sulfasalazine help required dont know where to turn

purplestorm

Hi all

If anyone has read my previous posts you will be aware that im having major problems with my GP and consultant and the hospital.

To cut a long story short I am currently taking sulf 2 a day to be increased to 4 per day over a period of time. However, when I was given this drug the consultant was quite serious I was to have regular blood tests and monitoring which seems to be the norm.

I have been on the tablets now for two weeks, and havent had any contact regarding the blood tests so I phoned hospital and they have advised me that the nurse (yes there is only one in two hospitals apparently!!!) is on holiday until 4th April and I will have to phone back then to arrange for an appointment for a blood test (and we all know how long that takes) so that will take me up to at least a month before I have my first blood test or monitored on this drug is this ok??????????????

Secondly I havent seen much change in urine however I am having rather bad stomach ache, very light headed, diarrhoea (only last night) and a strange taste in my mouth is this normal does anyone know???????
I am on celebrex and steriods as well so not sure if the above is from the sulf however has only started since taking it.

I have tried to get an appointment to see my GP for some advise and have been told that as its not an emergency the earliest I can get is 8th April.

Sorry if this post is a negative I just seem to be very ratty at the moment and I have been awake all night in agony Ive grown an extra half a hip over night with the swelling with the morphine not touching the pain.


I would really appreciate any advise anyone has


thanks xxx

keith1971

Hi there,

Definitely sounds like the NHS has let you down quite badly. Does your GP practice not do blood tests at all?

I'm in the same boat with the Sulfa - today I'm upping the dose to 3 a day (just took tab no.2!) - I have a blood test on April 15th & seeing the rheumatologist again on April 20th -- you definitely need to be checked once a month at the start, so push your GP for an appointment & some blood tests.

Side effects wise, I'm beginning to have luminous pee, not every time I go though, which is nice. I had mild nausea for a while but it seems to have passed & I got bad headaches when I upped the dose to two a day but they settled down.

Hope things work out.

x

purplestorm

Hi
consultant said every two weeks to begin with. It was his secretary who i spoke to this morning who advised me on phoning back 4th April. The consultant said that the blood tests would needed to be done at hospital to begin with and that we would discuss the future at my next appointment (11th April)

My GP wont dont do the blood tests as they have been requested by the consultant and now im technically under his care GP wont get involved unless the consultant says otherwise.

It seems that this illness is more hard work than I first thought!

dreamdaisy

I know every area is different but where I am (Suffolk) one can pitch up at the pathology lab at the local hospital at any time (as long as you have your blood forms) and they will take the blood, run the test, and pass the results to the consultant/GP.

You have only just begun the sulph so it is very early days as yet for either side effects or bloods. I had horrendous bruising when I began it and tinnitus now (but I have been on it for years). You could have picked up a bug (there are loads about at the moment). Consultants do live in cloud-cuckoo land when it comes to booking further appointments/knowing about blood tests/prescriptions etc, so it's good you have found that out now. April 4th is the week after next, so not that far away, ring back then and see what's what. When you do get your forms ask for some extra ones so that you have some in stock - I have two spare sets and one in the car so I can drop in if I feel like it. I rarely do however - the thrill of these things has long worn off. If you feel really unsure then contact the rheuamtology department and see what they can do. If yours is anything like mine don't try this afternoon: mine has closed. Hospital slang by other specialisms for our lot? Rheumaholiday. Don't fret too much, you are doing OK. DD

keith1971

"Rheumaholiday"

Nice!

x

frogmorton

I started an extra medication 5 months ago colchicine in addition to the hydroxy and supposed to have regualr bloods done....had none so far :shock:

'spect the rhuematologist will collar me at my appt monday :???:

I hope you get yours soon

love

toni xx

suzygirl

Hi, I am on my 5th week of sulfa. The rheumy nurse gave me blood forms in advance to be done at 2 weeks, and then after a month. She also offered to give me spare in case I needed them.

Surely the rheumy sec could get someone to write you a blood form and then it could be posted out to you?? Hospitals do seem to vary in the way they organise things.

Would your gp not be willing to do some bloods just to put your mind at rest???? You wouldn't need an appt for that, you could just ask for a blood form to be left in reception.

I know it is a nuisance, but it would give you peace of mind.

katknapp

Hi im on 6 sulfa a day,i waited for an appointment for bloodtests in the end i went to my doctors and the told the nurse what i needed it for and she does them now,i get a copy of the results and keep them to show the consultant,i have funny coloured wee lol bright orange !!! and as for the slight upset tummyi got that but i found if i eat and wait 10 minutes then take them its finexxx

purplestorm

Well another twist in the very complicated world of Arthur!

Eventually got to see my GP after being 3 n half weeks into sulf and he wouldnt entertain carrying out the blood tests and advised "the hospital have a duty of care" and to contact them again. Which I have done and they are now advising to wait until i see the consultant mid April to discuss. Im starting to get the feeling no one wants my blood!

Found a huge lump behind my ear since started taking sulf and because I was refused an appointment to see my GP (im feeling very unloved ) a GP phoned and when I explained I had this lump which has only appeared since taking sulf he told me it must be a coincidence and not to worry about it didnt even check it out.

When I eventually got into see my GP he said the lump was related to my lymph gland, and that my blood pressure is now through the roof with ESR readings of 109 and CRP readings of 87.

Seem to be having worse prolonged flare ups, when they first started it was every night for a few hours but the latest flare up lasted 2 n half days of which resulted in no sleep, unable to walk and pain which i have never experienced before.
Had my morphine increased to 10mg every 12 hours slow release with 5ml of oramorph every 4 hours however it doesnt seem to be even taking the edge off.

XXX

donnas

Oh purple, you're going through the wars. Sounds like you're stuck in a battle of wills between the consultant and your GP. You NEED your blood tests. I hope you get them soon. Can you kick up a stink? Or get someone to do this with you? MPs cone in handy for this as a last resort. Duty of care is with your GP as he manages your general case as far as I am aware!

I know the health service is different here in Scotland (free prescriptions from tomorrow!), but I need to get my blood tests through my nurse practitioner at the GP practice. There's a "treatment room" at the health centre but as soon as they see the word sulfasalazine (or similar) the politics kick into action and they won't touch me with a barge pole. Thankfully the nurses within my practice are all lovely and will squeeze me in if there has been some misunderstanding, but I'm learning to play the system.

Thinking of you and hoping you have some pain relief soon.

Poppyg1rl

Oh Purplestorm,
You poor thing! You've been treated appallingly. I'm on Sulfa, meth, Humira etc, and have always been on 2 weekly blood tests, last November I had a bad case of pleurisy, afterwards my White blood count plummeted, I then had an emergency rheumatology appointment who decided to take me off everything so that things could settle down and my blood count stabilise.
I went back onto the meds slowly building the Sulfa up, and can honestly say ive been fine since.
Do you have a rheumatology nurse? can you ring rheumatology and ask? I think it's appalling behaviour by your GP too. Keep ringing them until you get a blood form.
Thinking of you, hugs x

tillytop

Oh Purplestorm you really are having a bad time aren't you?

I think your GP has behaved appallingly and seems to have quite forgotten that he too has a "duty of care". I firmly believe that the GP should be following up with the hospital, rather than leaving you to be batted back and forth like a ping-pong ball. And the sulpha bloods are really not anything special or complicated, so as far as I can see it is only like any other blood test. That said, I have a pretty useless GP and have been there so I do understand.

Sorry, will get off my hobby-horse now and try to be practical. From what you have said, things are really not under control, your inflammatory markers are high and even the morphine isn't helping. On that basis alone, I feel that you really do need to be seen again at the rheumatology clinic, sooner rather than later and I wonder if phoning the consultant's secretary and explaining your situation would help you to get seen. I know from experience how hard it is to fight the system when you are so poorly and don't feel that anyone is listening to you but if you can get an earlier appointment, hopfefully you will get the help you need.

Thinking of you.

Love Tilly xxx