Morphea treatment - PUVA or triamcinolone injections?

[Katie46]

hello,

looking for a bit of advice as I was diagnosed with Morphea a few months ago. I’m under the care of dermatology department. It affects my whole left arm, part of my rib cage and some of my right arm. The worst area is around my left wrist where the skin is particularly tight around the joint.

I have been prescribed Betnovate, a steroid cream. I can’t say I have noticed much of a different - it hasn’t really improved but it hasn’t got any worse either.

They have offered triamcinolone injections or PUVA light therapy to try and loosen the skin around my wrist. I get the impression it’s a bit of a trial and error as it’s quite a rare condition and there isn’t extensive research. The light therapy also requires attending the hospital a few times a week I think. This would really impact on my work and home life so I'm keen to know what others experience of this was. Has anyone had either the injection or PUVA light therapy? If so, I would be interested in whether it was effective or any side effects I need to consider.

Also, I was diagnosed with chronic fatigue/ME approx 10 years ago. I’m a bit concerned this might all be linked. I have raised this with the dermatologist but she isn’t overly concerned. Has anyone else had a similar situation to this?

Any help much appreciated.

Katie

[Who48]

Hi I was diagnosed with scleroderma my skin was so stiff all over my body, puva therapy did me the world off good and I would recommend this to anyone! Good luck with everything

[Midgebite21]

Hi, I have scleroderma (20 years diagnosed) I have had UVA1 phototherapy at Ninewells hospital, Dundee. I live near Edinburgh and had to attend twice per week for about 2 months. Luckily I was between jobs at the time. It was a big commitment but the benefits were definitely worth it. My skin softened considerably especially my mouth tightening. My dentist and hygienist even noticed the difference. I’m afraid you’re right with regards treatments being a bit hit or miss and experimental, having a rare condition means there is a lack of research and little funding for what research there is.

The only side effect from the UVA1 phototherapy was a tan. UVA1 is different to PUVA I believe. When I had my treatment there was only 3 UVA1 beds in the U.K. Dundee, Leeds and Royal Free in London but this may have changed. Most dermatology departments have PUVA though.

I can’t comment on the injections.

[emmamonica360]

Hi Katie, I had PUVA done 8 years ago for Morphea as well, it covered the majority of my torso and chest. I was also hesitant to undergo the treatment due to the time commitment and had put it off for a year. But after the steroid creams didn't work for me and the morphea had progressed, I decided to go for it. It was 100% worth it for me as it stopped the progression of the morphea and completely softened the skin, the morphea is now dormant for me and what is left is tan patches of skin. I would say it is definitely worth considering. It definitely gives you a major tan while undergoing the light therapy and you have to be careful while out in the sun but the benefit is huge. Best of luck with everything, if you have any more questions let me know!