8 posts in this topic

Just diagnosed with scleroderma, most likely systemic. Waiting for more test results. My doctor has given me a prescription for Methotrexate. He said he does not know if it will help me or hurt me and that it is my decision. What? Really? I don't know what to do, I am so scared. Please tell me your stories on this medication.

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Hello Sunflower,

 

I am very sorry that you have come away from your Doctor feeling scared, that is not a nice way to be. You don't say what sort of Doctor you consulted in this case. Is it just a general practitioner, Rheumatologist or other Specialist?

 

You really need to be consulting at least a Rheumatologist who knows about Scleroderma (not all do) and at best a Scleroderma expert. You don't say where you live so I can't say whether or not I think you have access to somebody good.

 

As far as Methotrexate is concerned, I have never experienced it, probably because my diagnosis came so late in my life that all the damage was already done, but others have. You will find that they have mixed opinions about it. Some will way it is a life saver and others will say it is a problem. I am sure others will chime in with their opinions.

 

In the meantime, try not to be scared - it won't help - worrying won't help either although I know how hard it is to be calm. Just remember that you are your own best friend when it comes to getting to the bottom of these questions. We here will help, just keep in touch and keep asking about the things you want to know.

 

Warm hugs and best wishes from the upside down side of the world.

JudyT

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Hi Sunflower,

 

Welcome to these forums!

 

I'm sorry to hear that you're feeling so worried and scared; it's very unfortunate that you should go to your doctor for help and reassurance and come away feeling worse than before!

 

As Judy has advised if possible you should really try and consult a Scleroderma specialist as sadly many rheumatologists just do not have the knowledge and expertise to deal with such a complex and unusual disease. I've also included a link to the ISN Guide to Scleroderma experts which I hope you'll find useful.

 

I'm not a doctor and have no medical training, but I do feel that just to prescribe a strong drug like Methotrexate on a sort of whim is not very helpful to you and I'm afraid it wouldn't give me much confidence in the doctor concerned! Methotrexate is an immnuosuppressant which is used to suppress the immune system in diseases like Scleroderma; I take another immune suppressant but this was prescribed to me by very knowledgable specialists. Even so, it's strictly monitored with blood tests and particularly at first, it needed a little tinkering with the dosage in order to get the best result.

 

I've found another helpful thread on Methotrexate to give you some more advice from our members; please do post again and let us know how you get on.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Sunflower

 

Well I also suggest you see a scleroderma expert ASAP particularly if that's how your current doctor introduced you to methotrexate!

 

It is true that with every drug there are side effects and we often have to weight up what's worse, the symptoms of the disease or the side effects of the medication. However, if you have just been diagnosed with systemic scleroderma I would suggest that you try an immunosuppressant to be on the safe side, the idea is to try and prevent as much damage from the disease as possible as soon as possible.

 

I took methotrexate for over a year (I think?) and has nausea to start with for about 2 days after the weekly dose but then this went and I had no side effects at all. However, very suddenly the side effect came back and I discontinued it in favour of trying mycophenolate again.

If you try the methotrexate and can't tolerate it then there's always mycophenolate which I thought was the best tolerated of the immunosuppressants?

 

Chances are you are going to be one some sort of medication now for the rest of your life because of the scleroderma so you might as well bite the bullet now.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Sunflower

 

Been there, done that and I know you are not in a good place right now because you are so scared but that will ease in time for you although you may not think that just yet.

 

Can I please recommend that you do not go and read all about this disease on the internet? You will find the best and more importantly, factual information from this site. Just ask all the questions here you want and rest assured there is always someone in the 'know' from experience willing to help.

 

If you do say the general area in which you live, one of the ISN leads will be able to provide you with a list of sceroderma experts either in or close to your general area. The best thing I ever did for myself after my scare like that was to see a scleroderma expert.

 

I do hope you tell us a little more about yourself if you are feeling up to it. If not, that's ok too. It's all very mind boggling to say the least, especially in the beginning. Slowly, with some answers to your questions, all the bits and pieces you glean from here will help you to understand this disease a little better. Take care.


Sending good wishes your way!

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Welcome!

 

I'm in full agreement with the others. Scleroderma Expert is in order. I've been diagnosed for 12 years now, and through all my experience and rallying with other Sclerodermians, Plaquenil is usually the first drug of defense. Please bring this up at your new appointment. Methotraxate is usually the second one they use if Plaquenil was not helpful.

 

Keep us posted, and again welcome!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi sunflower,

 

I also would like to welcome you! If you must have this illness (like many of us here) then I am so glad you have joined our Scleroderma family.

 

Oh...I can SO relate to being scared about being diagnosed with Scleroderma, but as I posted on another thread (just a bit ago), the more educated you become about your illness(es), the better an advocate you will be for yourself and feel great empowerment.

 

I used Methotrexate for 13 years; I first took it in pill form, then drank it in juice and for the last 6 years, injected (subcue) into my thighs. I followed the latter regimen, injecting alternately, once each week. Should you use Methotrexate, taking Folic Acid is very wise to do, as it helps alleviate the nausea that can come from the MTX use.

I (for one) am quite surprised the doctor you went to chose to start you with MTX. I am not a doctor, nurse or anything close to it, yet I'll be interested to hear your reply to the other ladies, as to the kind of doctor this is, as well as your responses to their other questions.

 

Please keep us posted.

 

 

ALL of us (who have Scleroderma) can empathize with what you are now feeling, but please rest assured... there's great comfort in posting here and building the friendships that exist; As a matter of fact, I am SO fortunate, in that I have friends here that I never would have "met", had it not been for this awesome site that {{{{Shelley and Gene Ensz}}}} are responsible for creating. The folks here are WONDERFUL and are caring and very sharing of their experiences, when they feel it can helps someone else. Plus, it really helps to have others to share with who have a common denominator, as we all do. We really ARE "One Big Family", so please, post whenever you feel like it....We ARE here and we will be!

Glad you have found us and just so you know...this feeling you have right now...WILL pass.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi sunflower!

 

Sorry you have to join this group, but hopefully you will find some answers to your questions here.

 

I've just started Methotrexate myself, just over a month ago. So far it isn't helping, but it can be a few months, so I'm going to be patient (the Plaquenil didn't help me, so I'm worried this won't either). But I haven't noticed any major side effects from it, either. So that's good. I'm taking 5 mg of folic acid on the days I'm not taking the Methotrexate (you can't take it on the same day because it can detract from the medication).

 

So that's about all I can tell you from my experience. I did email a scleroderma expert about it before taking it, and she said that it's usually well tolerated and safe.

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