Does this sound like the normal process that scleroderma seems to go through?

Hello everyone,I have been quiet for a while,been looking after mum to the best of my ability. Methotrexate is in it's 4th week now,mum is no better yet I am afraid,she is actually hard and swollen to her skins absolute capacity! We are doing well with keeping her skin moisturised, 100% coconut oil from Holland and Barratt is incredible,even the rheumatologist said her finger tips seem very well moisturised,which I know can be a problem. We have had a bed sore to deal with but really got on top of it and it is nearly healed. The methotrexate is wiping her out still,the hospital bought her rheumatology appointment forward as she is suffering with the extensive swelling all over her body,her legs and ankles are definitely the worse at the moment,mum is now on hydroxychloroquine,typically this also takes a long time to take effect,we are still living in hope of a better quality of life and I keep reassuring mum of this,I then go home and worry,being 72 with this to deal with will have to take all her strength. Here's to the medication kicking in soon. Methotrexate has been in the news today and peoples comments on it are horrifying, I think I need to ignore comments in the papers maybe as other people call it a wander drug! I hope to report mums smile returning very soon. I cannot fault our care team here in Poole,Dorset, they are efficient,thorough and very sympathetic. Speak to you all soon,thank you for letting me get it all off my chest, phew,what a disease this is,long diagnosis and long waiting game for meds to take effect. Sorry about the essay! Xx

8 Replies

  • Hi,

    I am not sure if your mum has ulcers on her fingertips, just in case, I would like to recommend CORPITOL which did wonders to my ulcers.

    All the best.

  • Hi sootie1, thank you for your reply,fortunately mums fingers, apart from being bent and very hard are really good on the tips at the moment. I will most definitely be writing down corpitol in my ever growing scleroderma file. Thank you so much. Xx

  • It will take 12 weeks to start too work .Then you might notice the differance each week ( small differance )

  • I was slightley poorley while waiting for MTX to work also the wiped out feeling went with me as soon body got used to it .I call it a wonder drug as was not walking before and now i walk anywhere .I think still earley days .if it works well its wonderfull .Also will make you fell a bit sick untill used to it .

  • Hi stevieboy,thank you so much for your reply, I almost jump up and down when I see I have replies,it is such a support. Your story is encouraging,I am so glad that MTX is a wonder drug for you. Strangely enough only today we have had news that mums liver is being compromised so they have halved the dose to 3 tablets instead of 6, of course I guess that will mean an even longer wait for the MTX to get in the system :( Mum is encouraged by the feedback when I tell her, she is particularly worried that she simply cannot walk any more and feels she never will so I will happily pass on your story. Thank you. Xx

  • Hi Just to say even on 7.5 mls Mum might still feel yuk as not got used to it . If MTX works its wonderful .Yes it very offton affects liver .Is what the monthly blood tests are for checking things out .( I put stevie boy on here but i am a lady ) I used to use a wheel chair as could just get to garden .Now different story i walk every where drive swim .Used chair as like going out with husband .

  • Hi everyone it has been so encouraging to read this post as I have just started MTX today and was worried about how it may affect me, I to struggle with walking because of pain. So here's hoping !!! Sparkles so sorry to here about your Mum and I do hope she gets some relief soon take care Ruthie

  • I hope the drug kicks in soon for you. I am on a different drug but it has taken time for it to kick in but despite feeling so much worse at first, after 3 months, I am putting on wieght, joining in more normal activities to some degree, am not so anxious and can cope better with any progression of the condition. We are not alone and we have a future and I have left behind that hopless feeling and am able to look forward now.

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