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

Week 3 begins, and another change..

As the title goes, today I started week 3 of light treatment which was my 6th session. Having started at 17 seconds, I have now progressed onto 41 seconds. My skin doesn't feel as sore now, large patches on the front and back of my thighs have proved to be problematic especially when the weather had been so cold. With said problem, I have taken to wearing tracksuit pants, which are softer on my skin compared to jeans which tend to rub and itch.

(Emulsifying Ointment)

Today was also the day I started Cimzia (Certolizumab pegol) which is an injection. It comes in a prefilled syringe, in a pack of 2 and 2 alcohol swabs. It has to be stored in the fridge but taken out at least a half an hour before injecting to reach room temperature (also this means less of a sting upon injecting). I have been used to injecting have been prescribed Enbrel in January, I had used the myclic 50mg pen and had been reduced to 25mg syringe after my skin reacted so badly by flaring. This time around I will be on 400mg, being 2 x 200mg syringes.

It had been 2 weeks since I had last injected Enbrel and when it came to injecting Cimzia today,I froze, to say the least. I think I worked myself up so much that it affected me being able to inject. What if it makes my skin worse? What if it doesn't help my joints? What if I get one of the hundreds of different side effects that was listed on the info pack? (Yeah, that last one didn't help me at all). After building up the courage, I finally pinched the skin on my thigh, stuck the needle in and took my time injecting. I probably gave the biggest sigh of relief and questioned why I had worked myself up so much. Then of course, injection number 2! This didn't work out as well but I took my time and changed location halfway through to be more comfortable. 

The instructional DVD does say it push the plunger that it's done in 10 seconds, but I find it tends to sting so I take my time and take a breather in between. It's been about 2 hours since I injected and I feel OK. The areas I injected (right thigh and left thigh) are a bit sensitive, but that's to be expected. I just have to keep an eye on them to see if I get a reaction on the site. Will be sure to keep update on how I feel, while I'm also recording it on a diary and Cimzia Patient guide. 

Are you on Cimzia? Get in touch, would love to hear of your experiences and what you find helps you.

Til next time....

Sarah

It's been a while....

So, about 3 years since an update. Well let's just say, since my last bout of ligh treatment which I had updated on the page, I was clear bar a few pesky spots here and there that weren't of that much bother to me, Until it decided to get worse around April 2013 for reasons unknown, at this time light treatment was again used and I went on my merry way. Now I sit here writing again, having been influence by reading other psoriasis blogs to update yet again, as it has come back with a vengeance...and here's why;

For about 8 years I had been on Methotrexate (MTX) but unfortunately around Christmas 2014, it was beginning to make me feel very ill, especially as I was on a higher dosage of 25MG. On top of that, I had developed Psoratic arthritis in my right elbow also, so it felt like it was no longer cutting it for me.

I was put on Enbrel, which you inject rather than tablet form I had always been used to. I started on 50mg and only lasted 2 weeks before I ended up with the flu (seems the flu jab a few months earlier didn't cut it this year) and my skin completely flaring up. My scalp, face, arms, legs, back and torso have been covered again in what I thought I had under control. It really hit me hard, no matter how many times I tried to stay positive. I was prescribed 25mg of Enbrel along with 10mg MTX for a further 3 weeks (which was up until last week). A visit to my dermatologist and light treatment (UVB) was on the cards yet again, of which I am not into my second week (had my 3rd session today at 29 seconds).

I have also been changed to Cimzia, a drug I have never heard of. I am due to start next Monday though I am still waiting on a patient pack to arrive as the doctor had none (is that a good sign or a bad one?!). That pretty much brings us upto today, Thursday March 5th.

I guess when my skin was clear, I could go about living life normally and not worry about stares, itching and pain from this but not that it is back, it has affected me in a few ways. Thankfully I have a supportive family, friends and boyfriend who support me no matter what, but sometimes I think it may be hard for them to understand just how I'm feeling as none of them suffer the same.

I'm going to try and stay positive, as much as it gets me down, it's not the end of the world. Who cares if people stare, it's not contagious, but educating people on it is. Hoping to upload some recent photos soon to show the extent and hopefully the transformation.

Until next time,
Sarah x