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.

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Published in: on July 8, 2009 at 12:28  Comments (9)  
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  1. I surfed over here from LJ. Good Luck!!!!!!!! I sincerly hope the Humira works for you. My Rhuemy has discussed it with me and she is a huge fan. She beleives that for an otherwise healthy person the benefits far exceed the risks. I know the side effects are scary, really, REALLY scary but you can’t find as much information from people who are happy with the drug.

    I may be starting MTX and am nervous about that. Thank you for doing this and sharing your expereince. I’m corssing my fingers and all the other crossable bits that this helps you feel better.

    • Hey, thanks for coming on over and commenting 🙂

      I started MTX a good few years ago now and stayed at 15mg for about a year before changing doctors a few times and them finally boosting it to 20mg quickly. It has worked for me to an extent, bringing my inflammation levels down to the mid-twenties/thirties when it was way up in the eighties, but it’s not been enough. MTX has its own list of nasties, and I was terrified at first and refused to take it for about a year before the pain became so bad I gave in and bit the bullet. I’ve had no adverse side effects, not even the common nausea people talk about, but i appear to be quite lucky in that respect and drugs rarely give me bad side affects.

      I’m happy to answer any questions you might have about MTX. The drug does it’s job, for a lot of people remarkably well and really if you’re constantly in agony and flaring up, MTX is the way forward and I absolutely wish you the best of luck in achieving remission with it, afterall that’s what we’re all aiming for.

      I’m happy to share my experience with others in a similar situation seeking out first hand knowledge and only hope it will serve some purpose and help people make difficult choices, give them the information they’re seeking and perhaps get them through the other side 🙂

  2. Hi there,

    I just want to give you some positive feedback from someone who has been using Humira for quite a long time (first injection July 2003). Before using Humira I was on Sulphazalazine, Prednisolone, Metatrexate etc etc and various pain killers – over the years I’ve tried just about everything available (I’ve had sero-negative inflammatory arthritis for aprox 25 years). Like you I was scared of the stuff I read about this drug but felt that the quality of my life was so poor that it would be worth a go.

    The drug made a huge difference within approx 12 hours. I couldn’t believe it! my pain started to fade, I had loads more energy and I was able to sleep without my splints on for the first time in years… I came off all my other drugs and now only use Humira. I know other people on this drug and have to say no one I know has reacted as well as me but most have benefitted quite a lot.

    For me the good affects carry on to this day – my CRP is 1, my ESR about 4 and the only pain I get is from the damage I already have in my joints. I have been able to go back to full time work and can lead a near-normal life. I really wasn’t expecting the drug to work so well but it has. I know there may come a time when the drug stops working so well but what ever happens I’ve had 6 years of good quality life given back to me.

    Good luck with your treatment – I’ll come back and check how you are getting on. Feel free to ask any specific questions that you may have.

    Best regards,

    Trina

    • That is very encouraging to read, thank you so much for coming over and sharing your experience with me and any other people who might also come and read.

      When you make such a drastic decision to improve your quality of life it’s normal, I think, to do as much research as possible before and after the decision. I’m definitely ready for this, but it doesn’t stop me being nervous because I’m a sad creature of habit when it comes to illnesses i’m afraid, not only do I get pretty much everything going around I tend to get it more than once (Chicken Pox 3 TIMES!) as well. So I guess my main question is, how cautious are you when it comes to illnesses? Do you actively avoid large crowds of people, trains, buses, gigs etc? How serious must an illness be before seeking medical advice? Are there any other foods one shouldn’t eat besides; sushi, soft cheeses and pate?

      Thank you for commenting and I look forward to any advice you have to share and seeing you around 🙂

      • In answer to your question about how cautious I am about mixing in large crowds etc – I don’t really take any extra precaution, mind you I live in a rural area and don’t often find myself in really crowded places. I haven’t found that I catch more colds etc than anyone else but when I do get a cold it does tend to last much longer than other people – up to about 2 weeks.

        The main thing to watch out for is infections – if you get a chest infection or anything like that phone your rheumatology dept. to get advice about what to do. They will probably tell you not to inject yourself for a while until the infection has cleared up and will probably give you antibiotics sooner rather than later. I’ve been lucky and have not had to come off the drug much but I do know a couple of people who have had to miss a lot of injections through random infections.

        The other thing to ask about is what to do about going to the dentist. Some doctors say miss one injection before going to the dentist and some don’t so you will probably have to take advice on that one.

        Regarding food – I’ve not avoided any food myself and haven’t had a problem but again I think it is all about the risk of infection or food poisoning being a problem with a depleted immune system.

        The only other common problem that I’ve heard of is soreness around the injection point. This can settle down after a while but also it can continue to be a problem and has caused people to come off the drug.

        For me this drug has been great but I do understand the need to be sensible about responding quickly to any illness that comes along and makes you feel ill. Don’t just go to bed and think you will be better in a couple of days – always contact your rheumatology team if you are at all worried by any symptoms you may have (your GP may not know enough about Humira as GPs can’t prescribe this drug).

        Well, here’s hoping humira will work as well for you as it has for me! Let me know if you have any other questions…

      • Thank you for responding so quickly, i’ll definitely keep all this information at hand 🙂 My rheumatology nurse warned me about the dentist thing and advised I get any treatment done before starting, however, my TMJ joint in my jaw is pretty screwed and I can’t open my mouth very wide at all, certainly not enough for a dentist to do anything significant with so although I could probably use a filling done/replaced I don’t have much choice 😦 I am waiting for a referal to a specialist team for TMJ, so maybe they can fix the problem as there’s apparently no damage from what they can tell from xrays.

        I’m hoping this is the treatment for me, I could really use some respite. It’s great to hear it worked for you and long may it continue 😀

    • Trina,

      Thank you for posting this. MANY of the blogs and articles you find on the internet are about how bad things are. My Rheumy keeps telling me that we can find the right treatment and I will feel good and relates how well some of her other patients are doing but I REALLY needed to hear something good first hand.

      Meaux

  3. great article! I really find it interesting how you addressed the different methods for fighting off inflamation. Give us an update on how it’s going and maybe we’ll follow your routine

  4. It’s great to hear the details about how Humira has worked for people. I am hoping it works for me as well. I thought you and your readers might be interested in the latest best thing I’ve used to help with stiffness from my RA – the ChiliPad. It’s a mattress pad that lets you cool down (or heat up) your bed, any temperature between 46 and 118 degrees. At first I only used it days when the weather and my joints didn’t agree, but then I began using it every night after I realized how much better I sleep – and that my symptoms are reduced the next day.


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