Confused!!

kaylion

Hi I hope you can help me.

I have had some problems with my neck and wrist for about a year. My GP referred me to a rheumatologist when a blood test came back positive for the rheumatoid factor - although I know that this on its own is not enough for a diagnosis.

I have had one appointment with the consultant who sent me for some more blood tests and a scan on my wrist. My wrist scan showed inflammation and I now know that my anti ccp came back positive.

From everything I have read it would seem these results suggest that I may have rheumatoid arthritis, however the doctor who scanned me said that because my clinical presentation was not typical they would adopt a "watch and wait" approach and not offer me any further treatment (I am on diclofenac now which is working well).

I am confused about whether I am likely to get any worse. Is it possible to have these results and for no more joints to be affected. Can there be any other explanation for the results?

I don't know whether to be worried or not ...

Thanks

helpline_team

Dear Kaylion,

Thanks for dropping us a line at helplines. I can well imagine your situation may be confusing. It's a difficult enquiry as really the answers may become apparent as time passes.

Am I right in thinking that the rheumatologist is not seeing enough elevated levels of inflammation in your blood to warrant treating with a disease modifying treatment yet?

The kinds of measures of inflammation which they often monitor are ESR and CRP, but clinics vary. Often it can be helpful to get either your GP or the rheumatology nurse to go over your notes and point out how your blood results fit into 'norms'.

They can describe the level at which they might say they would want to begin treatment - so you know it.

Another monitoring process involves watching for joints becoming very inflamed and painful. If that leads to signs of joint damage then treatment may also be called for.

As far as worry goes, it's worth trying not to and you may find it reassuring to know fully how your condition can be monitored, so if you need further treatment there will be the least possible delay.

If you would like to talk things over more fully, do not hesitate to ring us if you'd like to.

I hope that helps

Guy

kaylion

helpline_team wrote:

Dear Kaylion,

Thanks for dropping us a line at helplines. I can well imagine your situation may be confusing. It's a difficult enquiry as really the answers may become apparent as time passes.

Am I right in thinking that the rheumatologist is not seeing enough elevated levels of inflammation in your blood to warrant treating with a disease modifying treatment yet?

The kinds of measures of inflammation which they often monitor are ESR and CRP, but clinics vary. Often it can be helpful to get either your GP or the rheumatology nurse to go over your notes and point out how your blood results fit into 'norms'.

They can describe the level at which they might say they would want to begin treatment - so you know it.

Another monitoring process involves watching for joints becoming very inflamed and painful. If that leads to signs of joint damage then treatment may also be called for.

As far as worry goes, it's worth trying not to and you may find it reassuring to know fully how your condition can be monitored, so if you need further treatment there will be the least possible delay.

If you would like to talk things over more fully, do not hesitate to ring us if you'd like to.

I hope that helps

Guy

Hi Guy

Thanks for your quick response. My inflammation markers were not particularly raised as you say (although tell that to my wrist!) - but without diclofenac I literally cannot do anything and if I miss a tablet then I start to suffer.

I suppose I am looking for someone to say "yes it's rheumatoid arthritis" or "no it's not" but am beginning to think that's not going to happen! I suppose I am also wondering whether anyone else has been in the same boat and how long it was before/if any more symptoms developed.

Anyway thanks again

helpline_team

Hi Kaylion,

You may find it helpful to write down these questions to explore in depth the next time you see the specialist. I think you have been given something of a diagnosis, but there is something non-standard about the way that your condition may not be severe enough for the specialist to consider stronger treatment.

You may eventually wish to explore a second opinion, but that may be premature at the moment.

I wonder how much self-management information you have? do send your name and address to helplines@arthritiscare.org.uk and we can send you all of that.

I don't know your gender/ age or working/ or life circumstances but self-managment can be different depending on some of these factors.

You'd probably find detailed guidance from occpational therapists helpful with your wrist. (Do you have a splint yet?)

I hope you get some answers, and do find our information helpful

Guy