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Brand new to this. Diagnosed with MCTD, need help


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#1 greypilgrim256

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Posted 09 October 2014 - 05:50 AM

Hello.  I was diagnosed this past June with MCTD.   I have a positive ANA + 3.0 Anti RNP.  The more I read about this the more I see it is linked to Sclero.  I have may sclero symptoms so I don't know why I bother calling it anything other than scleroderma.   I have slight Raynauds, GERD, nail splinters,  and my pointer fingers on both hands are getting more difficult to bend..  

 

It started with swollen hands and fingers.  All the other symptoms started presenting themselves a few months ago, however I do not have Scl-70 antibodies, and my CT scan of lungs last year and heart ECHO seems to be fine.  

 

 

I have a few questions.  

 

Did anyone else test positive for anti-RNP antibodies.?

 

Did anyone else's symptoms start out as swollen hands and NOT progress to sclerodactyly?  One of my main concerns is losing the use of my hands.  I have no idea how I would be able to work.  

 

I am currently on 25mg of Prednisone which seems to help TREMENDOUSLY with swelling, but I know I am not supposed to stay on Pred for long term because of side effects.  

 

What medications do others take?  Do they help?  I believe my doctor wants me to start Cellcept soon, but I am VERY nervous about starting it.  I have read that once you start it and stop it won't work well again OR your symptoms will come raging back hard. 

 

I am having a very difficult time dealing with all this.  



#2 Shelley Ensz

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Posted 09 October 2014 - 11:28 AM

Hi Grey Pilgrim,

 

Welcome to Sclero Forums.  I'm sorry you have MCTD and send my best wishes to you.

 

It's my impression that swollen hands are very common with scleroderma, however it very seldom progresses all the way to full blown sclerodactyly (curled, frozen fingers version).  (See our Sclerodactyly video.)

 

Many of us have had good luck by starting occupational therapy right away to learn techniques for stretching and exercising the hands, plus use of splints if need be, plus anti-inflammatories and even UV phototherapy and anything else your expert recommends.  See skeletal involvement and scleroderma treatments: positive resutls.

 

I dare say that with scleroderma symptoms predominant, you'd probably best be treated by a listed scleroderma expert and probably also want to peruse our page about steroid warnings for scleroderma.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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#3 Joelf

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Posted 09 October 2014 - 11:35 AM

Hi Greypilgrim,

 

Welcome to these forums!

 

I'm sorry to hear that you've recently been diagnosed with MCTD and I've included a link to our medical page to give you some more information. Scleroderma is a very difficult disease to diagnose and many of the features of MCTD overlap with it and can make things even more confusing (see our link Mixed Connective Tissue Disease).

 

I can understand how worrying these symptoms are to you and the thought of taking strong drugs can be very scary. However, I would like to reassure you a little; my fingers were incredibly swollen and puffy, so much so that I spent an absolute fortune having all my rings made larger, only to have them reduced again, once the medication I took began to work. So far (and I've been diagnosed for five years) I've had no signs at all of Sclerodactyly on my hands. Of course, that's not to say that I won't ever develop it, nor can I predict whether you will, but using myself as an example, it doesn't follow that because your fingers are swollen now it's a done deal! ;)

 

Prednisolone can be contraindicated for Scleroderma and, like Shelley, I've included our  Glucocorticoids, Steroids (Prednisone) Warnings for Scleroderma. However, like you, I take Prednisolone, which did reduce the swelling; I started on 10mgs and now am taking 5mgs (this has been gradually reduced over the five year period.) Obviously, it's better to be taking as low a dose as possible. I've never taken Mycophenolate Mofetil (Cellcept) but I do take Azathioprine, which is also an Immunosuppressant and whilst I wasn't ecstatic at the thought of having to take such a strong drug, I have found, after a few teething problems were ironed out, that I had really no problem with it (I've just reduced the dose and it seems to be working fine.)

 

I've no doubt that some of our other members will be able to give you some more advice and reassurance.

 

Kind regards,


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#4 Shelley Ensz

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Posted 09 October 2014 - 11:58 AM

"after a few teething problems were ironed out" -- sorry but that gave me a surprise belly laught, and I'd like to interject that in spite of the seriousness of our topics, somehow, I always seem to find bits of joy and humor sprinkled amongst the messages.  Thank you, everyone -- and today, particularly Jo -- for somehow managing to educate and uplift us all, at the same time. :emoticons-clap:

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 greypilgrim256

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Posted 09 October 2014 - 12:12 PM

Thank you for responding and for the links.  I guess I am fortunate to have had a rheumatologist who diagnosed me quickly.  It seems I already have an appointment with the Sclero specialist, Vivian Hsu, which is great.  I see her at the end of October.

 

I have been testing myself for proteinuria at home and it seems fine.  I will consult more with the sclero specialist at the end of the month. 

 

The odd thing about my symptoms are that I don't have the typical "hard skin" or at least I don't think I do.  What seems to be happening is that UNDER the skin of my fingers it appears to be developing fibrosis.  The actual tissue seems harder.  I don't know if that is just a precursor to the skin hardending or what.  All so confusing and upsetting. 

 

Can I ask how long you've been on the Azathioprine?  Is that the same as Imuran or is Imuran just the brand name?



#6 Joelf

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Posted 10 October 2014 - 12:15 AM

Hi Greypilgrim,

 

I've been taking Azathioprine since January 2010; prior to that I received an intensive course of Cyclophosphamide, which, I'm happy to say, was extremely successful (I should explain that I have lung involvement and the Cyclophosphamide infusions were to reduce the the inflammation on my lungs, before it became fibrosis and thereafter untreatable). I don't have the typical hard skin either; in fact the only skin involvement I have is shiny skin at the tips of my fingers.

 

Azathioprine is the generic form of Imuran (I'm in the UK where the National Health Service tends to go for the cheapest option! ;) ) Cheap or not, it did the trick where I'm concerned, a fact for which I'm eternally grateful!! :)


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#7 greypilgrim256

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Posted 10 October 2014 - 02:13 AM

Thanks again.  How were you determined to have had lung involvement prior?  What tests were given to determine inflammation of the lungs?  I'm glad to hear that the treatments worked so well.  



#8 Joelf

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Posted 10 October 2014 - 04:57 AM

Actually, I presented all the classic symptoms of shortage of breath, a hard dry, unproductive cough and I had felt very poorly for perhaps 18 months to 2 years before with Raynaud's, Carpal Tunnel Syndrome and a general feeling of being under the weather. Thankfully, I had a good doctor, who was on the ball; she sent me for a chest xray, took one look and then referred me to a local lung specialist, who then referred me to a top lung hospital where I had lung function tests, a bronchioscopy and CT scans (several!) In fact I don't think there was a lung test (with the exception of a lung biopsy) that I didn't have!

 

In a way it was fortuitous, as because lung involvement is one of the serious complications of Scleroderma, things happened fast and I'm sure this is part of the reason my treatment was so successful. Possibly if I had only exhibited vague symptoms as unfortunately happens to many of our members, nothing might have been done until I was really poorly.


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#9 Amanda Thorpe

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Posted 10 October 2014 - 12:53 PM

Hello Greypilgrim

 

Welcome to the forums and be reassured that I am typing this post with sclerodactyly (my hands are in said video) so even if you did get it, you manage. I have seen some people with hands way worse than mine and they manage, sometimes with help or adaptations. One lady with fingers completely curled in, used a stick to put her contact lenses in with because that can't really be done by someone else! 

 

I had pins and needles, numbness and swelling in my hands in the beginning of my symptom manifestation. My hands were totally straight as tight skin (approx 60% of me) meant my fingers, hands and wrists did not bend at all. My elbow didn't straighten either so it was really hard to use my hands, it was like having a plank of wood from elbow down. My fingers then began to curl quite quickly, amazingly so despite attempts at physio, splints and frequent wax bath treatments. It is actually easier to use my hands now than when they were completely straight with no bend anywhere. I have no idea whether you will progress to sclerodactyly, meany people have hand swelling but not many sclerodactyly.

 

I was on mycophenolate in the beginning and I am convinced it's why I had so much skin softening. I came off of it because of side affects and went onto methotrexate. Once I stopped the mycophenolate I did an on/off thing for awhile then started methotrexate until side affects then did the on/off thing eventually giving up on them all together. I had no rush of symptoms afterwards, if your disease is raging away and you start mycophenolate and this stops then it's working for you, obviously if you stop the drug the disease will rage away again because it's not being suppressed. If you don't get on with a particular immunosuppressant, there are others.

 

There's no getting away from the scary bit I'm afraid, we all go through it because suddenly the control and choice we thought we had for our lives is suddenly gone. Really, it was only ever an illusion but, boy, weren't it pretty?

 

Take care and keep posting.


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#10 judyt

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Posted 10 October 2014 - 01:45 PM

And here I am way on the other end of the scale as far as progression of my disease is concerned.   The first symptoms I ever had, as far as I can assess it, happened when I was pre-teen.   Very suddenly one day I developed a pain in my mid chest which had my mother sending for the doctor.   They came to the house in those days :emoticons-yes: and I remember him being very perplexed.   It was labelled colic but as a precaution I was sent for a barium meal xray.   I have no memory of what the outcome was, but I suspect there was nothing that could be seen so the whole incident was forgotten.  

 

The next thing was about 10 years later when I developed Raynaud's and Migraine.   That continued for about 15 years until I developed a bowel prolapse and after that difficulty in swallowing.   The prolapse and the oesophageal stricture were both treated separately by different surgeons and still nobody started to put things together.  

 

At the same time I had funny swollen fingers, strange cuticles and strange lumps of gravel under my skin.   Although, at the same time I had fairly typical tethered skin on my fingers from the first knuckle to the tips my hands were not restricted in any way and still aren't.   I started to have episodes of ulcers on my ankles and one threatened ulcer on one finger which I managed to control.

 

Move forward to 2003 by which time I was 59, starting to get fed up with all these strange symptoms and really noticing the fatigue when  going on long walks or walking the dog.   Suddenly out of the blue one night I had a major episode of reflux and by the morning I was vomiting blood.   Off to the Emergency Room and that's where they did the right blood tests and put everything together.   Actually not quite as simple as that!! 3 different hospitals and 3 different doctors. were involved but the end result was Systemic Sclerosis.

 

I reckon it took 48 years from first symptom to diagnosis and I am probably not the first person to have such a journey.   I am inclined to think that it was the fact that I have no obvious skin involvement that clouded the issue all along, but who knows :emoticon-dont-know:

 

So you can see that there is really no typical progression.   Some of us behave one way, some another and there is no telling what will be your story.   As far as I can remember my bloods showed an ANA titre of 1:2480 with centromere pattern but Scl 70 was negative.  

 

I have never been on any medications other than to treat particular symptoms.   Immunosupressants would possibly have helped in the early years but it is too late now to think about that.   These days I am being looked after to control my symptoms of Scleroderma, Rheumatic Heart Disease, Primary Biliary Cirrhosis and Sjogren's Syndrome.

 

Best wishes to you

Judyt



#11 greypilgrim256

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Posted 10 October 2014 - 03:58 PM

Thank you both.  May I ask what were the side effects of the Cellcept? 

 

I recently got my biopsy results back from Derm and they did show fibrosis in hand.  Should I urge my rheumatologist to just start with the Cellcept or wait until I meet the Sclero specialist in two weeks? 

 

I feel that the prednisone is definitely helping to keep imflammation under control, but I have also read that the more aggressive treatment you start early the better.  I also meet with a gastro doctor next week so that may influence some things.  So many difficult choices to make. 



#12 Shelley Ensz

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Posted 10 October 2014 - 05:08 PM

Hi Grey Pilgrim,

 

We can't give any medical advice, of course, because we are not medical professionals. However, unless you are in a rapidly worsening health situation, you should be just fine waiting a few weeks to have the scleroderma expert prescribe your best course of action. Sometimes they have other treatment ideas, and sometimes the best course of action is to save the more toxic treatments until they are absolutely necessary. 

 

Of course, if you have any doubts or develop any further or worsened symptoms, you can always ask your rheumatologist about it.  In general, these sort of diseases tend to be more on the side of slowly developing chronic illnesses, and if your illness is moving rapidly and very aggressively, you'd probably already know that by now.  For most of us, internal organ damage generally occurs very slowly and silently, over the course of years, rather than overnight.

 

Sometimes the treatments can be worse than the illness, depending on our particular situaton, and a well considered treatment plan is far better than a hastily put together one, unless you are in a crisis, of course. So I'd say, wait, if you can, and try not to worry about it, either.  You are doing all the right things, including seeing a listed scleroderma expert!

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#13 greypilgrim256

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Posted 10 October 2014 - 05:37 PM

I was thinking along those lines as well.  Just figured I would ask someone with more experience in all this.  It seems to be slow, which I am thankful for.  Hopefully it stays that way.  Has anyone been prescribe Plaquenil?  It was the first thing given to me about a year ago.  I was never really sure how much it helped.  I think it helped with the joint pains, but thats about it, and even them I'm not so sure because I really didn't feel a difference until the Pred.  My swelling of my hands and ankles didn't lessen until the Prednisone either.  I kind of "forgot" what being able to squat and stretch was like without being in some sort of discomfort. 

 

Can I ask what kinds of supplements to take or avoid that might help? I am taking Vit D3, B12, Magnesisum, Fish Oil, and Calcium.  Will probably start taking Vit. E because I have read that it is good for tissue. 



#14 Joelf

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Posted 11 October 2014 - 11:21 AM

Hi Greypilgrim,

 

I've never taken Plaquenil, but I know that many of our members have taken it, with satisfactory results. Certainly, the Prednisolone is good for reducing inflammation, although it does exhibit rather bizarre side effects, which can take quite a few months to manifest themselves (when I first started taking it in the beginning, I was very smug, as I didn't appear to experience any bad effects from it).

 

I've included a link to our Supplement Guide for Scleroderma, which I hope will give you some more information.

 

Kind regards,


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#15 Kathy D

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Posted 12 October 2014 - 07:14 PM

I was thinking along those lines as well.  Just figured I would ask someone with more experience in all this.  It seems to be slow, which I am thankful for.  Hopefully it stays that way.  Has anyone been prescribe Plaquenil?  It was the first thing given to me about a year ago.  I was never really sure how much it helped.  I think it helped with the joint pains, but thats about it, and even them I'm not so sure because I really didn't feel a difference until the Pred.  My swelling of my hands and ankles didn't lessen until the Prednisone either.  I kind of "forgot" what being able to squat and stretch was like without being in some sort of discomfort. 

 

Can I ask what kines of supplements to take or avoid that might help? I am taking Vit D3, B12, Magnesisum, Fish Oil, and Calcium.  Will probably start taking Vit. E because I have read that it is good for tissue. 

 

 

 

Hi

I have been on plaquenil since January 2009.  I quit it in mid 2010 in hopes of getting pregnant.....THAT'S when I realized that even though it takes up to 6 months to work, it really helped my joint pain and chronic fever!  I started taking it again and we have had a baby :)

 

My skin is definately changing.  Above my upper lip is darker and cross-hatched, I have to put chapstick all the way from lips up to nostrils all day.  Now, the back of my knuckles that were shiny smooth patches are the same darker, crosshatched look as my lip and it's up about 1/3 up my fingers.  Funny looking with the swollen sausage fingers then the stark darker shrunken bases.  Still grateful I can use them!

 

My particular rheumy recommended fish oil for many reasons, and calcium since I take prednisone and have estrogen deficiency (Premature ovarian failure).  He also said I might try a 1/2 dose of  OTC DHEA to see if it helped my fatigue.  It did not help fatigue but I did become pregnant against all odds while taking it :)  .  Be sure to check with your rheumy though, these might not be right for you and he might have better supplements or might say NO supplements at all for your situation.  I heard the kidneys are sensitive to certain over the counter supplements, don't stress your kidneys, you could damage them or ruin them...Also beware of herbs, I was inclined to use some and my rheumy about fell over, he said the mixture I was given by a local accupuncturist was dangerous for my condition.

 

I keep seeing a popular Dr show on TV talking about magnesium supplement.  I am going  to ask my rheumy this winter when I see him next, please ask yours too before you start.

 

Initially I had heart echo and lung tests yearly.  Now I get them every other year.  I am not sure since I do not have the anti-centromere antibody, maybe they don't need to run those tests for Limited Sclero?  Ask your rheumy or GP!!

 

I'd like to offer you hope, there are some quite frightening things that can happen with sclero, but many are not afflicted by the very aggressive types.  I am learning to cope with too hard to do joints and fatigue,  but I don't plan on leaving anytime soon :)

 

hugs, KD


Diffuse Scleroderma Diagnosed March 2009

#16 Amanda Thorpe

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Posted 13 October 2014 - 10:04 AM

Hello Greypilgrim

 

Best wait until you see your rheumatologist in 2 weeks but the good thing is you are already educating yourself so you can make informed decisions with them.

 

My disease (diffuse scleroderma) was sudden and rapid, consequently I was put on mycophenolate 2 months after diagnosis even though I had NO internal organ involvement. They were wanting to prevent more symptoms arising as well as treating my biggest symptom, skin involvement. Interestingly it did help my skin involvement but I went on to develop internal organ involvement anyway. Mind you I was only on Mycophenolate for about 10 months then used it sporadically then stopped it because of debilitating headaches, an unfortunate side effect.

 

I took plaquenil (hydroxychloroquine) for I think 3-4 months and noticed a reduction in pain and fatigue, about 20-30%, unfortunately I had stomach pain ranging from moderate to severe so had to ditch it also. I tried it again recently, lower, slower dose etc but same side affect again.

 

Everyone reacts differently to all of these drugs so you will just have to try them I'm afraid. At least there are immunosuppressants, DMARD'S (disease modifying antirheumatic drugs) and other symptom specific medication to choose from. Although MCTD can't be cured it can certainly be treated.

 

Take care.


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