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Disappointed with appointment with nurse! Options
emily
#1 Posted : Wednesday, September 14, 2011 7:29:12 AM Quote
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Joined: 12/3/2009
Posts: 89
Yesterday i had my rheumy appointment with one of the specialist nurses, now i saw this particular nurse when first dx back in 07 and was not happy with the way she spoke to me so i just made sure i did not see her again but specifically asked for the other one. However yesterday i forgot to do this and it was her that i had to see. I had made a short list of notes to discuss as i had been feeling unwell and wanted to get things checked out. I have recently got odd lumps which feel like hard bone on the side of my foot and causes pain, i referred to this three times but she failed to have a look, in fact she did no physical examination at all as where usually a score would be taken from all of my finger joints etc..! She spoke in length about the dangers of steroids and said that now i have been on them since 07 the likelyhood of ever coming off them was practically zero as my body will now be addicted to them and i will now run into trouble in my 50's. I feel she was negative towards me because i am not taking the mtx as yet due to various reasons. She said at end of appointment "well i could say just get on with it but i wont and suggest you increase your steroids". It was such a negative appointment that has left me feeling very sad and what's the point now if i've already messed up my body from the steroids.

Thanks for reading
emilyXXX.
jeanb
#2 Posted : Wednesday, September 14, 2011 9:09:08 AM Quote
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Joined: 12/3/2009
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Oh Emily

I'm gutted that you received this treatment from a so called professional.

I can't help with the steroid probs as I have been very lucky and had just 3 short courses over the past 8 years. However, I'm sure Jenni will help you. There are many others who have had steroids long term and I'm sure they will post too.

I really do think you need to write to the hospital PALS office and explain how disappointed you are with your consultation. I also think you should copy your Rheumatologist and GP in as well. Just tell it how it happened and ask for an urgent review with your rheummy.

It's lovely to see you on here again, even though it's with such sad news.

Take care and keep in touch.

MUCH love and big hugs
Jeanxx
jenni_b
#3 Posted : Wednesday, September 14, 2011 10:24:19 AM Quote
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Hi emily

Sorry that the nurse was so hard on you.

I have to have steroid- a lot of people do have to have steroids WITH the DMARDS and actually the MTX isn't the be all and end all. The steroids will help control the symptoms but wont control the RA and that will increase but in all honesty if its 'only' increased to the point it has in 3 yrs with no surgery needed then you have to wonder what else the MTX can do apart from slow the progress of the disease- which it might do for you.

Besides. In your situation there are other meds options like sulphazalazine, hydroxycloroquine and azothyaprin. These are all considered "safe enough" to ttc with and many specialists will give prg women these to help control the RA. If you were to try 2 of these and fail them then you can go onto the Anti Tnfs that I know you have views about.

Anyway!

If there are concerns about the steroid and ability to come off it- fine.

You need to be referred to an endocrine specialist and have a synathen test (spelling?) this will tell you for sure whether your body is making steroids and if you need to titrate the steroid down. People who have been on steroids far longer than you and indeed have to be it on them for life following organ replacements or due to having lupus or similar, do not have this problem. Even if they do, they have to come off the steroids very slowly and by doing this the body gets the idea it needs to make steroid of its own again and it kick starts.

You should have a test for diabetes too.

My GP explained to me to not take a drug is as valid a choice as to take a drug- as long as you arent doing it out of ignorance.

Take great care.

Jenni xx


how to be a velvet bulldoser
emily
#4 Posted : Wednesday, September 14, 2011 3:44:23 PM Quote
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Posts: 89
hello lovely Jean and Jenni,
it's been agaes since we've chatted!

Thanks for your replies, i have now left a message for my rheumy consultant to chat about the appointment.

I have been on hcq Jenni for a few years now and will defo try the anti-tnf's but my consultant won't until mtx has been tried first even if i try the sulphazalzine aswell which is ok as I am going to start the mtx just after xmas anyway, just want to get the flus and colds etc out the way before i supress my immune system even more. Good point about the mtx Jenni, as i think im right in saying the mtx wont actually help with the swellings/pain etc will it, it could/might just slow down the disease itself.

Will look into having that test done as the nurse can't know for sure that im not poroducing my own steroid anymore. I think she might have just been having a bad day!

Thanks again and takecare (chat soon to you both)
Love emily
XXX.
sheila_G
#5 Posted : Wednesday, September 14, 2011 5:09:28 PM Quote
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Joined: 3/28/2011
Posts: 956
Location: North Preston
Hi Emily

I am so sorry about your appointment with the rheummy nurse not going well. This really isn't good enough. It is difficult enough to deal with the RA without being treated in such a manner. I agree with Jean, someone needs to be told. You would be very unlucky indeed to catch her twice on a 'bad day.' She is a professional and should behave like one. I have come away from medical professionals feeling 10 times worse than when I went in and that isn't right. I do think you will benefit from mxt but when you decide to take it is up to you. It isn't easy for any of us to put poisons into our bodies, even though we know we need them but your 'specialist' nurse should understand that. If not, she should be doing another job.

Sheila x
BarbieGirl
#6 Posted : Wednesday, September 14, 2011 5:13:42 PM Quote
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Posts: 1,110
Location: London
Hi Emily, goo to have you back!! so sorry your nurse was so unkind and lacked empathy. I can't believe she was so off hand, and as for "I should tell you to get on with it" who does she think she is!!!! Hopefully your consultant can sort out this problem, they should be working as a team, and so he should know what members of his team are saying to patients. Let us know how it goes x
BARBARA
LynW
#7 Posted : Wednesday, September 14, 2011 9:25:49 PM Quote
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Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
Hi Emily

Good to see you posting but so sorry to hear of your problem with the nurse! I'm sure if this is her 'normal' way of behaving with patients she is probably already quite well known for it in rheumatology. It is certainly worth mentioning your concerns to them so they can take appropriate action if necessary. We shouldn't have to be worried about which member of staff we see, it's difficult enough sometimes attending clinics without adding more concern.

I have been on prednisolone at varying doses for the last 23 years and my body doesn't produce it's own steroid any more ... well, can you blame it really when the job's being done for it? Blink You have only been on them for four years or so and possibly only a low to medium dose. It may be worth having the test that Jenni mentions (synacthen), but I think I had a blood test done by the GP which simply checked the level of cortisol in the blood. I don't think they are the same test, but not sure. I'm in my 50's and I wouldn't say I have run into more problems, not yet anyway and if I do I'll deal with them as necessary. Silly woman ... clearly a noggin brain!

Try not to worry about it Emily. There are alternative drugs out there as others have already said. Good luck with your rheumatologist ThumpUp

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

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