My experience with Stelara.....

The final instalment of this series, brings up to my final and current treatment, Stelara...

After Cimzia, I was given a month to get it out of my system and then I made the decision to go with my next option, Stelara. This is a 45mg syringe injection. The good thing about this is it has a spring mechanism in the injection, that once it has been distributed, it encases itself within a metal reel and plastic casing. This is a great feature making it safer to dispose without the risk of needless touching of the needle once injected.

I first started Stelara on May 9th, a day after finishing up with light treatment. I found it much easier to inject that previous biologics. After my first time, I did feel a big sick; scratchy throat, slight runny nose but nothing major and it didn't last very long.

Second injection was June 6th, 4 weeks after the first one. Again, similar symptoms as above but nothing that lasted. Two days later, I was off on holiday to sunnier climates. The first two days of sun I found my upper arms and chest to become quite red and itchy which I've recently found out is sensitivity to light, Urticaria. It cleared within a few days thankfully. While on holiday, I safely enjoyed the sun and my skin showed signs of improvement, I was returning home a week later much clearer.

Unfortunately, once I was home a few days my skin flared, but not to the extent it had been. The doctor said it due to coming home to a different climate but also the stresses that we forget about while on holidays. 

It's now two months since holidays and my skin, sadly, has become aggregated. I'm not due to take my next injection until August 29th (every 12 weeks after the 2nd injection). I have asked other about their experience with Stelara and they have said it usually starts working from the 3rd or 4th injection, so I'm holding out hope that it will be the case.

Are you on Stelara? Share your experience.

Until next time.....

Sarah x

My experience with Cimzia.....

Continuing on the series from my previous experience, which was a negative one with Enbrel.

When I went back to my rheumatologist on March 2nd to review my progress with 25mg Enbrel with 10mg MTX, it was decided I would try Cimzia. Now, I had not heard about Cimzia, and thought the next step would be Stelara. I was to start the following Monday, March 9th. At this stage I was already after two weeks of light treatment in order to relieve my skin of the damage Enbrel had done.

Cimzia consists of two 200mg prefilled syringes (400mg in total) to be injected into each thigh, on the same day as each other. This was the starting dose, And I was still on MTX to help make the injection more effective. As it is such a high dosage, it is to be done every two weeks, 400mg for the first 6 weeks and then 1 thereafter.

 

 (Cimzia starter pack - 2 x 200mg prefilled syringes)

A week and a half after the initial injections, I started to notice pink dots around the injection sites on both thighs. The following day, they appeared as large, red, raised patches and felt hot and itchy. Concerned, I talked to my nurse at light treatment the following day and she reduced the UVB due to the reaction and said to ask my doctor about skipping the next session. This was a Friday morning and unfortunately meant it was proving quite difficult to get my rheumatologist on the phone and I gave up when I didn't get a call back. To my surprise, Saturday morning, I get a call from my rheum to see how I was doing. He heard my concerns and advised me to cancel Monday's session to let the reaction fade, and to not take Cimzia any further.

I continued with my light treatment and revisited my rheum where we decided to give my system a break before starting any different, and to think about starting Stelara in a months time as my next option, which is the next and final topic of this series to discuss.

Have you any experience with Cimzia or any biologics mentioned above?

Until next time....

Sarah x

My experience with Enbrel....

It is that time again, another installment. If you have missed my previous posts, I have gone into detail about my experience with topical ointments, tonsilectomy, methotrexate and phototheraphy. Today I talk about my most negative experience to date, which happened at the start of 2015...

In my other post regarding Methotrexate, I ended up feeling very ill while taking a higher dosage in December 2014, while also developing psoriatic arthritis in my elbow earlier that year also. At this time, I also found my skin to be bumpy around the back of my thighs leading me to think maybe my Psoriasis was becoming active again but it wasn't happening at a rapid rate, thankfully. I was always given the options of changing to biologics, but was put off at the thought of having to inject myself. To reference Psoriasis.org, Biologics :- "target specific parts of the immune system. The biologics used to treat psoriatic disease block the action of a specific type of immune cell called a T cell, or block proteins in the immune system, such as tumor necrosis factor-alpha (TNF-alpha), interleukin 17-A, or interleukins 12 and 23. These cells and proteins all play a major role in developing psoriasis and psoriatic arthritis."

Enbrel (etanercept) was prescribed to me in January 2015. With Enbrel, you have a nurse assigned to you who comes to your house and helps to teach you how to inject it yourself. Thursday January 8th was going to be the start date and I was to try 50mg, which comes in pen form (myclic pen pictured above). The injection areas to choose from are either the thighs or stomach, I found the thighs to be the area of choice, alternating between left and right each week. To use the pen, the cap is taken off, and the pen is place on the top of the thigh, pushing down so the guard is pushed back and once you're ready the button is pushed releasing the needle. The first time I did it, I did it wrong as the nurse had confused me saying to count to 10, but I was supposed to wait for the second click (which they say is 10 seconds, sounding that it is been dispensed). Due to my mistake, I didn't get a full dose, but I'd know better for next time, being a weeks time. 

Thursday January 15th, My nurse was unable to attend my home. I remember it the weather had been quite bad around that time, including snowfall in higher areas. I managed to inject myself, after about a half hour of building myself up, it was a case of "F**k it! *click*". I did find the pen to be painful. The nurse had asked if I would prefer to use a syringe which I felt sick at the thought of, but she made a good point that with the syringe you have more control. Once you click the button on the pen, its a case of grin and bare it. That same evening I found the back of my thighs and my scalp to be very itchy. As I've said above, it did have a few bumps on the back of my thighs, which felt more like pimples than anything else and didn't really bother me until then. 

Monday Jan. 19th, and I woke up feeling horrible, I had symptoms of a sore throat, runny nose, feeling cold and headaches at night. These symptoms persisted as the week went on and due to my next injection due on Thursday it was decided I would give it a miss. It should be noted that if you do feel sick while on a biologic and are due to take it around that time, it is best to not take it, as you could become more ill. My throat had worsened by Thursday and I felt congested in my nose.

I was sure to keep track of my symptoms and injections in my Enbrel diary. I also kept track of my psoriasis, which by Saturday 24th had worsened. It was now showing on my scalp, legs, back, stomach and my face. I was also still very congested at this stage. The following week I had noticed red patches on my thighs where I had injected. I contacted my nurse who had said to keep an eye on them. They were slightly red and a small bit raised but I was told nothing to worry about. It was now Thursday the 29th and as I was still sick, I was missing another injection, making it two weeks in a row without Enbrel. 

Monday Feb. 2nd which was a visit to my Rheumatologist who had prescribed Enbrel, for a month review. While in the last month, my joints had felt great, my skin was going the opposite way. He thought maybe the dosage was too much to start on so halved my dose to 25mg every week and to take a low dose of Methotrexate to help make it more effective.

I started my new routine of 25mg of Enbrel the following Monday, the 9th. The nurse had made the visit to help show me how to inject with a pre-filled syringe which is how 25mg comes. She got to see how back my skin had become and had supported my decision to go back to my dermatologist about my worsening skin and the possibility of starting phototherapy again. I took 10mg of MTX the same day, which was followed by 10mg of folic acid two days later.

I did find it strange injected with a syringe, but I managed to do so the second week with no supervision. I managed to get an appointment with my Dermatologist Feb. 17th and he looked over my skin and agreed with my thoughts on light treatment and I signed the appropriate forms and was book in for Feb. 23rd. I had 3 doses of 25mg of Enbrel in total before I was back to my rheumatologist for another review, and it was decided Enbrel was not beneficial to me and so it was stopped.

I was very unfortunate that Enbrel did more harm than good for me as I have heard and seen stories of how it has helped others with psoriasis and/or psoriatic arthritis. My Psoriasis had gotten so bad over my entire body, especially on my face which at times I felt I had to cover with makeup to avoid stares which were quite hurtful. I went on to continue phototherapy until May 8th 2015. I found it to be an expensive year as phototherapy 3 times a week at €30 a time which may not have been necessary had I not been prescribed Enbrel. Add in he cost of doctors visits on top of that and the fact I wasn't working. It probably seems like i'm cursing Enbrel and in a way, it was a negative experience but it did prepare me in other ways, such as injecting as I believe the nurse service is not available with some biologics.

As I always say, what happens to one might not happen to another and I know people whose lives have been made better by Enbrel. Its just a case of finding what works individually.

Did you have a similar experience? or what do you find works for you? let me know below.

Until next time....

Sarah x

My experience with Phototherapy (light treatment).....

Welcome back again to another installment. Today I'm going to discuss Phototherapy, also known as light treatment or UVB. I have gone into further detail about this in past blog posts, on weekly to daily basis so this is going to be a summery of my experience and just explaining what phototherapy is.

Phototherapy involves exposing the skin to ultraviolet light on a regular basis and under medical supervision, in my case, in a hospital. This is very different to tanning beds which are advised against using for skin conditions as it is not beneficial and does more harm than good. UVB (ultraviolet B) is present in natural sunlight and slows the growth of affected skin cells, therefore helping psoriasis.

I have been through this treatment three times, in 2011, 2013 and 2015. If you'd like to go back to my first post on the intial assessment where I go into detail about what happens for the first session, check it out by clicking here. 

My first and second time doing the treatment were very beneficial, to the point that my skin cleared, or was close to clearing. I do wonder if the more you go for the treatment, the less effective it become. My third time doing the treatment, was when I had flared due to Enbrel (which will be in more detail in the next installment). It seemed like my skin was more stubborn, and a mixture of trying new biologics had maybe played a part in it also. 

As I came to the end of my third time, which was only the start of May this year, I still wasn't happy with my skin. It had progressed, but not to the extent it had done in the past. I would really recommend this treatment for anyone with very bad psoriasis, but not to be doing so too often. My doctor said after a few hundred session that it would be considered a higher risk to skin cancer. Each time I had only done 20 - 28 sessions at most so I don't have to worry just yet.

Another thing about this treatment is that once the days session is done, it is very important to try and avoid the sun for the remainder of the day and use sun cream when outside. Reason being, at each session you are getting your days dosage of sunlight recommended.

Any questions, or anything you feel I should go into more detail about, leave it in the comments below.

Until next time....

Sun Care....

We are coming into that time of year where the sun is making an appearance (...or so we hope anyway!) as well as people jetting off to sunnier climates. I wanted to share a few bits and pieces on how I look after my skin in the sun, a few bits of which I've picked up for my own holidays as well as work.

 Sun care Lotion: 

Something that is very important to remember is that the suns rays (UV rays) tend to be more intense during 10am and 4pm so it is important to use sun factor creams to protect your skin. I tend to use a high factor of 50, which has been recommended by doctors and nurse due to my psoriasis, especially after the effects of light treatment.

-Garnier Ambre Solaire SPF 50 'on the go size' a handy size which I carry around in my bag for work and another in my handbag. I tend to use this a lot at work on a sunny day as there isn't many places to hide in the shade.

-Nivea Sun Protect Lip Balm SPF 30, again another item I use at work to protect from blisters or cold sores. It tends to be quite moisturising on the lips. Only downside is it is a thick white texture so is best rubbed in well to the lips.

-Soltan Sun care lotion SPF 50, this is a recent purchase for my holidays next week, just to upscale from a smaller sized bottle to take along with me. Only €5.50 in Boots so not going to break the bank.

-Garnier Ambre Solaire SPF 30, This is another recent purchase for holidays as I'm hoping to scale down on the SPF as the week progresses. All Sun Protection is currently half price in Sam McCauley's chemists so might be worth popping in to stock up if you live near one.

Cover Ups:

 Its only natural to show a bit of skin once the sun decides to show itself, and covering up doesn't need to be a case of looking mummified to cover your skin, here are a few stylish pieces to help keep your skin protected

-Hats - It can be something as simple as a baseball hat or something bigger and bouncier to keep the suns rays at bay. The Hat picture above is from Penneys (also known as Primark) and cost only €4! Bargain! I have had the misfortune in past years of getting sunburned on my scalp, not pleasent at all! This type also keeps the rays off your face, so added bonus. There are plenty to suit everyone; straw hat, cowboy hat, bucket hat, whatever takes your fancy, just be sure and keep protected.

-Sunglasses - Sometimes they are simply used to look stylish, but if you're like me, and rather not be squinting away while someone is talking to the point your eyes are watering (ok, maybe thats a bit much) then sunglasses are essential. I have bought a few pairs, ranging from €1.50, to €5.00 from Penneys and New Look.

-Scarves - Multifunctional when it comes to the sun, can be used as normal around the neck, to cover shoulder or even as a sarong on the beach. The one pictured above was from Accessorize and was given to me as a present from my brother's girlfriend. I love this one as is quite colourful but also has the images of skull so quite contrasting. Scarves really are cheap as chips when there are some lovely ones in Penneys from as little as €2 (I know this as I was tempted by a few on a recent shopping trip).

-Maxi Dress, perfect for summer, especially if like myself, you don't want your skin on show all the time. I have purchased the above dress for holidays from BooHoo.com back in February. Its simple but adds a bit of colour and is a lovely light material so it handy for the heat on holidays. There are so many varieties of these dresses around, perfect to suit every shape and size.

Other ideas when trying to cover up from the sun are Kimonos, I think these are a lovely addition to your holiday wardrobe especially when something like a cardigan seems to heavy to wear in hotter climates. Also on the plus side, they are super light and not irritating on the skin.

 

What are your summer essentials when it comes to protecting your skin? Leave them in the comments below.

Until next time....

Sarah x

*Disclaimer: All products mentioned above are purchased by myself. I have not been asked to mention stores, I just want to give an insight into where I have purchased these items*

 

The Final Countdown....

I hope everyone enjoyed the bank holiday weekend, even if the weekend was a bit of a washout. Thankfully I was off work and got to enjoy the comforts of home. This was also a good thing because my knees were hurting a lot, I put it down to the cold and bad weather.

Last Friday's session went well, I was up to 4 minutes and 11 seconds, wearing a tshirt for the duration and a visor up until the final minute when it was removed. No session on Monday due to it being a bank holiday so a few extra days without treatment and my skin seemed to be up and down. Some days it feels as though it is improving, other days as if it will never stop flaring.

I had an early appointment Wednesday as I had work that day. Over 4 minutes again, with the same routine, tshirt for the entire treatment and visor on until the final minute. I really felt my knees giving way towards the end of the time with the motions in the box and by the end could only slightly lift. The nurses are good, if I need a break but I feel I want to keep going instead of stopping and starting. Usually at my appointments I'd wear jogger bottoms or something similar as it is comfortable and easy to undress and dress. This time around I was wearing jeans, due to being in work not long after. I never got the chance to moisturise and to be honest my legs were so sore, especially on the back of my thighs. The jeans had been rubbing off them as I do a lot of walking in work. It was only when I got home I had the chance to change and cover my skin in E45. That's one mistake I won't make again after treatment, need to moisturise, moisturise, moisturise! 

Today being Friday, I have my appointment scheduled for later in the afternoon. Strange to think after so long I have only one session left. I even joked with the receptionist last time that I'd probably end up driving to the hospital even after I've finished because it has become so routine.

Later tonight I plan to start Stelara, as it was best to wait till I finished the phototherapy, due to the chances of making me more sensitive to light. I have read through my patient pack again today, and plan to double check before I inject. I am looking forward to the new journey and hoping for positive results but if it is not the case, there is always something else to try and newer treatments being approved.

Enjoy your weekend whatever you may be up to. I hope to keep updating on my progress and hopefully it is helpful to someone. How to you maintain your Psoriasis? Feel free to comment below.

Until next time....

Sarah x

Getting there....

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

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

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

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

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

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

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

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