What to expect?

Star2001

Hello. I have been spending too much time going over everything in my mind tonight so am off to bed soon. I have to wait a couple more days for the decision on my treatment but can anyone tell me if it's usual to be started on meds when there seems to be some indecision as to the exact label for the inflammation? Has anyone in this situation been left with no treatment until symptoms satisfy the doctors more conclusively? I have a horrible feeling that there is some disagreement going on regarding my initial cautious RA diagnosis since results have come in.

traluvie

Hi Star..
I do not have a definitive diagnosis.. my rheumy has said i have inflammatory arthritis of some sort which one he is not sure..My bloods were ok and bone scan showed the inflammation, he started me on treatment straight away, so maybe your rheumy is starting you on the meds sooner rather than later to prevent any further damage..
Speak to them when you go the appointment and ask them any questions that are on your mind, clear the air so to speak before starting your treatment..
Let us know how you get on..x

lalla

Hope you manage to sleep tonight, I understand that the treatment for quite a few of the inflammatory arthritis is the same type of drug. It is good that you will be starting soon as it will hopefully lessen joint damage. Could you phone your Rheumy nurse, she can chat to you and answer some of your concerns Take care Linda

Ankyspond

Hi,

Originally I was put on medication as I had sero negative which is basically when they don't know what type it is, took them 2 more years to decide on AS. If you are in pain and your quality of life is not as it should be then try the meds to see if they work.

Write down any questions you have before you go to your appointment it really helps and if you feel you need to write the answers down do it, take someone with you as well to take in the info they are telling you. I did a pain map which you are welcome to have it you want (unless I have already sent it, send that many out I forget), if you wan it PM with an email adress that accepts attachements.

Hope it goes well for you, try and get some sleep that will only make you feel worse. xxxx

dreamdaisy

I began sulph in January 2002, a month or so before my first synovectomy. No-one could tell me what was wrong with my left knee but they all agreed that, as it was two feet in circumference, swelling was a problem. Genuis deduction, no? Seven years of medical school paid off! Other meds were added along the way, I think the general diagnosis of an inflammatory arthritis was made in about 2003 (the very high ESR and CRP figures helped with that) then it was nailed to PA when I had a bout of that in late 2006.

We can't tell you what to expect, everyone's version of this is different, we are all introduced to different meds at different times, the usual 'starter' ones are sulph, meth and hydroxy, but your doctors will decide what is the best option/combination for you. Whatever you are given and whenever you are given it, I hope it helps. DD

Star2001

Thankyou all. This all makes very interesting reading. I don't think I've ever read of a more complex disease as arthritis :sad: When I spoke to the nurse she thought I was already on medication from the consultant! He had apparently noted that he would see me in clinic in 12 weeks but hadn't mentioned any medication for me. I can't understand that after what was said at the initial appointment. The xrays showed erosion and ESR is definitely raised but maybe it takes more than that. Don't know what to make of it. I don't want to start taking anything that I have no need for but hope by the end of the week I know one way or the other. Anyway she is speaking to someone about it for me and getting back. That's why I'm so confused, have been getting mixed messages all week. I wonder if someone has decided it's not early RA as first suspected? What will happen to me then?
I know I sound all over the place.
Star.

Star2001

And I was just wondering is a positive RF result always a sign of RA or can it be any inflammatory arthritis? I would guess only Rheumatoid? I need to settle down :sad:

Craine1998

Hi everyone this is my first post - I'm very interested to learn from you all as I'm still trying to get my head around this.

I'm a 40 year old mum of four who about 6 months ago started to experience a swollen wedding ring finger, brushed it off then a month ago lost strength in right wrist - couldn;t use keys, scissors etc spent a lot of time in tears etc. Dad has RA, sister has hyper mobility syndrome.

Like so many of you I don't know exactly what type I may have - GP queried RA but blood tests came back negative - would feel a bit like people think I'm making it up but my hand and wrist visible swollen and extremely painful.

So Tuesday this week GP diagnosed Naproxen 500 mg, its taking the selling down but still getting a bit of pain that travels down towards elbow - but finally started sleeping again... says he'll see me agin in a month then might refer for scan, more blood tests and to consultant. But feeling a bit sick at times , is this normal with the Naproxen?

Boss says to come back when better (?) - have self certificated for a week - aiming to go back tomorrow before I lose all confidence in myself.

Finding it realy hard to put into words how emotional I'm feeling - anybody offer any advice on what to expect ?

Thanks in advance

Craine

valval

Craine1998 wrote:

Hi everyone this is my first post - I'm very interested to learn from you all as I'm still trying to get my head around this.

I'm a 40 year old mum of four who about 6 months ago started to experience a swollen wedding ring finger, brushed it off then a month ago lost strength in right wrist - couldn;t use keys, scissors etc spent a lot of time in tears etc. Dad has RA, sister has hyper mobility syndrome.

Like so many of you I don't know exactly what type I may have - GP queried RA but blood tests came back negative - would feel a bit like people think I'm making it up but my hand and wrist visible swollen and extremely painful.

So Tuesday this week GP diagnosed Naproxen 500 mg, its taking the selling down but still getting a bit of pain that travels down towards elbow - but finally started sleeping again... says he'll see me agin in a month then might refer for scan, more blood tests and to consultant. But feeling a bit sick at times , is this normal with the Naproxen?

Boss says to come back when better (?) - have self certificated for a week - aiming to go back tomorrow before I lose all confidence in myself.

Finding it realy hard to put into words how emotional I'm feeling - anybody offer any advice on what to expect ?

Thanks in advance

Craine

did they give you stomache protector to take with naproxen it must be taken with food not just a snack or can harm stomache. you will be up and down arther makes you feel exhausted and messes with your head so rest when you can there is no fast route with arther but when they get right meds for you things will be much better good luck val

Craine1998

Thanks

No - nothing at all with it - didn't mention alcohol consumption either so I'm a bit confused.

Very emotional today..... need to get back to work as my job is changing in January and GP didn't offer time off -

As an aside also seem to be living off toast at the moment. GP suggested wearing a glove ??????? sent daughter number 1 off to Primark to buy me a pair....... will this help?

Googled Naproxen and wished I hadn't but on a positive front was able to unlock a door this morning - that's definitely an improvement.

My boss said to get myself better before coming back - don't think she has any understanding of arthritis and inflammation - good job I have a sound knowledge of policies and procedures at work....

dreamdaisy

Hello craine, it's nice to meet you but I am sorry you have had to find us. I don't know how many people will spot your post as you have joined another thread, so please consider reposting on the same forum but under the new topic heading, then more people will know you are here.

I can't help too much on the meds front as I am much further down the arthritis road than you. Nap should be taken with a stomach protector such as omeprazole, it can take time to find an anti-inlfammatory that suits one and that delivers the best results. Most of the arthritis meds are quite powerful in their nature and can cause all kinds side effects, but these should fade after time.

Given the family connection with RA then I hope your GP does keep an eye on things, it is possible to have an inflammatory arthritis that does not register a positive rhematoid factor (I have one of those) and it can take a while for an accurate diagnosis to be sorted out. Be patient with yourself and life, use pain relief in addition to the nap if necessary and do not be afraid to ask us any questions you might have. But do please re-post, I fear you could be 'lost' otherwise! Take care. DD

dreamdaisy

Star, these are very early days for you. Arthritis is a confusing and muddling business, even us old-timers get swamped by it all from time to time (well, I know I do). I am sure you have hives of bees swarming around your mind but please be easier on yourself, be kinder to yourself: as time passes hopefully things will become clearer. DD