Just spoke to the GP

sennacharib

Hello all,

Just wanted some advice really....

Just spoke to my GP, as i had blood tests done on monday, and the results are that my white blood cell, CRP, Gamma GT and few others are all raised...then they said this was conclusive with rheumatoid arthritis, and when did i next see rheumy.

I explained that i am seeing the specialist nurse on monday at 1.30 and that plaquenil is not suiting me due to heavy side effects and nurse said she would knock plaquenil on head and im guessing trying a new disease modifying drug? Also as my appts were mucked around, and i have definately now secured the novemeber 9th appt with the new rheumy who i havent yet met, but explained that the locum i saw in june also strongly suspected rheumatoid as well.

I then said but my RF is negative they said that can change over next year or so, and that it is more than likely sero negative without that result, but still rheumatoid.

They then said ''i dont want to speak out of turn as it is your rhemy's desicion on what they decide to diagnose you with, but all blood tests are pointing in rheumatoids direction....

I was quite shocked i guess...and started to cry once got off phone...and hoping on one hand that it wont be...even though i am yet to see nurse on monday and she will have the blood test results there too, then as i say rheumy in november...will nurse as she is the specialist nurse be able to diagnose me? Or can she just change meds etc?

I feel so rough today, i just want to know whats going on...i feel like have been run over by steam roller...im gradually dropping steriods to just 3 day (15mg) by monday, and the pain is back with avengence...even hurts my shoulder to lift a cup of tea! My hands are so sore and swollen...i feel a wreck

I am wondering why my CRP is raised as i have been on plaquenil and steriods so i was expecting this to be down by now...although was only slightly raised to begin with...is this normal at this stage after being on steriods for over 3 months?

Sorry for all questions...just feel in tizz!

Thanks in advance and hope your all well today...hugs

Love Senna xxxxxx

valval

hi can not help much as only got as far as inflammation arther and doc said that not rheumy he does not like tags but a lot of the auto immune ones are treated the same and if changes are required rheumy will have passed it on to nurse they usually work quite close together so try not to worry as for results well it always a shock was told by gp it was not rheumatoid but not told it was one of the inflammation family that all work similar so relief did not last long but once you get your head around it you will be ok it is a shock but once you know what you are dealing with it helps but having a name will not make what you are going through any worse but things will be better when you get meds that suit val

sennacharib

Thanks very much for replying val

I think once i know wht im really dealing with as a diagnosis on paper so to speak, i can then sort my head out to what im facing.

Hope your well today?

hugs love senna xxx

hileena111

Hi
Let us know what you find out. I really agree......get a name to it...the pain will be no different {until you are on the right medication to control it} but with me thats what i need. A name and then I can start coping with it.
You sound as if thats what you want.....after the initial shock.
I havent RA ....got OA but the principle is the same
Love
Hileena

frogmorton

Hi Senna

you will be in shock lass. Don't be too hard on yourself. You are another like me whose bloods (RF) are negative, but have definite symptoms. Gamma GT something to do with the liver (my Mum had that at one point) l think and white blood cells that you are fighting something (that's how the doc explained it to me).

November still feels a long way off doesn't it? I expect you have already, but have you thought about asking for a cancellation at short notice?

Love and gentle hugs

Toni xx

dreamdaisy

My ESR and CRP remained raised throughout my first experiments with meth, leflunomide, sulpha, celebrex (though they did drop with those), naproxen and steroids so that was always an indication that my inflammatory arthritis was never under 'control' as such. The meds can take a while to get into your system and affect things: bloods are only indicators of what is happening. I am sure you will get some further help and in the near future, you are still very much in the early stages of all this, yes? It is a confusing, muddling and uncertain time for you senna, but as they find out more about you and what is going on they will be able to narrow the diagnosis, of that I am sure. I wish you well. DD

sennacharib

Thanks so much for all replies

I think what i am going to find hard is if on the appt in november after seeing a locum rheumy who said strongly suspects and a GP who has said same for them to say , it is not, or make me think its in my head...that is what im dreading!! My hubby says well they cant say that, you have visible symptoms etc...i guess it took years to get my back problems diagnosed ( i have degenerative disc disease in 4 discs) and for 6 of those 10 years, i had GP's ( a different surgery) and consultants telling me it wa sin my head...so that leaves you a worryguts!

I am lucky to have this appt this monday with the specialist rheumy nurse, and she wants to take me off plaquenil , so i have no idea what she will start me on....she also asked me to bring print outs of the photos of my joints that are affected so she can keep them on the rheumy file, so got hubby busy doing that

I did ask for a cancellation, but apparently here in south england/hampshire they dont do cancellations...but ty Toni for mentioning

I am in early stages Daisy, and i think that makes it all so unnerving, but you are all so sweet & kind, and you listen so much!!

Yes Hileena, i agree a name and then you know what your fighting

Hugs to you all...thanksyou for taking the time to reply.

I will let you all know what monday brings!

Lots Love Senna xxxxx

Mat48

Hi Senna, I know that uncertainty is what gets me down and the feeling of being disbelieved is awful I agree. I'm in the same position without the disintegrating disc thing which must be horrible for you. If it's any consolation you have a plus in that where I live there is not even a rheumy nurse or anyone with any expertise so I'm at the mercy of GPs and like you I get to see my rheumy for the second time in November. I just want a name and having consulted on this site and done a lot of research I've decided that mine is Palindromic Rheumatism. I like this one most of all the rheumatoid/ autoimmune diseases because there's a chance it might not take hold and could still burn itself out. Better to live in hope for now I feel?

Until recently I had a lot of eczema and when I was a kid it used to plaster my face and make me look blotchy and everyone assumed it was psychosomatic. Now it's all gone and I look well and everyone assumes all the pain I'm experiencing is in my head. We can't win really?!! Mat x

woodbon

Hi I'm sorry you've not been given a proper diagnosis and I do know how you feel as I'm still at the stage of going from department to department but, as the orthopeadic consultant I saw yesterday, told me, its a diagnosis made by finding out what it's not, if you see what I mean, but you must be so frustrated and being in shock is understandable; its a big thing to take in.

Hopefully, Monday when you see the specialist nurse, you can talk things over and she can explain what the bloods mean. I know they say labels don't matter, but I agree with you, you need to know what your fighting and have the right medications.
Take care, Love Suexxx

sennacharib

Hi mat
Ty for replying. Have you considered the possibility of psoriatic arthritis, i only say this as you mentioned ezcema as a child..and i think i am right (?) in saying it as it is connected to psoriais which is similar to ezcema? I really hope you get some answers soon, i fully appreciate your situation and it is tough!!

Hi woodbon,
Ty for replying also, I am really hoping monday will bring some answers. It is so hard being moved from dept to dept, but like you say it is their way of trying to get to a firm diagnosis, i just hate all he waiting in meantime! lol....I really hope you can get to bottom of your medical issues too, my fingers are crossed.

Take care to both of you & lots of hugs

Love senna xxxx

Mat48

Hi Senna (lovely name!). The rheumatologist did ask me if I suffered from psoriasis and I said no but I've had eczema all my life until recently - so he does know. I think the two belong to different families and eczema doesn't relate to rheumatic conditions but I could be wrong?

Interestingly my eczema has all gone as my menopause started and now I seem to have replaced it with joint pains so I believe it's all affected by hormone levels. The thing about that is that I look much better so people are even more disbelieving when I say that I am in lots of pain and may have RA. I made the point about the eczema to show how we can't win -sceptics will dismiss all forms of ill health unless you say the word "cancer" which would immediately make people sit up and look shocked. But even people with cancer get told that they can make themselves better through power of the mind which I think is just downright cruel. It's bad enough having RA, OA, MS, cancer, chronic eczema .. whatever... without being told by people blessed with good health that it's down to us to get on top of it by willpower alone. Grrrr! Mat