Posts Tagged ‘Drug Side Effects’

I thought I’d post a more thorough update on how things have been since my first Infliximab infusion last week, especially since most of it is positive. I noticed almost straight away, the very next day, that I had less pain and was able to move better: things that I had been finding hard, such as sitting up in bed or standing from a chair, just felt that little bit easier and have remained so. I’ve also noticed a slight decrease in swelling around certain joints, my left elbow is straighter and my knees are less restricted. This improvement has been maintained each day and, rather than the rollercoaster of good days and bad that I had previously been stuck on, I seem to have reached an even keel, which is brilliant.

This stability has enabled me to stick to a better daily routine, including with my Physiotherapy exercises. I now have set times for my sessions and have even been able to increase the number of repetitions of some of the easier exercises, without suffering for it. I try and push myself a little bit harder each day, but know to stop when I feel the strain not after it, and this seems to be working. My arms in particular are moving much better than they were and the spasms that I was experiencing in my neck / shoulder / collarbone area have definitely lessened, although it still feels like something is ‘catching’.  I also have a better range of movement in my neck, something that has been restricted for months and months!

I’m defintely getting stronger in my legs and am able to bear more weight through my hips now too; I even managed to raise my leg off the bed when lying flat for the first time the other day – an exercise that I’d had particular trouble with – and I’m gradually increasing how long I can hold it there for. Not being able to do this had been upsetting me, so to me this is a big sign of improvement. I still have the muscle wastage at the tops of my legs and around my hips, but I know this is something that will take time to recover and at least it isn’t any worse. I’ve just started to add some resistance exercises to my lower body pyhsio, using therabands, so this should help build up some strength and muscle too. I’m really pleased now that I pushed through the pain and made myself exercise and I’m even more determined to keep it up and not slip back into bad habits. Who knows, maybe I’ll be lifting weights next?! 😛

Walking-wise, I am still mainly using the zimmer frame to get about and managing quite well with it, but I am at least using the crutches every now and again: I chanced a short walk around a shop on them the other day, which was an achievement in itself, although I felt a bit wobbly and it wore me out more than I expected. I’ve been able to manage the stairs a few times (with help), on the crutches too and so have had a few evenings downstairs, which is great. Not only does it mean a change of scenery and better zimmering space, but I’m able to pop in to say hello to my ‘furbaby’ Jasper the rabbit, who I miss like mad. I’m hoping that things are going to get better and better from here, that I’ll be able to use the crutches a little bit more every day and to go downstairs once a day too. I have three weeks until our Dublin trip and it would be great if I could manage with crutches alone.

I still can’t say if all this is thanks to the Infliximab / Remicade or the IV steroids, but any relief, any improvement is a welcome thing.  Despite not wanting to get my hopes up too much, I at least feel pretty optimistic about the new medication and I think that’s allowed. The only bad day I have had since starting it has been today actually. I woke up this morning with a very sore mouth and swollen tongue, (which has become increasingly worse), and when I looked in the mirror I had several ulcers/sores on my gums and a strange raised rash-type thing covering my tongue. I’ve also been feeling really weak and shaky, my pulse is racing and I’m exhausted, so for the first time since being in hospital I have slept during the day and am currently curled up on our sofa with a blanket.  From the information I was given, it looks like it could be a side effect of the Infliximab or of my immune system being wiped out by it; but hopefully, like so many of these things, it will just be a minor blip and disappear as fast as it came.

At least I can finally say there have been more good days than bad 🙂


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Just a quickie.

I woke up with a stonking great big coldsore on my top lip this morning; by lunch time it had developed into two or three more and had made the left side of my face sore and puffy. Apparently, it is quite a common side effect of Tocilizumab and needs to be treated quickly; due to suppression of the immune system it can rapidly develop into complications.  I didn’t know this until I checked it out this morning so thought I’d give a heads up.

I’m currently treating it with Zovirax cream but if it continues to get worse I can mention it to my GP tomorrow at least. Let’s hope it doesn’t take over my face.



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It’s official, the Tocilizumab infusions absolutely wipe me out for a few days. I thought at first it was the trip to the hospital itself that was wearing me out but I’m pretty sure it is the medication now, because the symptoms/signs are the same each time. I thought it was worth posting them, in case others experience the same and wonder if it is normal:

1. Fatigue – more than your usual tiredness. I’ve been sleeping a lot more after the infusion and don’t have any choice in it, I get so tired my eyes hurt and I have to sleep.

2. Headache – Especially first thing in the mornings, but I think this may be related to my next point because it eases when I drink plenty of water.

3. Thirst – Need to make sure I drink plenty of water.

4. An Increase in Joint Pain – I’m not sure if this is temporary but I have noticed each time that my joints throb after Tocilizumab infusions on top of the usual aches and pains. To me, it feels like there’s a battle going on in there with the Toc fighting the inflammation, so maybe one day it will win.

5. Bad skin – it hasn’t happened so far this time, but I’ve been getting terribly sore spots on my chin for a week after infusions.

6. Feeling hormonal / Moody – maybe it’s not related but it feels like it is to me. I’ve definitely noticed an increase in grumpy days and crying at really random things like the donkey sanctuary advert…

These are just things I feel I’ve noticed myself, there isn’t any medical backup; however, through talking to other people that are being treated with Tocilizumab I am finding that they do seem to be shared by others.

But hopefully it will be worth persevering; I’ll gladly put up with these things if it kicks the Still’s into touch.


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I felt a whole lot better today, as always my feeling low came out of the blue and disappeared just as fast. It just shows how easily hormones and emotions can wreak havoc on us. Even so, I felt a little bit fragile and had a migraine to boot, so it’s been a quiet day of resting and reading and getting stuck in the bath tub (I should have known when I had to ‘fall’ in that I’d have trouble getting out, oops).

I’ve also had a serious case of the munchies; in fact, this is pretty much a daily occurrence for me now. I never used to be much of a sweet tooth, didn’t really like cakes and so on, but would have a biscuit every now and again. For about the past six months though, I’m constantly thinking about what I can eat next and if there are any sweets, cakes, biscuits in the house they are soon demolished! And when there aren’t, I find myself searching through cupboards trying to find something, anything to take the edge off the munchies! (Chocolate scroll cake toppers anyone?!)

I thought it was just the increase in Prednisolone that had brought this on, although in the past it has always been savoury foods that I’ve craved – chicken mainly, but eggs, cheese and creamy sauces too. However, when I was in the treatment room having my last infusion, it came up in conversation that Biologic drugs could actually be the cause – Five of us were all on one Biologic or another and all five claimed never to have been sweet-tooths before starting them; only two of us were on Prednisolone. And the nurses said it wasn’t the first time they’d heard such a conversation in there too, so there could be something in it.  No wonder weight gain and increased cholesterol levels are included in the list of side effects!

Speaking of which, I’m currently working on the information page for Methotrexate in the Treatments section and should have it finished shortly.

Now I’m going to see what yummy treats are waiting for me in the fridge 😉


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It’s been almost a week since I doubled my Methotrexate dose from 7.5mg to 15mg.  I was expecting that maybe I’d feel a bit queasy again like I did when I first started it, or perhaps even worse, but I haven’t noticed any difference in that respect. Instead, I am just ever so sleepy! Even when I have been very unwell during this current flare, I have managed to stay awake all day – with the fatigue presenting as a body-wide weakness.  However, for the past few days, I have struggled to keep my eyes open once it gets to lunchtime and I just want to sleep. Trying to stay awake makes them burn and there’s no point anyway, because my brain just can’t focus on anything, which is why I haven’t managed to post as often on here.

Losing part of my day to sleep is bad enough but the ‘brain fog’ (as people call it), is even more frustrating. I’ve mentioned before how words just seem to drop out of my head and how I make silly mistakes like pouring water from the kettle over my cereal and find that I’ve put the milk away in the dishwasher… well yesterday it took a more worrying turn, when I forgot to switch the gas hob off and left it burning for about 4 hours before I noticed. Thankfully it remained lit or I could have had a major gas leak.

I’m hoping that the shock of forgetting something so vital will make me extra vigilant now, so that it won’t happen again. Also, that the ‘brain fog’ clears up after a time, as the nausea did.  But I can’t help but feel that the Methotrexate is having the opposite effect to what we hoped.  When I first started Orencia I felt like a different person, full of energy, even if the inflammation was still there; then I started on a small dose of Methotrexate and lost some of that energy and feel good factor; now, after doubling the Methotrexate,  I feel sapped of all energy. It makes me wonder how things would be if I stopped taking it and just had the Orencia – would I feel as good as I did at first?

I know it’s not the end of the world, but I’ve always said that fatigue is (most of the time) more difficult to deal with than pain – you can take pain medication to provide some relief with that, but there is nothing for fatigue. It just knocks you for six and stops you in your tracks, leaving you with no choice but to put everything on hold.

And with the New York trip around the corner, I just can’t let that happen.

For now, I’m just going to do as my body tells me and hope it’s enough to pull myself out of this sleep-hole, I guess it is working overtime to heal right now too.

Sweet dreams,


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We all know that Corticosteroid Therapy can be very efficient in the treatment of inflammation and disease activity in Still’s Disease and Rheumatoid Arthritis; in fact I’m not sure I know of anything that gets symptoms under control quite as quickly.  But of course, they come with a long list of worrying side effects that makes their use debateable:

List of Side Effects.

In much of the literature I have come across, it seems to be a popular view that steroid treatment is riskier than I have sometimes been led to believe.  One article in particular, from the Journal of Rheumatology suggests that ‘even exposures of less than 5 mg a day may be associated with potentially severe outcomes; as for exposure to long-term treatment or higher doses… well I’ll let you read that for yourself. 

The article doesn’t deny that sometimes drugs like Prednisolone need to be used, especially in ‘the most afflicted’ patients, (and I wonder if Still’s Disease, with its many systemic symptoms and organ involvement, automatically applies here), but what it does suggest is that doctors and patients need to be better informed when weighing the risks and the benefits and that perhaps more research into this is needed.

However, this is only one article and one perspective.  It is more difficult to find information supporting the benefits of steroid treatment but maybe these are just taken as gospel. I did find an article on a website called Arthritistoday from December 2010 that suggests there could be a turnabout in such opinions, citing two current studies.  The main points that are raised here are that:

1)      Corticosteroids are less toxic than many of the DMARD alternatives, which can also have both acute and long-term side effects, including organ damage.

2)      They do modify disease activity and slow down the progress of joint damage.

3)      There is a chance that corticosteroids protect against large B-cell Lymphomas, of which there is an increased risk of in patients with Rheumatoid Arthritis.

The article goes on to conclude that steroids ‘are still some of the most powerful and essential drugs in use today, with side effects that need to be managed’.

So I guess what this means is that we shouldn’t disregard the use of Steroid treatment altogether, but should stay as informed as possible, so as to be in the position to weigh up the risks and benefits, by discussing any concerns with our consultants.  Hopefully, they too will be weighing up the right factors in making their treatment decisions (it is their job after all).  We also need to make sure that they are never the first line in treatment, in order to keep the dosage/usage to a minimum, and to manage any potential side effects as an when they are experienced.

I think I will need to look into this further at some point.


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