Thankful Thursday

I haven't written a thankful Thursday post in such a long time. I thought it was high time I did one considering it's the end of 2018. So here's what I am thankful for

• I have CLEAR skin. My psoriasis is gone. My PASI (Psoriasis Area and Severity Index) score is a BIG fat ZERO. I have not had clear skin since 1982 when I was living in Darwin with my sister and brother in law! So YAY!!! 
• My fingernails are looking fantastic. They too almost look completely normal. The last time they looked normal was also 1982.
• The Clinical Trial I am on has been the best thing for me this year. I needed something positive after my Dad passed away in May.
• My air-conditioner. We've had some awfully hot weather recently and this new split system has been amazing! It is making summer almost bearable!
• My bullet journal - I have loved how creative I have been. Not that I really share much of the stuff I have done in it. I have been happily setting up my 2019 bujo over the past few days.

What are you thankful for this week?

Psoriasis Clinical Trial Update

I had my first injection on Monday September 3rd. I have now had three visits for injections so far. I'm kicking myself that I didn't take a photo of when my skin was really flaring. They would have made a great comparison shot for how my skin looks right now.

Comparison shot of my left thigh

If this is what my skin look like after 18 days. I can't wait to see what it looks like in another month or so. 

I have no idea what the biologic is that I have been given but it is working!! I can't wait to have normal looking skin. I've lived with this horrid condition for 43 years (not bad considering I am only 29!!) so I deserve a break!! 

My Skin is Improving Already

I'm kicking myself that I didn't think to take photos of my skin before I started this clinical trial. A couple of weeks ago my skin was so red and raw that it burned when I put lotions on. It hurt to walk and even my clothing was making me sore. My skin was very sensitive.

Today however is a different story. My skin is looking so much better. The scales are becoming smaller, the thickness of my P is thinning out.

These two photos are of my left thigh

My right lower leg.

I'm not taking photos of my torso but that is where I have seen the most improvement. Also my arms are looking pretty good as well.

The only other thing that I have done differently this past week is switch to a new moisturiser - QV cream by Ego. A good friend gave me a tube of the cream last weekend and I have used almost all of it already. It feels great and I believe it has helped tremendously.

I wonder what my skin will look like in another weeks time.

Clinical Trial - Baseline Visit

On Monday I had an appointment at the Dermatology clinic in Melbourne. I was to find out whether I qualified for the clinical trial. Basically I had to wait for the blood test results to find out if I could proceed with the trial. I had already been given clearance in regards to the mental health side of things.

I made it! I am in the trial! All of my blood test results were okay. The doctor did point out that my BGL (blood glucose level) was high, 8.2 mmol, but I pointed out that I am a type 2 diabetic and that I had eaten about 2 hours before my bloods were taken. So it was still within my allowed rage.

My skin was checked again to get my new PASI (Psoriasis Area Severity Index) score and my BSA (Body Surface Area) score.

                       PASI              BSA
13 Aug           16                   35 %
3 Sept             29                   51 %

I knew my skin would flare due to stopping the methotrexate four weeks before this baseline visit and stopping all medicated creams/ointments two weeks before but I had no idea that my skin would change as much as it did. I guess it shows that even small amounts of medicated creams, that aren't as effective as they use to be, are still helping keep my skin in better condition than I realised.

I have no idea whether I am receiving bimekizumab or adalimumab. I guess it doesn't matter really just as long as it works. All I know is that I received two injections and I have a bruise the size of a 50 cent piece (approximately the size of a 1 inch circle).

Let's hope that I have some good results from this!

Clinical Trial Update

I just had a phone call from the Dermatologist Clinic in regards to the clinical trial. As a precautionary measure I needed to get a mental health assessment. The clinic has not heard back from the medical mediators but the dermatologist in charge of the trial at this clinic has checked out the letter from the psychologist and sees no problem.

My appointment for Monday has been changed to an hour earlier, which is good, and I was told I should be okay for the randomisation. I assume that means I've made it in to the study. I guess I find out for sure Monday afternoon.

Clinical Trial - Assessment Appointment

I was meant to be starting cyclosporin a few weeks ago. The day after I saw my derm I received a phone call in regards to a new clinical trial that was about to start. I would be guaranteed either humira or bimekizumab. I thought why not try it. What have I got to lose?

Yesterday was the screening appointment. It took longer than expected and it made for a very long day travelling in to the city from the country. I have a new pasi score of 16.3 (down from 21). I had an ECG, chest x-ray and blood tests done. I also gave a detailed medical history. I really thought that they may have wanted to know when I had my last poop

All I need to do is wait for the results of the tests, provide a mental health evaluation (due to having depression and there were some concerns) and I should find out in a couple of weeks whether I made it into the trial.

I stopped taking methotrexate earlier this month and next Monday I will need to stop using any medicated lotions and potions as there needs to be a 2-4 week wash out. My skin is flaring, red, angry and sore right now so I am really hoping that I make it in to this trial. If not then I start the cyclosporin and resume seeing my dermatologist as previously planned.

Psoriasis Clinical Trial Update

I received an email on Wednesday in regards to the psoriasis biologic trial. It's a lot more involved and longer than I was told it would be but that's okay.

Each visit (29 of them) may take up to 4 hours  some of them will involve a complete medical examination. I will be required to complete a daily diary on how my skin & mental health is going & there's a weekly questionnaire as well. There are some restrictions on medications, prescribed and OTC, that I can take and some that I may need to stop whilst on this trial.

However this is all subject to my passing the screening visit, which wont be for another couple of weeks. There will be only three patients accepted at this particular clinical trial It's a global study that has 100 other clinics participating. So I may not even qualify.

There is a small bonus though if I make it on to the trial, I will be entitled to some compensation in regards to my travel. As my Mum would have said, Every little bit helps said the little old lady as she widdled in to the ocean

The biologics involved are bimekizumab and adalimumab (humira).

Psoriasis Clinical Trial - I've Made my Decision

I have decided what I am doing in regards to the psoriasis clinical trial. I contacted the dermatology clinic this morning and told them that I am interested in proceeding with the trial.

So here's what will happen. The co-ordinator spoke with my derm, I am to continue taking my methotrexate until the screening appointment, which they are hoping will be in the middle of August. They don't want me to have a flare before then. If I meet the criteria and pass all the necessary blood test requirements I will stop taking the mtx and be part of the trial. If that doesn't happen, I assume that I go back to the original plan of stopping mtx and switching to cyclosporin.

 Even though I had reservations about participating in the trial I believe that I will be able to cope with what is expected. I'm not looking forward to all the travel involved but it will give me extra reading time or knitting/crochet time so that has to be a bonus, right?!

 One step at a time. Plus I may not even pass the screening. I've not got anything to lose really.

Psoriasis Clinical Study - Pros and Cons

Here's a list of pros and cons that I have come up with in regards to the clinical trial.

I still don't have a lot of time left to decide if I want this or not.

If I stay with my original decision of cyclosporin I will need to work out which day to start this medication because I have to get blood tests done exactly two weeks after taking my first dose.

I would love to put this in the too hard basket and ignore everything but I am unable to do that due to the time constraints.

Mark and the boys have said it is my decision. They will support me no matter what I decide. While that is great it doesn't help me choose!! 

Psoriasis Dilemma

When I saw my dermatologist on Wednesday I had a decision to make in regards to taking either acitretin or cyclosporin because the methotrexate I was taking was no longer helping. I chose cyclosporin. Which I was going to start last night as I needed to wait for my prescription to arrive at my chemist (they had to order it in). I picked up the script this afternoon.

BUT ... yesterday afternoon I received a phone call asking if I want to be in a clinical study for a biologic. My derm recommended me as I would be a good candidate. The study would involve my travelling in to Melbourne weekly for 16 weeks and monthly for approximately 9 months after that. A high level of commitment is required on my part but I am not a 100% sure I can do it. Also,  I would be guaranteed the biologic as it is a comparative study so I wont have to worry about receiving a placebo.

Here's the dilemma, if I go on the study I need to be off any oral medication for my psoriasis for a month before I can start this study (the idea of a flare is making me cringe). I will need to wait 2 to 3 weeks before I can have my initial consultation to see if I even qualify. I only have a short period of time to decide as there are only 450 places worldwide. It's a first in first served deal and the limited spaces are filling up.

OR I can just begin taking the cyclosporin and hope that works.

The idea of going on a biologic is very appealing. It's a way to jump straight to a biologic instead of having to try other options that medicare wants patients to try first before they even allow this 'new' stuff. However, I don't know if I will be able to fulfil the requirements for such a long period of time.