Goodness, how time has gotten away from me!

Howdy folks!

I can’t believe how tardy i’ve become in updating this journal, things have been VERY hectic for me since early September.

In my last post I was very excited about my inflammation levels reaching an all time low at 8! So far, it appears to have stayed, which is even better news! Due to feeling like a million bucks, i’ve been able to go back to college and get a proper education, which I’ve wanted to do for years now. I’m studying Animation, Art and Design at Motherwell and hope to progress to university next year to study Game Concept Design or something similar.

It’s all very exciting!

The bad news with this post is, I appear to have contracted Swine Flu. Neither my GP or rheumatology nurse seem very worried just now. I’ve been confined to the house as per regular instructions, told to rest, and have been given a sick line for 7 days off college and told if I experience any breathing difficulties or chest pains to go straight back to the doctor. My nurse told me not to take any Methotrexate or Humira this week and to go back for a check up at my GPon Wednesday. The reason for no drugs is the likelihood that Tamiflu can interact with the Methotrexate and increase the Methotrexate Plasma Toxicity. Bad times.

I’m feeling pretty lousy at the moment, so I’m off to lie down. Thank god swollen inflammed joints are not accompanying this!

Hospital Appointment.

I have some very good news I feel compelled to share here at my blog.

On Wednesday I had my first appointment at the Rheumatology Clinic since starting Humira. It was the six week mark after the first injection and Vicki, my RA nurse, wanted to see if there had been any improvement, side effects etc. I told her how I felt the difference almost immediately; vastly reduced pain, stiffness and a massive increase in energy levels. She noted how much more freely I seemed to be moving and proceeded to check my inflammation levels from my last blood tests, which were done on Tuesday 18th Aug. Vicki looked very bright suddenly and excited and asked me to guess how low my ESR was. I begged her to tell me it was below double figures, grinning, and she loudly and proudly pronounced – 8!

My ESR is at 8!! \o/ – hooray

Possibly the best news i’ve ever recieved! Mutti was with me at the time and asked what was a normal number for someone without arthritis and Vicki said anything between 5 and 10. I can’t remember a time when my levels were that of a arthritis free person I’m super excited by this news and hope to god it continues.  The only slight dampener, though not too concerning, was the fact my White Cell Count is slightly below normal.Vicki had another blood test taken just to keep an eye on things and I assume if it gets alarming she will call, otherwise i’ll get the results at my next nurse appointment at the GP.

If I continue to feel this good and the inflammation levels stay normal then i’m seriously considering going back to work. I miss that freedom and independence very much. Just the way I’m feeling just now though i’m already on the verge of going back into education now i have more energy :] So far so good

After a month and a half…

It feels like so much longer…maybe it’s the length of time between each injection that makes it appear so. Who knows, the main thing I want to update about is my increased fear of injecting myself.

Today was injection number four and sure I have my family here who can easily take over I’d rather I managed to get through this myself because it would become a right pain to have to have someone present each time in the future when I move out or go back to Uni or whatever: especially if it was out of the country!

I’ve tried leaving the pen out of the fridge from anything between 30mins – 1hr, using an ice pack to numb the area first and even various bits of my legs; it makes no difference, it still stings like hell. I’m considering trying my tummy next time to see if that makes any difference at all.  I may have a look around to see if there is any advice or tips on forumand things to make it less painful besides what i’ve already tried.

Thus far the only persisting side effects appear to be the sap in energy on the day of the injection and this spreading rash on the lower half of both my legs :/ I’ve got an appointment with my rheumatology nurse tomorrow for an update and the specialist 6 weeks from now, but i’ll be mentioning and showing her the rash and hope she can offer some advice.

Post Injection #2 and Injection #3

Things are going really well. The noticability of the benefits weren’t as full on as they were after the first injection, but something more gradual. The realisation that you can do some things after-the-fact that you weren’t able to do before and even some bigger things like jog for shelter in a sudden downpour! The other week my friend’s mum needed the window closing and I managed to climb up onto a chair with very little trouble at all and back down without wincing, it felt amazing! Yip, somthing as simple as that put a smile on my face for the rest of the day.

What I’ve noticed now though, that i’m not focused on the pain so much, is the significant increase in energy I have. I’m not so tired all the time and have more stamina when faced with the outdoors, my sex-life or late nights. It’s really good, the pain i’m experiencing with the injections [initial sting and liquid insertion] is horrid, but the relief is 100% worth it.

So far so good regarding illness and side effects. The headaches appear to have subsided but I’ve had this dry, patchy skin condition for many years, one that doctors have tried to treat and aren’t really sure what it is. In the last month or so though i’ve noticed it flares up more frequently, getting very red and itchy and appears to be spreading. :/ I’m hoping it’s not a reation to the Humira, and if it is, not an allergy and something that can be treated with more steroid cream or something else. I shall be phoning my rheumatologist today for some advice :]

Injection #3 went swimmingly. A couple of weeks ago I was left to my own devices, as you maybe saw in the photos, with a little help from Mutti because HAH were understaffed and obviously needed all they had for people who really struggled or were in need of their induction. Joanne was back this week though and as it happened my boyfriend was in town. He lives in England and since I spend about half of every month down in his home I thought it prudent to have him trained by the nurse whilst he was available :] I’ve run over it with him a few times prior with the practice pen, but the nurse was obviously more thorough about the dangers, saftey and hygeine etc.

Having someone else do it gets it over with much faster and frees your hands to squeeze your best friend’s hand to a mushy pulp ;]  The down side is the lack of control on your part which can lead to extra bruising and bleeding, at least at first. James did very well and if he was especially nervous, it didn’t show :] I know he has a lot of apprehension regarding the drug and it’s side effects and the infection increase, but he understands the importance of it as well and completely supportive of the choice I made and instead of worrying out loud, which would likely make me more nervous about taking it, he keeps whatever’s left of that inside and instead offers lengthy hugs and kind words of support and encouragement like my family do as well :]

Being a needle phobe is rubbish though.I know the drug is beneficial beyond anything i’ve ever taken and would never stop taking it unless they found a cure, i can already feel myself baulking at the idea of injecting the stuff even though im fully aware that it’s only 10 seconds for a relatively normal life! I’m wondering if it’s something that will become harder before it gets better. I mean pain is something the human body is designed to forget after a while and the better one feels from taking the drug the more reluctant one might become in wanting to inflict even a short amount of pain on ones self… Like I said, I already feel myself getting more antsy the closer the injection date gets and definitely think it was the right move to have James do it and possibly will get him to do it each time i’m staying at his so he doesn’t get out of practice ;] Here I think i’ll train my best friend and Mutti too. In a couple of weeks i’ll let one of them do it, whichever is feeling up to the task at the time ;]

Post-Injection #1 and Injection #2

I’d heard some great stories about folk recieving their first injection and within the first 24 hours felt amazing. I’ll be honest, I was a sceptic. Mostly because I’d read very similar stories about the amazing benefits and remissions after taking Methotrexate and in all my years of taking that, never had the benefits described.

Humira is an entirely different story. I took the injection around 12:30pm on the 14th and by 10am the following morning I felt extraoridinarily good! I felt the difference right away when I woke up groggily and realised my hands, more specifically my thumbs, weren’t in agony. I squeezed them and everything and there was no pain! Before even lightly brushing them or leaning with them was like being on fire. I woke right up then and sprug out of bed, yes sprung! The morning stiffness and bodily aches all over were also gone. Unable to wait to share the news with my family I rushed downstairs and naturally everyone was pleased and excited.

Over the course of the 1st week I found I could kneel on our carpeted stairs which was impossible before and even run (!) up them to a degree. Not only that I found I was much less tired and more energy too. It was an amazing turnaround.

However the news isn’t all great. By the end of the first week I found I’d started to get stiff again, and then slowly each day found aching muscles and joints. Clearly the effects of injection#1 were wearing off. I was disappointed and grumpy on first realising, but I resigned myself to the fact that it’s likely with more injections and as the Humira builds up in my system, i’ll feel the effects for longer and hopefully all the time eventually.

I’ve noticed no major side effects from the drug yet, though I did have a persisting headache for the first few days after the first injection which may or may not have been related because I think I might need my eyes tested.

Over the last few day actually found myself craving the next injection even though I have a stupid fear of needles and know the stinging is less than pleasant. The relief the drug brings though is utterly amazing and having felt it first hand wouldn’t give this drug up unless it would kill me. I think when you experience the chronic pain of Arthritis daily, even the most dire side effects can be accepted as a possiblility to have your life back painfree.

Injection #2 was today. Yesterday Healthcare at Home called to say they wouldn’t be able to send a nurse to me today becase they were short and gave me two options 1] They could send a nurse on Wednesday <tomorrow>, or, 2] I could go ahead an do it myself and they’d send a nurse out for my next injection instead. This is what I agreed on. Like I said, not keen on injections, but I was confident I could do it myself because last time went so well and the relief of the next week at least will be wonderful.

Mutti and my sister were there for support again today and Mutti even helped me when it came to pushing the button. I had to psych myself up again and she gently puther hand over mine to stop me accidentally pulling away, because let’s be honest, it’s a natural reaction to stop something hurting.

It went well though it stung quite badly this time. I think I used it too quickly from the fridge. I had it out for 20mins and the first time it was out for about an hour. I’m thinking next time I’ll take it out between 30 and 40 minutes before injection. It bled a little this time as well, but that’s ok, apparently it’s quite normal though.

It’s been a little over 2 hours and I’ve felt a little headachey and dizzy but nothing too untoward.

My sister took some photos this time I thought i’d share with you.

Delivery and Injection #1 – A Day Early, Here’s Why.

Humira Box Containing 2 Pens.

Delivery

Originally the delivery was due sometime this afternoon (Tue) but yesterday my Healthcare at Home nurse called and asked if she could reschedule our Wednesday as her day was rather full and she knew we had plans for the evening but couldn’t guarantee she’d make it over in time especially through rush hour traffic. What she did then was ask when I was available this week and realising I had no plans today (Tue) asked if that would be fine, which I obviously agreed to (get it over and done with and all!). She then called the delivery team and asked if they could have my drug delivery in the morning rather than the afternoon to allow her to squeeze me in. They couldn’t guarantee that would happen as the schedule had been written up already, but I was pencilled in.

This morning the delivery arrived around 9:15. I’d been awake since 8:00, lying in bed, feeling anxious still and nauseated at the thought of the injection and not knowing when it’d take place exactly within the next few days. As soon as it arrived though I seemed to calm down. I guess knowing the wait was over and resigned myself to the fact it would be happening this morning after all was somewhat of a relief.

Injection

Joanne, the nurse, arrived sometime after 11am and the entire family sat around as she talked us through; the delivery process and how we should check that the correct drug has been delivered, the correct dose and that nothing is faulty or damaged, how to store the drug in the fridge at the correct temperature and transportation for holidays and trips, a little information on what Humira was and how it affects your body and explained about proper disposal for damaged, faulty and used pens. She then slowly went through the process of injecting with a practice pen before handing it to me and asking me to repeat the process back to her.
Afterwards it was time for the real injection. My palms started sweating and as I placed it to my thigh I stopped because I couldn’t bring myself to push the button! Joanne was perfectly patient and just told me to take a deep breath and go at my own pace. After a few moments I clicked. Because I have sore, stiff thumbs we tried to work out an appropriate method to ensure I didn’t let go too quickly, so the pen was still held steady in a fist with one hand holding and clicking, and your other hand on top of that hand was what we decided. I’ll maybe try and get a photograph of this next injection because it’s not that easy to describe what I mean.

The pen is spring loaded and once the button has been pushed it all happens very quickly. I was to count slowly to 10 to ensure all of the drug was injected and then pull it straight up and out. It was quite surprising when it happened, the prick is almost indistinguishable from the sting of the liquid and it really does sting quite a bit. Joanne said some people do prefer the syringe method because you can then control the release of liquid better and slower sometimes helps, but I have quite a fear of needles and would definitely rather the sting. Even though it’s quite nippy it’s really no worse than a bee/wasp sting. It’s been a few hours now since I injected myself and other than a bit of pain around the injection site I feel fine. The initial stinging lasted about 5 minutes then it hurt for a further 30 if I got up too quickly and now it’s just if pressure is applied to the area. It got a little hot for a bit as well, but that calmed down after about an hour as well.

So far so good. Now it’s a waiting game to see if I feel any relief. 2-8 weeks is the norm, lets hope for sooner rather than later.

Sharps Container.

Some pre-injection jitters.

I know I said the next update would be injection day but I feel this is relevant.

Over the last week or so I’ve been dwelling on the injection and the 15th July is hanging over my head like a hangman’s noose! I really just want the first injection over with so I don’t “chicken out”. The waiting is very frustrating and gives you all the time in the world to scare yourself silly by reading and re-reading all the information you can get your hands on, which is really not as helpful as you intend it to be. I do it to try and reassure myself and get all the necessary facts in my head and planted into my memory as I have a terrible bad habit of forgetting things.

Last night however was awful. I couldn’t get to sleep for the pain in my thumbs and my mind started working overtime so I wrote a Livejournal post about my worries and plans for next month to try and get all the swirling ideas and thoughts out of my head. It had started to work until I visited the Healthcare at Home website and started to explore that…

I’m sure this fear is common to people in my position; the overwhelming enormity of everything that’s about to happen and the lurking black cloud of unnerving possibility. The feeling of dread comes in waves though, it’s not constant as everyday life does take over and for a while you can forget, but it does come crashing back home sometimes and nausea is top of the list regarding physical rather than mental feelings.

I spent at least some of last week trying to reassure my boyfriend that the information is there due to policy rather than dead certain fact that you will end up with one or more nasty side effects and him being there for me would help a lot and if something did arise, we’d get through it together. I also reminded him that the hospital and GP’s will be keeping a constant eye still with blood tests and regular hospital visits and a nurse would be close by for a little while for each injection. I’m pretty sure I was trying to convince myself as much as him though.

How I manage to get myself out of that mindset is by thinking of the logical aspects like; healthcare professionals monitoring everything closely and also the potential for a positive outcome. Thinking about all the things I might be able to do again, even something as simple as kneeling down or being able to properly enjoy fairground rides, having more energy, taking a bath(!), all of these things and more ease the anxiety and calm me down enough to either get to sleep at night or function through the day.

Hi folks!

I’m 23 years old as I write this and 1 week from now I’m going to embark on a biological treatment course for my Inflammatory Arthritis.

Currently I’m dosed up on:

• 2000mg of Sulphasalasine daily – thats two 500mg tablets twice a day.
• 400mg of Celebrex daily – thats two 100mg tablets twice a day
• 20mg of Methotrexate weekly – thats two 10mg tablets once a week.
• 5mg of Folic Acid weekly – thats one 5mg tablet once a week.

On top of all that I’m inclined to knock back any other pain relieving drug I can safely take with the combination above, which isn’t much. It’s mostly a nice combination of Paracetamol and Codeine which makes me feel sick as hell. Codeine and I are NOT friends, so recently I was put back onto Tramadol which apparently makes most people feel worse than Codeine (not me thankfully) though it does knock me unconcious and then dopey when I wake up from that 2-3 hour “coma”. The pain relief is worth it though if you don’t plan to go out galavanting.

Taking this concoction of drugs hasn’t helped enough though;  i’m still sore all the time, stiff, have hot joints and fatigued beyond belief. My blood test results since going up to 20mg of Methotrexate on 07/04/2009 have been unsatisfactory to my Rheumatology Specialist:

ESR

44

CRP

26

29

As you can see the results aren’t fantastic and appear to be rising again rather than continuing to fall as one might expect on the highest dose of everything going. It is much better than the original 80+ I must say, but the figures don’t really match how I feel. I don’t feel any better than I did when those numbers were doubled, so with that in mind I was sat down and my Specialist said she would like to try Ant-TNF treatment and over the course of a month I did all the research I could, found some rather frightening information in the process, but ultimately came to the conclusion that I was out of options and this is the next step.

I start Humira on the 15th of July and I’m nervous. It took between 4-6 weeks to set up after making the final decision. Xray’s of my chest were taken, blood tests for normal full blood count (Biochem and Haem) as well as one to test for Hepatitis B. I then had to fill in some questionaires and was given an information pack with a training pen (needle free) away with me to practice injecting myself. My Rheumatology nurse had to fill in a mountain of paperwork, send that away and arrange for a team called Healthcare at Home to deliver the drug to the house.

About 4-5 weeks after the last hospital visit Healthcare at Home phoned the house to arrange a time to deliver and explained once again that the drug had to be kept refrigerated until used and after the first delievery is arranged it’s usually on the same day you’ve chosen every two weeks around the same time of day. Once that was sorted out a nurse then called to arrange a day to come out and administer the first injection, however he or she will continue their visits until you’re confident you can do it yourself.

I guess through all the trepidation and fear after having read about side effects and complications I’m a little bit excited as well because this could be the treatment that could change my life. Sure there have been sacrifices along the way and even more to come I’m sure, but hopefully, if this works the way it’s intended to, none of that will matter compared to what I could get back.