How do I get a second opinion?

[KathinAyrshire]

I have been diagnosed with systemic lupus and put on quinoric for five months with absolutely no effect, flares take use of both hands big style! Not taken any drugs apart from preds and diclofenac in flares for past seven months. Dermatologist and rheumy not communicating too well and now want me on azioprine{?} which I am reluctant to take.as no one seems to be taking overall charge of the case so need to try for a second opinion. Any advice as to how to go about this. So fortunate to have a lovely GP. Rheumy wants to keep a close eye on me so have an appointment seven months after seeing him. Am somewhat concerned will fall between the specialists and get lost!! Any advice??

[tintin49]

the teatment for lupus is the same for all of us. you start on quinoric/plaquenil if that dont work you are on stronger drugs chemo type stuff and steroids and it goes on until you find something that works for you.

i had a second opinion and wanted me on anzanip??

feeling cheated and fed up with the treatment as it takes over your life. i'm so depressed since my diagnosis and so ill as i am not on anything and its taking its toll on me.

all the best

[KathinAyrshire in reply to tintin49]

So many thanks for the reply.Quinoric did not work at all for me, now they want me on chemo drugs. Who did you ask for the second opinion, GP or specialist. I have been off 'maintenance' drugs for 7 months with just preds and diclofenac for flares which have gone from6-8 weeks to 3-4 weeks. Am self employed and work with animals so 365 days a year. You seem to be far worse than me, this is my first year of diagnosis so it is a journey I must take hopefully not on my own.

I really do appreciate you taking the time to reply. Are you on anything for depression, it is not a sign of weakness to take an 'upper' any help you can get!

I hope you turn the corner soon and begin to feel somewhat better.

[Hidden]

I have had Lupus for 10 years. I was given an injection of steroids to stop the flare by my consultant at the first consultation and a further one 3 months later . Plaquenil takes 3 months before it has an effect hence the injections. It might be worth asking your doc about quinoric, I had a massive reaction to it last month{pain, the trots , flu-like symptoms almost like a flare} My Gp ha specified plaquenil on my prescriptions now because of the side efects of quinoric. I have taken plaquenil for 10 years.

Talk to your Gp but from experince it does take months to get back on your feet after months of this disease running unchecked. Our body needs time o recover. Best of luck..

[Tigerlily4]

You're perfectly entitled to a second opinion Kathin and your GP would be the person to arrange this. Ask them to locate one with a detailed knowledge of SLE or carry out some personal research online and provide a name. If you want to sort this out promptly (ie. within weeks rather than several months), consider paying to see an alternative Rheumatologist privately - it should cost somewhere between £120 and £150 but might turn out to be the best money you ever spent. If you get along and he or she is relatively local, they'll usually suggest switching you to their NHS list. Alternatively, you can insist on being treated via the NHS at the lupus clinic at St. Thomas's in London - but this is not viable for everyone, dependent on distance. In my experience not all Rheumatologists are terrific at helping us manage SLE and, like anything else, it's worth "shopping around" until you find one in whom you feel totally confident placing your trust. After reading your question, my first thought was what other NSAIDs have you tried? If diclofenac isn't working there are a heap of others and I would advocate sampling them ALL one by one and/or increasing your dose of prednisone before even vaguely considering chemo. It's perfectly OK to disagree with your Rheumatologist about treatment. They're only human, don't live with our particular problems and therefore don't always know best. Achieving that kind of relationship will, however, involve a lot of research on your part and if you have the opportunity to take an "Expert Patient's Course" all the better. IMHO, having gained a great deal of insight and being given many warnings from fellow-lupus-battlers over a couple of decades, I've formed the personal opinion that chemo is best left as a final resort for fighting major organ involvement because of the serious side effects. It's quite possible that with the right NSAID you might be able to ditch the steroids. Not all drugs work for everyone so it's trial and error. The least medication you can manage with at any given time appears to me the best way forward with this wretched disease because of its progressive nature. I hope that helps - obviously I'm not trying to second-guess your treatment but if you don't feel comfortable moving to chemo then don't unless you've tried everything else first! x

[KathinAyrshire in reply to Tigerlily4]

Oh Tiger Lilly, you have echoed my thoughts exactly. I have the name of a Lupus specialist only 80 miles away (live in the boondocks) but don't know if private patients are a consideration. Have saved for years for two new hips, don't seem as I may need the hips before something else such as Lupus ah well! I am more than willing to go private for a second opinion before starting chemo drugs as quinoric did absolutely nothing after five months, apart from increase frequency of flares. St. Thomas's in London also viable as it is only an 8 hour drive but have friiends in London who could put me up whilst tests done.

Diclofenac works well as does steroids, though I seem to need a combination of both for full effect

Please explain, Expert Patients Course and IMHO.

What is your opinion of purely treating flares as opposed to underlying probem?

I cannot tell you what a relief it has been to read you answer I thought that I was alone in my opinion.

I am so fortunate to have a good GP who is discovering this journey at the same time as me and it is a journey that I must travel and not being computer literate it is such a consolation to find such as you, knowlegeable in lupus.

Thank you so much, I don't feel so much alone now.

Love

[Tigerlily4]

You're welcome If my Rheumatologist (bless him) had had his way I'd have been on steriods 10 years before I actually needed them and on chemo long before that. As it is, I've lost a terrific amount of bone density courtesy of steroids in just a few years and dread to think how much worse it would have been had I begun taking them a decade earlier! The Expert Patient's Course is usually run at hospitals and I highly recommend it. You can find out more here: expertpatients.co.uk/

"IMHO" = in my humble opinion

Most Consultants do see patients privately - google his name and see what you can discover via the web or phone and ask his secretary at the NHS hospital. I advocate researching every new type of drug and its associated risks really carefully then making a balanced decision. My consultant also has to convince me the pros are greater than the cons to my long term health. Good Rheumatologists will respect you for being pro-active in the management of your disease and it's also incredibly self-empowering, which leads to a greater sense of well-being. This is basically what the EPC will help you achieve - although you can, of course, begin researching the disease and drugs used to treat it online. Lupus UK is an excellent place to begin: lupusuk.org.uk/ Good luck and let us know how you get on! You are definitely not alone

[Tigerlily4]

PS. I probably didn't make it clear you can opt to be treated by any consultant anywhere in UK via the NHS. However, if he or she is in a different Local Health Authority region to yours, there might be a short delay before the first NHS appointment can be made because your LHA has to give formal permission for you to be treated "out of area". Far as I know they can't refuse but may keep you waiting a while. If so, chase them via your GP.

[Coppernob]

Also, small point perhaps, but a lot of people have found that Quinoric is not as effective as Plaquenil, even though they're ostensibly the same drug (but different composition somehow). I have asked my GP to prescribe Plaquenil only, and he does that.