[Surferboy]

I've had my severe flare for almost a week now. Can hardly move my arms or legs, and am in pain even when sitting still I'm now even getting pain in my throat when I breathe in

How long is an average flare for you guys? Or is that like asking how long is a piece of string?

I've been taking paracetemol every 4 hours for the last 4 days and that doesn't seem to be doing any good at all. Unfortunately I have not been prescribed Plaquenil or the likes as Im newly diagnosed.

 

[Lily]

Yep it's like saying how long is a piece of string, it varies anywhere from a few hours to years - how's that for a wide range

Hang in there for that appt!

love
Lily

 

[Surferboy]

Thanks Lily

 

[karen.w.]

Hi surferboy

A big warm welcome to the forum!..I'm sorry you're having a flare at the moment, can you take any stronger painkillers to help?..I would suggest you see your doctor or rheumy if you have one as you may need something extra like a course of steroids if you're flare doesn't settle down..when you do start plaquenil unfortunately it can take anything up to 9 months to feel any benefits from it. so you may need something temporary to help.

a flare up can be very variable depending on the person and how the lupus affects them. I have had flare ups lasting a couple of days and other times lasting for several months to a year..sorry to sound negative

I hope you feel better soon, keep us updated.
take care,karen x

 

[Surferboy]

Hi Karen, I'm seeing my GP today. But he's not much use as he's relying entirely on my rhumy to decide next course of action. My rhumy has booked me in in 3 months time!!!

And I did try Ibuprofen, but these didnt help either

 

[karen.w.]

Hi again
good luck with your gp today, sounds like you may need it!
If your flare doesn't settle down you could try contacting your rheumy direct and ask for an emergency appointment? I have done this in the past as well as having to go to A&E, especially when I was first diagnosed...

but fingers crossed the flare will settle down on it's own! :fingers:
take care :hug:

 

[Surferboy]

Thanks Karen. Alas, I was in A&E on Sunday. To say they didn't give two hoots is understatement of the year They just said "OK. So you have Lupus, but we can\t do anything for your flare. Good bye".

Sorry for sounding so negative. But since being diagnosed my experiences have not been at all good

 

[karen.w.]

Oh dear! that's very frustrating! I hope things get better for you!

my experience has been a bit up and down too. I have had lupus for 15 years but was actually wrongly diagnosed with rheumatoid arthritis instead for up until nearly 2 years ago when after a lot of debating they finally diagnosed lupus...but thankfully everything has been a bit easier since, especially once I was established on my meds.
oops sorry to ramble on.
best of luck to you, bye for now x

 

[Katharine]

Hiya,

Like everyone said, it is so variable. I think that the very severe symptoms should taper off but it sounds like you urgently need to see a rheumy and change GP.

Any GP can prescribe a short burst of prednisolone and any GP should be getting you started on plaquenil.

I know the system is different over here but I'm used to the Irish system which is not disimilar and I also don't ever remember Mum having such problems with NHS GPs when we lived in England.

Katharine

 

[Surferboy]

Well, another wasted trip to the GP

He prescribed me Co-Codamol (500mg), 2 to be taken 3 times a day.

My only worry is that it does say on the leaflet that people with kidney or liver disease should not take them! Should I be worried about taking these?

Also, my cholestrol results came back as 3 - which is low I believe?

 

[Katharine]

If you read the side effects on almost any med it will say that it is not to be taken in cases of kidney or liver disease. Many of us do have to take those meds at times and unless you have known involvement of either I wouldn't worry about it at all.

Having said that, I'd be looking for another GP

Katharine

 

[sjink]

HI
You can be happy with that cholesterol result. 3 is fine.

Co Codamol are a good start and much stronger than paracetamol. So not really a wasted trip. I took them for a while. I now take paracetamol and codeine separately and they really help with the pain. Don't worry about the liver/kidney stuff, like Katharine says. I have been on similar drugs and much "heavier" medication than co-codamol since 2000 and liver function tests are all fine.

You sound very frustrated, it is a frustrating illness. Flares are very individual things and during them, I hate to say it, you are going to feel ill. No doctor I have ever seen has been able to say "Here you are take this and you will be better" - the drugs all help a bit, hinder a bit and I am still ill.

I am in a flare now and feel absolutely *@%!! I have a slight fever, am aching all over blah blah blah. I am awaiting for my rheumy to get back off holiday and will probably start steroids. But I also know I just have to accept I am unwell, not fight it, get lots of rest, good food, remove stress and be patient. I inevitably have got better again after a while, but that while can be one week or 3 months I never know.

There is sadly no cure for lupus, which means they can treat the symptoms but cannot remove the illness. Also, GP's are not lupus experts, they have to know about hundreds of different autoimmune illnesses a little rather than one or two in depth. You probably need more attention at the moment, just after diagnosis I remember the feeling. I come to this list when I feel like that as the people here know far more collectively about lupus than do all the staff at my GP surgery.

My GP is a new one as we moved and admits he does not know much about lupus so he always checks with rheumatology before changing my medication, a sensible precaution really. I would rather have that than a GP that wrote prescriptions willy nilly.

If you have joint pain you could maybe ask the GP if you can try a NSAID that is stronger than ibuprofen. This you can take as well as the cocodamol and it will ease, but not in my experience remove, the pain caused by inflammation.

Can't think of much more to say really, am so sorry you feel so rough and wish I could wave a magic wand for all the lupies everywhere.

Love
Sara

 

[Surferboy]

Hi Sjink, yup right now I am extremely frustrated. Worried. Confused. Peed off. Sorry for my wife and mum. And incredibly concerned for the future as 2 weeks ago I handed in what can only be seen as an early severance from my contract at work as I had other business plans

Alas, now I'm worried as I don't know if I've done the right thing. Is running a business possible with SLE???

I'm also currently on sick leave. I thought I'd be better by tomorrow so told work I'd be in. But that most defo aint gonna be happening

How on earth do you get to see your rhumy so easily? Are you on private health care?

I agree fully what you say about GP's needing to know about so many illnesses. I just feel that he's not doing much at all for me in recommendations, referrals etc.

 

[greenhaggis]

Surferboy,
Just take the plunge and call the hosprial and ask to speak to Rhuemies secretary - you may well have to leave a message (including hospital no.), but then do that - remember its your health!!!!

It may also take them afew days to call back and then more for Specialist feedback, but they should answer your queries or give you an urgent appointment date - its only those that dont ask that DONT get seen sooner!

Lesley

 

[Surferboy]

Hi Lesley, I went one better than to call the secretary. As I was at the hospital anyway I popped in to see her and explained just how bad I was feeling etc. The gist of her response to this was "the only thing we can do is send you your appt for when we have a gap......" Thats why I asked my GP if he could speed things up. He said he couldn't!!

But I might try calling again tomorrow. Hopefully she's feeling a little more sympathetic........

 

[nicolarowles]

Hi,

You will be okay taking co-codemol tablets evry four hours, they have to build up in yr system to have any effect for pain relief... it is very frustrating when the medical profession drag their feet..I was like you 5 years ago, lost of different joints pains...doc said trapped nerve refused to send me for tests, my hubby took me to A&E who suggested a rheumatoid test, the doc did the test and referred me to a specialist and the wait was 4 months!!!! Luckily we had private health care so I got an apointment within a few weeks. the specialsts put me on steroids prednisolone and plaquenil. I then got the GP to refer me to another specialsts on the NHS who is great and I now take methotrate and plaquenil (no steroids)...two years ago he diagnosed Lupus.

Can you go to a different GP?

I hope you get sorted out some.

Once you get the med right you should be able to lead a normal life... don't worry if you can try and get a first appointment privately and then request a NHS appointment like I did it cuts out the wait depending on where you live?


Nicola

 

[greenhaggis]

Surferboy,

Just to let you knowe my GP does manage tospeed things up 'on the NHS' and speaks to consultant herself regarding me and treatment! The GP can do what they want, just make sure its what you want and need ad be aware that they can talk to speciallist on your behalf about future treatment!

I was diagnosed and phoned by my Immunologist and told to go to the hospital to pick up meds - Plaquenil and pred! If my NHS care can do this then so can yours!
Fight for your health!!

Lesley


Lesley

 

[sjink]

Hi again

I gave up work because I could not cope with it... foggy brain, I was doing research at a university and could not keep up the very hectic pace. I now work part-time from home ( a very small business) with severely reduced income and very supportive but skint partner. Love does conquer all and family will get as used as you will to managing all this, it just takes a while to adjust.

I was in my mid 40's and had been ill off and on all my life and worked full time until then. You are a lot younger and your lupus may be quite different to mine so it is not a good idea to draw a comparison here and say "Oh my goodness, that's me broke" because it probably won't be. I probably could work more than I do but I choose less money and better quality of life, like semi-retirement. We moved from a house to a smaller flat recently so that I could have an easier life and work less hours.

My recommendation is go with the sick leave, don't worry about work for the next couple of weeks and get rested and used to this illness.

My first rheumy was pretty unskilled, I phoned lupus UK, spoke to their local contact person and got a recommendation. I went to the GP and asked her to refer me to this doc which she did. I was very lucky with my GP and found her very supportive. The new rheumy is brilliant and the clinic he works from has won an award from Lupus UK. I am lucky in that I now only live a mile or so from the clinic. They have a lupus nurse there that you can talk to who will answer loads of the problems without you needing to see rheumy regularly. So ideally you need to find a lupus rheumy at a hospital with a lupus nurse. There are only around 15 lupus nurses in the country.

I have a new doc who is not so lupus aware, as I said in another post, so having the lupus nurse to phone is brilliant. I spoke to her today and she is going to speak to the rheumy and get back to me about a change of medication.

Communicating with medics is a skill, and not an easy one. One trick is to only go in to discuss one issue. I usually say to my GP "I am feeling lousy but my main concern is such and such", and then we sort out the such and such and leave the rest of the stuff for another visit. So he can treat me for everyday stuff, flu, flu jabs, bruised shins, sore throats but for anything lupus he prefers it goes via the rheumy. You have to learn to use the system and that takes a bit of experience and practice. I have friends in the NHS and they work incredibly long hours and put up with a lot of abuse and very little in the way of thank you from patients and I am one of those people that think the NHS is mostly very good. I would hate to have to pay for my treatment, in fact I would not be able to. I would also probably be dead without (I had severe peritonitus and jaundice in my teens) and my partner would be without the use of his arm. There are some unskilled and unpracticed people but you can work your way around them. And one way to do it...

I think while you are off work join Lupus UK http://www.lupusuk.com/
and get the name and phone number of a local Contact person, there are Contacts for most UK areas and have a chat with him/her.

I see the Rheumy regularly but the gap is always at least 4 months unless I am really ill. If you have just started plaquenil you need at least that time, if not more, for any changes to take place in disease activity. So that is probably why the wait. But I think you need to find a lupus expert to put your mind at rest.

Hope this helps... wrists hurting now so off to bed with me.

Sara

 

[applesauce]

Hey there. Sounds frustrating, this is the most frustrating disease, I am totally with you. Keep in touch with the emotional side of things, I for one have a total meltdown every time I start to flare, but it's better to get the meltdown out of the way at the beginning rather than leaving it to happen later and make it all worse

As for the length of a flare, my story is rather bleak on that front I was diagnosed age 9 and very ill till 13 and just barely escaped (they thought I would die before I graduated highschool) around 15. But hey, I graduated high school So don't give up on whatever you want to do with your life.

You really have to be persistant with doctors, They want to do what's best for you but they also want to do what's best for them, and sometimes those things don't correlate as much as they should. If you're not getting help, you gotta keep at it. It's really hard. I've been in a constant battle with my doctor for months (time for a new one. ahhh!)

Good luck, and if you have any questions or need to rant you can always PM me and I'll be around.

 

[Clare.T]

Hello Surferboy

In my opinion it would not be a good idea to change your GP at this point.
He did suggest going privately after all and there's maybe nothing he can do to bring the appointment forward. Perhaps you are the first person with lupus he has encountered. There are only 2 lupus patients in my GP's practice of 6000. On the other hand he must have other patients who see rheumies. I do think he should have made more of an effort even if he has never been in this situation before because it is sometimes essential. A GP calling the rheumy always has more clout.

I am not at all surprised that he wouldn't prescribe for lupus - they expect to get a letter from the consultant telling them what to prescribe. The GP has prescribed the pain killers - what more did you expect from him?
The GP is the first port of call. Having lupus doesn't mean you can't have other health problems. He is the person who will keep a general eye on your health, blood tests and so on and can reassure you about tests results such as cholesterol and urine tests.
It isn't usually all that easy to change GPs in the UK and be sure of getting a better one.

The three month waiting between specialist appointments is par for the course for a follow up after the initial consultation. Anticipate having to wait much longer between appointments - at St Thomas' it can be more than a year. However from what I have seen over the years it is not usual to tell diagnosed people to come back in 3 months without having prescribed for them.

I am sorry about your severance from work - can you get that held off? Perhaps you could say circumstances have changed. The ideal would be to wait until you are more certain of where you stand and more confident, ideally getting your lupus well under control, especially since I gather from what you said that you will be moving to another part of the country to start your new business.
There are some excellent specialist rheumatologists in London and a few other places but I certainly wouldn't want to move at this particular point without knowing what the local rheumy services were like.

The £1m? for me is why did that consultant who diagnosed you not prescribe some medicine. Disease modifying medicines take several months to take effect and it can take a couple of years to get the right mix. Prednisone is often prescribed to tide people over and cause the minimum possible interruption to their lives especially their jobs. A frequent consequence of chronic illness is unemployment and poverty. This costs society too.

All the best
Clare