Scleroderma recently diagnosed

[Whistler81]

I am seeking forum users experience with treatment with methotrexate which I’ve been advised I’ll be using.

[cwresearch]

Hi, I am sorry to hear that you have been diagnosed with scleroderma - this was me exactly one year ago too. I started then on tablet methotrexate - 15mg dose. It helped marginally, but not extensively, so I continually had to have steroids to help me manage. Over the past year, however, the dose has gradually been increased and the format changed, so that I am now on 22.5mg and an injection instead of tablets. I now feel great and life is good again!! So, I would suggest that you keep a log of how you are feeling and report back to your Rheumatologist and do not be afraid to say whether your dose is working or not. They have the ability to increase it until they get it right for you. I hope that is all goes well for you - good luck and never hesitate to get back on the forum. All the best, Cath

[Whistler81 in reply to cwresearch]

Thanks cw. First positive comment received. I was beginning to think I may decline therapy and live with my lot. So many nasty side effects to read about with therapies. Good to hear they can be modified, changed or even stopped.

[Krazykat26]

I am on Methotrexate 17.5mgs currently..for Lupus. I have had no problems taking it apart from initial side effect of slightly impaired vision n some numbness in my left arm. That was only on the first couple of doses though n lasted about half hour. I started it in 2019 n I'm able to tolerate the tablets well.

Your Dr should also prescribe Folic Acid ..I take 5mgs every day EXCEPT the day that I take the Mtx.

Its been life changing for me..would certainly recommend it. Tbh all medications have side effects but if you don't try it you won't know if it will help. Good luck whatever u decide 🍀🌈😽😽

[semmmmy in reply to Krazykat26]

Metotreksat i folna kiselina se ne smije uzimati zajedno ,jer folna kiselina umanjuje djelovanje Metotreksata.

[positivedaybyday]

HI Whistler81,

So sorry to hear of your diagnosis, it can be so earth shattering!

I haven't used the medication you mentioned but be steered by your team & here are a few suggestions for you to consider.

Cw is right, keep a record of how you are feeling on a day to day basis. This includes not only reaction to medication but also how your body feels e g new aches/strange symptoms & also how you are coping mentally.

This helps tremendously when you see your Rheumatology team as there are so many aspects to the illness. The main issue is that each case is individual to different degrees.

There are many leaflets on how Scleroderma can affect the body. You can ask for these from the hospital. They're worth asking for so keep a binder with them in for reference purposes. The leaflets cover a wide range from diet to Secondary Raynaulds, skin & much much more.

Your team will be able to refer you on to different areas in the hospital which may help you dependant on your individual problem. This is why a diary is so important.

Take a friend/partner with you at your hospital appointments so they can support you & learn about the disease at the same time. This is so important as they too will feel overwhelmed with your diagnosis.

It also helps if they can jot down answers to questions you may pose as sometimes it's hard to take in all the information.

The main thing is don't feel afraid to ask any question no matter how difficult.

A BIG hug to you on your new journey, we're all here to help & support you at every stage.

You will muster courage throughout this journey & although difficult at times "positivity" is a great weapon!

[Whistler81 in reply to positivedaybyday]

Most helpful. Similar advice I’ve had with late onset Type 1 diabetes (at 67yrs) which I hardly consider now with good management. As a non-smoker, non drinker always athletic it is tough to take. Easy to self blame … what have I done? But these autoimmune things are without blame. I had severe Carpal Tunnel syndrome early in the year relieved by surgery but now learn it was an early symptom of developing scleroderma.

[positivedaybyday in reply to Whistler81]

Thats the last thing you should do, blame yourself! The disease picks its targets for no particular reason & it comes out of the blue

I myself was 63 when my body went berserk. Prior to that I was also very active which makes this condition as you say hard to take in!

You will learn with time to pace yourself & stop being hard on yourself. The latter for me took a while to overcome as I've always been independent, to ask for help with simple things was extremely difficult.

There are signs we're unaware of from our past which could have pointed to this disease but until it decides to raise its ugly head its so difficult to identify.

I remember my mum years ago when I was 21 speaking to my husband to be saying "Look after her, she's not as strong as you think". I dismissed the comment at the time & never did ask my mum why she thought that? Maybe she had a mother's intuition?

In my case its partly to do with genes & the disease also needed a trigger. It got its nasty way late 2016 when I had a very bad bout of flu & never recovered as my body turned against itself.

Although I've had a tough time I often read of fellow sufferers in their early 20's. To me I'm lucky as I've had my life & will fight at every stage. I really feel for those diagnosed at an early age who may have small children or are thinking of starting a family. To me that must be the worst of the worst.

We all need this site to exchange our experiences, ask for help or just want a shoulder to cry on when we have a bad day.

So don't forget we're here for you no matter what!!

[Whistler81 in reply to positivedaybyday]

What a lovely response. You must be reading my mind … at 69 I’ve had a wonderful life and shouldn’t feel sorry for myself. Trying to stay positive and upbeat … forum comments are very supportive and helpful.

p.s. I donate to childhood diabetes research.

[cwresearch in reply to positivedaybyday]

I love your handle and so agreed with you. I too, at then aged 67, suffered out of the blue and was initially devastated! It took a long time to change my outlook and my attitude. Like you, I can look back and see that there were signs, but we are good at ignoring them! I am now doing well and consider that a wonderful thing, as I enjoy life and recognise how it could have been very different if I had not been quickly diagnosed and eventually on the right medication. I look forward now. Thanks for your lovely reply and good luck.

[MilkMaid]

Hi Whistler81. Methotrexate has worked well for me. It does take a while to build up in your body - about 6-8 weeks before I noticed a difference so don't be disheartened if nothing improves straight away. Only side effects for me were fatigue for a couple of days after taking MTX and a bit brain foggy but these side effects faded after a few months.

Good luck

[Whistler81 in reply to MilkMaid]

Still not started any therapy. Rheumatologist remains unconvinced I have scleroderma. This is on the basis of the lab test SCL-70 being negative.

My question therefore is: can I have scleroderma with a negative SCL-70 blood test?

I read about the test having quite a high false positivity rate (40%) but unaware of false negative.

[MilkMaid in reply to Whistler81]

I only have skin involvement - loads of morphea, but also had negative SCL-70. Had two different doctors independently agree it was Scleroderma - one NHS and one private. Anyway, MTX works for me so if that's what your consultant recommended then give a go. Good luck.

[Joanne04]

My son who was diagnosed at 17 with psoriatic arthritis started methotrexate, he is just turned 19 and said it was definitely worth taking as it has made a difference, he is on 15mg and folic acid the other 6 days. The worse side effect he gets is mouth ulcers, next week they are going to trial the injections instead.

He was grateful to read this and different posts and likes to be of help to others as well. I support him as he has autism as well, so he would recommend it and he is a young age with a long way to go. He knows his body And likes people to understand how his body may feel daily.

[cwresearch in reply to Joanne04]

Good luck with the injections - I started a few months back and feel that they are wonderful! I hope they are for your son too! Good luck!

[Runningblind]

here’s a safer and potentially better option of suppressing the disease overall. All those other pharmaceutical drugs just treat symptoms and don’t stop overall progression and damage

youtu.be/iWT0oW8FRdE(Not working as expected?)