Mixed Connective Tissue Disease Awarenes
Hello and welcome to the MCTDA forum!
This is a forum for MCTD sufferers, the first of its kind! (to my knowledge).
To be part of our community please click on the register button below.
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For more information on Mixed Connective Tissue Disease, check out the website:
www.mctdaware.co.uk
Please note: this is the first time I have created a forum so if there are any bugs please report them asap so I can fix them. Contact me via email:
mctda@hotmail.co.uk
I hope you find the help, support and information you need and I wish you to be happy and flare free :-)
Abigail -
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New to Group

Thu May 21, 2015 12:12 pm by leeG

HI All, thanks for letting me join, i was diagnosed two yrs ago, altho had symptoms for much longer and now wonder if the MCTD started in my 30s when i was diagnosed with chronic fatigue. now also have raynauds, hashimoto's, blepharitis (sp?), asthma, and multiple allergies, Plaquinel has amazing effects until i had a severe reaction, and now on Atabrine (quinacrine) but its not as effective. …

Comments: 0

New to group, New to disease

Tue Aug 26, 2014 5:58 am by MissDaisy

Hello,
I am a 36 year old female with 3 boys, ages 4-9, and I work as a 911 Dispatcher. I started having symptoms about 3 years ago starting with lumbar pain. I put it off for well over a year thinking it was just over-exertion. When I couldnt take the pain anymore as it was constant, and even just turning my head to the side caused severe pain. I got to the point that standing, sitting, and …

Comments: 1

How much pain before accepting medication?

Fri Sep 19, 2014 9:46 pm by josephine landau

Hi - My names Jo, I'm 42.
I was diagnosed in January of this year with MCTD, after a year or so of growing symptoms (Reynaulds, aching joints etc) I am a working mum with 2 boys, so my days are fairly hectic.
I take B12 injections for fatigue, Levothyroxine for low thyroid and Tegretol for an epileptic seizure I had 10 years ago -So I was reluctant to add to my drugs list and I declined any …

Comments: 0

Not yet diagnosed teen from Finland

Thu Mar 27, 2014 6:12 am by finnishgirl

Hi everyone!

I was happily suprised when I found all this great stuff for us MCTD patients! And hope to get to know some people with this illness. Because there's not a lot of stuff for us in Finland.

I'm a 15-years-old girl from Finland. I still haven't got a diagnosis for MCTD, but my rheuma specialist has suggested it after many years of different tests. And it seems to be logical, I have …

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Another Australian story

Fri Nov 29, 2013 9:50 am by Ozzie1954

First of all, it is so good to find a forum with people who have been going through the same issues. I was doing a search on earache/jaw pain which is afflicting me this morning and found this forum.

My story begins in 1987 but probably goes back a lot further because of other issues that surfaced in my teens. It started after I had a bout of the flu, went back to work where I was handling …

Comments: 1

New from California.

Fri Jul 26, 2013 10:28 pm by mollyingrid92

Hello! My name is Molly, 20 years old, California resident. At the beginning of the 2013 year I noticed I was having really bad knee pains that would last for a while. When I finally went to see my doctor, he moved my leg around to see how my knee was working. Then he did this weird on where he would put a hand flat on the side of my knee and with the other hand push on the opposite side of my …

Comments: 8

This is all new!

Thu Apr 18, 2013 2:35 am by Admin

Ive never run or created a forum before so there may be some bugs, please let me know as soon as possible so I can correct them! I hope you find it easy to use!
Admin Very Happy

Comments: 9

Hi from Australia

Tue Apr 30, 2013 12:46 pm by gorillagirl

Hi everyone Very Happy

A brief bio. Female, 45, Hashimoto's since young. Started with flare ups after activity, sore joints and muscles, feeling sick, bloods abnormal and high CRP and ESR, symptoms pointed to lupus. Doctor nightmare for some years, the usual, it's just your thyroid and you have fibro, maybe you have narcolepsy, others haven things worse than you blah blah blah.

Found a good GP, …

Comments: 8

Newbie, new to the dx, but not to the symptoms

Tue Apr 30, 2013 2:20 pm by Lenorekitty75

Hello Everyone ! Smile

Just came across this site today. Which is odd because I've been googling MCTD for months now. It's nice to know there are others out there in the world who could relate to what has become my life. Although I have frequented lupus and MS boards over the last 9 yrs and had wonderful support.

I am Christina, 37...mum of 3 the youngest is 3 and the oldest is 14. The Dr's have …

Comments: 4

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Latest topics
» New to Group
Thu May 21, 2015 12:12 pm by leeG

» Flare up PLEASE help!
Sat Feb 21, 2015 1:48 pm by aceequine7

» Help with getting a doctor to understand...
Fri Oct 31, 2014 6:16 am by nancehg

» Pain management/plaquenil vision issues
Fri Oct 31, 2014 5:49 am by nancehg

» New to group, New to disease
Fri Oct 31, 2014 5:37 am by nancehg

» Ear ache/Jaw pain - Anyone else?
Sat Oct 11, 2014 8:39 pm by finnishgirl

» How much pain before accepting medication?
Fri Sep 19, 2014 9:46 pm by josephine landau

» Burning sensation and peeling of skin on hands and feet
Fri Jun 13, 2014 4:41 am by Andazi

» Heartburn & reflux
Sun May 25, 2014 8:49 pm by finnishgirl

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High Liver Enzymes

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High Liver Enzymes

Post by StacieicatS on Mon Apr 22, 2013 5:24 pm

I have had high liver enzymes on and off for years with no changes to my lifestyle or diet. Is this something that could be related to MCTD? Question
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Re: High Liver Enzymes

Post by MamaLolo on Tue Apr 23, 2013 12:20 pm

A lot of the meds we take can cause liver issues, especially NSAIDs...

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Re: High Liver Enzymes

Post by Lisa Douglas on Wed Apr 24, 2013 2:45 pm

I was diagnose with Autoimmune Hepatitis, an (uncommon) overlapping MCTD disease... The elevated liver enzymes are not connected to anything else but Autoimmune Hepatitis, not alcohol, medications from what they told me. I take Budesonide, because I cant take Prednisone because of the side effects. My enzyme levels have been normal for about 12 months... and have been able to lower my dose to 3 mg per day. Maybe ask one of your doctors about it?

Hope you find some answers!
Best, Lisa

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Re: High Liver Enzymes

Post by Admin on Wed Apr 24, 2013 11:45 pm

Hi StacieicatS,
As MamaLolo said, due to the medication we take, our livers can produce extra liver enzymes etc. That's we need regular blood tests & liver function monitoring. Is this what your doctor has told you? You have high enzymes?
Here are some links I've found with useful info on liver enzymes:
easy definition on what liver enzymes are - Mayo clinic
8 ways to lower liver enzymes


Last edited by Admin on Thu Apr 25, 2013 12:45 am; edited 1 time in total (Reason for editing : Adding links)

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Re: High Liver Enzymes

Post by kimmieg33 on Thu Apr 25, 2013 12:17 pm

Thanks for the links on liver enzymes
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Re: High Liver Enzymes

Post by StacieicatS on Mon Apr 29, 2013 7:09 am

Thanks, guys. My enzymes go up and down with no changes to my lifestyle/diet/meds. :/
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Re: High Liver Enzymes

Post by arthurg144 on Mon Apr 29, 2013 5:13 pm

With no reasoning given, I have been diagnosed with Non-Alcoholic Statio Hepatitis (NASH) which is 1st stage cirrhosis. My enzymes have been up for years and they finally did a biopsy. This was 2 years ago now and still no explanation why. They did rule out AIH though which makes no sense to me. Gotta love the unknown!

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Re: High Liver Enzymes

Post by gorillagirl on Tue Apr 30, 2013 12:58 pm

I've had liver enzymes at upper range or over (not by a lot) for years and it was before taking any meds and I don't drink. I haven't been able to get an answer from any doctors so far as to why. When on prednisone it went down. I've got some lupus symptoms so was assuming it was connected? I'll read those links above and see if there is anything in there.

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Re: High Liver Enzymes

Post by Ozzie1954 on Fri Nov 29, 2013 10:03 am

I have also had issues with the liver enzymes.

As far as I am aware it is the Methotrexate that can cause some issues, however, some things to consider include:

1. Do you have a fatty liver? Unfortunately I was diagnosed with a fatty liver as well as gallstones. According to my new doctor he says that this can be the issue and needs to be watched.

2. If you are taking Methotrexate then it needs to be either NO alcohol or a very little alcohol at the weekends. If you drink more than a glass or 2 of wine then that can affect the liver enzymes.

3. Watch your intake of Panadol or Tylenol (they are the same product). Despite the advertising that it is gentle to the stomach, too much will cause liver damage.

These are the main issues, especially as they have affected me over the past 12 months. I have an excellent GP and when my liver enzymes came back abnormal he sent me for tests. The only issue is that fatty liver!!


Last edited by Ozzie1954 on Fri Nov 29, 2013 2:14 pm; edited 1 time in total (Reason for editing : to add some information.)

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Re: High Liver Enzymes

Post by gorillagirl on Fri Nov 29, 2013 1:46 pm

My liver function is perfect right now, the plaquinel seems to be helping a lot. Pretty sure it wasn't fatty liver at the time. Now my potassium is low Rolling Eyes

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Re: High Liver Enzymes

Post by Ozzie1954 on Sat Nov 30, 2013 1:36 pm

gorillagirl wrote:My liver function is perfect right now, the plaquinel seems to be helping a lot. Pretty sure it wasn't fatty liver at the time. Now my potassium is low Rolling Eyes
Fatty Liver is one of the possibilities. Mine was discovered via a scan. I have a fatty liver plus gallstones.

What people might not recognize is that Paracetamol or Panadol or Tyelenol can harm the liver if one is taking too much at one time. Liver damage is a little known side effect of the use of Paracetamol.

I am on Methotrexate, and I need to have a monthly blood test which includes liver function. (I have just had a year long saga that meant that my blood test was not carried out on a regular basis. I am not going back to that doctor!!).

Plaquenil does not seem to affect the liver. It can affect the eyes. It can make one feel nausea or even cause some stomach problems similar to IBS. It has no effect on fatty liver. On the other hand, it is dicey to use Methotrexate when one has a fatty liver!!

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Re: High Liver Enzymes

Post by gorillagirl on Sat Nov 30, 2013 2:32 pm

I'm on two monthly blood tests to check everything, I was on pred before the plaquinel and that bought my liver function back to normal and it's stayed there. I deliberately avoid any unnecessary drugs because I know they can affect my liver and keep panadol to a minimum too. If my liver was still affected I'd ask for a scan but no point right now, I'm just being proactive about protecting it.

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Re: High Liver Enzymes

Post by Ozzie1954 on Sat Nov 30, 2013 2:39 pm

gorillagirl wrote:I'm on two monthly blood tests to check everything, I was on pred before the plaquinel and that bought my liver function back to normal and it's stayed there. I deliberately avoid any unnecessary drugs because I know they can affect my liver and keep panadol to a minimum too. If my liver was still affected I'd ask for a scan but no point right now, I'm just being proactive about protecting it.
Yes, that is the right actions to take, except it really should be monthly blood tests to check the liver function but only if taking Methotrexate which can have an impact on the liver.

I personally had a reaction to Plaquenil the first time around, and kept on getting tummy cramps etc. However, this time, with an increase in the actual dose of the medication I am tolerating it quite well, which suggests there might have been something else that was causing the particular upset.

At the same time, I do have to watch my intake of Paracetamol because increased doses might have been the cause of my particular issues.

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Re: High Liver Enzymes

Post by Ozzie1954 on Sat Nov 30, 2013 5:30 pm

gorillagirl wrote:I've had liver enzymes at upper range or over (not by a lot) for years and it was before taking any meds and I don't drink. I haven't been able to get an answer from any doctors so far as to why. When on prednisone it went down. I've got some lupus symptoms so was assuming it was connected? I'll read those links above and see if there is anything in there.
Do a search on Lupus and liver enzymes. The search results might prove helpful. If you are MCTD and tending towards Lupus then the high liver enzymes might be connected to Lupus.

In my case, when the same thing was observed last year it could have been an increase in alcohol consumption that caused the issue, at least on one occasion. I have a deal that I am allowed to drink on the weekend and only a glass or 2 of wine. As I have already indicated I do have a fatty liver, and there might have been a couple of occasions when I had too much paracetamol, but that is very rare!!

When I moved from Canberra to the Central Coast in NSW I had to change doctors and my new GP is someone who actually reads the blood test results and if he gets an abnormal result he will do a follow up. When I first saw him he gave me the paperwork for the blood tests that I require, and that was the first time that I had abnormal liver enzymes. He ordered the scan and it showed up the fatty liver and the gallstones. I could have saved him the time by providing the previous results but at the time those results were not liberated from a packing box. Razz 

The tests did not show up any other abnormality. Likewise nothing showed up for my bladder.

Interestingly, occasionally I get an irritated bladder. When this happens Lyrica settles it down, indicating that it is the nerves surrounding the bladder that are at fault.

I can only comment on what I have discovered for myself and about myself. What I do notice is that people here have very similar symptoms.

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