Do I have to stay out of the sun?

Hi

I was diagnosed with limited curtaneous systemic scleroderma and secondary reynauds 2 years ago. My consultant advised me to stay out of the sun but didn't say why. I would like to know why, if anyone can educate me I would be very grateful. I am under a rhuematologist but don't think he is a specialist in scleroderma as his answers are very vague. I am taking ramipril, omoprazle (probably the incorrect spelling), viagra instead of the ilprost infusion, vitamin D.

Thanks

Bev

11 Replies

oldestnewest
  • Hi, I have the same conditions and about the same time since diagnosis. Given the medication that you are on I am not aware of the reason that you should stay out of the sun, but do double check the information provided with your medication. Pharmicists are also very good sources of info on dangers from medication (rather than the underlying disease). I HAVE been given this advice (or to wear strong protection ) but it is because I am on the immunosuppressant mycophenolate, which can affect the body's ability to prevent skin cancer.

  • Hi cowhide,

    You are right about checking with pharmacists, they understand how drugs work or don't work together and their interaction with the body. I have to avoid the sun, like you I'm on mycophenolate, so in stay out of the sun and use strong protection. Another thing I always do is to read the information sheets fully, good to find out any contra indications/ side effects.

    Always good to ask the experts.

  • My consultant has actually advised me to get out into the sun as it boosts the Vitamin D levels. I have the same conditions as you- but thought it was lupus sufferers who have to stay out of the sun?

  • Hello Bev

    I have the same condition and I do not stay out of the sun. Saying that I am careful and use sun blocker and not sunbathe. I just try and keep active walk rest.

    It may be down to your tablets. Just check with your doctors.

  • Hi, I'm also at a loss as to why they have suggested abstaining from sunlight as I'm sure sunlight is not contraindicated with any of your medications! But do enquire.

    I'm actually going to start a course of UVA1 phototherapy @ Ninewells Dundee to see if it will soften the collagen and slow down it's build up, and UVA is a sun ray!

    I have limited systemic sclerosis (CREST) with secondary reynauds also!

  • Thanks for all your replies.

    I am at the doctors on Friday so I will inquire then about the sun and possible contradictions with my meds. I am seeing the rheumatologist in April so we quiz him again about the sunlight. It would just be nice to speak to a specialist in scleroderma. I feel like i was told what i have but nothing else. When i ask about long term effects he says I'll just have to wait and see how it develops.

    I'm so grateful to have found this community, at least I can speak to others like myself who are suffering.

    My husband worries about my condition and asks me questions that I can't even answer.

  • I have found that I am now very sensitive to the sun so am very careful and put on sun screen, even during March and April and obviously onwards. I never used to be like that, being dark haired and olive skinned. I believe it is to do with the scleroderma rather than the medication.

  • Having Systemic Scleroderma/Raynauds w/lung and heart complications, I was advised by my Rheumy to avoid a lot of sun as around a year after my diagnosis, which was 2008. Being aware of the news media, medical updates through the years, the focus on Global Warming and witnessing the statistics of people that have been sun-worshippers development melanoma as well as other problem conditions, it makes a lot of common sense to me to not be soaking in the sun during peak hours. First of all, seeing footage on the news over the years of people frying eggs in a skillet on pavement in the sunshine on an extremely hot day is enough to gain my attention and reason that, laying on a beach or open sunshine on the grass . . . imagine those sun-rays going directly to and through the body. Heck, we already have an inner disconnect of the inner tissues. I got to events in the Summer later in the evening, or if it's not too hot, I still have a wide brim hat for protection, plenty of sun-block and find shad to sit under and haven't had bad reactions because of trying to practice common sense and adhere to my medical teams' advice. Hydrating ourselves with plenty of water is known to help everyone and highly recommended. We have been warned on many issues throughout the years, so now that we have these special conditions, we should be prepared and proactive in applying precautions and wise measures so we can still enjoy some of our desires and have as much quality of life as we can. We must stay in tune with our bodies, listen to them and adhere to what they thirst for and what they reject and act accordingly. Blessings to a Healthier YOU. Kindly, Thelma

  • I take prednisolone so my bones are thinning so having sun exposure is important to strengthen bones, but as i take mycophenolate the advice is to be careful. I can not take much vit D supplement as I also have sarcoidosis. Sunshine prevents many cancers and of course rickets, but it is important not to burn as it is a cause of skin cancer. Sunshine also brings a feeling of well being to many which is also important.

    I had a course of methotrexate and chemo infusions for my lung fibrosis and these drugs do not allow you to have sun exposure because they increase your chances of skin cancers.

    Please check back with your consultant and ask why, they will tell you and you should know as you are your own advocate in your own care.

    Good luck Helen

  • Far as I am aware, the medication mycophenalate I was prescribed has a warning to stay out of the sun or cover up well when outside in the sun. Presume it is to avoid skin cancer. As I live in Scotland....the chances of actually seeing the sun for any longer than 5 minutes is called Summer! :)

  • I love to feel the heat from the sun as I am always cols even in summer. I am careful not to burn though and always wear high factor sunscreen, at least 30 and 50 in India where we like to go in winter. I have scleroderma and also essential thrombocythemia which I take hydroxycarbomide, a form of chemotherapy. I was told to keep out of the sun due to this medication but I think as long as I am well protected I will continue to enjoy the warmth.

You may also like...