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Subject: Young, but experienced arthritis sufferer!
Hi all, For some reason I've never joined a forum or posted about my life without arthritis before and for some reason tonight it hit me to offer my support to others. I'm 23 and have been suffering with arthritis since I was diagnosed when I was 6 years old. Doctors have never been able to diagnose which type of arthritis I have, they also predicted I'd grow out of it when I was around 10 but this never happened. I've been through it all, and if anyone would like any advice or support I would like to offer it. To give you a brief overview, it also started when I was 6. I was playing around in my lounge when my Mum noticed my right knee was inflamed. Me, being so young, never really took much notice but I went sent straight to the doctors. I was instantly advised to take a trip to the hospital and remember sitting there at night wondering what was happening. The next thing I remember is I am having a trainee doctor sticking needles underneath my knee cap and trying to pull out water from underneath it. To go through this at 6 years old is not nice and it's a memory that has stuck with me for a long time. Why I had a trainee doctor I will never know, but it was a bad experience. So, the next day I wake up and can hardly move. Arthritis had pretty much taken over my entire body. I remember hardly being able to walk, covered in arthritis - a very strange and extremely painful experience. Something I always remember is me laying on the lounge doing my "exercises" and trying to straighten my knee with the doctors saying "Come on," in a joking way, "you could fit a bus under there". Thanks, that's great to know, but that's how bad my legs were. I couldn't straighten them at all. Soon after I was put on all sorts, I was taken all over the place, I was a guinea pig for a long of new medication. Some I could hold down, some I threw up, again not a nice experience when so young (or at any age I'm sure). Amongst many other drugs, I was put on methotrexate. Nothing else seemed to work and at the time we were told methotrexate isn't particularly a safe drug to go on, doctors weren't too sure what dose to give me, what pre-tests to do but I was given a blood test and a chest x-ray and given methotrexate (a low dose, around 10mg to start with if I remember rightly). I was also told to join hydrotherapy, every week a swim in a hot pool with physiotherapists, doing my exercises to try and get some movement back. Being on methotrexate was horrible. It made me sick, I couldn't swallow tablets either so we used to crush them up (I don't think you're supposed too) and I used to "scoop" them up off a spoon. That again nearly makes me gag just thinking about it. When I began taking the meds, I was in a bad way. To put it in perspective, my ESR ratings were well over 90 on my blood tests, I had arthritis everywhere. I couldn't sit down in school assemblies, I could barely walk stairs, it made life at school very awkward. I used to get up crying, being so frustrated that something as simple as putting on my own socks was impossible. My Mum used to help me 24/7, she was superb. She took me to all my appointments, dressed me, fed me, helped me with everything and I owe a massive amount to her. So, back to the drugs, methotrexate. The drug worked. And it worked fantastically. It took a long time to work but I gradually became able again, no more being pushed around in a pram, no more limping, I was able to get in and out of bed by myself, put my own socks on, it was great. So, this was my life, this went on from about my years 8 - 16. From about the years of 9 onwards I feel like a normal kid. I was even outrunning other friends at school, that's how feel I felt. Sure taking the drugs was nasty, but the positives way overweighed the negatives. When I was around 16, I was finally told to start reducing my methotrexate (I was at 25mg by this point), they reduced it 2.5mg every 3 months or so when I visited my doctor and monitored me. Everything was fine, I was off all drugs for about 2 years. Then, the inevitable happened. I was 18, playing football the day before and I wake with a swollen leg. It felt horrible, not seeing the leg, not the pain but knowing that the chances are I'm going to be living with arthritis the rest of my life, and that I'm going to be on drugs I hate taking for the rest of my life (unless other drugs become available of course). So, back to the doctors. I was given a choice this time. Anti-TNF's, or methotrexate. I jumped at the chance of taking Anti-TNF's but was told they should really be used with methotrexate. Being 18, and drinking, socialing etc made choosing methotrexate that much harder. The fact you can barely touch alcohol I felt would really hit my social life. And so I was put on Enbrel. Getting on Enbrel wasn't easy, I had to fill in forms and be told I was 'allowed' it due to the money costs on the NHS. I was told at least 5 joints needed to be affected and was video recorded walking back and forward in my boxers to prove the point that I needed this medication. *Sigh*. I should make a point here that by this time it really only affected my legs. I was nowhere near as bad as I was when I was younger, although in the mornings I could barely move. Still, I was finally put on Enbrel. The drug worked again great for me. Almost instantly too, less than two weeks and I felt like I had previously, fully functional and no pain! Finally, a drug I was fine taking (injections did not bother me, I've had about 10,000 by this point, I was taking it once a week), no side effects and I felt fine! Then, again. A year later, I start noticing that just before my weekly injection is due something isn't quite right. I wasn't in pain exactly, but I knew something wasn't right. I could tell arthritis was slowly crawling it's way back. I told my doctor and was told to take my dose twice a week. This briefly fixed the issue but again, I could tell something wasn't right. I was becoming immune to Enbrel. So - back to the doctors again. My choice? Methotrexate. Or, although they aren't 'allowed' to do it, another Anti-TNF; Humira. You aren't allowed to switch Anti-TNF's if one doesn't work, ONLY if you are allergic to it or you start experiencing bad side effects, such as injection rashes. So I'm told by my doctor, who for obvious reasons I will not mention, he could 'lie' on my notes and say I'm experiencing rashes and that should enable me to get on Humira, or bite the bullet. Take methotrexate, feel sick weekly, monthly injections etc but know the chances of it working are pretty high. I thought about this for a long time, a year in fact. My arthitis was getting pretty bad again at this point so I made the trip to the doctors to decide there and then. "Would you like me to lie on your notes?" "I don't want you to lie, of course, but..." "Don't worry. If you want to I will." We was making me feel pretty guilty. But then again, I pay my taxes, why the hell should I not be able to change Anti-TNF drugs if one is failing? That's what I thought, and so I asked him (although I felt bad doing so) to say I had started experiencing rashes around the injection site. I was put on Humira around a month later. A pen injection, once every two weeks. And that's all. So, I'm about 21 by this point. (I hope you're keeping up :) ). Humira worked well. But I think you can see what's coming, right? About 8 months after, the same thing. I can tell something's not right. Before I have much time to reflect on this, it starts coming back. And fast. Before I know it I'm struggling to get to work in the mornings, I'm getting in amy car and sometimes yelping as I gently hit my knee against the chair as it's that painful. And so I am off work, for 3 months. 3 months, the period it takes me to get my drugs changed again. And this time, I had no choice. Methotrexate or methotrexate. I guess I'll have methotrexate then. It all came back, the tests, the warnings, the blood tests, everything. It was a horrible decision but the only one I had. I felt very depressed. I was put on 10mg and was told to take these combined with my Humira injections. The first few doses of methotrexate were OK. It was about the 4th week of taking them, psychologically I just couldn't swallow them. I still think it's in my head, I take these and immediately I feel ill. It gets so bad I just chuck them up after taking them. I'm dreading taking them every week as I just know I'll feel sick for the next few days. So I have another decision, and that is to take methotrexate via injection. Now, I forgot to mention this, but previously I had started taking methotrexate via injection. Via injection bypasses any sickness and apparently is more effective too. The reason it took so long for me to decide to go on injections is it's not particularly practicle, and again psycologically I started feeling sick even before taking the injections. I don't know why, it's just what methotrexate does to me! Anyway, I'm going off course here. So, it was either carry on taking tablets or move to methotrexate injections. I decided to stay on the tablets for a while, as I was starting to feel the benefits. My ESR was dropping rapidly and I was feeling much better daily. I took about 2 months with Humira too before I noticed any real difference. The problem still existed though, taking the tablets was horrible. And so nearly at the present. About 2 months ago I decided to move to methotrexate injections. It's not an easy decision as you may think, there is a lot of mind stuff going on in relation to this drug in my head so nothing is very easy when it comes to methotrexate. But let me assure you, and anyone else maybe experiencing problems with taking methotrexate. If you're having trouble, take the injections. I've never felt so good. Sod the impracticalities, it's a weekly injection, it's over in about 10 seconds, it's not painful, there are no side effects (at least with me), and I am feeling so much better for it. I've also suffered badly with anxiety since I was about 16, and so mentally I've had some issues with all this too but let me tell you now, I'm 23 and I'm feeling the best I have for a long time, mentally and physically. My ESR rate is now normal, my CRP (or CPR, always forget the reading) was at 70 in January and is now at 10. Sure, I can't really touch alcohol and it was a big decision for me (I was quite a drinker) but you soon get used to it. I'm sorry that's such a long story, and I'm missed a lot out but I have been through a lot with arthritis and tried many, many drugs and been through it all (sickness, steroid injections, blood test, self injections, stiffness, depression, frustration) etc. The list goes on, but I've seen it through and am here to offer any help to anyone. My name is Ricky, and if anyone would like to talk I am always here. Thanks for taking the time to read! P.S I forgot to add. I was given the choice of self injection which would reduce some of the impracticalities, and I used to self inject Enbrel. However, one of the batches of injections I got where blunk and (obviously been unaware) tried to inject myself and the needle pretty much bounced off my leg, now pyscologically I can't inject myself, argh! I will be trying again soon though with methotrexate. :)
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