[pamela b]

Hi
Can anyone help me out with their own experience please ?
I was dx about 5 weeks ago with SLE/ Sjorens and raynards phenoomenae and also have underactive thryoid and hypertension and heart valve problems.
I am now on steroids and anti malaria.
But I think I am in a flare in that I am very dizzy, keep havign severe sickness, running a temp,My joints are so very sore and my knee ( just one oddly ) is so swollen, I have a mouth full of ulcers and my urine still has white cells in after 3 lots of anti bios ( it hasnt been checked unti I asked for 5 years ). I feel rotten but am fighting so hard,
Good news is I am happier if that sounds stupid, out of that horrid dark hole I was in.

But I have no health professional to contact other than my GP who says they know nothing about this. I have an NHS Choose and Book letter to see the rhemy for my follow up and after 2 weeks no appointments are yet available and have been told they will be 3 months away at least. I have no one to ask for advice, help or anything other than you.
Does anyone else in UK have a nurse contact or anything.
My meds run out next week and the GP say they are not happy to continue the steroids. because of osteo probelms and my age and blame the anti malaria for making me sick and to throw them away !
They just say I have a virus and tummy bug at the moment and will be better soon and the rheumy will deal with " the other matter as he is a specialist "
I am begining to think my only option is to pay private to get an answer
They also wanted to put me on a 4 th lot of anti bo for the urine problem but persuaded them to send it off with bloods.

I am almost at the end of my tether as I think there should be some sort of support mechanism somewhere or is this what it is like for everyone ?

Maybe some of you know differently ?
Thanks
Pam

 

[BigSis]

Hi Pamela,
You have my sympathy........there is little worse than being left in that no man's land between waiting for a rheumy appointment and a clueless GP.
Is there no one Dr in the practice that knows about Lupus? Even with a good rheumy I think you will need one.
The hospital has to follow the 18 week rule from refferral to being seen by a consultant but even that is too long sometimes.
I know rheumatology departments vary enormously, but my local dept has a helpline staffed by rheumy specialist nurses which i have used on occasion with good effect. They will give blood forms and advice about medicines and try to speed up appointments if neccessary. They may discuss the best way to take the Plaquinel if it is making you nauseous (personally I would be reluctant to stop it without proper advice.) Ring your department to see whats available to you.
Very best of luck to you

BTW any GP should be able to -pick up a phone/fax/email/write to a consultant for advice about a patient if he is bothered.

 

[Kyphi]

Hi there, I live in the NE and had a similar experience. I was seeing a GP who didnt have a clue and kept telling me I had a viral infection! I ended up being somewhat stroppy (but not rude) and asked to see another GP. I saw another who was a little better but then I gt onto the GP whos looking after me now and who finally got things moving. Though he admitted he didnt have a clue about lupus he has found out more and now has better understanding. I too considered a private appointment; however private rheumatologists are very thin on the ground up here, so I stuck it out and now see an excellent one. (only seen him once, next appt in 2 weeks but he told me to call his secretary if things went 'awry').
I agree with the previous post in that Id be reluctant to stop Plaq; the rheumatologist will know better. Theres a horrible tummy bug up here (my daughter has been off school for 3 days with it).
My advise is to push the GP, push and push. Its easily said 'stick it out till you see the consultant' but I honestly dont think they know how rotten this disease makes you feel. As for the dizzyness youre experiencing, well thats me too. When I see the rheumy in 2 weeks I want him to investigate it as it frightens me and makes me anxious then I feel worse!!!
Good luck, my thoughts are with you

 

[pamela b]

Hi
The 18 week rule does not apply as I went private. It is the same guy who does private and NHS and he is good.
I know it is not meds making me sick as last year I was sick ( with a tummy bug ) for 6 weeks . I think fro me this is part of a flare up.
I am so dizzy I cant stand for more than a few minutes. This had stopped within 4 days of starting meds but is back with a vengeence.
So here I am with a GP who I think is in denial totally about my condition and know where else to go to.
I am on the point of calling the private hospital to make that appointment but cant really afford it. BUt I sort of think I maybe need more steroid but certainly cant just stop them like that when they run out.
Oh what a mess this all is and we are supposed to have an NHS.
Hopeless and frustrated and worried ( but not as much as my other half is )
Pam

 

[Kyphi]

If I were you, (and I have been there) go to A&E! Youre not well and deserve to be seen. It was after I collapsed in my GPs waiting room that things started moving. Rediculous isnt it!
Im new to all of this so Im not sure if my advise is any good but thats what I'd do. XX

 

[Lily]

Hi pamela,

In your shoes I would try another GP and if that failed I would go to the ER as drastic as that sounds. Once you are there and your problems witnessed they would probably contact the Rheumy anyway or you would see another Rheumy who is hospital based.

I really think that GP of yours is irresponsible (what I really wanted to type would get me banned :wink2. As mentioned even if they know nothing or aren't sure the option is always there to ring the Rheumy. Mind you a lot of them won't do that their ego gets in the way I would be quick to tell your Rheumy about their attitude btw! The notion of "throwing away the Plaquenil" and not being happy about the Pred is ludicrous unless they have any better suggestions, which it's obvious they never have!

Are you taking calcium and Vit D? What dosage of Pred are you/have you been on?

Just wondering what antibio you were on for the suspected infection? Some of them make my Lupus worse, they can cause a flare. Anything sulphur based like Bactrim is notorious for it. Of course if you truly have a UTI then sometimes there is little choice.

(((((pamela)))))) sending strengthening hugs.

love
Lily

 

[pamela b]

Thanks Lilly
I am only 20mg pred at the moment which shuld have reduced but was told not to last week so will run out this week !
I ahve been on a drug for urine starting with an n and a long name which was a bright yellow slow release capsule, if that means anything, threw the box when they finished
Tomorrow it will be out of hours so if no better tomorrow will go there and see what happens. the pleurisy is also a nightmare again and wakes me if the toilet problem doesnt ! So not much sleep for me and so so tired could cry.
Dont know why they dont just scrap the nhs and send us all privte, it would be better then we knew where we stood.
My problem is that I dont think they will accept the dx and so are just ignoring it and going on the 3 years of virus that they always have.
Oh yeh, off to bed for a while
thanks for your support
Pam

 

[pamela b]

The very end of the line !

Hi

Just to let you know that I went to the chemist who dispensed the drugs for my urine infections an he tells quite plainly they are a very strong suphar based drug. I ahve had a 5 day and a 10 day course. No wonder I feel so bad. have rung the docs and said should I have had those in view of the dx of LUpus and the response was " But you needed treatemnt for it and you know you have a virus "
Have been very brave and spoken to rhemy private sec who rang me back and he says I need to up the pred by 50% for one week and then try and start to reduce them again but if I get symptoms go back up again and to ring again if any problems.

I am just totally speechless and this really is the time that first thing next week I need a new doc and the rheumy is a really good bloke.
Dont think anyone would argue with me
Pam

 

[Katharine]

Yes, Pamela, I would agree, you definitely need a new GP

Sometimes we just let it slip thinking that it won't matter too much but your experience is a good example of how important a good supportive GP is.

Have you tried talking to the practice manager and asking to see another GP? If you could, I would then "interview" that GP to see where he/she stands and to see if you can work together.

Failing that, it's going to have to be another practice but whatever happens you can't be left high and dry without help and treatment when needed. I'm presuming that you won't even have enough pred left to up it as the rheumy has said?

hugs :hug:
Katharine

 

[greenhaggis]

Pam,

I agree, change your GP either at same practice or change practice!

If you have not got enough pred to up the amount and get you through the next few weeks then put a call into Rhuemi's secretary and explain that you can't get a new prescription via the GP. Either the Rhuemi/secretary can phone GP and get one issued or they can get one done for you to collect or get sent in post!

 

[Lily]

((((((((pamela))))))))))) I agree with Lesley, if they won't prescribe the Pred after you explain you have rung the Rheumy then contact the Rheumy secretary and explain. They will give you a script for it and no doubt tear strips off this silly GP :hug:

Actually I've never heard of a GP acting that badly - here a GP has to do what a specialist says or they get in big trouble There's a pecking order and a GP obviously is way down the ladder - after all they haven't had the training or the experience to argue with someone who knows better i.e your Rheumy!

love
Lily

 

[Sage Hen]

Dear Pamela,

I just hope your feeling better. I read all posts, and feel very badly for your suffering.

Please post and let us know how your getting along? I will be thinking of you,
and hoping for the best.

Love,
Sandy

 

[pamela b]

Hi
Not been on line for a day or two but will ensure I get my meds one way or another
Am going to pay to seee the rhemy again int he next few weeks I think and will look to another GP practice
Thanks guys
Pam

 

[greenhaggis]

Have you asked your Rhuemi to tranfer you to NHS...I would if i was you! Much cheaper to get a private prescription for meds and wait for a NHS appt if you can than paying for private consultation and private prescirption.. perhaps your Rhuemi can issue a NHS prescription for meds even though he treated you as a private patient on basis that you are being transferred!

 

[pamela b]

Hi
I have been transferred to NHs but they you choose and book and |" There are no appointents available " and have been told they wil be 3 months plus when they do come through.

I will get them dont worry and thanks
Pam

 

[greenhaggis]

Pamela,

Once you have got the 'choose and book' appointment date and time then phone the Rhuematologists secretary and tell them you have been seen privately and now NHS, but need urgent appt. much sooner than one given by appointment department! Most secretaries can over ride appointments and add extra patients as and when..they just need to know your urgent reasons!