Reumy appt: Just out off reumy appt thought I was going... - NRAS

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Reumy appt

popsmith1874 profile image
7 Replies

Just out off reumy appt thought I was going onto biological treatment next and so did head reumy nurse, well the consultant upped my mtx injections from 20mgs to 25 msg and put me on hydrocholycine 1.5 and I'm on sulfazalasine 4 tablets daily complete waste off an appt the only worthwhile thing was a steroid injection which will help a month and then I'll be back in 3 months the same as I was before today but who are we to argue , we are only the guinea pigs have a good day everyone

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popsmith1874
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moomie profile image
moomie

I had a very similar appointment at the end of September so I know just how you feel. Hang in there I do hope your Nurse helps you out. Have a good rant or do whatever to get the frustration out. It does seem so unfair to raise your hopes. Makes you feel like you are asking for the moon, not a treatment that will help you live a more comfortable life.

Hugs and best wishes from me.

popsmith1874 profile image
popsmith1874 in reply tomoomie

Yes it's frustrating and to cap it all, when I wa getting examined the consultant gave me a letter for my doctor and I've just noticed the sticky label with your hospital number and name and address on it is someone else's details so they will have mine what a day you couldn't make it up ha ha just as well we can laugh about it

moomie profile image
moomie

Crickey that is bad. It's not just me then thoses things happen to.

Yes you are right you only get yourself upset.

The Reg I saw never examined my joints properly and the Nurse that had done my biologics assessments asked later if I had the extra bloods she had recommend in my notes. Of course not!

Have a alcohol free blue Becks it will make you feel better.

If your DAS is high enough and you've tried and 'failed' 2 DMARDs, you have the right to ask to try a biologic. It's not just a case of making a suggestion, it's your right.

If your rheumy isn't going to treat your disease aggressively enough to make a difference then you can ask to be transferred to a different one. Your GP would be the person to ask about starting the process. None of us want to spend time on this particular palaver but when it pays off .... well, then it seems so worth it.

I had a rheumy who truly went the extra mile ... in the wrong direction. Not only did he want to keep me and all my swollen joints on DMARDs ad infinitum, he decided to limit them to Mtx and reduce the dose. Much as I hate taking drugs, same as we all do, I could see I was on a hiding to nothing. That rheumy did me a favour actually, his tendency to shout absolute gibberish at me made my mind up for me.

So 6 months later ... none of this is easy .... I trucked up in the office of a different rheumy in a different hospital that's a bit further away from my home. The man was a whirlwind. Proper treatment, the biologic I needed plus very good monitoring of my condition, ensued pretty damn quickly.

popsmith1874 profile image
popsmith1874

Yes I think I'm going to do that,the head nurse was dead keen and took extra bloods for I think the first process in screening, but I'm not happy to be on methotrexate still because I had a severe angina attack 2 weeks ago which was nearly a heart attack and I'm almost certain it was the medication, so what did she go and do she increased it from 20mgs to 25mgs and I told her so.just to cap a bad day when I got home I looked at my medication sheet for the doctor and the white paper with your hospital details on it was someone else's details ,so I don't know if my bloods have been mixed up with someone else's so she didn't have a very good day I know their very busy but you don't mix up people's details. The only bright note off the day was the jag I got for my joints which should keep me going until I get a second opinion take care

carotopgal profile image
carotopgal

I'm so sorry! I know from reading your posts how you were looking forward to this appointment to try to get on the biologics. You never know, maybe upping your dose and adding something else will actually help. I hope you feel better soon!! Gentle hugs!

Fruitandnutcase profile image
Fruitandnutcase

So depressing. Sounds like a visit to the endocrologist, there you are all excited and looking forward to progress, in go - zilch - out you come, depressed.

When people on my third forum ask what to expect on their first visit, I always say 'nothing, then you won't feel let down' I think the less you expect the better the visit the better it tends to be. Your case is disappointg because you and your nurse were actually expecting you to start on biologicals.

As for popsmith's experience I will never grumble again they double, triple quadruple check my details and who I am! Scary isn't it.

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