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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 …
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 …
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 …
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 …
Comments: 0
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 …
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
Admin
Comments: 9
Hi from Australia
Tue Apr 30, 2013 12:46 pm by gorillagirl
Hi everyone
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, …
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 !
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 …
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
Latest topics
prednisone
2 posters
Mixed Connective Tissue Disease Awarenes :: Mixed Connective Tissue Disease :: Medication & Treatments
Page 1 of 1
prednisone
My daughter has been doing some reading and is very concerned with the side effects of long term prednisone use. It does help ALOT but the dosage started very low and has been increased twice. I think the plan is to keep increasing the dosage as needed. My next appointment with my rheumy is in september. I am going to call and raise hell trying to get in. Since it is now summer it would be a better time for a med change that could make me sick. Once august hits there is no way I'll stop taking them and chance getting sick.
Any thoughts on steroids or other meds that help with the pain?
Any thoughts on steroids or other meds that help with the pain?
kimmieg33- Member
- Posts : 42
Join date : 2013-04-18
Age : 55
Location : Living in the moment
Re: prednisone
Hey kimmieg
I haven't been on it but I know that my sister in law was for rheumatism & said once you go on it its incredibly hard to come off of it. Almost like an addiction. Because it works so well & you notice the difference once off it. I know that one of the side affects is osteoporosis (I think) & that's why long term use isn't advised. They literally have to ween you off it.
I think other medications wise for me that's working right is methotrexate, plaquinil & mycophenolate. You could maybe ask about those. I'm in semi remission now. Yay!
As to avoid getting sick? Well I still haven't worked that one out lol
I haven't been on it but I know that my sister in law was for rheumatism & said once you go on it its incredibly hard to come off of it. Almost like an addiction. Because it works so well & you notice the difference once off it. I know that one of the side affects is osteoporosis (I think) & that's why long term use isn't advised. They literally have to ween you off it.
I think other medications wise for me that's working right is methotrexate, plaquinil & mycophenolate. You could maybe ask about those. I'm in semi remission now. Yay!
As to avoid getting sick? Well I still haven't worked that one out lol
Re: prednisone
Plaquinil was the first drug they put me on and I responded very well. They added the steroids later and it was like magic. Quality of life definitely improved. Now my body keeps getting used to the dose and wanting more and more. Time to halt this crazy train before I get to much farther down the track. Don't look forward to the taper down or the very strong protest my body will probably put up but I am not willing to sacrifice long term health for immediate relief. Their has to be a better way and my doctor WILL help me find it or I will find a doc who will.
I realize we are just another patient to them yet I have to believe there are docs out there who want to manage this disease with the minimum of long term damage due to the drugs they give you for treatment.
I think what bothers me the most is that my rheumy put me on steroids without any discussion about the negatives.
I realize we are just another patient to them yet I have to believe there are docs out there who want to manage this disease with the minimum of long term damage due to the drugs they give you for treatment.
I think what bothers me the most is that my rheumy put me on steroids without any discussion about the negatives.
kimmieg33- Member
- Posts : 42
Join date : 2013-04-18
Age : 55
Location : Living in the moment
Mixed Connective Tissue Disease Awarenes :: Mixed Connective Tissue Disease :: Medication & Treatments
Page 1 of 1
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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