Arthritis Forum
Home.

News.

Personal Stories. Links. Message Board.  
Arthritis Forum  
Add your comments to this topic Start a new topic
Date: 25.10.2011
From: Claire

Subject: I don't want my specialist to discharge me.

Hi everyone, I was diagnosed with PA about 5 months ago. My specialist has given me one option Methotrexate, which I don't really want to take for several reasons. I've changed my diet and I am feeling a lot better. I've been told that if I don't take the Methotrexate then the hospital are going to discharge me. But I'm worried if I start getting worse and I want to go on the MTX I'm going to have to wait months for another appointment. I'm not sure what to do, I don't want to start the treatment but I feel like I'm being forced to. Can anyone help me?
reply | back to forum

Date: 25.10.2011
From: Dilizjo

Subject: Re: I don't want my specialist to discharge me.

That sounds absolutely disgusting there is more than one medication to help us I would demand an appointment and take someone with you and demand a full explanation as to why they think this course of action is appropriate.
take care and keep us informed xx
reply | back to forum

Date: 26.10.2011
From: bsk

Subject: Re: I don't want my specialist to discharge me.

I can see their point. If you are not having symptoms or active treatment there is little point in them monitoring you. You are perfectly entitled to go your own way but they are not obliged to continue to see you as you are no longer under their care if you choose your own treatment. It would be the same if you had a broken leg and decided not to have it mended. They would discharge you. Your choice. Unfortunately, diet is not a 'treatment' Diizjo.

You could ask for an open appointment for six months and see if they are willing to do that.

Difficult to have your cake and eat it unfortunately!
reply | back to forum

Date: 27.10.2011
From: Dilizjo

Subject: Re: I don't want my specialist to discharge me.

BSK, I don't think I recommended Diet as a treatment what I was saying is that there are other medications other than Meth that could be looked at and discussed.

Take care xx
reply | back to forum

Date: 27.10.2011
From: Claire

Subject: Re: I don't want my specialist to discharge me.

Thank you Dilizjo. I'm not saying that I haven't got any symptoms. I still have to walk up and down the stairs right foot first and it takes me a while to get going in the morning and unfortunately I always wake up with a stiff neck, but I'm scared to go on Methotrexate for several reasons. (1) I want to have children (2) Because it apparently makes you feel poorly for 3 days, I own my own taxi firm and can't deal with that. (3) My auntie died a few weeks ago and before she died she told me never to go on it! No scientific reason but you do listen to people on their death bed. And, (4) It can permanently damage your lungs if you're unlucky. So it's not that I just don't want to do what they are telling me to do, it's just i'm scared that instead of helping me it could potentially destroy my life instead. I can't make a decision!! But I feel as if I haven't had enough information! x
reply | back to forum

Date: 27.10.2011
From: marlene

Subject: Re: I don't want my specialist to discharge me.

Hi Claire, if you feel like you need more information then if I was you I would lay your cards on the table and tell them how worried you are. Talk to your gp also they usually tell it like it is. Like you if I had that much doubt I also would be apprehensive. Hope you come to a decision soon Take Care X
reply | back to forum

Date: 27.10.2011
From: kirst

Subject: Re: I don't want my specialist to discharge me.

have you tried any other meds or is this the first med you have been offerd to try???

I can totally see where you are comming from in terms of being worried about trying such a toxic drug... no other description for it really because it is.

I think for some people it is compleatly fine for others it just doesnt agree with them. If you were to try it you could be fine on it and really feel its benifits. As for the children thing when you decide to try you will have to stop it for 6 months then you will be safe to try.

personally if you havnt been offerd anything else then i definetly think its wrong that you havnt been given at least a choice between 2 and they are pressurizing you into trying it with the threat of discharge. Pathetic on the rummys part and i feel you have great grounds for a complaint, so do it. taking such serious medication is not somthing anyone should feel forced into.

hope you get it sorted xxx
reply | back to forum

Date: 27.10.2011
From: lynnr

Subject: Re: I don't want my specialist to discharge me.

hi clare i was like you i was given mxt and itg was not a drug i want but having tried 3 before that that either didnt work or the side effect were too much i was taken off i felt i had not much choice but to go onto mxt as the rhumy said i was fortunate to have had 3 kids so that wasnt a prob for me but i had read about it making you ill etc and i did make me a bit out of sorts for couple of days but not as bad as i had expexted so reluctantly i went on it but after 4 weeks was taken off it again i kept getting sore throats and nose bleeds im glad i tried it but i was a very scary time for me im only 35 and with 3 young kids im glad im on to another dmard maybe you could give it a shot might just clear your disease up also you could ask for the dose in an injection as it is supposed to help reduce the sickness, and take folic acid every day except ur mxt day.

hope this helps tcx
reply | back to forum

Date: 27.10.2011
From: bsk

Subject: Re: I don't want my specialist to discharge me.

Sorry Dilizjo, I put that badly. I was just saying that if you decide not to go for conventional treatment, they are not obliged to keep you on as a patient. I'm not saying there aren't other options but they don't see diet as a viable option due to joint damage that can occur unseen.

Sorry Clare if my post sounded harsh, didn't mean it like that. Just that I understand where they are coming from.

You should be able to get an open appointment - which means they don't give you a follow up appointment but you can phone for one if you get into trouble.

I know the the drugs sound dreadful but the permanent damage you can have to your joints without them is fairly catastrophic in itself. I didn't want to take Methotrexate either but after doing my research where I found that diet can ease the symptoms but not stop joint damage, I decide to go for it. Didn't work for me but am now on anti tnfs which do.

We are all between a rock and a hard place with these illnesses and drugs unfortunately.
reply | back to forum

 

Add your comments to this topic
Subject:
Please type your comment here:

Your name:
email:

3+3=
(This sum is to help prevent automatic spamming through this page - thank-you)


top

Site design: T - Creative Home | News | Personal Stories | Links | Message Board