stopping medication/How long to leave your system?

[LULU85]

Hi everyone

I have had another frustrating conversation with my rhuemy nurse. Basically none of my bloods show any inflammation, I have had a positive ana on 2 occasions tested 3 months apart but were different patterns and then another ana test done which was negative. My symptoms are

Joint pain (which has gone since starting azathripoprine and plaquinel)

Fatigue

Skin rashes

Mouth Ulcers (which went when started medication and has just returned after 1year)

Muscle pain and spasms

migraines

Chest pain

to name a few.

I have had numerous doctors tel me its a lupus like condition that im suffering with. Then at my last appointment a different doctor looked at my notes and the doctor and nurse said its not lupus or rhuematology problem.

Im still suffering and waiting for my appointment (should have been seen in may) spoke to the rhumey nurse who said she has told the gp not to keep sending me to rhumey department as she doesnt feel it is that problem,

Im now left in a position where im taking medication and now unsure if I should as they seem to think its not a rhumey problem and I dont want to be taking medication just for the sake...if that makes sense.

I have decided to stop taking the medication to prove to them I need it as no doubt the joint pain will return.

I know that this is not an ideal thing to do but I am desperate as if im knocked off the books at the rhuemy department where do I go?

I would like to know how long does it take for the drugs to get out of your system?

At the moment my mouth has broken out in loads of huge uclers which are REALLY painful so im guessing the plaquinel isnt working any longer?

Sorry for the long ramble im feeling very alone with this. I had a similar problem in my teens where I had lots of vague symptoms and doctors would fob be off that it was nothing and in the end it turned out to be graves disease which I ended up needing a thyroidectomy to treat. I can really see history repeating itself here.

Thanks

xxx

[Tigerlily4]

Sounds a pretty ridiculous decision to me Lulu and more like the drugs are keeping your symptoms under control! And since when have nurses been placed in a position to make decisions of this gravity???!!! I'd definitely question this via your GP pronto before doing anything!

[LULU85]

Im in a lose lose situation I go to the GP and they say speak to the Rhumey team. I ring the helpline get this nurse who doesnt think its a rhumy problem and politely tells me to go away basically.

How do I prove I need this medication? How do I get them to see the the bigger picture? I know my bloods are normal but something is defiantly going on im not crazy and I know I cant be the only person like this.

arrghh so so so frustrating

sorry rant over xxx

[Tigerlily4 in reply to LULU85]

I get the same reaction from my GP (ie: "what does your Rheumatologist say") but in this case you're dealing with a nurse and, like Lupysue, I think your GP should be making enquiries of the clinic. Don't worry about ranting ... we all need to from time to time. Good luck with this!

[luupysue]

I went to see my rhumy yesterday and he has done the same to me Told me to stop all meds which he has been treating me with for the past 4 years, as he has decided its not lupus after all, I asked him if that were the case has the sicca, raynauds , thyroid and everything else also disappeard, and why when I stopped last year did I take ill within 3weeks and he insist I started the meds again.

Why was my mouth yellow at the moment and why do I swell up every day, why were all the other symptoms still as real as ever

He didn't answer.

Today I took myself to the GP who told me not to stop taking the tablets until she has had the letter explaining his reason. She said nothing surprised her at the moment with that department as they are desperate to employ rhumy drs rather urgently.

So I am taking her advice.

Good luck. Do you by any chance live in northumberland.???

[Hidden]

Sounds like you should contact PALS too. The other thing to do is take in to your gp some lupus literature from lupus UK and highlight your symptoms which should prove at least that a rheumy should be treating you. Remember gps aren't specialists and a nurse is NOT a doctor. I wish you the strength to fight for yourself xx

[Cann]

My GP in 2001 told me that it takes only a few weeks/3 months for drugs to leave the system, but I went to a very trusted kinesiologist who knew nothing of my past drugs and said that I still had tetracycline in my system, asking me when I had it last.

I said - 1994, so doctors really don't know - we are all different and take different amounts of time to clear out the drugs depending on how strong our liver, kidneys and bodies are.

[LULU85]

hi everyone thanks for the replies

Went for some bloods done at the rhuemy and another nurse saw me and luckily could see I didnt look well and said I needed an urgent appointment. I explained all the fuss I was having and been told one thing then another etc etc and left department. Then got a phone call to say they are going to discuss with doctors what I need etc....just hope they do...then send me an appointment.

In the meantime I have spoken to my GP who has read to me the letters sent to him and there is no mention in them of what the nurse has said that she has supposedly put! He has said he will write and complain about whats going on once they ring me with update from this meeting...fingers crossed I get somewhere now as this is a ridiculous carry on.

luupysue- Hi hun no im not in northumberland but it sounds like we are having a similar carry on. My mouth has erupted in loads of mouth ulcers they look like blisters 1/2 inch big. Got them all over the side of my tongue and on my throat. My GP has said its not an infection. All things I have tried dont seem to work and eating and talking is painful. Im waking in the night with the pain which is then having a knock on effect of how im feeling.

It frightens me how under supported you can be by the rhuematology department. There seems to be doctors how will bend over backwards to help then others which can barely give you the time of day.

xxx

[Hidden]

Keep at them...after years of being treated like a hypochondriac,numerous bouts of really bad illness and loads of hospitalizations.....I've just been diagnosed...after 30 years with same surgery ,I relocated. First time I was taken to hospital here and kept for 10 days in rheumatic ward got the diagnosis and rheumatic team were on the case...I am so relieved that I know what's wrong and we can work together to get me better!Been off work since Nov but going back June....Rheumatic team at Victoria Hospital in Fife. ..Thank You!