Anti- TNF Himera changed my whole life

Firstly I haven’t posted in ages and you’ll get to that point in my life in a couple of posts, but I think now you will have to forgive me for irregular random entries in my story, all will be explained. But for now, let me share the first factor in that.

I said in my last post, that I felt more capable of working when I went on to Himera, and you may remember a little while ago I told you the story of how when I was getting sicker I gave up a much better paid job, which involved travelling, for a local job, which didn’t make me feel so ill, as I didn’t have to get up early, or endure the physical demanding element of getting myself up to London to present training courses weekly.

But I would be lying to you if I didn’t admit that for the four years I was in that job, I hated opening my pay packet, because I knew I was capable of earning far more and having a much better life style (but health isn’t worth giving up for money). But now…. Now… I was much better again, so what do you think I did. Stay in that lower paid job? No, of course I didn’t. I got a better paid job again!!!

I can’t tell you how thrilled I was to be able to stop worrying about money and start feeling proud of myself again.

I do have to travel, and I had a 1 hour 10 min drive into work each day when I started, which was a bit of gamble as I can only comfortably drive for an hour. But I coped, and basically we decided to move house to cut my journey. My wonderful hubby said to me, you’re what’s important if you need to move nearer I’ll do the long journey coming back.

I have to say though when I job hunt I don’t want to be in an organization who doesn’t welcome disabled people. So when I went to the interview, I said, I have a disability, and explained, and explained I couldn’t do really long hours, or lots of travelling, and I couldn’t get in early. I have to say, not only did I get a much better salary,  I really fell on my feet with a good employer. They let me start at 10 and work at home two days a week. There are times I have to go up to London, or Southampton,  but I get to book the meeting times, so I make them in the afternoon so I don’t have to kill myself trying to get out early when my body still doesn’t really want to do that.

If I don’t have the two days I work at home, I do feel ill then, it starts to compound and my body says, you’re doing too much with one symptom or a another. But believe me I could never have done this job without Himera, and I feel so much better now we have a bit of spare money to spend.

When I went back into the clinic in the hospital, I told them I’m not like some people, able to start running marathon’s, I still can’t do anything excessively physical but I have been able to get a much better paid job. They were pleased for me. And the Doctor said, people begrudge paying for medication, but the money is drawn back if people can keep working and pay tax.

So that’s where I am now, working full-time in a much better paid job, with a bit of a commute.

In my next post –whenever I get that written – I shan’t promise – I’ll talk about my experience with diet.

AS is my burden, writing is my escape.

And if you are looking for the best help to improve your Ankylosing Spondylitis then for me it was the AS course at the Hospital for Rheumatic Diseases in Bath, UK. This hospital is now threatened with closure, if you wish to sign the petition to keep this hospital open, please click here. It changed my life (You can attend as a private patient or on the NHS). And if you would like more information on AS take a look at National Ankylosing Spondylitis Society, NASS, website.

Captured LoveMy novella, Captured Love, telling the story of a subsidiary character from Illicit Love is now available on amazon.com/amazon.co.uk and to celebrate I’m running a competition offering giveaways including a night in the Regency Hotel, London, an amazon voucher, and free copies of Illicit Love. Find out all the details here.

My debut novel, Illicit Love, is available on amazon.co.uk and amazon.com (writing fiction has been my preferred painkiller for years and now I can share my escapism characters).   

If you want to find out more go to my books page or my website www.janelark.co.uk  like me on Facebook or follow me on twitter @janelark

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What’s Himera done for me…

Well how much has my life changed since I went on this wonder drug, I’m sure you’re all longing to know.

The first thing I noticed was, I could clean. I know it sounds silly to get so excited over cleaning, but I’m a person who likes tidiness. If you’ve been following my blog for a while you might remember how upset I got over a physiotherapist telling me I didn’t need to clean my house properly. I don’t think my standards are that high, but at least once a week I like to see everything sparkling and tidy, so I can feel, ahh, I’ve got a really nice house. But for years I hadn’t been able to clean, it was just too energetic, so my husband and my daughter cleaned, and they can live quit happily in a house that looks like a rubbish heap, so neither of them clean thoroughly, which means I then nag them to do this or that. Not a combination for a happy life.

So, with the extremely reduced pain, and increased energy I had from Humira switching my AS down a fair few notches, I tested my energy levels by picking up a duster and a cloth, and I cleaned our bedroom and our bathroom – AND THEY SPARKLED!!! If you only knew how jubilant I was over such a tiny thing. But it felt so good to look at the rooms and see them look nice.

Humira hasn’t made me a hundred per cent better, I still can’t clean much more than one or two rooms at a time, but the fact that I can clean one or two still makes me feel so much better about myself and my life.

What else did I start doing? Oh I started dog walking again, more regularly, another fab novelty.

I have heard of people being able to run marathons, I can’t come anywhere close to that, I can’t do any sport, my energy levels still drain pretty quickly if I try to do anything too active. But I am much better, fatigue doesn’t hit me a 2pm like it used to. I can work longer, and think better… Well, that has had a huge impact, and I’ll share that next week.

AS is my burden, writing is my escape.

And if you are looking for the best help to improve your Ankylosing Spondylitis then for me it was the AS course at the Hospital for Rheumatic Diseases in Bath, UK. This hospital is now threatened with closure, if you wish to sign the petition to keep this hospital open, please click here. It changed my life (You can attend as a private patient or on the NHS). And if you would like more information on AS take a look at National Ankylosing Spondylitis Society, NASS, website.

Captured LoveMy novella, Captured Love, telling the story of a subsidiary character from Illicit Love is now available on amazon.com/amazon.co.uk.

My debut novel, Illicit Love, is available on amazon.co.uk and amazon.com (writing fiction has been my preferred painkiller for years and now I can share my escapism characters).   

If you want to find out more go to my books page or my website www.janelark.co.uk  like me on Facebook or follow me on twitter @janelark

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Trading pain for discomfort

The last couple of weeks I’ve been talking about my experience with Anti-TNF treatment – the AS wonder drug. Well after my first injection for me it was only a wonder for a week. I was back in agony, and couldn’t believe how much it hurt. Really if you think the pain is bad lose it, and then have it hit you again all at one go, rather than gradually building up, and then, well… I just remember sitting with my husband as he held me and being barely able to breathe because breathing in hurt my ribs and back so much.

When I spoke to the nurse she said it was really unusual for it to wear off, as Anti-TNF is designed to work for the exact period of the dose, so there was no explanation at all for it cutting out after a week, when Humira is meant to last two weeks. She just told me to take the next injection. Which I did, and again, as I said last week, I could feel it in my veins targeting all my aching joints. Phew.

It hasn’t cut off like that again, but me being me, with my luck, it didn’t mean I had an easy path even then.

The next two injections went well, and literally my back pain went from 7-8 out of 10, to zero, but then when I took an injection, an odd thing happened. I don’t know if anyone else has had this, but I had an allergic reaction, within hours the injection site was itching, and then it began swelling into a huge a lump, I ended up after forty-eight hours with a saucer sized viciously red swollen lump on my leg, that itched like mad.

Again, I told the nurse, who advised rubbing antihistamine cream  on the injection site, after I’d injected. It carried on swelling up though every time I injected a dose. But here’s the trade. Unbearable debilitating pain… or… a swollen lump on my stomach or leg once a fortnight?

I talked it all out with the nurse, who explained the risk of giving up Humira, in that if I gave it up and tried another form of Anit-TNF instead, if that also caused problems or even worse didn’t work for me, then I wouldn’t be able to go back onto Humira. So the choice was do I stick it out, having a much better life with just a bit of discomfort or do I gamble this improvement and go for higher, in the hope the next treatment might work and not make me allergic – knowing if I  made the choice and got it wrong, I’d lose the stake I was putting down.

I have to say, I’m not a gambling woman. It’s something I’ve learned about myself more this year than ever. I don’t like risk. I like surety and security. I was not going to trade. I said ‘stick’, so I’m still on Humira, and yes I still have an allergic reaction to it after every injection, but not so bad as it was, as the nurse suggested taking antihistamine tablets, and they have knocked the allergic reaction back. But in comparison to an annoying itch, well. my life has changed. I’ll tell you just how much next week.

AS is my burden, writing is my escape.

And if you are looking for the best help to improve your Ankylosing Spondylitis then for me it was the AS course at the Hospital for Rheumatic Diseases in Bath, UK. This hospital is now threatened with closure, if you wish to sign the petition to keep this hospital open, please click here. It changed my life (You can attend as a private patient or on the NHS). And if you would like more information on AS take a look at National Ankylosing Spondylitis Society, NASS, website.

Captured LoveMy novella, Captured Love, telling the story of a subsidiary character from Illicit Love is now available on amazon.com/amazon.co.uk and to celebrate I’m running a competition offering giveaways including a night in the Regency Hotel, London, an amazon voucher, and free copies of Illicit Love. Find out all the details here.

My debut novel, Illicit Love, is available on amazon.co.uk and amazon.com (writing fiction has been my preferred painkiller for years and now I can share my escapism characters).   

If you want to find out more go to my books page or my website www.janelark.co.uk  like me on Facebook or follow me on twitter @janelark

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How many hoops must be jumped…

So today let me continue my journey into the utopia of anti-TNF.

Well I’m sure those of you who have been given this liquid gold, when you first hear you’re being referred, like me, your hopes soared through the roof. I might be able to garden again… to do some sport again… to walk again… just to lead a normal life again…. The excitement I felt when I left the hospital with that news was amazing, especially as I really hadn’t seen it coming… but then… Your referral has to pass the gateway of financial approval. 

Also for me at the time, my doctor noticed my red blood cell count was dropping gradually every 3 months when I had my bloods checked, which indicates an ulcer (one I’d undoubtedly picked up from taking the anti-inflammatory tablets, without taking any stomach protection for years). So as all my paperwork was parcelled up and sent off for approval, I was sent to hospital to get checked out and make sure it was just an ulcer and not cancer, and told to double my stomach protection dose. With a warning that unless my red blood cell count levelled they wouldn’t risk putting me on anti-TNF.

I saw the Rheumatologist in Bath in June/July I found out my stomach and my blood count were okay in September, I was still waiting on agreement for anti-TNF in October. My excitement fizzled away waiting, and waiting, on the moment my life might change entirely.  

Then finally I got the okay, and I very eagerly came to see the anti-TNF nurse in Bath, to find out all about it – I had no idea what to expect.

I’d been prescribed Humira, which needs to be injected fortnightly and I was told all about the risks, that a nurse would come and visit me with the first dose to show me how to do the injection, and tell me how to store it. It sounds like a very big deal. It is a very big deal. I’d heard so much about it, and yet I still really didn’t know what impact it would have or what it would be like injecting it.

The nurse who came out was really pleasant and easy to talk to, and explained how to use the spring-loaded injections and how to store them, and store the waste needles safely.

They really are giant beasts though these spring-loaded things, and I looked up the shaft, the needle looks huge in there. Put it this way you wouldn’t want to be squeamish about needles if you have AS, but I was used to needles, so I just made myself relax as much as possible. However as the needle fires into you, it does hurt.

I remember looking at the paperwork after the nurse had gone and seeing the statement that said, as a potential  side effect, your heart stops pumping 🙂 

What else was nice about the nurse though was that she didn’t just give the off the page chat but the you have to keep living with this drug as a way of life talk. As in, she said you are really meant to stop taking it if you have a cold, or some illness (because the treatment stops you producing the white blood-cells that help you fight infection) but the nurse said, most people don’t, just see how you feel. She also talked about juggling when to take the injection around holidays and potentially taking it a couple of days early to make sure I’d had a dose.

When I took the first dose, I could literally feel it travelling through my veins and hitting my most painful joints, and literally within hours my pain had started to reduce. That is the thing about anti-TNF it not only works well, but works quick. Yes, I would agree with everyone else, it’s miraculous, and literally within hours, I had no pain in my spine. None. After nineteen years of pain. Can you imagine it… probably not if you haven’t got AS or a similar condition. I couldn’t believe it, I don’t think I stopped smiling…

Amazing… More next week…

AS is my burden, writing is my escape.

And if you are looking for the best help to improve your Ankylosing Spondylitis then for me it was the AS course at the Hospital for Rheumatic Diseases in Bath, UK. This hospital is now threatened with closure, if you wish to sign the petition to keep this hospital open, please click here. It changed my life (You can attend as a private patient or on the NHS). And if you would like more information on AS take a look at National Ankylosing Spondylitis Society, NASS, website.

Captured LoveMy debut novel, Illicit Love, is now available on amazon.co.uk and amazon.com (writing fiction has been my preferred painkiller for years and now I can share my escapism characters). My next book, Captured Love, a novella, telling the story of a subsidiary character from Illicit Love will be out soon. 

If you want to find out more go to my books page or my website www.janelark.co.uk  like me on Facebook or follow me on twitter @janelark

 

 

 

 

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My journey into the utopia of AS treatment – Anti-TNF

There are many negatives to the progression of AS, but after my second AS course at the Royal National Hospital for Rheumatic Diseases I discovered a positive.

When I was on the second course, my new doctor, Dr. Raj Sengupta, suggested I tried a different anti-inflammatory, I remember thinking, well what difference would that make… but I said, yes, because why wouldn’t I, I’m happy to try anything that might make me feel better and help me carry on as much as possible.

What I hadn’t realized was that he was thinking ahead, wise man. In the UK, there are certain criteria which mean you can apply for anti-TNF treatment, and one of these is you’ve tried two different anti-inflammatory tablets. So he moved me to a second. It didn’t make a blind bit of difference.

Also when I was on the second course, I had another set of x-rays taken, I didn’t get the results while I was in hospital as they were taken during the second week, I saw them when I attend my check-up appointment six months later… and then oh my lord, miracle of miracles, finally, after all the years I’d had x-rays, and people had said it doesn’t show anything, when I sat before the doctor, he said, “Well there is a clear definition of inflammation activity.” My bone had started growing.

Evidence! At last! Evidence! Real, actual proof that there was something wrong with me! That I had a disease called Ankylosing Spondylitis.

I was just so excited about that, I mean, even when I had first gone to the hospital in Bath, the doctor hadn’t seen anything and had to have a specialist examine my MRI scan in depth to discover there was some sign of abnormality.

But, now, Dr Sengupta explained to me, that symptoms showing up on an x-ray, was tick number two on a referral for anti-TNF treatment.  I could have got out that chair and danced  – or I could have, if I hadn’t been stiff and in pain 🙂

The only other thing I needed to pass all the criteria was a certain degree of pain and impact on my body and my life, well those ticks were pretty easy, I’d been ticking all those points for years.

I can’t tell you how excited I was when I got home and told my husband I was going to be referred for anti-TNF treatment, I told him it’s like the treasure all people with AS long for, it’s utopia, it’s like winning the lottery of life. I’d heard so many people speak of anti-TNF treatment and call it a wonder drug, the thing that gave them their life back… Was I going to have my life back?

So exciting… I’ll continue the story next week.

AS is my burden, writing is my escape.

And if you are looking for the best help to improve your Ankylosing Spondylitis then for me it was the AS course at the Hospital for Rheumatic Diseases in Bath, UK. This hospital is now threatened with closure, if you wish to sign the petition to keep this hospital open, please click here. It changed my life (You can attend as a private patient or on the NHS). And if you would like more information on AS take a look at National Ankylosing Spondylitis Society, NASS, website.

Captured LoveMy debut novel, Illicit Love, is now available on amazon.co.uk and amazon.com (writing fiction has been my preferred painkiller for years and now I can share my escapism characters). My next book, Captured Love, a novella, telling the story of a subsidiary character from Illicit Love will be out soon. 

If you want to find out more go to my books page or my website www.janelark.co.uk  like me on Facebook or follow me on twitter @janelark

 

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