My 1st App with the consultant (not so straight forw... - NRAS

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My 1st App with the consultant (not so straight forward )

lovingit profile image
23 Replies

My G.P. (who is not a G.P. he's a Physician) his words not mine!! told me on 16th May my blood results are back & confirmed with an RA factor 160

ESR HI 21

Rheumatoid screeninig test 83.7 hi

That I have high scores for RA and will be treated aggressively with MTX. The consultant doesnt seem to agree & wants to treat as Psoriatic arthritis with Hydroxy 400mg daily.Had lots more blood taken for CCP & ESR ,X-Ray on feet etc....Go to see my Doctor tomorrow for advice as she said if I want to wait till blood tests come back , then start my Meds then (as I said to the consultant) I dont think that decision should be mine !!!Very confussed .

Question ...do u get nodules with Psoriatic arthritis

Just want to be sure I'm getting the right treatment from begining As they say with R A the sooner its treated the better.

I'm even more confused & worried now. Any advice. Anne x

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I'm a bit confused too. I don't know if you get nodules with PsA but presumably your consultant knows about these nodules from when they examined you? Your ESR doesn't sound too high and you Rheumatoid Factor isn't through the roof but it is quite high. Psoriatic Arthritis is generally sero negative so that's a bit surprising but I believe these conditions can overlap or develop - the drug treatments are much the same though.

The bit I find confusing is that your GP is not a GP but a physician - are you based in the UK? When you say you go to see your doctor tomorrow do you mean the GP who isn't a GP but seems to be a man or your actual GP - who you describe as "she"?

The only people who are qualified to diagnose RA or Psoriatic Arthritis (PsA) are rheumatologists - not GPs (or physicians!) but both PsA and RA can be equally serious and given that you have psoriasis it might be quite a sensible decision to call your inflammatory arthritis PsA for the time being. Hydroxy is one of the least aggressive disease modifying antirheumatic drugs but you will need your eyes testing regularly (annually). Lots of people on here take it either on it's own or more commonly with a second or third DMARD as well. It is also a first line drug for Lupus (SLR). Tilda x

lovingit profile image
lovingit in reply to

Hi,TildaT, sorry if I'm not very clear with things,still trying to get my head around this site. Anyway, Yes I am in this country,would you believe Blackpool (I love it)ha ha .My GP is new to our medical centre and when I thanked him for being so quick with blood tests,x-rays etc...he said its because hes a physician not a GP.He does also work at B/pool vic 2 days aweek .Also when he looked at my x-rays of hands he said there is quite a bit of erosion (which again didnt go with (PsA)

When I said SHE sorry I meant Consultant (hope thats a bit clearer)

I know what I want to say, but doesnt sound right when put on here..Hope I'll get better at it ..Anne xx

oops I meant to write SLE (Lupus)!

Thanks for explaining Anne. Sorry you have already experienced some erosion. As far as I know erosion is just as much of a problem with PsA as RA. There are others on here with PsA and a few people with both. The physician sounds like a useful person to have seen but he still can't diagnose RA or PsA unless he's a consultant rheumatologist. I would trust your consultant first and foremost for the time being - although if you already have erosion I would be surprised if they didn't get you onto methotrexate soon. She may want to find out what your anti-CCP test comes back as - negative would point more to PsA and positive would look more to be RA. As I've said both are treated the same anyway although I believe the newer and more expensive drugs are sometimes given more quickly for PsA than RA because the DMARDs aren't quite as effective always so the criteria fir measuring dosease activity is a bit different. You will be feeling pretty shocked I bet but reading up and learning as much as you can is usually a pretty good start. Tilda x

lovingit profile image
lovingit in reply to

Dont know about feeling shocked,I've never known so much about RA (and now) I have to start learning about PsA.I'm pooped !!!! Well see what my GP says tomorrow at least I'm in the system now & things happening so thats good news.Let u know what he says & thanks for all ur advice Anne x

Yes its such a lot to take in isn't it? The main thing is to be diagnosed and feel confident in your rheumatology team. The GP/ physician may know something about muscoskelital disorders but I would advise you to be a bit wary about his knowledge and trust your rheumatologist. She may look at the blood results and x-rays and add in another drug or perhaps two more and this applies just as much to PsA as RA. You may also find it helpful to go on the Arthritis Care site's Living With Arthritis forum if you haven't already. Georje and Ratsarattus are the two main PsA sufferers on this site but there are others including someone who is newly diagnosed so please don't start feeling you are in the wrong place. The two diseases are very closely related as I've said. Xx

lovingit profile image
lovingit in reply to

I will most definately look into these sites in the morning,but for now I'm having some shut eye & thankyou for all the advice It really does help xx

sammiebabe70 profile image
sammiebabe70

I have Psa and sero negitive arthritis after reading these comments can i ask my GP to explain my blood results as ive not been told about all the bloods x

helixhelix profile image
helixhelix in reply to sammiebabe70

Yes, I would do. it really helps to get to understand the disease, and helps you have useful conversations with the rheumy's and helps you manage your disease as well.

helixhelix profile image
helixhelix

Curious to have a GP/physician....makes me wonder what his primary interest is. Ie whether he's a GP trying to become a physician, or a physician who has decided to do more generalist work to round him out. Do you know what his specialism is? As if nothing to do with musculoskeletal diseases then I would be more inclined to listen to the rheumy. But do take some comfort from the fact that you are being prescribed one of the first line drugs, so it's not as if you're being left untreated but sounds as if doc is just hedging her bets a bit until anti-CCP and x rays come back. It may well be that you respond well to it, and don't need anything else. There are some people who've found that it does what's needed. good luck. Polly

lovingit profile image
lovingit in reply to helixhelix

Hi, I have an app later with my doctor & will certainly be asking his position so I can put the record straight on here.!!!

As I have tried to explain (probably not very well) he came to this diognosis as a result of Blood tests (which clearly state on them RA positive on a few pages) which I have Also X rays of my hands which have erosion in them But I think more importantly This is the exact same info that consultant has So my confusion is How can it differ untill she recieves more blood results being CCP ect Will get there one day But I will defend my Doctor he acted so quickly Anne xx

cris1728 profile image
cris1728

Hi Anne it is confusing for us and even the consultant rheumatologist have some problems interpreting the results, I was told in Nov that I had undifferentiated inflammatory arthritis had positive RF of 167 but rest of bloods were normal with neg anti CCP, over the following months I had 4 steroid injections which really helped, have you had this suggested to you as an interim measure until they get the rest of your results back?

at the beginning of June I was given a likely diagnosis of Psoriatic arthritis and have now been started on methotrexate, I can understand your concerns at starting Dmards as the side effects can be quite frightening but apart from a little nausea I have had no problems although everyone is different.

Good luck with your appointment today

take care cris xx

lovingit profile image
lovingit in reply to cris1728

The thing I dont understand is (well lots of them) people seem to be calling my doctor(GP)for giving a diagnosis But its the blood results (that I have infront of me) that say in black & white on every page R A positive, score High & hand X Rays with erosion (which again I've seen) J ust defending my fantastic Doctor who is not just a GP

I am going to him later see what he has to say But I will ask him his position xWe'll get there in the end Anne xx

lorann profile image
lorann

Anne, I have had Psoriatic Arthritis for atleast 30 years, though not diagnosed as such for a very long time. I developed first problems in the spine, with deteriorating vertebrae, have lost 41/2 inches in height. Also affected all the bones in my feet..that is when the diagnosis was made. So yes, Psoriatic Arthritis does cause erosion and damage to all the small bones and joints especially. Very similar to RA and both are treated much the same, though, as Tilda pointed out, the usual DMards are not so successful. The biologics work so much better, but one may need to try more than one before you notice improvement. More recently, I have had problems with my hands, fingers and wrists, despite the Biologic Simponi. I also take MTX and Leflunomide. I have a highly respected Rheumatologist, and think I am as good as I can get.

Question: What does GP mean? In the US it is General Practioner, a Specialist in General Health Care who is indeed a Physician. I assume that is the same in UK. No reason why they can't make a diagnosis, given the same info as a Rheumy, but they generally refer to a Consultant for management.

I wish you the best of results as you progress with your treatment. Loret xx

helixhelix profile image
helixhelix

Anne, it's probably us who are not explaining well - not you! Once you've had this for a few years you forget a bit how confusing it is to start with. Being positive for rheumatoid factor, and having inflammation showing up in your blood tests doesn't give 100% certainty that you have RA. It just says that there's something up, and quite possibly inflammatory arthritis. But you can have the same results and just have a passing problem and be perfectly healthy, or have one of a range of different things like Psioriatic Arthritis, or RA or Ankolosing Spondylitis... Diagnosis is usually made on a combination of blood results, physical examination and your explanation of how you feel. So it's quite common that there's a difference of opinion to start with.

But great that you have confidence in your GP, we just get curious about new situations. Polly

Yes I agree with Loret and Polly. Sorry I didn't mean to criticise your doctor but it is a very specialist area - rheumatology - and nothing is ever black on white I'm afraid. RA and PsA can't be diagnosed on blood tests alone either.

My GP is also fantastic too and he diagnosed RA on the strength of a positive rheumatoid factor and high ESR and CRP and my symptoms and autoimmune history. He put me on a DMARD himself because he was concerned about the wait I would have. Unfortunately I had a severe adverse reaction to it though. The consultant said he shouldn't have done this of his own back but he referred me straight away and I was very grateful to him for his quick response and for sticking his neck out for me - just as you are. With hindsight this response has quite possibly helped me even more than I realised at the time. Being a GP he is a generalist -but I try not to make this too obvious to him as he's been so good and obviously knows more about muscoskelital conditions than most GPs too as he takes a keen interest.

However when I finally got to see the rheumatologist I was under the influence of tail end of a steroid injection and he said something was going on but not enough to diagnose me with RA so I had to wait another four months - by which time I had been through the mill and back and RA was fairly evident! But PsA is just as serious as RA and can do just as much damage and gets treated in much the same way so I wouldn't worry too much about the differences at this stage if I were you. I was told by my consultant "working diagnosis of RA but keep an open mind" so I do - I wouldn't be a bit surprised if mine turned out to be PsA instead. Tilda x

fastball profile image
fastball

i was first treated for RA, but alas it wasnt. I have PsA which took about two yrs to diagnose. I was put straight on to MTX and later tried Sulf. which i cannt take made me vilantly sick. I am about to try Hydrox. at my next visit to Rhuemy . I would surgest patience and wait and see.

Gently hugs to you and good luck.

Chris

lovingit profile image
lovingit in reply to fastball

Why do u say "alas" surely u dont want to have RA.Isnt it better to have PsA.

You'll have to let me know how u get on with Hydroxy as I might have to start it soon

Good luck,hope all goes well x

Anne xx

fastball profile image
fastball in reply to lovingit

I didnt mean it that way, i thought they were much the same only PsA doesnt show up in the blood. Sorry if i gave the wrong impression. sending hugs to you. I dont go back to see consultant till Oct. so you might be on it by then.

Chris

lovingit profile image
lovingit in reply to fastball

Hi Chris, sorry I really dont know anything about all this (just desperate to answer people ) I was compairing RA(to flu ) & PsA (to a cold ) shows how little I know. But the more I ask my silly questions hopefully one day I will understand .

Thankyou for explaining things to me

Anne xx

lovingit profile image
lovingit

Been to see Doc with info from consultant,he thinks the same as me.That I should wait until the new blood results come through The main one being CCP.along with X rays of feet & bone density test .So all in all worth waiting for,shouldnt take too long then I can let u know IF I've got a diagnosis .Anne xx

I'm not sure why you think PsA is better than RA Anne? It is an equally serious disease and if you are in any doubt you should read Helihelix's blog on the homepage and see what Georje has to say about it or go on Arthritis Care Living with Arthritis forum and see how people with PsA fare on there. I think there are degrees of all these diseases and RA can be quite well managed for some and same for PsA but for others both can be terrible. Hopefully whichever you have you will get it well controlled through the drug therapies.

lovingit profile image
lovingit in reply to

Hi Tilda T, as you all know I am new to all of this,but I am aware I know nothing(or very little) please bear with me when I ask stupid questions,hopefully that will sort things out in my mind. I think I was compairing RA (being flu) & PsA (being a cold)

I need to do a lot more reading,that said, I am getting so much help & advice off you guys and it is much appreciated.

You all seem so experienced with lots of knowledge.For the time being I'll just keep reading (ask the odd daft question)but one day I would love to reply with some positive advice

Thanks Anne xx

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