Sorry for the lack of updates,things have been a bit busy as of late. Last post I was wondering if my next would be my last, but it certainly wasn't. On Friday, the dosage was raised again, still no update from my Doctor about how my more session so I only booked in for Monday. I found my neck/ chest to be a bit red after but not as bad as it has been before. Again, another weekend of work and SPF 50 galore! Saturday was a bit of a washout but Sunday was a fantastic day with lots of activity around.
On Monday it was decided that I would wear a tshirt during treatment, this way the light would be aimed at my legs and arms (sleeves rolled up) as these areas are still stubborn. I wonder if this is due to having gone through light treatment twice before, as it would usually be on the way to being clearing before now. The Doctor approved 2 more sessions, so I booked in for Wednesday and Friday.
A rheumatologist visit on Tuesday, finally decided to start Stelara. I was given the prescription, two doses of 45MG, one at week 0 and another 30 days later. I told the nurse at light treatment this today (Wednesday) and she has asked me to hold off on taking it until I've finished light treatment because it could make my skin more sensitive to light. She said my skin on my legs/thighs looked to be finally coming along. My next session was to be my last but she still wasn't happy to let me go, and neither was I to be honest especially when I finally see results again.
We decided another 2 sessions next week and that'll be the last of it. Only two next week due to Monday being a bank holiday here in Ireland. I was happy to do so, and she kindly wrote a note for work as I have to miss an hour or two on Wednesday, but thankfully have Friday off.
I plan to try and start Stelara on the Friday I finish light treatment, May 8th. It is the latest I can take it without the hassle of having to bring it abroad with me 30 days later, instead my second dose with be the day before we fly out.
So 26 sessions in and 3 to go, I'm looking forward to finishing up especially if the good results continue. I still have my fears about starting Stelara, but thankfully some fellow Psoriasis sufferers have reassured me, if this doesn't work, move on to something else! I have to be positive and keep the negativity at bay, everyone has their moments.
I have been compiling a post about products I find helpful for moisturising and concealing facial Psoriasis and easing sensitive skin so stay tuned for that.
Until next time....
Sarah x
Blogging about my experience, living with Psoriasis. Hoping to share tips and what works for me.
Wednesday, 29 April 2015
Wednesday, 22 April 2015
Final week?....
Hope everyone is well and enjoying this usually fine weather we've been having (shocking for Ireland anyway)
Just wanted to do a quick recap of this weeks sessions to date. I was hoping to add a few pictures of my skin at the moment but it's so awkward to get some angles but I hope to update on that soon.
Monday, I remained at the same time as Friday, 2minutes and 55 seconds. The nurse was concerned about abnormal redness on my arms. While the weather had been nice over the weekend, it had still been fairly windy at work so I kept my arms covered so I myself was baffled as to why my arms were so red. After the talk of maybe wearing a tshirt during the treatment, she advised against it. I was no longer using the step, and used the visor for the first minute of treatment.
Today, Wednesday, I moved up to 3 minutes and 4 seconds. Same thing again, no tshirt, and visor for the first minute. She discussed with me that she would be in touch with my dermatologist about extending my light treatment as my 24th and final treatment is due to happen this coming Friday. I am happy enough to do so and was on my way. As I waited outside the hospital for my Dad who had kindly driven me, to give me a break, I met said dermatologist. We talked for a few minutes and when I said about what the nurse had advised about more session, he seemed supportive and that I could go for it if I needed it.
On I was on my merry way again, sun beating on the car and already roasting from the treatment. Once I got home, as usual, I lathered myself in E45. I also put some sunscreen with an SPF of 50 on my face as I knew I would be in and out of the house during the day.
I hope to update again over the weekend as to the outcome of Friday and if I'll be doing extra sessions for definite. I might throw up another tag in the meantime, to add a bit of fun to the blog, let me know what you think of those :)
Until next time....
Sarah x
Just wanted to do a quick recap of this weeks sessions to date. I was hoping to add a few pictures of my skin at the moment but it's so awkward to get some angles but I hope to update on that soon.
Monday, I remained at the same time as Friday, 2minutes and 55 seconds. The nurse was concerned about abnormal redness on my arms. While the weather had been nice over the weekend, it had still been fairly windy at work so I kept my arms covered so I myself was baffled as to why my arms were so red. After the talk of maybe wearing a tshirt during the treatment, she advised against it. I was no longer using the step, and used the visor for the first minute of treatment.
Today, Wednesday, I moved up to 3 minutes and 4 seconds. Same thing again, no tshirt, and visor for the first minute. She discussed with me that she would be in touch with my dermatologist about extending my light treatment as my 24th and final treatment is due to happen this coming Friday. I am happy enough to do so and was on my way. As I waited outside the hospital for my Dad who had kindly driven me, to give me a break, I met said dermatologist. We talked for a few minutes and when I said about what the nurse had advised about more session, he seemed supportive and that I could go for it if I needed it.
On I was on my merry way again, sun beating on the car and already roasting from the treatment. Once I got home, as usual, I lathered myself in E45. I also put some sunscreen with an SPF of 50 on my face as I knew I would be in and out of the house during the day.
I hope to update again over the weekend as to the outcome of Friday and if I'll be doing extra sessions for definite. I might throw up another tag in the meantime, to add a bit of fun to the blog, let me know what you think of those :)
Until next time....
Sarah x
Sunday, 19 April 2015
Quick Update....
I just wanted to do a quick recap on Fridays session. It was a bit of a mixed one, I noticed the night before that some Psoriasis was reappearing on my face, only 2 dots, but just annoying considering all the light treatment where my face had been exposed.
I was in for 3 minutes and 3 seconds, a minute of which I had a visor and step, we took a break to remove both for the last 2 minutes. The nurse was concerned about my legs and arms and the reappearance of dots. I am only supposed to have treatment up until next Friday, bringing me to 24 session but my nurse is going to talk with my dermatologist about bumping that up to maybe 30 as she wouldn't be happy so send me on my way next week having come so far. I completely agree with the decision as in past years when I had light treatment I had better results this far into it, with mostly discolouration remaining.
While it is a bit disheartening that I'll have to go in for possibly two extra weeks, Its also nice to see that my skin is being looked after well with the nurse wanting to make sure I'm as clear as I can be leaving their treatment.
Also I've dded a few bits to the site while I've had some extra time on my hands, including an About Me section and Links to site about Psoriasis which I have found helpful. I hope to try and post more in the coming weeks especially about past treatments and a few other ideas. If anyone has anything they would like me to discuss, be it psoriasis, psoriatic arthritis or to do something completely different, please get in touch :)
Enjoy the rest of your weekend whatever you may be upto
Until next time....
Sarah x
I was in for 3 minutes and 3 seconds, a minute of which I had a visor and step, we took a break to remove both for the last 2 minutes. The nurse was concerned about my legs and arms and the reappearance of dots. I am only supposed to have treatment up until next Friday, bringing me to 24 session but my nurse is going to talk with my dermatologist about bumping that up to maybe 30 as she wouldn't be happy so send me on my way next week having come so far. I completely agree with the decision as in past years when I had light treatment I had better results this far into it, with mostly discolouration remaining.
While it is a bit disheartening that I'll have to go in for possibly two extra weeks, Its also nice to see that my skin is being looked after well with the nurse wanting to make sure I'm as clear as I can be leaving their treatment.
Also I've dded a few bits to the site while I've had some extra time on my hands, including an About Me section and Links to site about Psoriasis which I have found helpful. I hope to try and post more in the coming weeks especially about past treatments and a few other ideas. If anyone has anything they would like me to discuss, be it psoriasis, psoriatic arthritis or to do something completely different, please get in touch :)
Enjoy the rest of your weekend whatever you may be upto
Until next time....
Sarah x
Friday, 17 April 2015
Get to know me...
Today I thought I'd do something a bit different, a get to know me tag. I always find these interesting when reading other blogs as it is a way to get to know more of the bloggers personality and delve a bit deeper into their lives (or maybe I'm a tad nosey :P). It consists of 25 questions, so here we go....
1. Do you have a middle name?
Yes, my middle name is Patricia. I was named after my grandfather Patrick, as we share the same birthday!
2. What was your favorite subject in school?
Probably History, I've always been fascinated with what has happened in the past and how times have changed.
3. What’s your favorite drink?
Non alcoholic, I'll go for tea :)
4. What’s your favorite song at the moment?
I've been really neglecting music lately to be honest, its like I don't have much time for it especially since I haven't updated my iPod in the car in ages. A song I keep coming back to recently is This Must Be The Place by Talking Heads/ David Byrne
5. What would you name your children?
I think this always changes! Its something I'm probably not much thought into until the time comes where I'm ready for kids....and have some input from himself also :P
6. Do you participate in any sports?
I used to play Basketball years and years ago. These days its a no, but hoping to sign up to a gym soon once I'm back working properly again.
7. What’s your favorite book? I'm not big into reading, I'm more of a movies kind of girl.
8. What’s your favorite colour?
Has to be Purple, with Blue coming a very close second
9. What’s your favorite animal? Dogs are my favourite pets, but if I had to branch out to non domesticated, more than likely Lemurs!
10. What’s your favorite perfume?
Hugo Boss Pure Purple, which is near impossible to buy.
11. What’s your favorite holiday?
Christmas, only time get to see more family than usual
12. Have you graduated from High School?
Yeah, I'm 9 years out of high school (oh dear god!)
13. Have you been out of the country?
Yes, I've been a few times with another trip coming up soon.
14. Do you speak any other languages?
Nope, only broken Irish, German and Spanish
15. Do you have any siblings?
Yes, I have an older brother
16. What’s your favorite store?
Don't know if I can narrow it down, um...Penneys, New Look and Boots!
17. What’s your favorite restaurant?
Milanos....mmmmm
18. Do you like school?
It had its ups and downs, but I think you don't realise how much you miss it til you're finished. Especially seeing friends everyday.
19. Who are some of your favorite YouTubers?
I tend to watch alot of Beauty youtubers, especially Irish ones like The Makeup Chair and MonsterMakeupxx
20. What’s your favorite movie? Con Air!
21. What are some of your favorite TV shows?
Moone Boy, Eastenders, Catfish, The Big Bang Theory, comes to mind.
22. PC or Mac?
Always grown up with PCs
23. What phone do you have?
HTC One mini 2
24. How tall are you?
I'm about 5'7" or 5'8"
25. Any pets?
One Labrador cross, shes a lunatic! :)
Hope you all enjoyed something a bit different from me. If any others want to do this, fire away.
Until next time...
Sarah x
1. Do you have a middle name?
Yes, my middle name is Patricia. I was named after my grandfather Patrick, as we share the same birthday!
2. What was your favorite subject in school?
Probably History, I've always been fascinated with what has happened in the past and how times have changed.
3. What’s your favorite drink?
Non alcoholic, I'll go for tea :)
4. What’s your favorite song at the moment?
I've been really neglecting music lately to be honest, its like I don't have much time for it especially since I haven't updated my iPod in the car in ages. A song I keep coming back to recently is This Must Be The Place by Talking Heads/ David Byrne
5. What would you name your children?
I think this always changes! Its something I'm probably not much thought into until the time comes where I'm ready for kids....and have some input from himself also :P
6. Do you participate in any sports?
I used to play Basketball years and years ago. These days its a no, but hoping to sign up to a gym soon once I'm back working properly again.
7. What’s your favorite book? I'm not big into reading, I'm more of a movies kind of girl.
8. What’s your favorite colour?
Has to be Purple, with Blue coming a very close second
9. What’s your favorite animal? Dogs are my favourite pets, but if I had to branch out to non domesticated, more than likely Lemurs!
10. What’s your favorite perfume?
Hugo Boss Pure Purple, which is near impossible to buy.
11. What’s your favorite holiday?
Christmas, only time get to see more family than usual
12. Have you graduated from High School?
Yeah, I'm 9 years out of high school (oh dear god!)
13. Have you been out of the country?
Yes, I've been a few times with another trip coming up soon.
14. Do you speak any other languages?
Nope, only broken Irish, German and Spanish
15. Do you have any siblings?
Yes, I have an older brother
16. What’s your favorite store?
Don't know if I can narrow it down, um...Penneys, New Look and Boots!
17. What’s your favorite restaurant?
Milanos....mmmmm
18. Do you like school?
It had its ups and downs, but I think you don't realise how much you miss it til you're finished. Especially seeing friends everyday.
19. Who are some of your favorite YouTubers?
I tend to watch alot of Beauty youtubers, especially Irish ones like The Makeup Chair and MonsterMakeupxx
20. What’s your favorite movie? Con Air!
21. What are some of your favorite TV shows?
Moone Boy, Eastenders, Catfish, The Big Bang Theory, comes to mind.
22. PC or Mac?
Always grown up with PCs
23. What phone do you have?
HTC One mini 2
24. How tall are you?
I'm about 5'7" or 5'8"
25. Any pets?
One Labrador cross, shes a lunatic! :)
Hope you all enjoyed something a bit different from me. If any others want to do this, fire away.
Until next time...
Sarah x
Wednesday, 15 April 2015
Burn Baby Burn....
No disco inferno to report unfortunately. Just to update on my past 3 session of UVB. As I stated in my last post, I was slightly red on my neck/chest after Wednesday and thought I'd be lowered to a different dose...Nope!
Fridays session lasted approx. 2 minutes and 47 second, up again another 20%. I was told because it was the first incident of redness that I should be OK. Friday night was agony, it was like I had been sunburned all over, without the blisters or the peeling. My skin was red and hot from head to toe. I moisturised once I got back from the hospital with E45, and again later that evening to try and cool my skin and because it had felt so dry. That night I did my usual routine of Emulsifying Ointment but it was still quite uncomfortable to sleep with the heat (not good with work the next morning!)
The next day I felt like my skin was not as bad, it was still fairly red, but not as hot to touch. I went about my day at work, making sure to top up on SPF 50 on my face during the day as I work outdoors. On Sunday, I felt back to normal and to top it all of my thighs which had still felt a bit grainy, had felt much smoother.
Monday morning, the nurse noted about what I experienced on Friday. She checked over my skin, all seemed well. My face was looking much better so she came to the decision that I'd finally be using the visor to cover my face during light treatment, and I also had a step under me to raise me up to get lower areas better. I went up by 10% to see if my skin would react at a lower dose. That evening, I did have a small bit of redness on my upper arms and lower back but no where near last Friday.
Today I went up another 10% and my session lasted 2 minutes 57 seconds. My knees had felt quite sore last night and this morning, I put it down to not taking any medication for my Psoriatic arthritis since early March. I'm trying to give my system a chance before I start Stelara but if the pain gets worse I will take Methotrexate. Due to this it did feel a bit difficult when doing the movements in the light treatment box. Legs and arms are raised, and any skin folds where Psoriasis is, just to make sure the light gets to it.
I have only 4 more session left to go. While I definitely see and feel improvements in my skin, I still have a bit to go yet. The legs always seem to be the most stubborn but I'm hoping for good weather here to get clear for holidays. Also the introduction to Stelara a week after I finish light treatment, time will tell if or when it works.
Until next time...
Sarah x
Fridays session lasted approx. 2 minutes and 47 second, up again another 20%. I was told because it was the first incident of redness that I should be OK. Friday night was agony, it was like I had been sunburned all over, without the blisters or the peeling. My skin was red and hot from head to toe. I moisturised once I got back from the hospital with E45, and again later that evening to try and cool my skin and because it had felt so dry. That night I did my usual routine of Emulsifying Ointment but it was still quite uncomfortable to sleep with the heat (not good with work the next morning!)
The next day I felt like my skin was not as bad, it was still fairly red, but not as hot to touch. I went about my day at work, making sure to top up on SPF 50 on my face during the day as I work outdoors. On Sunday, I felt back to normal and to top it all of my thighs which had still felt a bit grainy, had felt much smoother.
Monday morning, the nurse noted about what I experienced on Friday. She checked over my skin, all seemed well. My face was looking much better so she came to the decision that I'd finally be using the visor to cover my face during light treatment, and I also had a step under me to raise me up to get lower areas better. I went up by 10% to see if my skin would react at a lower dose. That evening, I did have a small bit of redness on my upper arms and lower back but no where near last Friday.
Today I went up another 10% and my session lasted 2 minutes 57 seconds. My knees had felt quite sore last night and this morning, I put it down to not taking any medication for my Psoriatic arthritis since early March. I'm trying to give my system a chance before I start Stelara but if the pain gets worse I will take Methotrexate. Due to this it did feel a bit difficult when doing the movements in the light treatment box. Legs and arms are raised, and any skin folds where Psoriasis is, just to make sure the light gets to it.
I have only 4 more session left to go. While I definitely see and feel improvements in my skin, I still have a bit to go yet. The legs always seem to be the most stubborn but I'm hoping for good weather here to get clear for holidays. Also the introduction to Stelara a week after I finish light treatment, time will tell if or when it works.
Until next time...
Sarah x
Thursday, 9 April 2015
Extra time....
I hope everyone had a lovely Easter! I spent mine working, sleeping and eating chocolate, probably in that order :)
So last week I finished on Friday at 1 minute and 42 seconds in the light treatment box. I didn't have a session on Monday due to the bank holiday, which worked out well as I was working. This past Tuesday to my dermatologist who determined I'd be doing a total of 24 session as at that time it would bring me upto when I'm due to start Stelara, which will hopefully clear any psoriasis that may be left.
Wednesday brought me upto 17 sessions. The dosage was uped to 2 minutes and 3 seconds. When I had a shower the same night after treatment, I noticed I was quite red on my chest and it was hot to touch. This will have to be noted for my 18th session tomorrow and my dosage will more than likely be lowered to avoid further redness.
We've been lucky here in Ireland that the weather has been beautiful, but with that comes precautions...namely factor 50 sunscreen! Which I will also be having to load up on when I go on holidays in 2 months time, along with a hat and cover ups. Hope to do a future post on item purchase to avoid the sun flaring my skin :)
Enjoy the weather wherever you may be
Until next time...
Sarah x
So last week I finished on Friday at 1 minute and 42 seconds in the light treatment box. I didn't have a session on Monday due to the bank holiday, which worked out well as I was working. This past Tuesday to my dermatologist who determined I'd be doing a total of 24 session as at that time it would bring me upto when I'm due to start Stelara, which will hopefully clear any psoriasis that may be left.
Wednesday brought me upto 17 sessions. The dosage was uped to 2 minutes and 3 seconds. When I had a shower the same night after treatment, I noticed I was quite red on my chest and it was hot to touch. This will have to be noted for my 18th session tomorrow and my dosage will more than likely be lowered to avoid further redness.
We've been lucky here in Ireland that the weather has been beautiful, but with that comes precautions...namely factor 50 sunscreen! Which I will also be having to load up on when I go on holidays in 2 months time, along with a hat and cover ups. Hope to do a future post on item purchase to avoid the sun flaring my skin :)
Enjoy the weather wherever you may be
Until next time...
Sarah x
Thursday, 2 April 2015
Easter - New look
Hello all,
Being Easter and the evenings getting longer, or as us Irish say "there's a grand stretch in the evening" I decided to freshen up the look of the blog with a simple, clean look. Which will hopefully make it more appealing to read. Thoughts welcome :)
I wanted to update on Week 6 has gone so far. Monday morning I visited my rheumatologist to check up on how I was doing. We had discussed how Cimzia just did not work for me, only after one dose. After what Enbrel had done to my skin, I'm very cautious trying anything new so when I felt it was worsening my skin as well as the reaction on the injection site, I wanted nothing more to do with it.
We then talked about Stelara, which I'm happy to start as I've heard of a good success rate with both psoriasis and Psoratic arthritis. He then said we'd wait another month to start it so as to ensure Cimzia was out of my system which I was happy to do as I had felt run down lately between different medications and light treatment. I can take methotrexate until then and I was also given a steroid shot into my hip to help my knees which have been giving me a bit of grief.
After my appointment, I then had my hospital appointment for light treatment and told the nurse the plans for Stelara after my break. Today I was back up to 1 minute and 11 seconds, I'm finally making progress again! Wednesday was my 15th session, and I was reminded to make an appointment with my dermatologist to determine how many more session if any (oh I know I'll have to) after session 18. I am pencilled in with my derm for next Tuesday.
Tomorrow is session 16 and I look forward to progressing further after feeling like its bit mostly 'one step forward, two steps back'. I don't have light treatment on Monday as it is a Bank holiday here in Ireland. I'm going be spending my Easter weekend being back at work, which I look forward to as I get to see my old work friends and have a laugh with them. It's only weekends for now until May which works out nicely with treatment and doctors!
Hope to update again during the week, but until then I hope you all have a happy Easter and munch away on some lovely chocolate.
I have always wondered about expanding my blog into other areas outside of psoriasis and treatments, I'm not sure if there is an audience. Please do feel free to comment or contact me in private and let me know.
Sarah x
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