Medication??

[RebeccaAnn]

I have been taken off Hydro due to it causing shortness of breath, so now i am left wide open with no meds... Feeling terrible. Does anyone know what the alternitive medication to SLE will be??

Feeling very vulnerable at the moment.... x

[AngelaW]

Hi RebeccaAnn, I assume your consultant took you off the Hydroxychloraquin, did they say they were leaving you for a few months for it to get out of your system before trying something else? If you have any questions ring the specialist nurse at your hospital or visit your GP, dont sit and worry about it.

(I went from Hydroxy to Azathioprine to Methotrexate and now just starting on Mycophenolate, so dont worry there are plenty of meds out there!)

Take care, Angela x

[Jinny]

google.co.uk/url?sa=t&rct=j...

Hi Hun,,i do know of a few Lupies who have come off Hydroxy and gone onto this ,,Lefunomide,,,with good results!Do hope you get something sorted soon as the joint pain is awful i know.I would speak to your doctor as soon as you can.Also pop in and see us at Lupus is real..another great place to get support,,we are too at facebook! Lupus is real!!

xx

[RebeccaAnn]

My GP took me off them Angela because i was so short of breath, He then said he would write to the consultant to get me an appointment ASAP ... Heard nothing and feeling lousy. Went and had 7 tubes of blood taken 3 weeks ago or so... still heard nothing from them with regards to that. Had 2 biopsies on skin and still waiting for results for that....I called my GP up this morning and demanded an 8.30am appointment for tomorrow. Feel so frustrated and like my life has been hyjacked... Although i have had Lupus for many years it all seems to be getting too much for me now and dont know what to do or the best way forward, my personal life is a complete mess ( relationship ) and sometimes wonder why i bother...

I will look at the lupus is real site Jinny today xxx Thankyou xxx

[AngelaW in reply to RebeccaAnn]

You appear to have a brave GP, all those I've seen wouldn't have interferred with the consultants prescription! I started with breathlessness last year on Methotrexate (side effect of that medication) but I rang the specialist nurse at the hospital myself and she told me to stop taking the methotrexate. I also believe in phoning the consultants secretary to ask her to put a question to him if I feel I need an answer to something that can't wait. I would ring them tomorrow and tell them that your GP has told you stop the meds and they may rush you through an appointment.

To digress,my breathlessness was caused by a deep infection on my lung, which was missed by 3 GPs at my practice, and I had 3 xrays all of which proved inconclusive. By the time it showed up on xray, 3 months later, my lung had partially collapsed and I've just been told that I won't get the use of it back. Life is not fun at the moment and like you the lupus seems to be taking over, I live in hope that my new meds will kick in soon and do something for me, likewise you'll probably feel better once you're on different meds.

If there is one thing that this past 9 months has taught me it is not to be fobbed off if I feel something is wrong and to be brazen and turn up at the GPs every other day if necessary and not to worry about phoning the consultant. Dont want to frighten you with my story as it's not the norm, but if you feel something is wrong then however much it feels like you're fighting a losing batte keep at the docs. Take care, Angela xx

[RebeccaAnn]

I answered my own question insted of replying !!!!!!!!!! Dont know about brain fog ... think i need putting down x

[lupydragon]

Saw rheumy today and he undecided which of the following tablets to put me on , either, Azathioprine / Lefunomide but this is dependant on blood results, they must have taken at least an arm full today! He is concerned that there seems to be a big cross over between Lupus and rheumatoid Arthritis so thats why he has got to wait for blood results. See him again in 4 weeks

Apart from daily aches which we have between us feel I have to accept, its the other more aggresive flare ups that he is concerned with, a total of 19 in 11 weeks, some lasting over 24 hours, it seems to be one or both hand s/ fingers / wrists that are the main targets for the wolves to attack

Was diagnosed with Lupus last June, and have been on Hydroxychloraquin and Methotrexate plus steroids since then,

Was just wondering how other people get on with Azathioprine / Lefunomide,

[Acorn1 in reply to lupydragon]

Hi there.

I was taken off Azathiaprine in March because my White blood count became really low. It's now returned to it's normal level. I'm quite pleased to be off it as my hair was falling out but until I see my Rhuemy in July I don't know what the withdrawal of this drug has done to my actual Lupus. ESR was nearly down to normal rates from 130 to 30, so I'm hoping it's stayed the same without Azathiprine.

Hope this helps X

[Acorn1]

Hi RebeccaAnn

I'm so sorry you're in a bit of mess with all this stuff. I'd like to ask you if it was decided straight away that the Hydro was the cause of your breathlessness, or did you have lung tests like an Xray, peak flows or Oxygen saturation checks? How do they know it's not your condition causing your breathlessness? I'm asking because I have Lupus and am on Hydro and I'm so breathless. It's like breathing at high altitude. I don't get joint pain so I often wonder which part of my body the Lupus is attacking. I wonder if it's my lungs being affected by the Lupus, or is it the Hydro. I'm going to push it with my Rhuemy in July but i just wondered how quick your doctor was to take you off Hydro without actually knowing if that was the cause?

Alison x

[RebeccaAnn]

Hi Alison, He took me off over the phone, when he could hear i sounded breathless I feel so alone and fed up with it all i just dont have the engergy to argue... My GP said he would write to the Rhumy and arrange an app asap to change meds.. thats was 4 weeks ago and ive heard nothing. So low and now wondering why i actually bother getting up in the mornings. Its all too much effort :-(( x

[bethsuejane in reply to RebeccaAnn]

Hi Rebbecca....my advice is... Ring your rhuemy's secretary to ask if they have recieved the refferal from your GP as you are feeling so ill, explain why and I'm pretty sure you will get an appt' asap. Definitely will be quicker than waiting for the GP to find out you haven't yet been seen! Unless it is brought to their attention they never know no appt has been sent, bypass this stage and ring tomorrow am!

I am too as I also have a problem that the GP can go home and forget about until the next time I appear before him!!

Good luck to us both!! Lets hope we can get a quick result!