Busy, busy......

Again other things have gotten in the way of blogging. Work and life in general has been pretty hectic but I wanted to come on here and share a quick update on my progress. I get asked quite a lot about how I'm doing on Cosentyx, especially from people who have recently started it or are due to start it.

Thankfully, all progress has been good for my skin. All that is left is the discolouration of psoriasis,  no raised skin, flaking or itching! I have been very happy with my progress. It has been very convenient also only having to take it once a month and I'm now on my fourth month.

My joints lately had been feeling better but unfortunetly this week, have flared. I put that down to lots of walking/ standing in work for long periods of time and also my shoes being a bit worn also. I hope it will calm down soon.

I'll have a longer post in "my experience with" series soon so be sure to check back for that.

As always, any questions leave them in the comments below.

Until next time.....

Sarah x

Ch-ch-changes.....

Hello again. Changes have yet again set me back in my progress, and has gotten to the point that my skin feels like it's on fire :(. Even something so slight as brushing against furniture or harsh clothes are making it unbearable lately.

I'm not entirely sure what has brought it on...change in washing powder? Possibly, change in weather? Could be, it has been up and down lately. Stress? I have had my fair share of it again lately. Sickness? It was only last week I yet again came down with a headcold. I've even been thinking the water supply...strange as it sounds but I have been thinking of investing in a filter for the shower head. I simply can't pinpoint it unfortunately. 

I woke up with a headcold last Thursday, the same morning I had a check up appointment with my rheum. He was shocked at how bad my skin on my legs had gotten when I showed him. Even though Stelara seem to be helping my joints, same couldn't be said for my skin. it was time to try yet another different medication.

I was shown two options, one being a tablet, the other being another biologic, Cosentyx. I had asked about this new biologic back in November having heard so much good about it, but it was not available in Ireland. Thankfully, now it is! I couldn't choose anything else, This seems like the dream biologic. 

I was given my patient pack and sent on my way. Due to being on the tail end of a headcold, I haven't been able to start it just yet. I'm looking forward to starting, worried about the pen injection given that I didn't like the Enbrel one, but none the less, if it is to help me it's a case of get over it and just do it! 

Starting course will be two 150mg injections per week (at the same time) for four weeks and all going well after a checkup with my rheum after that time, it would be two injections together every month. I hope to update once I have started, and I'm hoping for good results as most research I've done on it has come up so positive! 

Have you tried Cosentyx? Let me know what your thoughts on it are.

Until next time.....

Sarah x

Winter handbag essentials.....

Welcome back to my blog! Today's post is going to be about my handbag essentials for the cold winter weather. Lately here has been the coldest it has been this winter as it had been very mild up to now. We've had lots of rain, bringing with it, ice in the mornings. So here are my necessities for this harsh weather....

 

Unfortunately with the cold weather, skin can become dry and cracked so I do tend to carry a few bits in my handbag to avoid irritation and the possibility of my psoriasis becoming worse.

Gloves are a great way to keep your hands protected from the cold air. Theses are a pay from Penneys (Primark) which was €1.50 for a pack of two pairs. They are small enough to roll up and store in your handbag or pocket for whenever you may needed. They can also be a great fashion accessory if you want to dress up an outfit. An additional set of hand warmers could also be placed inside of the gloves to make it toasty :)

A recent addition to my handbag is the LOccitane hand cream for dry skin. I was never one for wearing hand cream, as I don't like strong scents on my hands, and while this does have a slight scent it is very much a pleasant one! It was gifted to me in a gift set of mini samples by my brothers girlfriend, who very thoughtfully took my skin into consideration. I have using this quite a bit on my knuckles as I have experienced cracking of my skin in this area. It is a lovely creamy white texture that really rubs into the skin nicely.

  This time of year when along of colds and flus develope, I find it always good to carry a small bottle of hand sanitizer. The bottle picture is from Aldi and costs between €1 and €2. I can be a bit of a germaphobe sometimes as I know myself that with an autoimmune condition that it can be very easy to come down with a cold or flu. Especially when it's the time of year that people are on fitness kicks, no one wants to be sick! Along with hand sanitizer, I also carry a pack of tissue cos you never know when you might need them. 

A longtime favourite of mine is the Blistex relief cream. I find this is fantastic when you're lips are cracked and dry, which unfortunately has been the case lately. I always have a backup of this just I case I might need it. I do like lip balms but nothing seems to be a moisturising as this! You do feel a slight tingle on the lips which I know some people hate, but it's something that doesn't bother me. It is a white cream so does have to be rubbed into the lips well.

Highly recommended by my mother after suffering from a sore throat lately, .  I used to use these when I got strep throats in the past but had since forgotten about them. I was using different cough sweets and cough syrup lately which were not helping, but these were a godsend. I find that after the sweet has gone, that my throat still feel coated with the taste and numbing effect of the sweet. Glad to have these close when my throat is starting to feel sore, and they only cost around €1 to €2.

What items can you not live without in your handbag/ bag to survive the winter? Let me know in the comments below.

Until next time....

Sarah x

New Year, new chapter.....

Greeting from my sick bed....well, couch with a fuzzy blanket and warm fire :) Thankfully I'm over the worst of my cold and feeling better each day. A trip to the doctor this morning, it was decided I didn't need antibiotics and to continue my recovery on paracetamol. Funnily enough my facebook memories today showed me moaning about being sick this day, on two different years...seems to be a pattern. I know that this is going around and I know people who suffered from it recently. Probably from going from bad habits over Christmas to trying to do better again in the new year getting back into routine. On that note also, Happy New Year! I hope you all enjoyed however you chose to celebrate. I did so with family and my boyfriend having a quiet night in, going outside at midnight to see the fireworks over the nearby town.

So today, giving how I'm feeling I thought I'd go through a routine of how I recharge my batteries when I am sick...

Comfort:

It is important to make sure you are comfortable! Whether its being in bed or on the couch, its nice to have comfy pillows or cushions to ease and aches of pains you may have. I found myself suffering from terrible lower back pain which my doctor put down to the virus targeting a weak area of your body. I found myself layer up cushions on the couch and while in bed using my trusty hot water bottle to heat the area. Just be sure not to have the hot water bottle touching your skin, so as not to burn the skin, instead wrap it in a towel or tshirt.

My lovely fuzzy blanket from trusty Penneys has been attached to me most of the week. It warm but also light material if I get too warm. Who can forget warm, cosy slippers!  My pair of choice being sheep ones I received as a present at Christmas.

Sleep

Sometimes coming down with something like a cold is a way of your body saying you need to slow down and recharge. Depending on your age and lifestyle it is usually recommended that we get 8 to 9 hours sleep a night. A good night sleep can help to focus more during the day at work/school. Lately unfortunately my sleeping pattern has been all over the place (a bad habit from Christmas) which may have been part of the reason I became sick. Relaxation plays a big part, even little things like lighting candles or your favourite scent,going for a short walk to get to fresh air into your lungs (love the chill of late cold nights), listening to your favourite music, watching your favourite show or if like myself lately, watching your favourite youtubers.

Medicine

Whether you believe in herbal medicine or the chemist kind, use whichever you find works for you! I found myself using Strepsils sore throat and blocked nose lozenges due to a bad cough I had and later found Fisherman Friend were more beneficially. As a child I always suffered from very sore throats and bad coughs but since I had my tonsils out (10 years this month!) I thankfully haven't suffered as badly, as well as improving my skin when it was at its worst at that time. I had started out using a cough syrup but found it only seemed to make me cough more. Voltarol has been a godsend for using on my lower back! The pain was so bad when it came to getting up from sitting down and standing back up again but this gel really has helped relieve it as it targets the area.

Fluids

This is sooo important! Be sure and keep your body hydrated with plenty of fluids. Water, 7-Up and Tea have been my fluids of choice. One of my goals for the New year is to drink more water. I had a good routine of drinking water daily but fell into bad habits over Christmas.

If needed, seek medical advice

If you feel like nothing is helping, maybe seeing your doctor is the next step. Your doctor can then recommend a course of action, whether it be antibiotics, or even just more rest. It is best to follow the instructions of your doctor and if that doesn't work, don't hesitate to let them know, they are there to help you after all.

I have found myself using the downtime to also make goals for myself for the new year. I'm not one for making New Years Resolutions, simply because I never keep them! So I have written out ideas and steps to go about achieving them, in the form of progression and it has really made me motivate myself to getting better and try to improve my lifestyle as of late.

Anything you would add to the above list? Leave it in the comments below. I hope it has been a better start to the new year for you. Have you made resolutions or plans? I may share mine in a post, I'm planning to keep track of progress in all areas so hopefully a few changes in motion.

Until next time....

Sarah x

 

December Update....

Hi all! Hope everyone is doing well since my last post. I do apologise for the lack of posts as I'm having laptop issues and waiting on a part to be delivered. But on with the update....

So I didn't update through November, which was also due to being busy with work. I had another visit back to my Rheumatologist. I had experienced quite bad stiffness in my elbow in the days leading up to my visit, and unfortunately my skin hasn't been behaving lately. With the winter setting in, it could be down to the changes but it has been fairly mild temperature wise here. 

My rheum did discuss with me about changing medication, to which I wasn't open to. As previously posted about, my current medication, Stelara, is the third different biologic I've tried this year. I was told about a different oral medication I could try but due to being of 'child bearing age' it was not something he would be comfortable putting me on.

We decided that it would be best to give the higher dosage a fairer chance (only one 90mg had been taken at that stage). I was due to take my next dosage the first week of December but due to not being well, I was put on a course of antibiotics and could then take Stelara. I got a steroid injection to my side to relieve the stiffness and pain I had been feeling in my joints and sent on my way.

A week later and I was feeling better, I then waited another 3 days before I took my next injection. The 90mg dosage came as one injection, instead of two, which made life a lot easier. I have become more confident at injecting, considering at the start of the year it was something I felt sick at the thought of but I'm am grateful for having learnt this.

As previously mentioned above, my skin hasn't been agreeing with me lately, especially on my legs, upper arms and lately my scalp. I find scalp psoriasis to be one of the more annoying things, as well as being itchy, you have to deal with flakes through your hair and on your clothes. I have found one or two dots appearing on my face lately as well, so I'm hoping it is not reappearing there but I guess this time I am more prepared for it. Last year when my face was covered, I took it very badly, hated going out in public and felt the need to avoid certain situations. I have found some very good foundations and good application techniques which would help if I feel the need to cover it, as well as becoming a stronger person to be able to deal with it uncovered in public.

Have you found your skin/joints to be flaring up this time of year? What do you find helps?


I hope to update before the year is out, but if I don't get the chance to, I hope everyone has a lovely flake-free Christmas! Stayed tuned for bigger and better to come in 2016 :)

Until next time.....

Sarah x

Double the fun.....

I must apologise for the lack of posts lately, there has been a few bits going on in my personal life that I have had to deal with, so I chose to take a break from blogging for a while.

While one issue I was dealing with is something I hope to deal with in a future post, it's not exactly psoriasis related, but stress related....so in a way I guess it is psoriasis related.

To update on my ongoing treatment, I took my 45mg Stelara as usual in August and had a return visit to my Rheum in September. He was happy with my progress, but unfortunately my arthritis was active, in my knee, elbow (which doesn't straightened properly these days) and now my ankle. My ankle had been giving me trouble for a while, and I found an ankle support did help when at work. When I bought new runners to replace my old, falling apart Golas, I found my ankle to be better supported.

With my PsA being active, but my skin coming along well, my rheum decided to up the dosage from 45mg (1 injection) to 90mg (2 injections). I was prescribed one injection to boost me up to 90mg from my old dosage a month earlier. I have been feeling great, my joints feel a lot better in that I have been doing more things that I couldn't do as well in about a year or so. My skin has had its ups and downs, mostly on my right leg but still nowhere near my worst flares.

I am due back to my rheum in November, to see how I'm finding the higher dose. I am due to take my next 90mg on Nov. 21st, all going well. In the mean time I hope to post a bit more often as I have had a few ideas during my blog break.

If you have an suggestions on any topics or issues you would like to see covered, leave it in the comments below :)

Until next time.....

Sarah x

Quick update.....

Apologies for the lack of updates lately, life has been quite busy with work, outings and a friends wedding. I wanted to update on my progress with my skin and my treatment as of late.

It wasn't too long ago I wrote about my experience with Stelara so far. Two weeks ago, I did my third Stelara injection. I did feel it this time, but didn't hesitate for too long because the sooner you do it (once prepared) the quicker it's over with. I had found my skin to be getting worse, but now I do see improvements going forward. There are still some stubborn patches near my ankle that aren't cooperating.

As for my joints, I find that I am not wearing the right shoes for my feet, therefore I do get a lot of pain in my knees and more recently my right ankle. I have also found my right elbow to be fairly painful also, especially when lifting etc. in work. I am due to see my rheum just over a weeks time, so I look forward to seeing what he makes of my progress.

I don't think the recent spate of bad weather has helped either. Do you find your skin/joints acting up when the weather worsens? Feel free to share your experiences in the comments below.

Until next time.....

Sarah x

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

Review: Bioderma

Firstly, I apologise for the lack of posts, life has been a bit busy/ stressful. Unfortunately this has also resulted in my psoriasis flaring up a bit.. But back to blogging....So you may have seen my recent Bioderma haul, well I feel like I've finally had a chance to put them through their paces and to be honest, none have failed to impress me...

(Bioderma BB Cream)

When I first tried out the Bioderma BB Cream, I wasn't too happy after spending the money on it. I applied it with a foundation brush, and it just seem to cake on my cheeks. I had given up on it but decided to give it another try, this time using my Blank Canvas blending sponge. It applied like a dream, covered my redness which tends to be around my nose and cheek areas, it really gave a flawless, even coverage to my skin. I didn't feel the need to set it with powder.

                                           (Before)                                             (After)

As you can see from the above photos, I am a bit tanned on my face but suffer from quite a bit of redness. The photo on the right is using the BB Cream, which as I previously said, really evens out my skintone and hides all the redness on my face. I'm looking forward to using it further and testing its lasting power. It does only come in one shade 'Light' which can be too dark for paler complexions.

The Bioderma miceller water has been leaving my skin so soft, especially when it comes to removing makeup using the product. Due to work I tend to be outside most of the day and exposed to all kinds of weather (which unfortunetly has been mostly rain lately!) as well as sea air so I like to try and use this to cleanse my fair from any harsh condition my skin endures. I hope to invest in a bigger bottle once I'm done with the smaller option, well worth a try!

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....

Here comes the Summer....

Life yet again has proven to be busy. In the past few weeks, work has been pretty busy (and sometimes stressful), I became a year older as I celebrated my 28th birthday and I have completed a course in Occupational First Aid. Just this past weekend we had approx. 1000 people visiting at work which has been amazing and I've earned 3 days in a row off in the process.

To update on my psoriasis, it has been behaving well lately, every area has become very smooth. I have less of an itch also. I have kept up my moisturising routine, E45 in the morning and Emulsifying ointment at night and I believe it has played a big part. As for Stelara, I am due to take my second injection next weekend. I can't say I experienced any side effects, other than a sore throat/symptoms of a cold, which seems to be common.

I had felt a bit run down this past week with how busy work and the course had been, which is plenty of reason to enjoy my few days off. This time next week I'll be in sunnier climates which makes a nice change from the horrible weather we are experiences today, with weather warnings in place.

I hope the weather has been better wherever you may be. Do you find your skin is better in the summer?

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

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

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