Bad rheumy appt

Starburst

I really need to vent and just be heard by people who understand.

My rheumy really wants me to be on hydroxycholorquine because he says it's the mildest drug and the one he prefers to use. However, it makes me faint. I've tried it twice now. It didn't even help my arthritis. I took my mum into my appt with me and she backed me up and said she wasn't happy with me being on this drug. I'm on MTX too but rheumy is unhappy about me being on it because it can affect the liver. I don't want to come off it because a.) I'm not getting any side effects, except mouth ulcers and b.) It's actually helping me. He suggested trying something else called mepacrine. I searched on the forum and got no answers. I googled it and saw that it is not suitable for people with a history psychotic illnesses. I have bipolar disorder and he knows this. While I haven't suffered from proper psychosis, I've had some problems. My mood is 100% stable now and refuse to take the risk.

I feel he treated me like I am a hypochondriac. Last appt, he said I probably have RA. This time, he said I was RF negative and that my type of arthritis won't cause joint damage, only pain. Well, that's good but my inflammatory markers are still high and he didn't even seem fussed. I was told by a foot specialist that he can feel I have worn down cartilage in my feet from the inflammation. Apart from the bone scan at diagnosis, I've never had an x-rays on anything. Basically, I'm just in pain, there's no other issue. However, this is really hard to live with.

Thank you for listening to me. x

dreamdaisy

Oh dear, he doesn't sound like an empathetic fellow. Most rheumatologists can't wait to get one on meth - the usual attitude is 'we need to sort your arthritis'. If you are willing to tolerate the ulcers etc then surely you should be allowed to carry on, perhaps even adding the hydroxy to the mix: both drugs could work better in tandem without upsetting you too much. Sero-negative arthritis won't show a rheumatoid factor anyway - one has to wonder how much this chap actually knows. Is there a chance you could be seen by another rheumatologist? DD

wibberley

Hiya Princess,

Your rheumy sounds a bit stubborn, to say the least! This whole sero-negative business is indeed confusing - I'm another sero-neg and my previous rheumy never requested an x-ray for me in the whole 27 years I was his patient yet my current one arranged for me to have one on my first appointment with her! I don't understand why he's so insistent you go on hydroxy when there are other mild ones he could put you on? If it's getting you down, I'd ask your GP to refer you to a different rheumy....one with a bit more sensitivity and who's actually prepared to listen to you!

Lois x

skezier

Hi Sophie,

Sorry you have had such a bad appointment flower. I wonder if he was listening to you at all? Maybe a talk with your gp could help in respect of the gp asking for a different drug? Its not fair to put you on one that makes you feel ill.

The not getting joint damage if your RF negative is rubbish.....

You might be able to see a different rumo? I hope something can be sorted for you. Could you let us now.... Talk to you gp flower. Cris x

barbara12

Hi Princess
I think that some of these rhumys really get above themselves,I had to see one a few months ago, and to be honest every-time time I opened my mouth he talked me down like I was a child.
See if you can get a second opinion , and don't forget it is you that is suffering not him.
I do hope you get some help very soon.
Barbara x

frogmorton

Hi Princess

I really don't know what to say....you did everything right - took your Mum and she backed you up.....

I hope it is just a case of him having a bad day and you will get a diferent response next time.

I am on hydroxy and now something else too colchinine (for gout and I dont have gout!!!!!). Sometimes I think they experiment on us, but i am sero-neg too like you.

Luckily for me the hydroxy has been no real issue for me at all, but it sounds like it is for you and that others stuff sounds very similar to hydroxy by another name!!!

Keep gathereing evidence on your condition (note down all flares etc) for next time you go and let's hope you get a better response

Sorry I wasn't much help.

Love

toni xx

mp1952

Hi Princess

I agree with the other peeps.. I can't understand what this Rheumy was talking about..

On my first visit to the Rheumy 2 years ago I had hand and feet x-rays and was told that I would have them every 12 months..

I would suggest you talk it over with your GP (take your Mum along to that too) and see if you can be referred to an alternative Rheumy..

Take care

Marion x

Starburst

I really appreciate the replies. I teared up reading them. This forum has been a great source of support for me over the last year since I was diagnosed. xx

My rheumy insisted I 'only' have inflammatory arthritis. I wonder if that differs from seronegative RA? He didn't seem in a particularly good mood today, sometimes he is more responsive. I do understand where he is coming from re: the MTX and I don't want to be on it forever but for now, I don't see why I should have to suffer.

I feel a lot better for getting it all off my chest. He's asked to see me in 2 months. At my appt, I'm going to make sure I know what I want to say before I go.

dreamdaisy

Oh bless him, 'only inflammatory arthritis'. Twit. Twerp. Twonk. It's easy to tell that he doesn't have to live with it.

One thing that all adults should be able to do is set aside personal problems when they go to work. No matter what one's mood one has to be gracious and receptive to one's colleagues and clients, especially in the field of medicine. Perhaps you should try to see someone else: this chap does not sound right for you. Making a list is always a good move tho, it helps to keep the conversation on target! DD

dorcas

Hi princess

sorry to read about that upsetting and disappointing appointment you had with your rheummy. :roll:

I'm also astounded that he said it's only inflammatory arthritis :shock: .... as if somehow that makes living with this disease better. :?

PA (I think you said you have PA?) is a sero-negative arther and is one of the many 'inflammatory arthers'. It can be less invasive but It can also be just as destructive and damaging to joints as RA :!: ...

I agree with the others.... it may be better for you to ditch this rheummy and ask to be referred elsewhere. We rely so heavily on the wisdom and professionalism of our rheummys... and the one you've seen appears to have fallen short on both counts.

Good luck with this princess.... discuss it with your doc and see what your options are.

Iris xxxx

frogmorton

Hi Princess

I think all inflamorory arthritis' are sero-neg if they don't have the positive RF.

Two months though? that is interesting....very quick follow up apoointment. Hope that means you did get through to him on some level.

Love

Toni xx

Starburst

Thank you again for the support. I have considered asking for a 2nd opinion but I'm worried I'll get lumbered with a rheumatologist who's far worse. At least he's treating me! I'm going to assume he had a bad day and be far more assertive next time. I have possible psoriasis too, so I may see my GP to get referred to a dermatologist. I know I'm not a dr but I have an inkling this may be psoriatic arthritis.

tjt6768

Hi Princess, sorry to hear you're having a rough time. I was diagnosed with sero-neg in my wrists in March, he didn't even tell me I happened to see it on my dignosis letter, all he said was that I don't have enough spacing in the wrists (they did at least xray them) and he wanted me on the hydroxy straight away.. I must say that the only ill effects that I think I can put down to it (on lots of other meds) due to the timing is total loss of appetite and possibly sore mouth, but not sure if that is something else..
Anyway, babbling on again, lol..

Hope that you're ok.

Tony