hi all i have diffuse scleroderma and raynauds and i am on chemotherapy.

[llindylou]

i would like to know if anyone else is and if it has made any difference to them.i have been on it for 6 months now.

[Roamer]

Hi....I have the same condition and was offered chemo, but opted to try mycophenolate first which definitely helps me (at the moment).

Sorry I'm not quite in the same boat, but I'd like to understand more about the chemo. What does it entail?

[lakemon in reply to Roamer]

I has Raynaud's, scleroderma with pulmonary fibrosis (on oxygen 24/7) I have just started mycophenolate (4 tabs day). Could you explain how this drug is helping you? The doctor told me I would see results for at least 2 months. Thanks

[Roamer in reply to lakemon]

For me....my skin score has improved (from 26 down to 11), so it has definitely helped with the thickening. Also it affects how fatigued I feel. I've been switching between doses for one reason or another - there's always a delay of a week or so in between changing the dose. However, if the dose goes up then I feel much less fatigued, if it goes down or stops I'm knackered! If I don't take mycophenolate I feel exhausted, 1g a day and I have a constant level of fatigue, 2g a day I feel much better....so next we're trying 2.5g a day. I hope that it helps you too.

[llindylou]

hi roamer

i was supposed to take chemo by infusions but due to my hard skin i could not take a canular(hope i spelt it right) i now take it orally taking sildenafil,prednisolone,cyclopthosphamide,mesna,and cotrimoxazole, all within 3 days once a month i feel that it has soften my skin but no change in my pain in my joints, i also have lumps on the bach of my head which are very painful,as for the raynauds it seems that is no better i just can't go outside when its cold.before this i was on methotraxate altho it didn't help the scleroderma my psiriorsis dissapeared but has now returned with avengance , i only had it on my feet,knees ,and elbows but now have it under my breasts down below and on my knicker line which is causing me much pain.

[living-the-dream-ssc-ray in reply to llindylou]

Hi lindylou ! Bless you ! I was on that concoction for a year or so until things became a little less aggressive ! ew the nausea not so pleasant !

I was then transferred to 2g Mycophnolate for about 5 years or so. I have not taken anything like those meds for nearly 8 years now so hip hip hooray ! The Scleroderma and Raynuads adventure started very aggressively for me in 1997. The mycophenolate definitely helped my skin in that the elasticity reappeared as well as hairs began to grow on my arms- which excited Prof Denton immensely- he was the only one pleased with my grizzly bear impression lol

I am dedicated to my daily skin care regime of bathing in Oilatum, moisturising with Hydromol and then after 30mins, applying a layer of pawpaw lotion to my face, hands and knees. I was only introduced to pawpaw a few months ago and I am so pleased with the results - it has cleared the calcium lumps as well as reducing the telangistacia on my face so happy days ! It is only available in Australia but I got mine from makeyouwell.com . Unfortunately I have not been able to go to work for the last 5 years as the Raynauds is so disabilitating- Im currently on my 2nd 6month regime of Bosentan which definitely helps with the symptoms and fewer ulcers on my fingers and toes !

Stick with it Lindy, it is more than a walk in the park, and although I am not able to go to work I try to focus on moments of gratitude

[Roamer]

What a concoction! Do you suffer any side effects when you take it. Good that it is softening your skin. Mycophenolate helped to calm mine down and my skin score has improved.

Hope that you get some relief from your other pains soon x

[llindylou]

hi roamer

i do have side effects like constantly feeling sick.bad heads and nose bleeds , i am eating a lot less than i was but have put weight on i dont know if that a side effect or not . if you dont mind me asking which hospital do you go to? and are you happy with your treatment?

[Roamer]

That's rubbish

I'm mainly seen at the Treatment Centre at the Queens Medical Centre in Nottingham. They've been brilliant so far (all this only reared it's head just over a year ago). I can't praise them enough and touch wood the treatment is working. Where abouts do you go to?

[living-the-dream-ssc-ray in reply to Roamer]

Hi Roamer

great to see that the QMC caught up !

I was diagnosed with diffuse ssc there 15 years ago to be told to give up on my life ! I was prescriibed Tacrolimus which I persevered with until I went to The Royal Free Hospital in London for a second opinion - they were horrified that I was taking Tacrolimus and stopped it immediately due to the increased risks on my kidneys ! They eventually stabalised my condition with 2g Mycophenolate for about 5 years ! The Prof at the QMC was really rude to me when I told him that I was transferring my care to the Royal Free and advised me that mycophenolate was a new drug which had no data so I was taking a risk with my life !

So it is very interesting, and pleasing of course, for me to read about your success with the QMC ! And now I know that you live in Notts well no wonder you are a fellow lounge clubber lol UnfortunateIy I had to move from my house in Lenton at the end of 2004 back to my home town near the seaside !

Wishing you warmth and wellness x

[Roamer in reply to living-the-dream-ssc-ray]

Yes, they have caught up! Sounds like my experience is much better than yours was. They got me on the mycophenolate as soon as things escalated and they've been monitoring me closely. Touch wood it's calmed down a bit. It's scary when you're body is seemingly out of control.

Lounge club rules!

[llindylou in reply to Roamer]

the freeman in newcastle is where i am treated and have found them brill so far

[lollipop]

i have just started cyclphosomide infusions and would be interseted to hear how you are doing now

[Leochild47]

Hi Lindy Lou, I’m new to this site , just wondered how the treatment worked out for you?