Rheumy Appointment left me confused???

traluvie

Afternoon all..

Had an appointment today with rheumy.. My last appointment was january where he sent for bone scan which showed mild inflammatory arthritis in ankles feet, elbows, wrists and OA in knees...
My GP and physio said inflammatory arthritis was RA..
Went to my appointment today and he totally confused me..
He asked how i was i explained that the pain was more frequent and for longer, it is affecting my daily life and my mobility now..
He went on to talk about people who have severe arthritis with hardly any problems and other people can be in wheelchairs or suffer as i am and doctors are unable to find a reason why, these people would be discharged from rheumy and sent to pain management clinic..
So i then asked well what does my results mean??
Basically he said that i have some sort of inflammatory arthritis but he not sure what as my bloods are ok but the bone scan is saying something not right..???
He wants me to continue the hydroxy and take the steroid tablet along with my other meds and will see mi in 6 months time.. He has repeated some bloods and done some new ones..
He looked at my hands, they are sore today but not swollen, he said it was also hard to say what it was too without seeing any obvious swelling?
I explained that since my symptoms started in september and i am on regular medication the swelling is not so bad but the pain is worse..
I don't wether he is trying to say to me that he may discharge me and see me to pain clinic as he can't find what actually wrong or what...
There is obviously something otherwise he surely wouldn't put me on hydroxy and steroids??
So i suppose it's just taking one day at a time again but not really knowing whats going on??
I feel like stopping my tablets so i swell like i did before so i can go to him and show him lol..OH said that would be stupid..lol..
Thanks for listening to me..feel better getting it off my chest although it still be whirring round in my head for a few days lol..

dreamdaisy

There are many different forms of arthritis and he has told you that you have an inflammatory version. This would indicate to me that it is an immune-system based type and indeed you have found that the medication you have been taking has helped with easing that. Once the doctors accepted that there was something wrong with me that was my diagnosis for a number of years - 'you have an inflammatory arthritis'. That didn't tell me much but it told me something. They then moved the goalposts to PA when I had a bout of psoriasis - all that did was give me a different label.

Being told it's RA or PA or whatever doesn't change how its treated. You have hydroxy, has he suggested anything else? I think a referral to the pain clinic is a good thing as they should be able to help you much better with pain relief etc, but what about methotrexate/sulphasalazine/leflunomide? Has he mentioned any of those? I think they are the initial, standard treatments for inflammatory arthritis, regardless of its label. I apologise, I cannot remember if you are on any of those already, sorry. :oops: I don't think he will discharge you from him, not yet, anyway. Why would he? You have an inflammatory arthritis and that his is his area of knowledge. I am mystified by his comment about people being severely affected with arthritis yet they hardly have any problems - I can't see that being true for one moment!

I am sorry that he has confused you further, it is such a difficult disease to diagnose and treat sometimes, everyone is different in what is affected, how they are affected and in how they react to treatment. It's not easy. DD

traluvie

Thanks DD..

I know he mystified me with some of the things he said, he certainly confused my OH.. The bit about people with severe arthritis and no problems confused me.. i'm not sure if he was saying that no matter what type there is mild or severe people can react differently?? not sure..
I am currently taking hydroxy with tramadol,diclofenac,paracetamol when necessary and amtriptyline at night..
He said he didn't want to try me on anything else as they are toxic drugs and because he not sure what type i have he doesn't want to cause me any damage if it is not necessary...
I kind of feel like i back to square one with not knowing..
I am grateful for starting treatment though and maybe the hydroxy will work so i can be supermom again lol..
We shall see..
How are you now feeling DD your knees bit better?..

julie47

Hi tracy

I have had arthritis for 23yrs and I am still baffled by the docs and rhummys. My doc says it looks like pa had psoriasis in teens early 20s
but the rhummy peeps say ra cause i have nodules and mishaped handsand feet.

I hope the extra test on your blood help them to diagnose you properly next time you visit, and the meds you are on help to control your symptoms in the meantime.

take care
juliepf x

Starburst

As DD has said inflammatory arthritis is not nessecarily RA, there are many different types. They are treated the same, so I wouldn't worry too much about the exact label. My arthritis was considered mild at diagnosis and I was started on hydroxy, so I think that's normal. Mine unfortunately progressed, so I moved on to mtx. Yours wouldn't have prescribed anything if he didn't think it was needed and it obviously has helped if your swelling has reduced.

My rheumy also told me some people are more affected with pain than others. She told me she has one patient who gets hardly any pain but tonnes of swelling and stiffness and her joints are eroding away. I think your rheumy (and mine) was trying to explain that it affects everyone differently.

The swelling issue is a strange one. I have been repeatedly complaining that my ankle is excrutiating but there is no swelling upon examination. I had a MRI of it that showed a lot of inflammation and excess fluid. So, examination doesn't mean that swelling isn't present in the joint.

The pain clinic sounds like a good idea. Are you being referred?
Hope you're feeling a bit brighter. x

tillytop

Hi Tracy

So sorry you had such a difficult appt and have been left feeling confused about what's what. I think the comments the other peeps have made are very wise and it does sound as if the rheumy is taking it seriously - hence adding in the steroids. In terms of the swelling, from what I have read on the forum this affects people differently. I have very little swelling generally, even when my joints are very inflamed - and when I went to the rheumatologist recently, the nurse who was doing a joint count commented that the swollen joints were not the ones which appeared to be painful. Go figure!

Really hope the steroid helps to give you some relief.

Thinking of you.

Love Tilly xxx

traluvie

As daft as it may sound i actually feel better from reading your replies..
Now i know there are others in similar situations..
It is such a hard thing to understand,, don't think i ever will lol

StarBurst.. i can have excrutiating pain too but no swelling and other times i have swelling with bit of pain..??
I mean if doctors struggle understanding or diagnosing what hope do we have lol..

Julie.. It is deffinately confusing and i suppose every doctor is different.. we will get there one day i sure lol..

Tilly.. the steroids helped before i just never went back for more as i was worried about side effects lol but rheumy said in small doses they should be ok..

After reading the replies though i not gonna worry now..I am just going to be thankful i am on meds and go with the flow..

Thanks again all..

MissKat

Hey Tracy,

It's all very confusing I know! I also have 'some form of inflammatory arthritis'... more info pending! :S

I've not been on my meds long, or been seeing my rheumy long - since November last year. I was put straight on steroids which really helped me, and then in January I started Meth, and am now gradually reducing the steroids. I know we're all slightly different, but 6 months seems a long time before you see your Rheumy again so early on in diagnosis?

Don't stop the meds though! (ah, I see you're not going to - good decision!) See how you go, and you can always request another appointment sooner than he suggested if you're not happy / they're not working for you...

Take care, MissKat x

traluvie

Miss Kat.

November was when i started seeing my rheumy too,
My symptoms started september but what started in my finger soon spread to what feels like every joint..
It's nice to know that others have been diagnosed with some sort of inflammatory arthritis and are still unsure..
Feel better for your replies..
Thanks all

barbara12

Hi Tracy
Dont they just leave you wondering, I have OA in multiple joints, it turns up everywhere really,my GP was concerned when my ankle and one hand joined in, so I saw a rheumy, who check me over and said OA that was after an appointment of 12 mins.
So off to the pain clinic, who sorted me out with more meds, but I still am left wondering.
Sorry Im going on about myself here, but what I am saying, if things dont improve then you push to see a rheumy again, and tell them you need to know what is really wrong.
I wish you well with it all
Good Luck
Love
Barbara x

MissKat

Tracy,

Very similar to you then! Mine started in August in one knee... then the other... then my jaw... then my left ankle... and now some of my fingers... we're falling apart!!!

Well, as Barbara and most peeps on here suggest - push to see your Rheumy again if you're not happy... and meanwhile... we're all here for you!

K x

tillytop

Hi again Tracy

Hope you are still feeling more positive. I think your plan to "go with the flow" is a good one.

Hope the steroids do help you again. I understand your worries about the side effects but hopefully, because you are on a low dose you won't have any problems. My GP indicated to me that anything below 10mg daily should minimise significant side effects and generally docs don't like to prescribe them for prolonged periods unless absolutely necessary.

Thinking of you.

Love Tilly xxx

skezier

Hi Tracy,

Sorry things are not too good just now and hope you an get less pain as well as less swelling soon.

Its not an either or with the pain clinic and rumo so may be you will have like me and see both?

Its clear something is going on and it does take a long time for them to get a real diagnosis sometimes. If he does decide to discharge you then you can ask for a second opinion with a different rumo so its not the end of it.

I don't know that he will and well hang in there and hopefully next time you see him there will be some better info and diagnosis cus this one is just too vague really.

Can you talk to your gp about the scan and find out what it is showing? might help to understand it a bit better if they bothered to tell you. hang in there flower and hope the pain will soon ease for you. Cris x

frogmorton

Hi Tracy

so gald you are feeling better already and sorry l missed this.

Hydroxy and also sulfa are the standard first line treatments for inflamatory arthnritis. I started on hydroxy and now have colchicine too.

Thing is that infalmatory arthritis is naughty and flares up and then is okish again. Dont worry he may not be planning to discharge you just yet.

You are doing ok.

Love

Toni xx