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

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.....

So this past Monday I returned from a week in the sun in Mallorca and I think I am only now readjusting back into normal life again. The weather was beautiful and my skin cleared up nicely as I wore shorts most days, and thankfully made sure I didn't get burned (check out my previous post for some tips). Unfortunately the last few days of being back, my skin has been starting to feel grainy again *fingers crossed* the sun shows itself here in Ireland a bit more.

Anyway I've come up with some fresh ideas with the blog, as you probably can guess from the title 'My experience with....' Is a going to be a series about the different types of treatment I have used from the time I first developed Psoriasis and Psoriatic arthritis, listed below;

- Topical creams/ointments
- Tonsillectomy
- Methotrexate
- Phototherapy (light treatment)
- Enbrel
- Cimzia
- Stelara (current treatment)

I've already written in detail about phototherapy, two of the three different times I did go through it so it is one topic I will touch on briefly over the series. As always, if I don't add something about any treatment that you do wish to know about, don't hesitate to ask, either in the comments below or privately.

I'll be starting through the above list in the next day or two, so keep your eyes peeled for that. I'll also post other bits In-between, any ideas again, do let me know :)

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

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

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