[blueisis]

Hi

I am having a terrible exacerbation of all my sle symptoms at the moment and have just received an urgent appointment from the lupus clinic st thomas in a months time.

I have been on 200mg and 400mg plaquinel (alternating days doseages) and prednisilone on and off for 3 years now and arout 20 other drugs to assist with all my other conditions I have.

At the moment, I have extreme pain and swelling in my fingers and wrists, knees and feet as well as the return of the blessed horrible nasal sores, general fatigue and to make it all worse, my reflux/hernia had decided to join in too.

My question is: apart from taking plaquinel and prednisilone, what are the other treatments available in the UK to treat sle? The reason I am asking is because in January when my GP wrote to sle clinic they advised to increase steroids and fax them back if no better (which Im not) and now they have sent an appointment for 1st May thru. My GP thinks that they will probably want to change or add some other medication in and I just wondered what experiences other people had - I dont honestly think that my sle has ever been completely under control and my esr confirms this. It is treble what it was in September when I was on a lower dose of steroids (trying to get off them!).

If anyone has any comments, I would really be pleased to receive them.

As always, thanks in advance for your support.

Hugs to all

Julia x

 

[cath]

Hi,

There are several alternatives, according to kust how bad your symptoms are and whether you have organ involvement.

The most likely next step is azathioprine (immuran). Although it is a potent drug, it isn't as damaging to fertility as methotrexate or cytoxan, so is a better option for yourng women.

The other possibility is MMF or celcept. This is a fairly newimmunosuppresant that is proving to be effective in managing SLE.

I'm on aza, and it is fantiastic for me, few side effects and very effective:blush:


X C X

 

[mooks]

heya, i am so sorry to hear you've been feeling so rubbish...i have been feeling pretty much exactly the same and my doctor just started me on Methotrexate, which has some pretty good feedback from people on here..ive only been on it two weeks so i havent noticed any difference but the side effects arent so fun. However i dont believe (hope not) that MTX effects your fertility long term its just that you cant have babies while you're taking it. Anything is better than being on pred though right?! good luck xxxxxxxxxx

 

[sheila t]

Sorry to hear you so unwell and present. I am on pred, plaq and azathioprine and dicfenac and a number of other meds. Hope your appointment sorts you out. Rest up when you can

Sheila xox

 

[raggedyann1]

Julia,

There is a group of drugs that include methotrexate, imuran and cellcept. These 3 being the main medications that are added to Plaquenil to help get and keep your lupus under control. They are also called steroid sparing drugs and DMARDS Disease Modifying Anti-Rheumatic Drugs. This way you will understand when any of these terms are used in discussions. They are safer than long term use of Prednisolone hence the steroid sparing designation. I have been on Methotrexate about 10 years total, 5 years the first round and almost 5 years since my remission. It has been a good drug for me.

There is information on these medications on the main site, just click on "The Lupus Site" link at the top left of the page. Cellcept is also called mmf which is an abbreviation for its actual drug name which I can't spell.

Take care,
Karen

 

[Pollyanna]

Julia, I'm in the US and really don't have any advice for you...just wanted to send a bunch of gentle hugs your way :grhug: and say how sorry I am that you are feeling so unwell.

If it helps at all, after trying methotrexate, (which helped, but caused me side effects that I wasn't willing to endure) I switched to Arava, which has been wonderful. Along with, as you said, the other couple dozen meds that it takes!

Hope you get some relief soon dear. :there:

Love, Pollyanna :love2:

 

[blueisis]

Hi and thank you to you all for your interesting and caring replies.

Its only 3 weeks now til I go to the SLE clinic at St Thomas so will just have to bide my time til then. Keep taking the painkillers and rest up as much as possible. Will let you know what they decide to do with me.

Hugs to all

Julia x