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

Round up of Week 5

Hope everyone has enjoyed their weekend, looks like it will have been my last off to enjoy for a while as I just last week signed a new contract for work. It is somewhere I have worked for the past two years, but isn't all year round due to be a tourist attraction. It does mean being out in all weather, and I love it, especially when the weather is good. Get to meet people from all over the world and tell them more about the area I work in, a place I also have family ties. This weekend was spent celebrating with dinner and drinks with himself, which was very enjoyable indeed.

Anyway, onto the light treatment....as I previously said in my last post, due to doctors orders I didn't have light treatment this past Monday due to a reaction to Cimzia. In that time, I found the reaction at the injection site easing, not as raised and not feeling itchy or hot. Today, it's almost completely clear (thankfully!). Wednesday came and the nurse asked how I felt and checked over my skin, she was happy to stay at 49 seconds to be sure there was to be no more reactions. 

No redness or itchiness followed and I was happy with progress again. On Friday, my treatment progressed again, to 59 seconds. I've been moisturising as normal, in the mornings or after treatment with E45 and at night with emulsifying ointment, which have keeper to get my skin smoother, a feeling I have missed. I've seen the biggest change in my face, no more raised skin, just redness which doesn't bother me as it is better than it was. When my face was really bad, I would wear makeup to cover it up because I was so self conscious, but even with makeup raised patches could be seen. I should add, I only ever tend to wear makeup on nights out or special occasions. 

Tomorrow is an early start as I visit my rheumatologist, as we discuss me starting Stelara. I feel more positive after the failure of the other two biologics, as my dermatologist told me he had a high success rate with Psoriasis patients who used Stelara. So keep the fingers crossed for me that this is the one! Tomorrow, I also start week 6 of light treatment, not far off my end point.

Have you been prescribed Stelara? If you want to share your experience, please don't hesitate to get in touch, whether in the comments or privately.

Take care, until next time.....

Sarah x

Just when you think everything is going well....

Welcome back to this seemingly never ending journey. As you might have read in an earlier blog post almost two weeks ago, I started Cimzia. Everything had been going well, I had felt a bit tired compared to normal, but not something I couldn't handle.

At my Wednesday session of light treatment, I had worked up to 1 minute and 11 second. Usually around this point I tended to experience some slight redness on my skin (mostly back and arms) but everything was fine until Wednesday evening. I found on my thighs, where I had injected Cimzia a week and a half earlier, was covered in small pinkish/redish dots. I kept an eye on this as it had happened with Enbrel just not to this extent. To top it all off, it felt like my skin which had smoothed down, was feeling a bit gritty.

Thursday I woke to my the area that was all dots, looking like it had increased and joined up to make 2 fairly big, red, raised patches on either thigh. It was quite itchy and my skin there felt hot. On Friday at my light treatment session, I showed the nurse and she was concerned also. She decided I was best going back 2 steps in the progression of the UVB treatment, bringing me back to 49 seconds. She also advised me to get in touch with my doctor and see if I should miss my next session to give it more time to heal, all I had to do was ring and cancel if I needed to do so.

Friday after dinner, I tried to get through to the receptionist to get a call back from my Rheum....who I had missed by 30mins and was now out of office til Monday morning *que the panic*. I didn't see the point in seeing my local GP as they had no clue about what I was taking. Everything got to me again....

Thankfully Friday saw my boyfriend come to stay for the weekend, whats better to get rid of stress than laughs, cuddles, muchies and movies. It did help my mood a lot. Saturday morning, I get a call from a mobile number I don't know, I hesistantly answer to delight, it was my rheum checking up on me, his receptionist had gotten in touch. I told him my story and he advised me to skip Mondays session and my Cimzia injection if I felt it was making my Psoriasis worse and I had said it had. Since I'm back to him Monday March 30th, we'd talk about starting Stelara, which I was only too happy about because it was supposed to be the next step before Cimzia.

I spent the rest of the weekend in a better mood and on top of it, I can have a lie in tomorrow once I ring to cancel tomorrows light treatment. I'm still keeping up with my twice daily moisturizing routine and I am seeing great changes in my face as it has become so smooth again.

Hope everyone has had a good weekend, until next time....

Sarah x

Happy St. Patrick's Day!

Happy Paddy's Day to all (Paddy because of the Irish, Padraig...Patty is a burger ;)). A lot of activity around the world today to celebrate being Irish, locally there is a parade which mostly consists on school kids and tractors. Overall, I've had a chilled day with family, avoiding the chaos of town.

So, to update on the last few days, Monday of last week was my first time starting Cimzia, since then *thankfully* I haven't felt any side effects other than being a bit tired the night or so after injecting. I've had 3 sessions of light treatment since my last post also and the progress is clear to see. My face especially has improved a lot. My forehead, nose and cheek was covered, raised and red, now its smooth with the colour almost completely faded on my forehead while its in the process of clearing on my nose and cheeks. I am delighted with the how it is going. It main seem a bit vain but I glad my face is almost back to normal, after all it is the first thing most people notice and I can feel the stares the last while which really got me down.

As for the rest of my body, it is no longer raised and is just the discolouration that the UVB has to treat. I have been good at keeping up my moisturising routine of E45 in the morning/after UVB and emulsifying ointment at night and I find i does help make all the difference. My family and friends are certainly noticing the difference in my skin (as well as my mood!). Tomorrow will be my 10th session and I am due back to my dermatologist in about 2 weeks so he can determine how much more treatment will be needed.

After the UVB is over I hope the sun will make an appearance in Ireland so I can continue to keep my skin clear. I also have a sun holiday booked for June which I am far too excited about, so much so Ive already started buying summer clothes for it. Shorts I would never wear out in a million years, but I bought a pair of denim ones in Penneys last week which I cannot wait to wear on holidays. I have also bought bits like sunglasses, light runners, bandeau tops and a maxi dress (currently in the post, eek!). For the last few months I've been trying to keep my skin covered as much as possible so I will be nice to be comfortable in my own skin again.

Are you on a new or ongoing treatment? I'd like to hear your experiences as everyone is different and what might work for one person may not work for another. Always interested to hear.

Til next time....

Lá fhéile Pádraig sona dhuit!

Sarah