband might be able to try gabapentin? It helps me an awful lot- it is the neuro pain it tackles the most.
Had a really stressful pile of crap from the LA who dont want to pay for anything when I got home and have cried.
Love to all
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Hi Jenni
Sorry to read this- just as things seemed to be getting better for you.
Hopefully they can get it sorted quickly and that you can stay on the cimzia.
Meanwhile- I'll do some swearing on your behalf
S**T ,BU***R ,AR***OLE- my niece's favourite expletive!!
Much love
Maria x
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Jenni, Hopefully it is not as bad as first seemed, you are responding so well with this new drug it would be just dreadful for it to be causing other problems. I hope and pray it is not as bad as you first thought. Will keep you in my prayers. Lorna xx 
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