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

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 Methotrexate

Welcome back again to the second installment of this series, this time about my experience with Methotrexate...

In 2006, the same year I had gone through the tonsillectomy, I had noticed my right knee was very swollen to the point that it was double the size of my left knee. When I had a check up with my dermatologist I had asked about my knee, he then informed me that Psoriatic arthritis is a possibility due to having Psoriasis and he refered me to a rheumatologist to look into it further.

I believe it was around September of the same year that I first saw another new doctor. He checked out my knee and said it was fluid after building up which is why is was that size. He then drained the fluid and showed me it in a cup. It was yellowish in colour 'like Heineken' my doctor proclaimed. I was also given any anti-inflammatory injection in my knee in the hope it would keep it calm.

I saw my doctor every few months and had fluid drained a few times, thankfully not to the extent of my first visit. He gave me a leaflet about Methotrexate (MTX) a tablet (also available in injection form nowadays) which was known to be good for types of Arthritis. I came to the decision I would try it in the hope it would help. I was then sent for a chest X-ray which has to be done upon starting MTX, as well as regular blood tests to keep a check on liver functions, as it can have an effect on the liver. I started on a low dose of 5mg, followed by folic acid two days later. The dosage was increased as the weeks went on, to 15mg, if I remember correctly. MTX can be disruptive to the stomach and I did experience a few stomach aches but it was worth it to help my knees.

I was still on MTX up until Decemeber 2014. Over the years I have had the dosage switched up and down, depending on how bad/ or well behaved my knees were. The highest I was on was 25mg, which did not agree with me back in December and ultimately was the final straw in changing to a biologic which my rheumatologist had always offered as an alternative.

Another reason for going off MTX was due to developing psoriatic arthritis in my left knee and also last year, in my right elbow. I visited my doctor every two to three months and was usually given a steroid injection to help with any inflammation which may have been happening at the time.

I found that MTX was effective for a while, as I was on it long enough but I just found as the years went on I needed to try something different. I think it is a good option to start off on if you are new to psoriatic arthritis and are unsure of the biologics which are usually injections. I have heard other peoples experience with this drug that they could not that it as it would make them feel so ill. Also it is not recommended to drink alcohol while on it due to the possibility of it having an affect on liver function, which is another thing that turns people off. As stated above, it is now available in injection form, something that wasn't an option when I started and I have heard some people say they prefer this method. 

Its all down to personal preference and we need to remember that even if one thing doesn't work for you but works for someone else, there are plenty of options out there. That is something that will ring through when I talk about Enbrel.

Again, any questions you might have about MTX, don't hesitate to ask.

Until next time....

Sarah x

My experience with Topical treatment and Tonsillectomy.....

Welcome to the first of this new series. I thought it best to bundle these two topics together as they were treatments I first experienced. Before I dive in, a little bit of background; 

I first developed Psoriasis when I was 17 years old. I remember it was Christmas and a thick patch appeared behind my ear. I thought nothing of it at the time, until it started to appear all over my body within a few short months. My doctor was baffled and I was then referred to a dermatologist. He knew straight away, it was Psoriasis. 

This brings us to topical creams/ ointments. In 2005, I was prescribed Dovobet and Dovonex which were used in routine with each other. Dovobet ointment was a thicker consistency and contained steroids so is not recommended for prolonged use. Dovonex is a creamy consistency and not as harsh on the skin as Dovobet. 

At the start it did find it helped. My plaques were thick, white patches and like many I had the urge to pick the scabs, I'm not going to lie. Upon doing so they would bleed, but they didn't need to be picked to bleed either. As I was still in school at the time, we had a school uniform, consisting of a skirt, tights, shirt, tie and jumper. There were many days where the tights would rub off my skin, causing irritation and cracking and not to sound too graphic, the tights sticking to the blood.


My scalp was also covered in what felt like one big thick helmet. My hair would not be the thickest anyway, so it was visible around the hairline. For that I tried others like Dovobet gel which did nothing for me, and coal tar which stunk so bad but did have a soothing effect.

Over the months of using the treatments I found it did and it didn't help. As I said, it helped with the thickness of the patches but it was never truly going away. Towards the end of 2005, I was told the option of Tonsillectomy (getting my tonsils removed). It seemed to make sense because I had always suffered with my throat growing up, sometimes missing school for weeks at a time because it would be so bad. I had consultations, and the date was set, January 9th 2006. At this stage I was in my final year of secondary school and state exams were looming in June of the same year, stress probably did play a factor in it all. 

I was in hospital for 7.30am and brought to where I would rest up for the next few days. My operation was scheduled for around 9am and last thing I remember was the anesthesia injected into my hand and counting back from 10. After that, I woke up back in the room which I shared with two others, one of which was going through the same. My throat was quite sore, it was sore to talk and especially to eat. My doctor advised me that all went well and to keep hydrated and foods such as toast and crisps (yes, crisps!) were good as they helped to scrape the throat and help in the healing process.

I was in hospital for another day and a half, so I was home again come Wednesday afternoon. I was definitely glad to be back in my own bed again. I was out of school for two weeks in total. I was given a liquid to drink a few times a day to help with healing, and it did not taste nice at all, can still think of the taste of it today, yuck! But whatever helps! I was also given tablets for pain, which thankfully was minimal.

In the months after the tonsillectomy, I sat my state exams and enjoyed a good summer of sun including a two week holiday to Spain with friends. By August I had returned and my skin at almost completely cleared and then went on to proudly wear a dress to my debs for the first time in years.

In my eyes, I believe the tonsillectomy played a big part in my Psoriasis clear up back then. Even to this day, I don't get sore throats half as bad as I did when I was younger. I did use the topicals after my surgery but have felt the effects of them years on after stopping them. They tend to have an effect of thinning the skin and also find the hairs on my arms grew with this treatment. The advice I do have is if you do use these creams, use them very sparingly and not for long periods of time. If anyone was to ask me is a tonsillectomy a good step towards better skin, I would say absolutely, 100%. 

If anyone wants to know any other details about my experience with either treatment, ask away.

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

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