Medication

[Tulipano]

Hi

I have just started my steroids and immunesopressant. How long does it take to feel better? Xx

[whisperit]

The steroids should start reducing some of the inflammatory symptoms within a few days. The hydroxy won't kick in - damping down the underlying autoimmune response and reducing the likelihood of flares and fatigue - for a few months (I was told at least 3-4 months). If you haven't already started a symptom diary, this would be a good time to start, so that you can see how things are changing with treatment.

x

[Tulipano in reply to whisperit]

I Am having diarrhoea today. Will it go away? Xx

[whisperit in reply to Tulipano]

I have read quite a lot of people here saying that starting on hydroxy causes stomach problems which settle after a couple of weeks. But obviously I don't know what's causing your diarrhoea now. I guess it's a case of managing it as you would normally. Hope you get some relief soon x

[Tulipano in reply to whisperit]

Thanks a lot xx I think could be the steroids 😥

[Emg-55]

Probably the immunosuppressant..what medicines are you taking? mycophenolate Used to do that to me... it took a few months for my body to somewhat tolerate it and I still have daily effects 2 years later. It can take a while depending on the person and medicines...

[Tulipano in reply to Emg-55]

Yes I am taking the same one. 😥

[Emg-55 in reply to Tulipano]

Talk to your doctor about it. For me it helped to take them without food and wait for like 30 minutes for stomachache to go away. As time goes by, you will see it also goes away.... I think you can also take it at different times to reduce its effects....but tell your doctor about your experience. Good luck!

[Sara_A]

Like others say it should settle down but if it doesn't u will need to see gp or ring rheum advice line.

The steroids should give u a lift in a couple of days and keep u going until the mycophenolate starts to kick in after about 3 months (they say).

Some people can tolerate meds better than others, my friend goes strange on just paracetamol whereas I'm on tonnes of drugs! I just must be a good 'druggy!'

[leslieliesel]

I had close to two months of steroids along with Hydroxy..I think I am going into my 3rd month of Hydroxy...I am feeling good enough...I was DX'd a few months back...BUT I am older 62..I was told by my rheumy that my Lupus , probably won't involve my organs.."just" skin, joints, and FATIGUE....It kills me to realize what others are going through...I hope you will be feeling good enough soon xx

[joannepaterson in reply to leslieliesel]

I was diagnosed with subacute cutaneous lupus in July this year, - rheumatoid arthritis & connective tissue disease diagnosed about 7 years ago - I am taking meloxicam - for joints, eye drops, mouth wash for this, and have been on steroids for Lupus (oral & topical) since July 2017,

I can't take hydrochloroquine - I've already had a retina stitched back in place, can't take methotrexate - previous cancer, so trying mepacrine for the last month, side effects are not great, nausea, upset stomach & dizziness... I also think the mepacrine is making my skin worse? - the rash has constantly covered 70% of my skin and I am exhausted a lot of the time....

The consultants can't give me a timescale for getting this under control - just time, trial and error!!

I've also been told it probably wont affect my organs thankfully...

After saying all of this I feel a bit of a fraud - reading what you and others are going through makes mine seem trivial...

I hope you are feeling better soon!

[Chanpreet_Walia LUPUS UK]

Hi Tulipano,

We published a factsheet on ‘LUPUS: and Medication’ which I hope you will find useful: lupusuk.org.uk/wp-content/u...