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Rank: Advanced Member  Groups: Registered
Joined: 3/23/2010 Posts: 32 Location: Stratford on Avon
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I haven't been on the forum for ages but always logon and read. You all have such a generous and kind council to those who need help or just a moral boost ]LynW you have always been an inspiration to me you have so much knowledge about this rotten illness and yet you are being pushed from pillar to post and not getting the treatment you deserve; I really feel for you. Here in Warwickshire we don't seem too bad (touching wood). I have dilemma’s; I’ve been feeling a lot stiffer, tired and the pain levels have upped, I even nodded off at my desk at work and worse on my way home in the car I know my eyes closed, and that was the catalyst to start thinking something was wrong. The comment from my manager about being late for work was the killer. 1st dilemma is can you have normal ish bloods as in CRP and ESR in single figures but you hurt like hell; tired ,stiff and feel awful you all know the routine. I went to my GP and she has signed me off for a month, I'd left messages for the RA Nurses but they were all out of the office and we have 3, all part time though. But there was a lifeline I'm on the BRAGGS and Trace RA trials and was due to see my nurse on the 22nd Feb. I went and had bloods done a couple of days before seeing her. We went through the trial details and she did my DAS score it was 5.3. When I started on Humira it was 5.8 and I was taking 30mg Pred a day that was Dec 08 then July 09 it was 3.5 very ill CRP 78 ended up in hospital for a week filled up with intravenous steroids. Oct 10 I was told to up Humira to weekly still on MTX 15mg weekly plus steroids 15mg still coming down slowly from the large doses. I’m still on Humira weekly, MTX 15mg weekly and 2.5mg Pred but I feel awful my hands take ages to get working and my right knee is swollen with a baker cyst behind it RPN (my trials nurse changed role) says my Das score is enough to change. We talked at length about changing to another Anti TNF but because I'm sero-negative I have a limited selection. Again I was lucky because my newly retired from the NHS Rheumatologist was back in clinic as a locum. (we are probably paying him 3 x's more than before but he suited the cuts the hospital had to make) he had a look at my joints and said no to changing as I have this limited choice stay as I am with the weekly injections and the cocktail of painkilling meds and have a steroid injection, I'm steroid phobic we need them but I hate them for the side effects the weight gain especially. Again my dilemma is why am I hurting like this but my bloods are normal. I don't understand. Am I going mad am I imagining I hurt? I must admit though phobic or not the steroid injection is definitely helping I've been able to type this. Oh blow it. The next thing though is my appointment to have a nerve released in my elbow and wrist has come through for the 31st March so I'll have to come off the Humira 2 weeks before the operation then wait until the wound is fully healed before starting again how is that going to affect me RA wise? Have any of you had this op, was it successful I would love to have my fingers back its my right hand as well. I'm also thinking that I may have a block rather than the full anaesthetic to save any risk of chest infections. Has anyone had a operation that way. I hope you understand my dilemmas I’m not very good at descriptive writing I talk better. Best wishes Tricia  life is too important to be taken seriously Oscar Wilde
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Tricia
I am sorry to hear how bad you feel. Yes you can have low ESR and CRP levels from blood tests and still feel awful. I was diagnosed with RA two years ago after many years of pain and being told there was nothing wrong with me. My inflammation levels are still not very high but I have felt awful over the last two years. I have just had a knee replacement and my surgeon told me that I have obviously had RA all my life. My knee was massively inflamed on the inside and the knee had almost worn away. I was assessed by my RA team earlier in the year and as my blood test results were o.k. and they could not see any inflammation on the outside of my knee I was dismissed that there was nothing really wrong with me. I took the bull by the horns and saw a Rheumatology Consultant privately who took the time to listen to what I had to say and referred me to an orthopaedic surgeon to sort out my knees. I need the other one doing at some point.
RA can be a very sneaky disease and if you are feeling pain, then there is a reason for this which your RA team need to take heed of.
I hope you get some pain relief soon.
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Yes- i have 'normal' bloods and still have pain and stiffness! YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Tricia The answer to your question about bloods being fairly normal lies in the fact that you are sero-negative. I am too and it really has a lot to answer for. It makes life very difficult to get appropriate treatment because the blood result don't bear out how you are feeling. Your doctors should take this into account by asking you how you feel, it's not exactly rocket science. But do they do it? No!! My bloods are all over the place and very unreliable! This week my DAS is 5.98, so fairly high. Strangely you are on Humira, but I'm on Enbrel. I was told that Humira wouldn't be suitable for me being sero-negative. I have had 8 good years on a combination of Enbrel, 10mg Methotrexate and 3mg prednisolone; so something was right! Prior to Enbrel I was on Infliximab infusions, also good but became ineffective after 12 months. It's so hard when different practitioners are doing very different things. How does one know what's actually right?! Operations are difficult when the drugs have to stop. I had a massive flare after a knee op last summer, mainly because I was told by the surgeon that I couldn't restart Enbrel until after the 6 week check. The rheumatologist said later I should have re-started no longer than 2 weeks later otherwise it's like starting all over again! Make sure you get a definitive answer from all concerned. I had a nerve block for a surgical synovectomy on my knee. It's really good if you can cope with it. Given the choice I would go with it again. I hope your appointment goes well and the op doesn't cause too much grief with the RA. Try and get plenty of rest whilst you are off work. Do let us know how you go on  Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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in a word yes!
I have severe ra, it always shows in my bloods. sometimes i can feel at deaths door and feel terrible- esr and crp "normal" for me!
other times i feel quite perky and the dr says "oooh that must hurt!" and the results are sky high!
a good rheumatologist will always look at the PERSON and the BLOODS.
sending support
Jenni xx how to be a velvet bulldoser
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Rank: Advanced Member Groups: Registered
Joined: 3/23/2010 Posts: 32 Location: Stratford on Avon
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Hi Ladies thank you for your support, I have been bouncing round like Tigger for the last 3 days since the steroid injection but already I can feel its wearing off. So I'll up the pain patches and and take the pills again. It was good while it lasted. Jenni B well done I have watched your life on the forum; you must have been so afraid when they started the new drug but at the same time excited thinking this is the drug for me. Well I'm going to be on the forum a lot more as my sick leave is for 1 month to start then I'll come off the Humira have my elbow done onthe 31st March, 2 weeks later back on the Humira and wait to see if it works. The company I work for in travel you might have guessed only pays full siick pay for 10 days then its SSP so I think I must try for some of the benefits any help and advise I will gladly take. So take care allof you Lyn W you are an inspiration to me and I loved your last blogg you sounded just how I felt but I;m not as good as you but I'm sure I'll have timeon my hands to practise. T xxxx life is too important to be taken seriously Oscar Wilde
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Rank: Advanced Member  Groups: Registered
Joined: 12/28/2009 Posts: 39
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Hello all,
I am also sero-negative, my blood does not show up anything abnormal and I feel like hell. Both my GP and Rheumy are taking me seriously but I feel really bad because I cant comprehend why i'm in so much pain while my blood is normal. My feet, ankles and knees are the worse. I'm beginning to have problem with my hands. I've been on sulphasalazine for about 8 months and felt wonderful for awhile but now i'm in pain again.
I'm really grateful that you posted your question on this forum. Now I don't feel so alone anymore. You're question and all the replies have helped comprehend what's going on.
I'm having another blood test on Tuesday, perhaps something will show up to prove that it is not in my head. Perhaps my blood will be again normal but at least I now know that I'm not on my own living with this dillema.
Thank you again Travelgirl for pointing this out. Thank you for all of you who took the time to reply and have been able to reassure me.
xx
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Rank: Advanced Member Groups: Registered
Joined: 3/23/2010 Posts: 32 Location: Stratford on Avon
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Hi Linda I'm sorry you are feeling so bad, I know how you feel, since I've had this illness I haven't fully understood its craftiness at throwing us a curved ball every so often. You do everything your told you take the pills you inject yourself with toxic drugs and still it will not just lie down and sleep its like a naughty toddler who won't go to bed and you get yourself wound up trying mot to be cross not to lash out but to be calm and serene and loving but you can't be cos’ you hurt! In the past my bloods have been in the 80’s and I was admitted to hospital this time I haven’t got that real feeling of illness. I’m in pain I’m fatigued, so my question is? Is the Humira holding the CRP down but you are still having a flare but with false figures we who have these symptoms think so but some of the Drs don’t. So keep at them don’t give up go to your GP ring the Nurse if you have one and after all that REST. Don’t give up though. Best wishes and a gentle hug Tricia life is too important to be taken seriously Oscar Wilde
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Rank: Advanced Member Groups: Registered
Joined: 12/28/2009 Posts: 39
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Thanks for your reply. I'll keep you posted when i get the results of the blood test that I will have on Tuesday. I will also see the Rheumy tomorrow.
Let's hope things improve soon
Linda xx
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Rank: Advanced Member  Groups: Registered
Joined: 11/26/2010 Posts: 71 Location: London
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Hi Tricia,
I'm sero-negative too and my body seems to be a master at not showing things in my bloods. I also have chronic kidney disease and in 2001 had a kidney function bloods test as I felt at death's door and had gained 2stone due to water retention - the result came back normal! 2 days later I finally got myself admitted to hospital where the consultant told me off as I had complete kidney failure. Our bodies are amazing at 'coping' and so I've learnt that if I know I'm not right - keep on at docs until they listen. I've even change doc before when I wasn't happy and it was well worth it.
I'm quite newly diagnosed with RA so still feeling rubbish and trying to find meds that work, bloods look normal and I'm not taking no for an answer!
Good luck with it, there's so much helpful info on here and some good stuff on Internet too.
Vicky
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Rank: Advanced Member  Groups: Registered
Joined: 7/10/2010 Posts: 43 Location: Little Dewchurch, Hereford
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Hi Tricia - sorry you have been having such a tough time
I'm sero-neg too & had some relief from, Humira but it was getting less so I had to stop it as my score reduction wasn'tbig enough
My consultant offered me Rituximab when I saw him about a large nodule on my finger (I think he'd forgotten I was sero neg for both Rh Factor & antiCCP) but twhen I came back to see the Rheumy nurse she said she thought he might prefer leflunomide because I was sero-neg & rituximab might not work
Anyway he thought about it & offered me a choice - as I've got familial hypertension & a very strong family history of early heart disease I didn't really want leflunomide
I opted to give rituximab a go & (despite my having a reaction) it has really helped - & shrunk my nodule
They've booked me in to have my next 2 doses later this month as soon as 6 months is up as they said it works best if you don't wait for things to flare up (which incedentally they sare starting to again)
I've never really cracked control but things have been much better, particularly my feet less painful
(Why don't they count feet in the DAS score when they ause such problems?? My rheumy nurse always says 'if they counted feet you score would be much higher....')
Good luck whatever they decide
Hope op is a success!
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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I think it is unbelievable that they do not include feet with the DAS score, I really would like to know the answer to that one  I am fortunate not had too many problems with my feet, it must be really awful, bearing in mind you have to put all your weight on these painful joints ! Julia
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Rank: Advanced Member Groups: Registered
Joined: 3/23/2010 Posts: 32 Location: Stratford on Avon
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Hi Ladies Yes, why are feet not part of the DAS count my poor footsies yesterday were on fire when I said to hubby my toes really hurt and showed him my foot he thought I'd bumped it and it was a broken toe. Told him not so bad as that - but we had the chat about Das and the 28, who decided to count the joints they do. Have any of you heard or know someone who has Humira weekly. I'm sure my Rheumy forgot that the other week when he decided to plug me with steroids and I really think that the WD40 of RA is letting me rust up again. It took me 2-3 hours to get out of bed this morning everytime I moved my left leg I got cramp running straight from my toes to my groin. My ands were siezed up and my shoulders and elbows well just OUCH! So i've had oramorph top up and this afternoon my voice will go husky I'd be able to make a fortune on one of those chatlines, anyone know the number................... Love the stationary Travelgirl  Tricia life is too important to be taken seriously Oscar Wilde
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Rank: Advanced Member Groups: Registered
Joined: 12/28/2009 Posts: 39
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Hiya,
I didn't get my blood tested but my rheumy has put me on methotrexate now. I will go for blood in two weeks time.
Can anyone tell me, how likely will I be able to continue on my full time University course? I'm starting the methotrexate tomorrow evening.
Linda x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Linda
Good news starting mtx. Hope all goes well and your body tolerates it.
You may be fine once the medicine working to carry on Uni. give it a couple
months and then you will def know
Rose
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Rank: Advanced Member Groups: Registered
Joined: 12/28/2009 Posts: 39
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Hi Rose,
I was asking this because I'm on very intense course and I cannot take much time off. I suspect that I'll soon find out if the course is beyong me. I'm already struggling due to RA. I'll soon find out if the initial side effects of MTX is too much because without the med, I will be doomed anyhow!
I'm sure I have seen you before. Are you from the North East?
Linda x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Linda I have replied on your other thread!! Lyn x Oh Rose, you've been caught! What have you been up to lurking round North East England? Thought you said Malaga xx
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Ekk . My double life up North has been found out.. . shus
No not from the North I live in sunny Somerset. It must be my double . God 2 of me . . . . .
x
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Rank: Advanced Member Groups: Registered
Joined: 12/28/2009 Posts: 39
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Rose, Yes you must have a double Don't worry, she is a very lovely lady too. Linda 
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Linda,
Hope the MTX is OK for you. I started taking it in November and at first it made me feel like I had the most dreadful hangover from hell the following day as well as all sorts of other side effects. Now I'm tolerating it much better and don't feel like that at all, although still some niggly side effects but nothing to stop me from doing anything, its the RA that does that! So my advice is, even if it makes you feel even worse than you do already, stick with it and your course as long as you can before making any life changing decisions, the only certain thing is that things will change in one way or another! Good luck and let us know how you get on with it.
Sara
xx
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