Finally after you have, you haven't scenarios It ... - LUPUS UK

LUPUS UK

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Finally after you have, you haven't scenarios It has been confirmed that I have MCTD.

Tinalou profile image
9 Replies

Anyone have any suggestions as to what meds I should be taking? Many thanks

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Tinalou profile image
Tinalou
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9 Replies
tracynoe profile image
tracynoe

I have MCTD, Raynauds, Unclassified Vasculitis and I take pred 8mg and MMF 2grams per day. I also take antihistamine daily am severely allergic and take pain killers daily I have asthma eczema and pituitary problems although that is monitored and not treated.

nicky1234 profile image
nicky1234

hi

i have mctd and take

plaquinal.

amertriperline, helps with nerve pain.?

steroids. 10mg or 12.5 mg

lyrica, helps with muscle pain?

seroxate so i dont get depressed.

nexium so dont get damage to stomach from taking the meds.

mobic or molixican helps with joint pains. inflamation.

take other meds for heart condition caused by the lupus.

i have lupus raynulds fibro tendenitis sjogens scleroderma cant remember what else for now.

what illness's do you have?

the two above on meds with questions marks next to them could be the wrong way round. :) xx

AngelaW profile image
AngelaW

Hi Tinalou, I have had lupus/MCTD for 6 years now with Raynaulds, fibromyalgia and in the past month I have been diagnosed with Interstitial shadows on both my lungs. I've been on hydroxichloriquine (didn't work), azathioprine (alergic reaction), methotrexate (stopped taking it due to breathlessness) and now i'm on Mycophenolate (2g per day). I also take 9mg steroids but am reducing gradually (was on 30mg) and the usual Omeprazole and Paracetamol and Ibuprofen. If you've got your diagnosis have the doctors started you on medication? Take care and keep well, Angela

Tinalou profile image
Tinalou

Hi guys, thanks for replies, I'm on hydroxychloriquine again and it doesn't work . Who should I be under for this? The Rheumy discharged me and referred me fir pain mgmt? Bit pig tired of it to be honest. I just need to know what meds to try pushing for x

tracynoe profile image
tracynoe in reply to Tinalou

I see a Rheumy, Endocrinologist, Eye clinic and others as necessary but on the whole my Rhuemy takes the lead and request tests and other opinions as required. I was told that MCTD is autoimmune and needs treating accordingly, in my case it was to dangerous not to treat.

Hope you find some answers soon. Tracy

Jennie_103 profile image
Jennie_103 in reply to Tinalou

What dose Hydroxy are you on? I found I needed 400mg - 200 and 300 did nothing at all. Took at least 4 months to feel any good effects too so don't give up too soon!

Tinalou profile image
Tinalou

P.s it scares the life out if me x

BetsieBoo profile image
BetsieBoo

Hi there! I to have MCTD plus, as most of us, a host of other bits and bobs! I actually made an informed choice not to take any meds until the symptoms were at a point where I could no longer manage. I do however have a good lot of pain relief on board in the form of fentanyl patch and morphine as and when.

I just felt I was on so much medication and still didn't feel great I thought I'd try to come off all meds that I could. Still get help during flare ups tho!!

Hope this helps. Xxx

Jennie_103 profile image
Jennie_103

I just got a diagnosis of MCTD too after having a fibromyalgia diagnosis before that. I'm on Pregabalin (Lyrica) for fibro pain (plus tramadol and oramorph as needed) and was put on hydrochoriquine (Plaquenil, 400mg) for MCTD. I have Raynaulds as well so I'm on 5-10mg Amlodipine for that (which is brilliant by the way).

Rheumy definitely shouldn't just discharge you - with a diagnosis of MCTD you need regular heart and lung tests - no argument about that.

Nothing wrong with seeing pain mgmt as well though, can have some useful hints and tips and they tend to take you more seriously if you have done that and you still have problems. Just a hoop to jump through really.

Best of luck,

Jennie K

Newcastle upon Tyne

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