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Scleroderma with overlap of Polymyositis


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#1 Stacey

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Posted 20 November 2007 - 01:31 PM

Hi everyone,
My name is Stacey. I'm 24 years old and have been married for just over 2 years. At the end of August I was diagnosed with Scleroderma with an overlap of Polymyositis. I also have Raynauds. Life for me has been pretty miserable like I'm sure most of you can relate with. Right now I am dealing with the Polymyositis part of my diagnosis. I think I'm up to 11 pills a day for now and had a trip to the emergency room at the end of October because I started having seizures. I had a few doctors tell me that the seizures were a rare side effect of the scleroderma and I was wondering if anyone on here has experienced that?

Also I am trying to find some individuals who have the same diagnosis that I do so I can ask them what their experiences are. If you do please contact me as I am more than willing to talk to anyone about what has been going on.

I should also mention that both of my grandmothers (on my moms side and on my dads) both have Systemic Scleroderma. It is quite interesting that I ended up with it.

Other than that I'm scared to death about what my future holds for me as I am so young and haven't been able to have children and don't know if those cards are in my future. But it is nice to finally find some forums where there are people who can relate with what I am currently dealing with.

#2 Shelley Ensz

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Posted 20 November 2007 - 01:47 PM

Hi Stacey,

I'm really glad that you found our Sclero Forums. It's quite a rarity to have systemic scleroderma on both sides of your family. You may particularly want to enroll your family in the research registries, listed on our main site.

Anyway, I'm sorry you're feeling scared but that is certainly understandable. Here you should find the comfort and information that will make you feel better able to cope with everything.
Warm Hugs,

Shelley Ensz
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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.

#3 truman

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Posted 20 November 2007 - 02:14 PM

Hi Stacey:

Admitally, I did not know what Polymyositis was, so I googled it. I was a little concerned in that I found this blurb:

Polymyositis can occur at any age, but it mostly affects adults in their 40s and 50s. It's more common in blacks than in whites, and women have it more often than men do. Polymyositis usually develops gradually over weeks or months.

Maybe a second opinion might be worth seeking. You appear to be too young for this symptom to spell Polymyositis.

Sounds like Fibromyalgia; or is that one and the same?
Tru

It is what it is...........

#4 Sweet

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Posted 20 November 2007 - 02:53 PM

Hi Stacey,

Welcome to the sclero forums. I'm so very glad you joined us! I'm really sorry it has to do with you being ill however.

Stacey, I know this can be very scary and it's hard to adjust at times. I want to give you a link that may be helpful on emotional adjustment.

I look forward to knowing you better.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Shelley Ensz

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Posted 20 November 2007 - 03:00 PM

Hi Stacey,

You may be interested in our Polymyositis page, as well. It's at:
Dermatomyositis/Polymyositis

Tru, as I understand it (and I may be wrong, of course, as I have no medical training), polymyositis can occur at any age, same as scleroderma; I think the article is just referring to the most common age for it to strike. Diagnosis is based on CPK levels, electromyograms, and then a muscle biopsy to make sure it is poly and not something else. So odds are, it's a solid diagnosis for Stacey...unfortunately.
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.

#6 jefa

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Posted 20 November 2007 - 03:02 PM

Hi, Stacy, and welcome to the Forums. This is a great place for information and support. There are other members on the forum with a polymyositis overlap who I am sure will jump in with their experience and advice. Here is a link to our section on Polymyostis.


Warm wishes,
Jefa

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#7 janey

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Posted 20 November 2007 - 04:34 PM

Stacey,
Welcome Darlin'! I am so glad that you have joined us seeking support and information. I was diagnosed with Systemic Scleroderma and Polymyositis in August of 2003 @ 49. Just like scleroderma, polymyositis (PM) is a connective tissue disease and does occur frequently in overlap with scleroderma. Two or more connective tissue diseases is sometimes referred to as mixed connective tissue disease(MCTD). If you explore the links that Shelly and Jefa provided you'll find that there is also dermatomyositis (DM) which is PM with a rash. We have a few members with DM as well.

As a type of myositis, PM affects the muscles, usually those closest to the trunk. For me it was everything between the knees and chin. I don't have pain, just tremendous muscle weakness. As Shelley mentioned diagnosis is initially a high CPK (or CK). Normal is below 200. Anything above that indicates inflammation of the muscle. I also had the EMG and muscle biopsy to confirm PM. My CPK was at 3000. Like you, I started on methotrexate pills (I'm assuming those are the pills you're taking), then went to once a week injections that really did the trick. Last year I developed lung problems so was taken off the MTX. The treatment that has really worked for me is an IVIg infusion every 6 weeks. My CPK is now normal and the energy boost I get from the infusions is incredible.

Life has changed, but it's still good!

Big Hugs,


Janey Willis
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International Scleroderma Network (ISN)

#8 Stacey

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Posted 21 November 2007 - 04:22 AM

Unfortunately my diagnosis is pretty much on the money. Like you Janey my CPK levels were extremely elevated back in August. They came back at 8000. I'm on Prednizone right now and as of about 2 weeks ago it has came down to 427. Did you have many side effects from the Methotrexate? I am on the shot once a week and the day that I have the shot is usually a pretty rough day. I usually feel very sick.

#9 janey

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Posted 21 November 2007 - 04:54 AM

WOW - 8000! I bet you felt like a limp noodle at times. I know that's how I felt. How much prednisone are you taking? My rheumatologist wouldn't put me on more than 5 mg/day because of the problems with prednisone and scleroderma. Here's a section you might be interesting in reading.

Glucocorticoids, Steroids (Prednisone)

The only side effects I had from the methotrexate were being tired on shot day and somewhat groggy the next and thinning of my hair. I never felt "very sick", but people react differently to the same meds. So other than that, I managed the MTX just fine. I got my monthly bloodtest for liver enzymes and they were always normal. Please be sure that you are on birth control while taking MTX because it has been proven to cause birth defects.

I know you mentioned children which is definitely a possibility. There are women in this forum that have had children after diagnosis. You just need to be sure to consult with your doctors about it and make sure that you are off any medications that could cause problems.

BTW - You're CPK came down fast! That's great! It took at least a year for mine to get below 500. Congratulations! I hope it continues to fall and get back to normal. Are you starting to feel the effects of the drop in CPK? I hope so.

Big Hugs,


Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#10 Stacey

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Posted 21 November 2007 - 07:10 AM

Well he started me out on 60 mg a day and now I am down to 30 mg a day. We are hoping to have me off of them ASAP. I had no idea that there was such an increased risk of me being on the steroids and having sclero. They are watching me very closely so I'm hoping that it continues to go well. I'm starting to feel so much better since my CPK levels have came down so much. The side effects of the prednizone aren't so happy though.

I'm glad that my levels have dropped so fast. I'm sorry you had to wait a year before yours came down below 500.

It's a vicious thing thats for sure. Do you mind me asking you how long it took from your first sign of PM to get diagnosed? The doctors are quite shocked because in April of this year my CPK levels were normal and by August they were at 8000.

#11 Lillskuzi

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Posted 21 November 2007 - 08:12 AM

Hi Stacey

I know where you are coming from; I'm 25 and wondering if scleroderma is likeley to ruin the chances of having kids. You are not alone and it is a really hard thing to have to think about at this age.
Susie

#12 kelsey

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Posted 28 December 2007 - 04:05 AM

Hi Stacey, I don't know if you still check this forum cause it's been over a month, but I wanted to share that you are not alone. I am a 23 year old Caucasian, married woman who was diagnosed with scleroderma with an overlap of polymyositis in early 2006. I also have Raynaud's and since I live in a cold weather climate, it is a constant battle. The scleroderma has also affected my internal organs, giving me interstitial lung disease and scarring my lung tissue. I went on prednisone and was on it for over a year, starting at 60 mg a day. My CPK was also very elevated although I don't know the exact number. The prednisone helped me immensely. It was somewhat a miracle drug, bringing my lung situation and CPK completely back to normal. However, I have been off of the prednisone for a few months and starting to feel problems again. I don't have muscle weakness, just intense pain in my shoulders and upper arms. It hurts to lift my hands up or get dressed in the morning. I have been on another medicine, plaquenil, that is supposed to have less side effects than prednisone, but I don't know if it is being as effective. Anyway, it is nice to know I am not alone because I know that my family is supportive but never even heard of scleroderma before I was diagnosed. I have no family history and have no idea where I got it. I have been very positive about it the last year and have not been too worried. However, lately I have been getting scared. Is the reason you can not have kids because of the scleroderma? My husband and I want to have kids soon, so that concerns me. Well, I will keep you in my thoughts and I know that my faith is in control of my body and will see me through this illness.

#13 RememberingToSmile

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Posted 28 December 2007 - 10:19 AM

Hi there-

I was diagnosed with diffuse scleroderma with myositis, Raynauds, GERD 18 months ago (or so). I am now 45, but I attend a myositis support group where there are several myosists patients in their early 20s.

It has been a roller coaster, but I am optimistic I am getting the best care from my doctors. I had an early, intense episode of the myositis followed by agressive scleroderma, then as the sclero went into remission (skin softening, and all), the myositis flared up again.

This board has been a great source of information and support - (hopefully you've been through the archives) In addition, the myositis association has a great community site and bought me in contact with others with the myositis component.

-RTS

#14 WestCoast1

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Posted 01 January 2008 - 06:10 AM

HI Stacy and welcome to the Forums. I am so sorry that you are struggling with the side effects of PM and Scleroderma! Please stay in touch and let us know how you are doing.
*WestCoast*

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#15 emmie

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Posted 01 January 2008 - 06:36 PM

Hi Stacey,

Another welcome to you. I also take plaquenil as do several others here. Don't know if the dr. told you, but it can take some folks up to 6 months to feel the effects of plaq. For others it is just a matter of several weeks. Regardless, the effect is usually not noticed because the length of time it takes to be effective is so long.

Most people I know of, myself included, have found that if they have to discontinue plaquenil for some reason, they definitely know it! Hang in there and let us know how you're doing.

emmie

#16 emmie

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Posted 01 January 2008 - 06:38 PM

oops!!! I goofed on my lost post directing the reply to Stacey instead of Kelsey. Actually, I do this sort of thing many times a day so please, don't take offense.

So welcome to you both!

emmie

#17 Stacey

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Posted 17 January 2008 - 06:38 PM

It's been a while since I posted anything on here. But to answer your question Kelsey, the reason I haven't had any kids yet is because we wanted to wait for a while after we got married and now I've been so sick. I'm currently down to 10mg of Prednizone a day and am looking forward to the day when I no longer have to be on that or the Methotrexate.

Because of my seizures in October I will be on the anti seizure medication for 2 to 3 years and then if I haven't had any seizures will be able to go off of it.

It has been determined the reason for the seizures is my high blood pressure at the time. When I got to the hospital it was 214/150 or something like that. (I was unconscious because of the seizures)
Definitely a life changing event.

I was on Plaquinil for about 2 weeks before I was diagnosed. I didn't like it and decided to go off of it because at the time we were going to plan on trying to start a family. I don't want to be on anything that can remotely affect a baby. At that time I was starting to have bad symptoms but I was managing ok for the most part.

As of December 6 all of my muscle enzyme levels are normal! I was so excited when I got the results. It's been so hard to stay positive since my hospital stay but knowing now that I am on the road to recovery has been a definite highlight for me throughout the holiday season.

Stacey