Upset & confused by Rheumy comments

katat1

Hi all,

I have not posted for a while but have been reading the forums almost daily and keeping up with everyone's news and comments - very helpful!

I have beed doing well on the meds and have been lucky enough not to have any flares since last summer but have been experiencing sciatical-like pain in my lower back and right leg so have been attending Pilates classes at the hospital physio department.

Yestrday I had my 6 month appointment with the Rheumy Consultant and have always found her to be very nice, helpful, informative and encouraging which I am sure has helped me to keep positive and optimistic about my RA and treatment.

However, yesterday I was seen by a registrar as my regular consultant was over booked. He greeted me by saying ' I recognise your name, you have the highest Rheumatiod Factor concentration I have ever seen!' which of course spooked me big time as this is the first I have heard of it being so high. Iasked what that meant and he went into some technical explanation about how the RF test is diluted over and over until the reading is zero and that my test had to be diluted many many more times than was 'normal'.

I asked what the implication was for having such a high reading and he responded by saying I should forget it, it is only a number and they deal in people not numbers and he would not explain it any further. My understanding is that the higher the RF number the worse the prognosis so of course I was really worried by his comment and I have been stressed and anxious about it since leaving the appointment.

When I mentioned that the sciatica was no better he said very casually that I probably had OA of the spine and probably some erosion but 'keep doing the Pilates'. No other advice was offered so now I am worried about that too!

Finally, when it came to discussing my meds he said he felt there was no need to increase them (much to my relief; I am on 15mg metho and hydroxy twice a day) and then he said quite flippantly ' I don't like to give my patients more poison than absolutely necessary!'

I know how anxious I was at the prospect of taking these meds when I was first diagnosed and have read many posts from others on here who were just as anxious and frightened as I was. My consultant has reassured me to the point where I felt it was not so bad and I got on with it and as I said earlier, my results have been good. However yesterday's session with the registrar has completely undermined my confidence and optimism and I am now anxious, stressed and tearful wondering what the hell the very high RF test result implies. Will I get worse, will the RA become more and more aggressive in the future leaving me disabled? What are the 'poisons' doing besides relieving my symptoms and waht damage will they cause long term?

I am now in a real state worrying about all these unanswered questions and don't know how I can get myself back to being positive and confident that I can manage this.

Sorry for the rant but if anyone has any answers or explanations I would be really grateful to hear them!

Best to you all,
Kat
x

Wonkylegs

HI Kat,

my goodness no wonder you have been left worried and anxious!

IT really is sad that the registrar didn't seem to think of the effect of his words before he said them ...... but remember that the consultant you have seen previously is in charge of your care , and you seem to have faith in her so remember that she is on your case and the registrar may not see you again!

In my case I have found that I can sometimes get more answers out of the registrar than I can out of my particular consultant - just proves that they are all humans and that they can't all be helpful and reassuring. (my consultant may not even know the meaning of these words!!)

I wonder if you have a rheumatology nurse? or have ever been given a phone number for a rheumatology helpline? If you have then I would suggest you ring them and ask them for their advice.

If you do not see a rheumatology nurse or have a helpline number for the hospital, then why not give the Arthritis Care helpline a ring on Monday or drop them an email..... the number is at the top of this page ..... they are really helpful, and they know what it is like dealing with difficult consultations. They may be able to help you with understanding what has been said.

Otherwise I would ask your GP if you have a good relationship with them, as this worry will not help you to cope.

I do know from my own battles with the thoughts of taking disease modifying drugs (I take MTX injections and Leflunomide now & am being asked to consider the biological treatments if we can't get on top of things) just how scary it is. I would urge you to think of them in terms of what good they can do ........ and not the other comments .......... as without them we are in danger from our uncontrolled RA.

best of luck & do think about talking to the AC helpline people on Monday.

hugs
WOnky

dolittle

Oh, Kat I am sorry someone has dished out these ill-considered words. I know just how you feel.

Remember, it's the way you feel that matters and the rest is just rhetoric. You can always contact the rheumy nurse and talk to her, or, as I have done, talk to the helpline here. This sort of behaviour is really not on. Just think that it is someone showing off.

Do take you meds, put his words out of your head, and you'll be OK. If you worry your RA will let you know about it.
Best wishes and ((( )))
Do

katat1

Hi Wonky and Dolittle,

Thank you both for your reassuring replies and sound advice. I will call the AC helpline on Monday to see if I can get some kind of understanding about the comments the registrar made as I really need to know what it all means!

I do not think he was ill intentioned, just thoughtless in his remarks - one of the types who opens his mouth and his brains fall out! But it raised questions that have not been raised before and I have found that having facts and information have helped me to deal with the RA in a positive way so far.

I do have a rheumy nurse but the phone number I have been given for her is an answering machine for the department which is checked once a day so I will probably get more info from AC.

You are right too that I should try to put his comments aside and focus on my RA progress so far which has been good with these meds and I have considered myself very lucky with the progress I have made.

Thank you again for your caring words - I do feel better already knowing there are people like yourselves I can turn to (I live alone so sometimes I can drive myself nuts worrying about things like this!)

Stay well!

Kat

xxx

skezier

Hi Kat,

Please don't let him make you stressed and worried.... he sounds to me like he is doing what one I saw did..... he doesn't know the answers and he is saying things to cover it.

I got pa not got ra and huge amounts of oa in my back. The sciatic pain can be helped a lot more than that! I agree with what Wonky and Dolittle have said and I think I would also see about some help with the back be it from a physio or as in my case the pain clinic and tablets very good at blocking pain.

Its so wrong that they don't understand we go to these appointments with so much 'hope' that they can do something. I now ask to see the Rumo if I feel worried or scared and as yet the nurses have never said no. Here when they give you the appointment I always ask to see him no the side kick and so far...... so good. Its so wrong but you have to play the system I guess?

Anyway I really hope you will feel better in you self and well a ((( ))) Cris x

katat1

skezier wrote:

Hi Kat,

Please don't let him make you stressed and worried.... he sounds to me like he is doing what one I saw did..... he doesn't know the answers and he is saying things to cover it.

I got pa not got ra and huge amounts of oa in my back. The sciatic pain can be helped a lot more than that! I agree with what Wonky and Dolittle have said and I think I would also see about some help with the back be it from a physio or as in my case the pain clinic and tablets very good at blocking pain.

Its so wrong that they don't understand we go to these appointments with so much 'hope' that they can do something. I now ask to see the Rumo if I feel worried or scared and as yet the nurses have never said no. Here when they give you the appointment I always ask to see him no the side kick and so far...... so good. Its so wrong but you have to play the system I guess?

Anyway I really hope you will feel better in you self and well a ((( ))) Cris x

Hi Cris,

I wonder if we saw the same one? Lol!

Just 'talking' to people on here makes me feel a lot better and ((( )))'s are a bonus!
You are right I think, he is saying things to sound as though he knows more than he does. This is about my health, not his ego and I have decided to tell the rheumy about it and ask not to be seen by him again when I go for my next appointment in 6 months time.

We are advised by all the medics involved to be positive and expect the best outcome and then one silly person comes along and makes you feel as though all the effort is futile.

The Pilates class is in the physio dept of my local hospital (C&W in London) and I was given the sessions by the physiotherapist after being referred to her by the consultant I saw previous to the rubbish registrar yesterday. I have another session next week then will see the physiotherapist again for another assessment then see what more can be done. The sciatica type pain is not constant, some days it is hardly there at all and other days it is very painful so it is a bit unpredictable.

In the meantime I am staying active, walking, cycling, working part time and running around with my 3 year old grandson (and looking forward to doing the same with my 1 week old granddaughter in the near future!) so I am doing all I can think of to help myself. The last thing I need is a twit of a registrar to dampen my optimism!

I really appreciate the advice and support from all of you here as i think all of you have a far better understanding of what we all feel coping with our various froms of arthritis than many of the 'experts' we see :?

((( )))'s to you too!

Kat
x

skezier

Hi Kat,

If he was good looking with a thing about injecting every joint he could then yep same guy I have never had so many cortisone jabs in one go ....... and that includes the ones they do in my neck But ask him a question and...... Well they say looks aren't everything

Hey if your Rumo is like these ones you could phone the secretary and get one of the 'spare' appointments and see the real Rumo before 6 months. If it was a bad consultation and you need to you can do it.

I really do agree so much with keeping active and am jealous over your grand kids..... I know in my case the back muscles have done so much to help the useless bones

You take care, don't let them wind you up and I hope you can get a better appointment next time. ((( ))) Cris x

katat1

skezier wrote:

Hi Kat,

If he was good looking with a thing about injecting every joint he could then yep same guy I have never had so many cortisone jabs in one go ....... and that includes the ones they do in my neck But ask him a question and...... Well they say looks aren't everything

Hey if your Rumo is like these ones you could phone the secretary and get one of the 'spare' appointments and see the real Rumo before 6 months. If it was a bad consultation and you need to you can do it.

I really do agree so much with keeping active and am jealous over your grand kids..... I know in my case the back muscles have done so much to help the useless bones

You take care, don't let them wind you up and I hope you can get a better appointment next time. ((( ))) Cris x

Haha! That made me laugh!
He was quite good looking actually and I think he was Australian. Didn't offer me any jabs as I didn't need any but as you say, looks ain't everything! I reckon he missed his vocation and should have been a surgeon, that way he could talk as much as he liked when treating patients but they would be unconscious so would not have to listen to any of what he says! :shock:

I am going to write to my regular Rumo and tell her how I feel after my appointment with Rambo and see if she might find a slot for me as you suggest. I would not have thought of that so thanks for the idea!
:idea:

Good to hear that your back muscles are helping the useless bones - that encourages me to persevere with the Pilates!

You take care too ((( )))

Kat

x

katat1

Update,
After 'rheuminating' on my session with the registrar last Friday I wrote to my consultant on Monday to tell her what had been said and how I felt about it.
She called me on Thursday evening and was very apologetic on behalf of the registrar and said she was going to have a talk with him about his rather inappropriate manner with patients, though she assured me he was in fact a very good and caring doc.
She also explained that the RF test result was dependent on the lab doing it as some labs keep diluting the test until they get an 'absolute zero' whereas other labs do a set number of dilutions. It is the number of these dilutions that determines the test result and so an overzealous lab can submit very high results. She said I was not to worry as my RF was now very low and I am progressing well, which is why I saw the registrar instead of her because she sees the more acute patients and newly diagnosed ones. That makes sense and she is great for newbies as she can really help you to understand and come to terms with things.
She was on the phone for about half an hour, obviously on her own time as it was about 6.30 pm and I did feel much better about things after speaking to her. She said I could call or drop her a note any time I had concerns. She added that it was good I had brought it to her attention otherwise she would not have known and the registrar may upset someone else.

Anyway, just wanted to tell you all of the outcome and thank you for your advice and support and also tell others that they shouldn't be afraid to complain or alert the NHS if they have a problem with how they are treated.

Kat
xxx

chris7

Kat

Bless you for this update, I was reading this through with horror and I don't even have RA. :shock: I would have rhueminated long and hard too!!
How badly you were treated by that registrar, so glad you did feel able to follow it through and speak out, and have had some questions answered by a much more caring member of the medical profession. So glad I read to the end and thank you again for letting us know.
Best wishes with your treatment and I hope the Pilates goes well.
take care
Chris

elnafinn

Dear Kat

I have only caught up with your thread now and am so relieved to read that on posting you received support from us. When alone one does tend to go over and over a topic and sometimes it all gets a little out of proportion. An easy thing to do.

You sound a very sensible person and did all the right things. Thank you for letting us know the outcome. I am so pleased for you that you have such a caring consultant and that you contacted her. She will no doubt sort out the "hiccup" so that others are not left reeling by this registrar. He most probably is a good and caring doctor but bedside manner is an area where there is often room for improvement with these medics.

It is good to praise where due but also to "complain" when necessary and this was most definitely a time to do just that.

I hope your day is going on ok.

Love
Elna x

dolittle

Hi Kat,
It was great to read your post this morning. I'm glad you feel re-assured. Good that you had the courage to contact your rheumy - one never can tell how they will react, but it sounds like she came up trumps.

I've had a similar morale boost this morning, so I can imagine how different you feel about it all. Great stuff.
Keep well,
Dolittle

elnafinn

Dear Do

So good to read that you have had a moral boost of a similar nature.

Lots of love and hugs
Elna x(())

katat1

elnafinn wrote:

Dear Kat

I have only caught up with your thread now and am so relieved to read that on posting you received support from us. When alone one does tend to go over and over a topic and sometimes it all gets a little out of proportion. An easy thing to do.

You sound a very sensible person and did all the right things. Thank you for letting us know the outcome. I am so pleased for you that you have such a caring consultant and that you contacted her. She will no doubt sort out the "hiccup" so that others are not left reeling by this registrar. He most probably is a good and caring doctor but bedside manner is an area where there is often room for improvement with these medics.

It is good to praise where due but also to "complain" when necessary and this was most definitely a time to do just that.

I hope your day is going on ok.

Love
Elna x

Hi Elna,

Thank you! I don't know what I would do without the people here who are so supportive and tolerant of a moan!
You are so right, it is easy to go over and over something and get it out of proportion sometimes. :oops: Don't know about 'sensible' though!

I am having a great day and hope you are too - and many more!

Very best,
Kat
x

Hi Dolittle,
Just posted on your other thread about Morale Boost. Onwards and upwards!
Kat
x

frogmorton

Hi Ka!

What a releif!!

I don't know how I missed your thread but I did, I am sorry.

Shocked at what you have been through but very releived at the outcome.

So glad you are ok now. Yes I agree thank goodness for this forum eh?

Love

Toni xx

woodbon

Hi, Sounds to me like the sort of person that speakes first and thinks later! Maybe he wanted to impress you! :shock: Having said it, he should have made it clear exactly what he meant and explained to you, but that is what a thoughtful person would do, not a self important twit!
I spent a month in hospital, with peritonitious(spelling??) and the first day home, the doctor who sent me in to the hospital in the first place came to see me, his first words "Hello, I never expected to see you again! :shock: ) Told him he didn't get rid of me that easily, but it was quite a shock! :shock: :? He was well known for that sort of thing.
Anyway I hope you get sorted out and can stop worrying. Love Sue

skezier

Hi Kat,

Well done you!!!! I am so pleased she was o about it and long may you get good treatment again.

Oh flower without this forum...... well...... I would have gone down big time in so many ways and for so many reasons. Luv and a ((( ))) Cris who now might write to the useless doctors x

jenzie06

I had a very similar experience with a registrar where he was very flippant and said things that were quite worrying.
So I wrote to my consultant (who was on holiday at the time otherwise I would have seen him) letting him know how disappointed I was with the registrar. He wrote me an apology but also apologised in person when I saw him next (by that time the registrar had moved on).

I do think its important to praise as well as let them know when you're not happy.

Hope you are feeling better about things. Your consultant sounded lovely.