SandraMarie11 years ago

I have not been prescribed anything for CREST, do you know which element it is supposed to be treating?

stevieboy in reply to SandraMarie11 years ago

A bit of everything as it damps down the iummue systum .

If it works for you it will do wonders .

Reply (0)Report

grannyannie11 years ago

Hi SandraMarie

The methotrexate was suggested not especially for CREST but for inflammatory arthritis, I understand it dampens down the immune system which I believe causes Crest as well as the arthritis.Sorry to mislead you. As far as I know there is no cure, it is just a case of treating symptoms. Sorry if I got your hopes up.

chillie11 years ago

HI

I was advised to consider taking methotrexate, as i suffer from swollen puffy hands due to

raynauds, finger ulcers tearing skin plus all the other lovely delights of sever raynauds can throw at us , but after reserching the side affects, things like hair loss liver problems constant rashes,not counting screwing your blood count up , when taking this you also have to have regular blood tests, whch you have to keep a record of just in case you have to see your GP, i would think long and hard before going on this drug do some reserch.

good luck

stevieboy11 years ago

Well really there is no such thing as crest and here the name has changed to something else .

Yes Methorexote would help .It helps me a lot .How ever does not suit everybody the reason they do lots of test before hand .You can only get it from a hospital its hospital based they do all the saying .Took once a week you may need folic acid takes 12 weeks to kick in .And if it works its wonderfull .

stevieboy11 years ago

The side effects don,t affcet every one is what the folic acid is for .

Not every one has hair loss i dont have it .You get checks every month you would be took of it very quick if some thing was wrong ( is why hospital is involed )

The side effets may not last long you may not get them or you may feel odd for a few weeks the benfits are well worth it .Stop restraching and go on it ..Hospital likey knows more then you think and you can see someone for concellseing before hand who will go though all side effects .Me the best thing i did going on it .Got life back

SandraMarie11 years ago

Stevieboy why do you say that there is no such thing as CREST, do you know anything about it? because I can tell you I do have everything that each of those letters stand for!

mirandamae197111 years ago

I was on Methotrexate for a couple of years. The specialist down in Chicago took me off because of the lung involvement, they said that methotrexate can cause lung damage. I am now on cytoxin (sp?) It seems to be working well.

lifeforce11 years ago

I have had scleroderma for 12 years, the first 7 I took methotrexate once a week along with prednisone. It certainly helped. The folic acid helps to protect your liver from effects. It did not make my hair fall out,or make me feel sick. I stopped taking it 5 years ago after my condition has improved somewhat and I was tired of taking blood tests so often. I still use 5 mg. prednisone for the arthritis and am doing okay. We had a 5K walk, run recently to raise money for the Scleroderma foundation and I made the 3 miles without a break. At one time I could not climb a flight of stairs. Good luck to everyone!!

grannyannie11 years ago

Thank you all for your replies. When you read the side affects it seems a bit daunting.I think it's a case of 'suck it and see'.

I know they have changed the name of CREST to LImited Subcutaneous Systemic Sclerosis [ I think that's right, not sure about the spelling ]; but CREST seemed easier.

Best wishes for winter to everyone, keep warm!

Hidden11 years ago

I've tried methotrexate. I was concerned about the possible side effects and chose to stop taking them. However, I would have had to stop taking them anyway as I have had shingles - twice, in the space of less than 5 months.

I know two people whom have taken methotrexate and seen the benefits of taking it. Although they don't have Scleroderma (one has ankylosing spondylitis, the other has psoriasis), it has worked for them.

If you do choose to take methotrexate, it's important to have a blood test every few weeks (especially at the beginning of treatment).

grannyannie in reply to Hidden11 years ago

Thank you for getting in touch. I have decide to give it a try.

Shingles can be very painful. Have had it round my shoulder blade to my rib cage. I got the anti viral very quickly, so wasn't quite so severe. Poor you to have had it twice in such a short time.

Reply (0)Report