nickyhj

New with Morphea Scleroderma

8 posts in this topic

Hello,

I was diagnosed with Morphea Scleroderma about a year ago. I am 22 and it is mainly on my arms and shoulders.

I have been seeing a dermatologist as my local hospital and she has recently suggested I try Methotrexate. I was just wondering if anyone else had tried this and kind of results it gave and if they experienced any side effects?

I was also offered the option of a PUVA treatment so I also wondered if anyone had used this and what results they had experienced? I'm currently trying to decide which is the best option.

 

I also wondered if I should attempt to see a specialist who had more experience with my condition and if anyone could recommend anybody?

 

Thank you for your help.

 

Nicky

Share this post


Link to post
Share on other sites

Hi Nicky,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with Morphea Scleroderma and you will find that the link I've given you will also include Methotrexate and PUVA therapy which should give you some more information.

 

I know quite a few of our members do take methotrexate, although not necessarily for Morphea and I expect they will be able to give you more first hand advice. In addition I've found a thread discussing Morphea and various treatments including methotrexate and PUVA which I hope you'll find interesting and useful.

 

We do recommend that you consult a Scleroderma expert as sadly many rheumatologists do not have the expertise to deal with this complex disease and the link I've included lists specialists in the UK. The Royal Free Hospital is a centre of excellence for the treatment of Scleroderma (I'm a patient there myself) so it would be beneficial for you to be referred there if it's at all possible.

 

I'm pleased that you've found our forums and look forward to hearing more from you.

 

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)

Share this post


Link to post
Share on other sites

Hello Nickyhj

 

Welcome to the forums! I have both systemic scleroderma, morphea and bullous morphea (blistering form of the disease) again! You post is good timing because I am having a morphea flare with huge plaques appearing on my thighs and growing and growing.

 

I was on methotrexate for over a year and can't really say whether it made any difference to either my systemic or localised scleroderma, I have also been on mycophenolate and can't say whether it made any difference either but that's just me. After 5 years I have decided to stop immunosuppressants completely, despite being on them I still developed myocardial fibrosis and heart failure, bullous morphea and more morphea plaques but as I say that's just me. The methotrexate was a once a week dose and made me feel sick and tired for about 2 days afterwards but after about a month the side effects went away completely but then after a year they suddenly came back so I stopped taking them methotrexate.

 

Having said all that I do know of others that have had great results from methotrexate so you loose nothing in giving it a go yourself. Those of us with scleroderma, whether localised or systemic are all so different and all fare so differently that the only way to know about the methotrexate is to try it yourself and if you do give yourself about 2 months to see if the side effects, if you have any, wear off.

 

I have never heard of the ultraviolet light therapy working but you loose nothing in trying it because it might work wonders for you.

 

My understanding it that morphea can be treated by a dermatologist rather than a rheumatologists and here is a list of scleroderma experts that includes both. The list is provided by the Scleroderma Society and you may want to have a look at the local groups they host throughout the UK for people with scleroderma and related illnesses, you may find it helpful to make contact with them. I host a local group for Essex, London and Kent, a bit of a trek for you but you're welcome to come, the next meeting is Saturday May 26th, PM if you would like to come.

 

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)

Share this post


Link to post
Share on other sites

Hi, Nickyhj!

 

I used Methotrexate for 3 years and don't remember of any side effects. :)

It was Methotrexate 20 mg once a week (on Mondays) and 5 mg of folic acid in the next day.

I have CREST scleroderma, diagnosed when I was 25 years old (now I'm 30), I was very well with Methotrexate till I had a big emotional stress a lot last year and had various digital ulcers; then my rheumatologist changed it for Azathioprine (Imuran); I got better but didn't note such a incredible difference in the results of these two medications.

Now I'm having articular pain, and she said I'm gonna back to Methotrexate because it's better to joints.

I joined the forum recently and I'm loving it! Welcome!

 

Hugs

 

Ro

Share this post


Link to post
Share on other sites

Hi Nicky! I'm a bit late joining in to welcome you! I'm SO happy you found us!

 

Though I don't suffer from the Morphea form of Scleroderma, I have used both the PUVA and Methotrexate treatments, although my treatment was for my

very extreme case of Psoriasis.

Though I am not a doctor, nor have I any medical background, I would feel very comfortable with your trying the PUVA treatment first, to see how your skin responds. Your exposure time would be very low, to start and increase, over time.

 

If you are treated with Methotrexate (MTX), you will need to go in for labs on a regular basis, ordered by your doctor.

Whichever treatment you are given, please let us know how you are doing!

Please keep us in the loop! :emoticon-hug:


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi everyone,

 

Thank you all so much for your help. The links and information you have all provided have been very helpful.

My next appointment with my doctor is not until the 21st of August so I have some time to consider my options and I will definitely use the information you have provided to help me.

I will keep you updated with my decision and progress in the future.

Amanda Thorpe unfortunately I cannot attend the meeting on the 26th, I am currently studying for my accountancy finals so my weekends are spent studying, but I will keep my eyes open for future events and try and attend some.

 

Thank you all again. I look forward to speaking to you all more in the future. :D

 

Nicky

Share this post


Link to post
Share on other sites

Hello Nicky

 

Thanks for the reply, the next meeting is Saturday September 29th @ 2p.m. and you're welcome to come then as well. I hope your finals go well!

 

Take care.


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)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now