first rheumy appointment this morning

lucy145

hello everyone,hope you are all well

have got my first rheumy appointment this morning at 10.15 and didnt realise until now how nervous and scared i am, been awake half the night thinking about it

please wish me luch everyone x x x

joon51

Morning Lucy, good luck for your appointment let us know how you get on Junexx

dreamdaisy

Well, it might all be over now, bar the shouting! I hope it went well, I hope they were sympathetic and listened to you as they should, and I hope you are feeling better now it's done. DD

frogmorton

Hi Lucy

sorry i missed this this morning I am truly ashamed :oops:

I do hope you were brave ansd said all you wnated to and got some help and feel heard.

Love

Toni xx

Sorry :oops:

skezier

Hi Lucy,

I echo Toni and am sorry i missed this till now.

I really hope it went well and your okish? Cris x

lucy145

thank you i love coming on here and thank you for the support

well it went ok,the rheumy nurse was lovely,i have got psoriatic arthritis and maybe rheumatoid too and am starting sulphasalazine tomorrow,im more scared of the tablets then the arthritis but dont know why,if they dont work then it will be mtx but she said thats the really nasty drug, have got to go for blood tests on monday and have them taken every month

has anyone had bad effects from take sulphasalzine? i know i shouldnt be thinking about that but cant help it,i dont think it has sucken in yet, also he said about getting the carpal tunnel sorted out but he didnt say how.

am glad its over and might be able to sleep tonight,been awake since 2.30am so brain isnt working lol,thank you to all of you again.

lucy x x

frogmorton

Hi Luce

You did well even without our good wishes (me and Cris :oops: ).

I am glad you are getting help well done!

So many have to wait and worry for too long.

Ther are lots of DMARDs out there of which sulpha is one. It along with hydroxy is often a first line drug to try as the side effects are minimal.

Lots of people have tried it - I had the hydroxy to good effect fro a good while - about to add a second DMARD think ciclosporin.

Try bnot to worry about the side effects (think sufa changes your wee coour????), know what they are, but dont WORRY. assume you wont get any (who told me to do that?? )

It will be wonderful if it works.

Love and hugs

Toni xx

marion1952

Hello Lucy

Glad your appointment went OK.

Many people have a good response to sulphazalazine.

I have been on methotrexate for two and a half years and I really like it - so if the sulpha doesn't work don't be scared of trying other things..

Take care and let us know how things go..

Marion x

hileena111

Hi Lucy
Sorry I'm only seeing this now as well....My excuse is I was seeing my Orthopaedic surgeon this morning.
Glad its over with now....sorry cant help with any of the medications...dont know much about them ...I have OA.

Love
Hileena

lucy145

hi everyone thank you for your comments

i couldnt get my tablets yesterday because every pharmacy i went to didnt have them in stock so will get them from work tomorrow and start them then, the rheumy nurse did say about orange urine but if thats all that happens i dont mind that.

one thing ive only really thought about this morning is xrays,he didnt mention anything about having them to look at my joints,is it normal to have xrays done in the early days or is that something that will come later?

lucy x x

wibberley

Hi Lucy,

Good luck with the sulpha - I'm on it and find it works a treat....so far!

I presume you will be building up to 4 tablets a day? You may have a few bad headaches at first while your body gets used to it, especially once you reach 4 a day, but persevere if you can as your body should accept it in the end!

Lois x

lucy145

hi lois,

thank you for the advice, its good to hear that the sulpha is working for you,how long have you been on it? i got to build it weekly by one tablet until im up to 4 daily but the rheumy nurse said if i do get sick or headaches to drop it down again ,how long were you on it before it started working for you? and does it help with the pain at all?

lucy x

dreamdaisy

I have been on sulpha since 2002. It has done very little for the arthritis but it does keep my infrequent psoriasis at bay, until I flare. I am on 6 per day, nearly the top dose and I my wee is the colour of lucozade. It has also given me tinnitus. That doesn't matter, the MP3 takes care of that at night, and general every-day noise overcomes it. I can hear it now, 'cos I'm thinking about it! DD

jenniet

Hello,

I started on sulpha and moved up to 4 tablets a day and then they added mtx. However the sulpha did make a difference and also gave me orange pee! I had no side effects but it wasn't doing the job by itself.
Now onto carpel tunnel syndrome, I was due to have an op. for that the week after I saw the rheummy and he diagnosed RA. He told me to cancel the op. because I could always have it later if I needed it and to see if the carpel tunnel improved after I had started the drugs. That was over 2 years ago and I haven't reapplied for the operation yet! However I know that this is very individual and I might have just been lucky, but maybe it's worth asking your nurse about it. keep smiling!

Jenny.

valval

so sorry have missed this no excuse just silly cold making eyes sore lol . so glad it went well and they getting you sorted good luck with it val

wibberley

Hi Lucy,

I've been on it since January this year. It worked pretty quickly for me - I'm slightly different to you in that I have JIA (diagnosed aged 7, 37 years ago!) and I'm sero-negative RA.

Fingers crossed it's the med for you, but if not there are plenty others.

Lois x

bailey27

Hi
I am on sulpha too. Been on it for about a year and currently on 6 a day. On other tabs but sulpha is the only DMARD i am taking. Got to say it hasnt helped one bit with the joints but has got rid of the Raynauds which I use to get on fingers and toes. I also use to suffer with restless legs but this has stopped since taking them. I am hoping they add / change when i go back next. I was told by someone before thatthe DMARDs dont actually get rid of pain but slow down the disease process. Not sure if I am totally right though. The only thing that works for me at the moment is prednisalone. The only side effects I got was orange wee plus i also felt kind of fuzzy feeling. Nothing too bad but defiantely felt a bit hazey. think this is a common side efffect too as I have read someone else had this.
Good luck with it, hope it wokrs for you.

lucy145

thanks for all your comments,its good to hear all your remarks on the sulpha and feel more positive about taking it now,i dont mind having orange pee if it slows down this disease :roll: i must be thick cos i couldnt remember half of what they said to me but some bits are coming back to me, he said it wont help with the pain but helps slow it down and will help the inflammation and stiffness, so that could help with the pain in theory then couldnt it?

thats really interesting about the carpal tunnel and it will be interesting to see if the sulpha helps it,i never connected the 2 before to be honest,ive also got ulna nerve entrapment which ive had for years so it would be great if it helped that too.

DD how bad is your tinnitis? and would it go if you stopped the sulpha?

lucy x x

dreamdaisy

I have no idea. I assume yes, as it is a drug-induced condition, but it really doesn't bother me that much. I'm not fussed about the wee either - no-one sees it very often, only the nurses at the hospital and they are used to orange wee in rheumatology! Sulpha is designed to slow the progress of arthritis, for some it does get rid of all symptoms initially, that happened to my mate Nigel. When I first began it I suffered from tremendous bruising, but that was the only side effect. The tinnitus kicked in after about three years, I think. I now have tremendous bruising from the steroids. DD

lucy145

yeah i read about bruising on the leaflet the rheumy nurse gave me,it would be great if they do help with the pain,how strange it would be to be painfree,ive already forgotten what its like,to have one full nights sleep would be bliss and not to have to take half hour to get down the stairs in the mornings sounds pretty good too but will just have to see what happens x x

dreamdaisy

I sincerely hope it does something for you. DD

ironic

Hi Lucy,
Good luck with the Sulpha. Bit surprised that your local chemists did not have any in stock though. Hope you are coming to terms with taking them today. I’m sure you will feel the benefit of it soon. We are all different when it comes to meds. Some have results within weeks others take a little longer so don’t give up on them if things take awhile to settle.

Lv, Ix

dorcas

Hi Lucy ,

I am so sorry to have missed your post :!: :oops: but having caught up want to wish you well on starting the Sulpha.

It was one of the early drugs I was on..... and I had no side effects from taking it except for the luminous wee of course!

It didn't work for me... well we are all so different!... but I do hope it will for you and control the PA and help with the Carpel Tunnel Syndrome too.

as others have said... don't worry about what might happen next... just take it one day at a time.

best of luck flower.

iris xxxx

tillytop

Hi Lucy

And welcome from me too! Sorry about your diagnosis - but you have come to the right place for support from others who know what you are going through. You will probably find that you have loads of questions as you gradually try to make sense of things, so just feel free to ask away and we will do our best to help.

Sulpha was the first DMARD I had and it did take me about a month or so (if I remember rightly) to get used to it. I had very bad headaches and nausea to start with but I stuck with it and once my body got used to it I had no probs with it at all and took it for about 12 years I think. It did help me, but wasn't enough on its own so other drugs were added over time and, eventually, I stopped the sulpha cos the rheumatologist thought it probably wasn't doing anything for me any more. It can take a while to work though, so you have to bear with it. Hopefully you also have some anti-inflammatories to take alongside whilst it gets into your system.

Re the carpal tunnel - I had that too, due pressure on the nerves in my wrists caused by inflammation - and once the inflammation was under better control it disappeared and hasn't recurred since.

You ask about x-rays - I had them done at my intial appt because they can be used to see early signs of bony erosions caused by the inflammation in yur joints - but I think I am right in saying that often, early x-rays don't show anything of significance so it may be that you will have some done later on.

Finally, in terms of the DMARDS helping the pain - as the others have said, although they are not painkillers as such, because the pain in early inflammatory arthritis is caused by inflammation, rather than by joint damage, if the inflammation is controlled, the pain will hopefuly decrease.

Thinking of you and really hoping the sulpha gives you some relief.

Love Tillyxxx

lucy145

thanks again for you comments and i will take one day at a time,all this has really hit me today,and knowing its now real and for life

got to go back to hospital tomorrow for more blood tests for rheumatoid arthritis because i tested positive for it and the rheumy said most people with PA test negative and because there is a strong family link too.

im surprised the pharmacies i went to didnt have the sulpha either but i will get it from work tomorrow anyway,so its a case of waiting now to see if it helps,but i do feel more positive about it now thanks to all of you x x

lynnemarie

hi Lucy,

i am on Sulfa, yes they introduce it gradually, it made me feel woozy a bit at first, so had to go back to basics and start again on them, been on them for nearly 3 years now, it took about 6 months for them to get into my system and take any effect, flares are very minimal now!

however it didnt change the pain!, (which i thought it would) went to gp's in tears - had super strong painkillers and anti inflammatories (which i retake when ever i have a flare - or feel the need to) i havent noticed orange wee - or orange tears or any of the side effects the bottle mentions.

you will be monitored constantly and have blood tests every month at first, then it goes to every 3 months, will appointments to see consultant every 6!! - oh the joys- but eventually you might feel nearly normal again yahoo!!

good luck xxx