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.

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

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

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? 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

Lyn x