Arthritis blog

Getting better all the time

zunjine — Sat, 14 Jan 2012 22:51:00 GMT

A quick update might be in order, don't you think? OK.

I've now been using Humira for over three months and I really can say with some confidence that it works and it works well. That isn't to say that it's an easy thing to do (read my last blog and you'll see what I mean) but it's certainly worth it.

I've taken to letting my other half do my injections for me. Sounds a bit wussy I know, but I can handle the pain (it isn't that bad really) but I can't get my mind around doing it to myself. As anyone who has ever had a serious illness knows, you have to deal with a lot of blood tests and injections and people prodding you this way and that and a lot of it is pretty unpleasant, so pain and discomfort become something of a fact of life. If that illness is a chronic pain condition like AS then learning to cope with pain is vital. So I'm fairly confident when I say that I can deal with pain. But injecting myself just hasn't come easily to me. I suspect that once I'm used to it I might take over the duties myself but for now it's so much less stressful for me to just sit back and let my girlfriend attack me with a needle. She's unnervingly enthusiastic about it, actually.

I've had to hold off on a couple of injections due to winter bugs (you shouldn't inject Humira when you're ill, I'm told) and when that's happened my inflammatory markers have risen again. But the good news from that is that it shows the drug is lowering the activity of the disease. I now find that I am rarely kept awake by back pain and I wake up and spring out of bed like I did before I was ill instead of having to maneuver myself like some kind of lump of wood. I feel younger, if that makes any sense.

It's still a strange and new thing in my life but it's becoming less strange as the weeks pass. I’m happier and healthier now than I’ve been for some time. I find I have more energy - I’m not running marathons just yet but I certainly feel less fatigued than in the past - and I’m less worried about my disease; it no longer takes up so much space in my head.

If I could give one piece of advice to anyone reading this who is starting on or using Humira it would be to be patient with yourself and please, please always keep in touch with your nurse or consultant. If you feel unwell or even just a bit odd, let them know. Don’t feel like you’d be causing a bother for them. You’re taking on a very powerful drug and you need to take care of yourself. Also, talk to people about how you’re doing and how you’re feeling, emotionally and physically. This is hard and pretending that everything’s just breezy when you’re worried or stressed isn’t good for you. I guess that’s more than one piece of advice isn’t it? Well consider it a bonus!

Another year has passed on Humira...

Helen. — Fri, 13 Jan 2012 11:30:00 GMT

It is time to write an update on my progress, so it is also time to reflect on my health over the last year...

the general thought is that it has been very good, I continue to inject Humira on a fortnightly basis and this is still the same, mildly traumatic depending on my mood at the time and i occasionally don't do it quite right and i end up with bruising. On the whole a very small price to pay for the wonderful effect this drug has on my life and wellbeing.

Last year was a challenge in so many ways, i made the resolution to put RA behind me and on the whole i have done that. But what has become apparent is that i cannot totally forget it because i do have to be aware that if i overload myself either work or stress wise i find some symptoms reoccuring for example i took on some very fiddly craft activities at work and insisted i did not need help and caused my hands to flare, with reflection if i'd accepted the offer of help i could have avoided the flare and the extra medication needed to relieve it. But on the other hand i survived it without any major problems and do so love to be independant...

I imagine this is the same for many of us finding relief from chronic conditions, we need to be aware of them even when we are symptom free, so my idea to put RA behind me was perhaps wrong and i actually have to put RA to one side of me so that it is present but not overwhelming my decisions.

My continued good health is putting me in a bouyant frame of mind, over the last year i did things i never thought i'd do again including going to music festivals, climbing Snowdon and resuming horse riding. 2012 has already given me a hint that it is going to be a year of new challenges, new adventures and new experiences and i am happy to say that i am ready and willing to take them on.

I very much want to hear how others are progressing with Humira or its equivilant, and i hope very much that it is being a success for others in the way it is for me.

Sending you all my very Best Wishes for a Happy and Healthy New Year.

Helen

Humira and children

Hannahgaha — Mon, 05 Dec 2011 20:41:00 GMT

My son was diagnosed with JIA (juvenile idopathic arthritis) just over a year ago. He is 8 now and has been having Humira injections for about 10 months. Having read other people's experiences, I appreciate how lucky he has been. After only 3 months of other treatments (high doses of Ibuprofen, diclfenac, methotrexate oral, methotrexate injections and steroid injections - all to no avail - he was prescribed Humira, which was available to him immediately. The effects were almost instant - the swelling in his joint had gone in only 4 days and he has had no relapses since. Having the injection has been a bit of a battle - it was much more painful than the methotrexate had been and caused him a lot of distress. Last week he finally let me inject him and it was fine. It has taken months of taking him to the hospital to have it, then the community nurses have been coming for a few months - now finally I think I can take over. I think it helps that I take it out of the fridge an hour before and he has an anaesthetic spray before the injection. I would be interested to hear of any other children using Humira as I only know of adults to date.

Sticking needles into yourself is not natural!

zunjine — Fri, 04 Nov 2011 12:47:00 GMT

Where was I? Ah yes, Humira! It’s a bit embarrassing actually. Last Sunday was the day I was due to take my first dose at home. So I took the pen out of the fridge so it could warm up a little and then went to my room to get the thing done. 45 minutes later and I was still there. I couldn’t bring myself to do it! It just seemed so wrong. I’ve had 30 years of learning not to pierce my skin with sharp objects and there I was attempting to override that now ingrained instinct.

It was strange because when I did it at the hospital it was OK. A little bit painful, not too much blood. But then hospitals are for that sort of thing. That’s where you go to do things you don’t do anywhere else. There is no other place on Earth where I would willingly have a camera inserted into any part of me, have radiation pumped into me or happily pee in a cup. These things are things one does in a hospital, or at least a doctor’s surgery, and it’s unnatural to do them elsewhere. To this list I would add deliberately piercing my skin with a needle.

So there I was, failing to inject myself. What I didn’t count on was what I will from this day forth call, Rees’ Law of Sodding Things Up. The law is as follows: as one dwells upon an unpleasant task the probability of messing up said task approaches 1; that is, given enough time spent dallying you’re almost certain to do something wrong. Which I did. While holding the pen on my stomach but not really ready to press the button I did, indeed, press the button. Of course I wasn’t holding it firmly and so the moment I felt the needle I jerked the pen away and sprayed the Humira all over the room. Leaving aside the impressive distance that stuff can travel the overwhelming feeling was that I had been very stupid and had wasted valuable medicine. I have to say I was in a foul mood for most of the day after that. It was in the evening when I tried it again.

I’d like to say I did it quickly and with zero fuss the second time round but that would be a lie. That said, I did do it. The only odd thing was that it hurt so little and there was so little blood that I found myself wondering if I had done it right! The pen indicated that the chamber was empty and there was no liquid around the place so it must have gone in but it was very strange to me that, after so much worry, I was now worried it hadn’t been painful enough! But such is the mind of one who comes up with new laws for ineptitude.

And how am I feeling? You know, it’s hard to say. I’ve been on Humira now for close to three weeks and I do feel better. But I also feel a bit like I have a heavy cold and I have a vague feeling of paranoia and unease. It may well be that I do have a cold and being unwell can cause emotional swings so I’m not too worried about that. In a week’s time I’ll be doing dose number three and, hopefully, not messing this one up.

Some fear and some hope

zunjine — Tue, 25 Oct 2011 20:03:00 GMT

It happened the summer I graduated. I started having severe pains in my legs and lower back. Then, one morning, I woke up and wasn’t able to open my eyes for the pain. I went to Moorefields Eye Hospital where they said I had uveitis and encouraged me to check if my leg and back pain might have been related. I was later diagnosed with Ankylosing Spondylitis. That was in 2008.

For months I was very ill. My knees, ankles and feet would swell up. I lost lots of weight. I was very depressed. I’d just started my first post-university job. It was supposed to be the start of a promising career but it felt like fate was playing a cruel joke on me.

Since then I have been on Sulfasalazine with painkillers and anti inflammatory drugs and my symptoms have become more manageable. Just last week I started on Humira. I’m hopeful that this could be the start of a recovery of sorts. I know this is a lifelong thing; I know it’s not going away. But I want to live a life as close to normal as possible.

I am scared. Ever since that summer I think I’ve been a little bit scared. I never used to think about my health. Now I question everything. Will I be able to work all my life or will my disease stop me? How will I cope one day if I have children? Will my kids have it too? Will I have the energy to keep up with the world I live in or will I become a burden? Will I be one of the unlucky ones for whom Anti-TNF treatments can lead to cancer?

I chose to write this because I find it hard to talk about what scares me. I hope that, by writing this, I can share my fears and help others share theirs. Also I want to share my hope. I have lots of hope and my greatest hope of all is that I’ll be able to share with you the story of someone who gets better and stays better. I know how lonely illness can be but I also know it doesn’t have to be.

Diclofenac ??

Katykat — Sat, 08 Oct 2011 14:09:00 GMT

I haven't been around much for a few months dealing with other problems alas! However I just wanted to ask my fellow bloggers about Diclofenac.

Last week I received a letter from my doctor's surgery to inform me that I would no longer be prescribed Diclofenac and instead my repeat prescription would be for Naproxen.

I rang the surgery to ask for telephone appointment and when I spoke with the GP he told me that Naproxen was gentler on the stomach. In that case I won't need to take Omeprazole I thought. No I would still need to take Omeprazole. I was also advised that it would be a good idea if I cut down or stopped the diclofenac that I still have in my possession as an experiment - just to see where I am up to with the pain. Well now I know where I am up to with the pain!!

The idea is that I only take the NSAIDs when I absolutely must but that really doesn't address the constant 'background' pain that has returned post diclofenac. Nor does it help the pain that has returned in both hands. I am taking sol paracetamol alongside Lyrica now but it isn't nearly as effective.

Has this happened to anyone else and if so what advice were you given?

Associated problems

ianmacp — Sat, 20 Aug 2011 10:18:00 GMT

Well, we're half way through August and getting close to the end of the summer. My Humira treatment appears to be going well with no apparent side effects and good relief from the pain, though I have to be aware of my limitations. However, I appear to have acquired a leg problem which may be associated with my back. Very severe pain in the top of the left thigh and bad pins and needles all the way down to my foot. The pain wakes me up early in the morning and I cant stand up for over an hour because of it. Yet sitting down eases it. Probably a trapped nerve or something like that but my consultant has sent me for an MRI scan on my back as I have had a prolapsed disc for over 20 years. We shall see

Enbrel, one year on

Kezcola — Mon, 15 Aug 2011 14:15:00 GMT

I can't quite believe I have been using Enbrel for a year now! Having said that, the changes certainly would prove it.

Before Enbrel my condition flared and we struggled to get it under control. At points I felt so desperate I would almost say I wanted to end it all. I've always been a very independent person but now I couldn't do very much for myself and my dignity was ebbing away, plus my weight was soaring with cushings syndrome as a result of steroid. Then my doctor suggested Etanercept / Enbrel.

As it was an injection I was very scared, I thought long and hard about it and researched it on the internet, as we all do these days! I found lots of stories from people that were on it and found 99 percent of them were positive, that was something I wasn't used to! Most times when you look at drugs and their side effects and speak to people using it, there are normally more cons than pros, but not this time.

So I decided to be brave and take the plunge. Well thank goodness I did.

A year on and I feel almost completely back to myself. I can get dressed by myself, bar a few items. I have a bath lift so can mostly bath independently. I still need help with bits and pieces, but my walking is much better, my fatigue is so much better and I am back to working full time. Cushings syndrome is slowly getting better, it can take years but I know my weight is going down, helped of course by being more mobile.

I still have off days, but thats to be expected.

The injections are not much fun, I always say before you push that button, its like knowing someone is about to slap you in the face! It stings for a few seconds and then its all over with, some weeks are better than others, sometimes it really hurts, other times it doesn't, I haven't quite worked out why, I always inject in my thighs and always alternate legs, some spots are better than others, maybe I should start putting permanent marker on the good spots? The first few injections I got a reaction, not much to write home about, that stopped after the third or 4th though. The only other side effect I have had is that my sinus is permanently blocked on the right side which has affected my hearing and gives me headaches, but I'll take that instead of what I was going through any day.

More details of hip replacements and radio-frequency lesioning

AnnC1 — Wed, 27 Jul 2011 04:11:00 GMT

I'm sorry your wife is having hip pain that is preventing her sleeping - this was how I was,and is an indication that your Primary Care Trust will probably refer for surgery. A lot of the night pain for me (and my mother) was in the groin. Unfortunately I found minimal effect from painkillers, although the best anti-inflammatory for night for me is diclofenac (Voltarol) in the form of suppositories.

I was referred to the Horder Centre - a fairly local hospital which specialises in arthritis, and has some NHS beds, although mainly private, rather than the general orthopaedic unit in our main hospital, which has longer waiting lists (and a lot less specialised care.)

At my outpatient appointment, I was given a book, outlining exercises - and just about everything I could want to know, from pre-operatively until three months post-operatively. At the pre-operative assessment, the anaesthetist explained that he would give a light general anaesthetic so I didn't feel a spinal anaesthetic being set up. This means a lower dose of the general anaesthetic agent, so you feel less 'groggy' afterwards, and also more prolonged pain relief afterwards. I also saw the Occupational Therapist, who supplied me with a 'sock aid' for putting on stockings, and a long-handled brush to wash my back, as getting down into a bath is forbidden for three months. I could also have had a raised toilet seat and a frame to go round the toilet, but had already purchased them, along with a cushion to raise the seat of my chair.. All but the toilet frame were mine to keep.

I went in on the day of the operation - the first one wasn't until 4pm. The physios saw me in the evening, showed me how to get out of bed, and gave me a Zimmer frame to take a few steps! When in bed, I had 'boots' which inflated and deflated, and was put on a 5-week course of an anticoagulant called rivaroxaban (Xarelto.) Pain was not sever. I found it amusing that my liquid pain medication was syringed into my mouth - just as I do for my pets! I had no stitches or clips to be removed, as my consultant uses subcuticular stitches then 'skin glue.' On the second occasion I had two metal seats that night, too. On the Friday morning she went through the exercises and measured me for two wooden sticks which promptly arrived - mine for good! In the afternoon I climbed about 3 stairs. Saturday morning - all 'hips and knees to the gym!' We were shown the types of prosthesis used, given general 'dos and donts', and did what we called our 'bar exercises' - the standing ones. We were then discharged!

In other hospitals, stays may be longer, and less equipment provided.

Because I live alone, I booked into a private hospital for 10 days the first time and 7 the second - expensive, but worth it. I sawa physio once or twice daily, plus going on to the corridor for 'bar exercises.' I also had several sessions of hydrotherapy. On discharge, I kept up the exercises, and all has been brilliant. Before discharge they check what arrangements you have for help in the house (I only had one session with a local voluntary group member), who will do your shopping (haven't they heard of 'on-line!), who will help with socks etc. As I live alone I've actually coped with little help both times.

I have had back trouble for a long time (ex-nurse!) An MRI scan showed that I had osteoarthritis in my lumbar spine, with some disc degeneration. Unfortunately I have a resistance to most painkillers, so was referred to the Chronic Pain Unit at our local hospital. I had a consultation and was referred for steroid and anaesthetic injections into lumbar facet joints on both sides. For this, I lay on my front and had a short-acting anaesthetic - propofol. This helped for a couple of months, but the pain returned. As our PCT does not allow follow-up, I was referred again. As I am on low-dose oral predmisolone for polymyalgia rheumatica, he did not wish to repeat these injections, and decided on radiofrequency lesioning. Again, I lay on my front, but was not allowed sedation as I needed to describe sensations. This as carried out under fluoroscopic x-ray control. Four injections of local anaethetic were the worst part (rather like the dentist!) They then inserted a probe under x-ray guidance, and I had to say what I could feel. The probe is then heated and used to partially destroy the nerves that carry the pain impulses from the facet joints of the spine. Only one of these gave a very sharp pain. Then I was wheeled back - again by my consultant and senior registrar, who had collected me (what happened to porters!), had a sandwich and tea, and my friend took me to Burrswood Guest House, so there were people who could be contacted at night if I had any problems. There can be a worsening of pain for several days afterwards, but in my case this was minimal and I only occasionally get bad pain on the operated side if I do a lot of shopping etc. I still have sciatica and pain on my right, so once again it was refer for consultation, go on waiting list for that side to be done, which shouldn't be long now. Actually, the sciatica has improved this last week, although I've had a few bouts of severe back pain on that side. Relief will not be permanent, but should last for several months. Gabapentin (Neurontin) was tried, but the visual and cognitive side-effects were horrendous on the standard dose. (In the States they nickname it 'Morontin!') I use my TENS machine when necessary. I can use a belt with the back electrodes, but it gets a bit warm at present. If I have problems or want advice on TENS use, the Chronic Pain Unit will advise me.

At the moment I'm having a lot of pain symmetrically in my wrists and fingers - possibly allergy-related.

One of the main things to remember after a hip replacement is never to cross my legs! I work out some things to simplify things for my back, such as turning the TV socket on and off with the ferrule of my stick, and have posted on 'the rat forums' 'how to clean cages alone when you have a bad back!' I find an adjustable 'office chair', which I picked up in a charity shop, very useful for ironing etc. as well. Tomorrow I hope to resume swimming as breast stroke is permitted after 3 months. I need to lose weight, especially as just diagnosed with Type 2 diabetes.

Dentistry needs further examination

ianmacp — Sun, 10 Jul 2011 09:37:00 GMT

For some time I have a tooth that's needed to be extracted but as it wasn't giving me any pain at all, and not being a great fan of dentists (though mine is a really good one), I've just left it. Now however it's getting to the stage whereby I don't want it to become unsightly, even though it still is not giving me any pain. However, when I contacted the dentist, she said she didn't want to do it until she'd spoken with my Rheumatology Consultant because of the infection risk from an open wound. Still waiting for the outcome on that but it appears she's not taking any chances.

Who hit me with a sledgehammer?

ianmacp — Sun, 10 Jul 2011 09:34:00 GMT

Last few days I've been waking up with really bad headaches which persist throughout the day, despite taking Ibuprofen and Paracetamol. Also been quite dizzy at times too. Going to need to go through the list of side effects from the Humira to see if there are any links but it may be I've just picked up a viral infection or something of that ilk.

Humira obliterates Psoriasis

ianmacp — Fri, 01 Jul 2011 07:55:00 GMT

I have always had a few patches of Psoriasis that linger, despite all the topical treatments applied to them. Fortunately for me, they were in places not easily visible such as my belly button, behind my ear and in my eyebrows. After 3 injections of Humira I have no Psoriasis at all. It's all gone. I even trimmed my eyebrows yesterday which were getting a bit long. I cut my hair very very short because I used to get quite a build up on my head but with short hair it seemed to stay away. However, I now face a dilemma because though it's good for Psoriasis to get some ultra violet light from the sun on your skin, we also have to temper that with the increase in the risk of skin cancer so I will probably have to cover up more and use a really high factor sun block. And the question is do I let my hair grow a bit? We shall have to see? There's always a price to be paid or a trade off

Looking Good, Going good

ianmacp — Thu, 30 Jun 2011 21:09:00 GMT

June 28th. Now had the third injection of Humira without incident. Thus far I've injected in the same leg all three times and haven't had any injection site reactions or any other side effects other than a little dizziness shortly after injection and a headache the following morning. The next time I inject, I will do it at bedtime and see if that makes any difference to these mild after effects. I looked in the mirror today and I think for the first time in years, I actually looked more like the real me and didn't see a face wracked with pain. It was a good feeling to behold.

Here We Go

ianmacp — Thu, 30 Jun 2011 08:05:00 GMT

May 31st. I had my first, self administered injection of Humira, under the guidance of the Healthcare at Home nurse. I was advised to take it out of the fridge about 30 minutes before injecting as this would reduce the stinging. I had read in various blogs and publications that people tolerated it better by injecting in the leg instead of the abdomen as this reduced the likelihood of nausea, though the nurse said she didn't subscribe to that view. However, I decided on the leg. It was an absolute doddle. It did not sting, it did not hurt at all. There was a tiny spot of blood afterwards but that was it. I was told to expect "flu like" symptoms at first and possibly some of the numerous side effects that are listed on the leaflet. And they are numerous. However, I am very pleased to report, absolutely no side effects whatsoever.

Humira. Same old story or new beginning?

ianmacp — Thu, 30 Jun 2011 07:43:00 GMT

I am hoping that my blog here will be of help to other arthritis sufferers who are about to embark on the "Biologic" drugs treatment for their condition. It's very difficult to make an informed choice about a treatment when you know absolutely nothing about it. I used to work as an Analytical Chemist for a pharmaceutical giant some years ago and I thought I was relatively clued up on drug treatments. However, the advances that appear to have been made are staggering in some respects, so much so that I was completely in the dark ages about the biologic drugs. Anyway, here's where we we are at the end on June. I have Psoriatic Arthritis and Psoriasis. My first treatment, like most of us, was oral Methotrexate. I managed to take one table and was vomiting for the next 6 DAYS. It was decided I was somewhat "intolerant" to Methotrexate and was the put onto Sulfasalazine. This worked for about a year or so and then it seemed to give up the ghost. My consultant then put me onto Leflunomide which again seemed very promising at first. Joints were much less painful, movement was easier and morning stiffness reduced to around 30 minutes. During all of these treatments I was also taking many other drugs. Etoricoxib, as an anti inflammatory; Gabapentin, as a pain inhibitor; Quinine, to counteract the muscle spasms caused by the Gabapentin and Simvastatin for my high cholesterol. On top of all these things there were the various topical treatments for the Psoriasis. Leflunomide worked for around 18 months and then it just seemed like very suddenly, lots and lots of joints started to flare up. Ankles, knees, wrists, fingers, toes, shoulders and ribs, on both sides of the body. I had ultrasound scans which showed lots of tenosynovitis so it was going to be a case of steroid injections. As things got worse, my consultant decided to start me on Humira as I easily met the necessary NICE guidelines for treatment. I would continue with all the other medication as well so I was eager to get started. The treatment began on May 31st, 2011 and I will blog the developments as we go along