Had to come off Sulfasalazine really fedup

jilly · 4. Apr 2011, 05:34

I have had to come off the sulfa,over the weekend I started with a rash all over my legs body and my lips have swelled and got a sore throat in the night ,I have had a bad headache to .
I rang the rhumey nurse this morning to ask advise . I didnt get to talk to anyone but the receptionist told me to come off , So I am left waiting 5 weeks not knowing what is going on, will I be able to go back on or will that be it .
I know how busy they are but they could just have a word with you, I am due to have blood tests tomorrow is there any point now ?
I feel feedup because i thought i was on the road to feeling better , now I will have to start all over again .
This must happen a lot because it says on the leaflet it can , if it has happened to anyone please can you advise me what will happen now . I am really fedup. ................jillyx

dreamdaisy · 4. Apr 2011, 05:44

Fistly, go ahead and have the blood test done, that is important. Secondly, a receptionist should NOT be telling you what to do with reference to taking meds, that is wrong on so many levels. You need to get back in touch and ask someone on the nursing staff to ring you back or talk to you - do you have a rheumatology helpline you could call? Failing that, perhaps your GP would be able to help but I am not sure about that - they don't know much about the stuff we take, they prefer to leave it to the hospital, but as sulph is used for other conditions too you never know, your doctor may have some knowledge. DD

jilly · 4. Apr 2011, 06:05

Thanks DD, I thought it was not good to be given advise from her she didnt sound that sure about anything and didnt want to listen to my questions , I will go tomorrow for the bloods and have a go at speaking to someone as i am at the hospital to get them done. Thanks again I have calmed down now , I understand i had to come off but a bit of advise would have been nice...............jillyx

dreamdaisy · 4. Apr 2011, 07:19

I think it's a good idea to pop into your rheumatology department as you are going to be there anyway: just sit and wait until someone sees you. Receptionists may think they know what to say having overheard numerous conversations between staff and patients but they are not the experts in the field - mind you, I wonder occasionally about those who are supposed to be! Don't get too down-hearted yet: I remember starting sulph and thinking 'This is it! Problem sorted!' I soon learned that lesson. DD

suzygirl · 4. Apr 2011, 09:23

Jilly, sorry to hear you had to stop the sulfa. I agree that speaking to a receptionist is not enough, you need to speak to the rheumy nurse. Call back and ask for one of them to call you.

When I was started on sulfa I was warned that this is only the start and not the end. I think one of the hardest things is to find a med that suits and works for you. This one is obvioulsy not suited for you, but another is waiting and may just the 'one' for you.

I wish you well and hope the rheumy nurse gets back to you soon!!

constable · 4. Apr 2011, 11:15

Hi Jilly

I am sorry that you had to stop your meds and I am glad you are still going for your bloods.

I do hope that they get you sorted out very quickly. Sending you hugs and hope you feel better after tomorrow.

Karen xx

julie47 · 4. Apr 2011, 11:55

Hi jilly

Yes, when you go for your bloods doing , just ask to see someone about your sulpha......
I can not get over the receptionist telling you to stop.

I hope you come away tomorrow with some good advice.

Take care
Juliepf x

tillytop · 4. Apr 2011, 12:13

Hi Jilly

Like the others, I think it is of concern that you were told by the receptionist to stop the sulpha and I do think you need some advice from someone properly qualified, and sooner rather than later. 5 weeks seems too long to me to wait to know what will happen next. In terms of other options, please don't despair. I can't remember but I think it's RA you have (apologies if I am wrong) and there are other meds out there for you to try.

And I think you should definitely go for your bloods as planned.

Hopefully you will feel better about all this once you have talked to the rheumatology dept.

Thinking of you.

Love Tilly xxx

dreamdaisy · 5. Apr 2011, 08:08

Hi jilly, how are things today? Have you had your bloods done and were you able to talk to someone? DD

jilly · 5. Apr 2011, 08:28

Hi DD , just got back from the hospital , I insisted on seeing a rhumey nurse . She said I have to come off as it is allergy , I cant go on any thing else until it as cleared up altogether. She said it would take a few weeks to get over it . I was told to buy anti-istomeans . I have to still have my blood done .
So looks like i will have to wait for 5 weeks and see what happens then.
Thanks for your help . When I got there nobody knew I had rung so the receptionist didnt write anything down.

I do hope I get it sorted ,I am so fedup of feeling horrible , I know it wont end there when i get more meds but i might feel less pain .
Thanks again ................jillyx

jilly · 5. Apr 2011, 08:31

Hi to you all , Thanks for all your help and advise , I have sorted it now and hoping they put me on something else in 5 weeks . ..............jilly xx

julie47 · 5. Apr 2011, 09:45

Hi jilly

Glad you saw the nurse but sorry you definately had to stop the meds.

Five weeks is along time without your meds but be strong and keep your chin up.
I am sending positive vibes to help you through the weeks ~~~~~~~~~

Take care
juliepf x

magenta · 5. Apr 2011, 09:51

Hi Jilly,
Sorry I missed this post. That's a shame that you've had to come off the Sulf. If you're like me (and others too), that when you're put on a new drug, you think it'll be the one and help with all your pains. Hope your rash disappears quickly and you get prescribed something else that'll work for you-I'll keep my fingers crossed,
Take care,
love Eileen xxxx

dreamdaisy · 5. Apr 2011, 09:58

The anti-histamine should work pretty quickly, and the sulph should not take too long to get out of your system, you were not on it for that long and hadn't take that much. I know how annoying these setbacks are, but the time will pass, the next drug will come along and let's hope that proves to be the one for you. It can take some time to hit upon the right drug, or combination of drugs - I hope you find your answer sooner rather than later. DD

ironic · 5. Apr 2011, 10:14

Hi Jilly,
Aw that is a bitter blow for you. I do hope it gets out of your system soon. It was a good job you went to get it sorted out quickly.
Lv, Ix

suzygirl · 5. Apr 2011, 10:16

Hi, glad you managed to get to see the rheumy nurse, I hope you told her how unprofessional the receptionist was!!

Could you ask your gp for some pain relief in the meantime?? 5 weeks is a long time to wait, I hope it passes quickly for you.

barbara12 · 5. Apr 2011, 10:42

Hi Jilly
Sorry I am late, and sorry you had to come off the meds...its not fair is it...but you did the right thing getting advice...but like the others have said..shouldnt have been off the receptionist...wishing you good luck with everything.
Love
Barbara xx

constable · 5. Apr 2011, 10:49

Hi Jilly,

I'm sorry that you are off the meds, but at least you know that you will get something else in due course. Am sending you hugs, and hope you get things sorted out quickly.

Karen xx

Had to come off Sulfasalazine really fedup

Comments

Categories