Hi does any body else have MCTD with Scleroderma? I was recently diagnosed after being treated for RA for two years and would like to know more about it. I have read websites and booklets from R and S Ass but would be good to have some first hand, forgive the pun, information.
Has anybody found any suppliments that help?
Thanks, Ax
Yes that what they tell me I have, it seems to cover those of us who dont tick all the diagnosis boxes but the majority are flagged.
I was diagnosed with Raynaud's in my late teens, the scleroderma word was banded about 10 years later although no prognosis given as it was an "individual" condition that followed no set path. My latest consultant uses the phrase Mixed Connective Tissue Disorder instead but I've taken it all to be the same condition that I've put up with for the last 30 years under whatever name they call it.
As for supplements For years it has been ginkgo, ginger, omega 3-6-9 with others coming and going.
The big break through for me came when I cut processed wheat out of my diet, with all the indicators looking good (although I am not a coeliac) even my consultant acknowledges that it helps me.
Lovely to know that I'm not unique in this regard.
Hi Ruth,
Yes it is great to know there is somebody else out there although I wouldn't wish this on anyone.
I didn't, or have not yet had, Raynauds- one finger went white a couple of times that is all so I'm not sure if that counts.
Thanks for the supplement advice- cutting out wheat sounds like a nightmare but worth a try perhaps. What meds are you on? I am starting Iloprost in a few weeks time and from what I have read the side effects are not nice but worth putting up with. I am struggling to walk now so anything that can help is really welcome.
All the best, Ax
Sorry for the delay but been away to sunny climes and generally "warmed-up".
I dont take anything now as I found that each additional pill meant 2 more to deal with the side effects. I seem to have difficulties taking any drugs, its almost as though my body doesn't know what to do with them, my auto-immune system being what is "out of kilter" , so to speak so why try and compund it more. Also a life time diet of pain killers, which generally became less effective wasn't that appealing.
So I try and eat as healthily as possible avoiding processed foods, I know it is boring but drinking loads of water seems to have a very positive effect too.
I know that this strategy wont work for everybody but its how I cope one step at a time.
hope you feel better soon and that the Iloprost helps.
Hi Ruth, I hope you had a fab holiday in sunny climes. I started Simpony last week and it has made quite a difference. I no longer have to take any painkillers which is great. I hear what you are saying about a healthy diet etc and I agree, I try not to drink too much either. Hey ho, one step at a time as you say.
All the best,
Ax
glad to hear you're feeling positive
Let me know how you get on.
Hi Ruth,
sorry for delay. I was given Iloprost which I had a really bad reaction to and it has taken me a while to recover. I have also been to see another specialist and had CTD confirmed with scleroderma activity. Yippee lucky me. How have you managed to cope with it for 30 years?
Getting a diagnosis has been quite a relief, not that I want the disease, but to at least know what is happening. I feel that I should now put all this behind me and get on with my life. Having said that, I woke up this morning with a flare- that is what it was called when they thought I had RA- is it still called a flare in CTD? Is this just one more symptom of the disease. I get dreadful pins and needles too, is that normal for the likes of us?
I hope you are keeping well Ruth, well as well as you can, you know what I mean.
All the best,
Ax
Are u a reader? I only ask as I got a couple of books (many years ago) One I still have which is by a lady called Karen Gottesman and it is called The First Year Scleroderma An essential guide for the Newlt Diagnosed.
Its main drawback is that it is American but the first few chapters did help me with coping with the diagnosis and just generally learning about the condition. It was "pre google".
then there was another book again with scloroderma in the title (I got them from searching Amazon) which was written by a patient and how he was coping. I thnk I passed it on to a friend who was suffering from another condition but anyway its not on my bookshelf but I did find bits to encourage me to make the illnes part of me not all of me. It is something I have to live with ( which does restrict me sometimes) but I have a life to live and I try and get on with doing that as my main focus.
hope this coming week is a good one for you
Thanks I never thought of searching for it on Amazon- lets face it who would want to actually buy CTD. Ax
Hi Ruth,
How are you? Happy New Year, let's hope it is a good one for us all.
I just wanted to ask you about feet. The bones in my feet are "degrading" according to my specialist and now I have to get special shoes made for me by the NHS- yippee.
Have you had trouble with your feet at all?
Although I'm on some great drugs I am struggling to cope with the pain and fatigue and as thinking it is time for me to give up work.
Do you still work?
All the best for 2013
Ax
I have a weak ankle, so I go through phases of going over on my ankle. My osteopath says that I now have so much scar tissue that the tendon is "stretched and has lost its elasticity" hence my tendnancy to go over on it.
So I tend to wear flat shoes/boots (hotter) and if I am going walking I make sure that my ankle is well strapped.
I have low bone density, not helped by being an asthmatic, am a bit of a couch potato, avoiding exercise as it makes me cough
Thankfully I dont get the "walking on glass" sensation that I know other people experience so feel I'm one of the lucky ones.
As for emplyment I've just come to the end of a years maternity cover where the lady has decided to return to work, so I can honestly say that my job has ended as to be honest I found working full time a bit much.Fingers crossed i can find a part time job soon!
Hi, I was diagnosed with MCTD a few months after I was diagnosed with Raynauds nearly 20 years ago, my index finger went completely black!! Before this I had 3 late recurrent miscarriages due to Hughes Syndrome (associated with Lupus). I have had Scleroderma now for at least 6 years, my lungs are affected and have had reflux and digestion problems for 18 years. I cannot cope with Iloprost at the hospital and get really ill, so they tried me on viagra as apparently t does the same job as Iloprost. Unfortunately, I can't see any difference!! Keep positive - thats one of my moto's. PS. I eventually went on to have a child who was pulled out six weeks early under the Lupus Clinic at St. Thomas' Hospital in London.
Hi there Mode, sounds like you have had a rough time of it. What an utterly horrible disease this is. I hope you are keeping positive- I tend to just try to forget about my condition and get on with things the best I can. I guess it is all any of us can do. Viagra is interesting- I suppose it stimulates circulation or something. I might as my specialist for some if it is a known replacement.
I don't have Raynauds but my hands and feet are already quite painful with the scleroderma and pins and needles and I can now feel the skin on my face tightening up. Ah well, at least I wont need a facelift.
Good to hear from you, all the best. Ax
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