Posts Tagged ‘Side Effects’

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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It’s a couple of days after my second Tocilizumab / RoActemra infusion and I feel exhausted – and I mean that really deep seated exhaustion that makes you feel too tired to even be lying down awake, the heart pounding, lung-crushing, head-spinning, soul-destroying exhaustion that comes with the fatigue element of chronic disease.

I can’t put my mind to anything; I’ve tried reading, watching a film, surfing the net, blogging…! To call it brain fog is an understatement; I literally can’t get my words together in my head and will probably have to redraft this at some point when I’m feeling better. Even reaching over to the bedside table for a pen to make a shopping list feels like a huge effort; in fact, I don’t think I can. So instead I will just lie here and play with my new Blackberry.

I’m pretty sure I felt like this last time too but thought nothing of it as we’d had such a long day. I hope it doesn’t last too long because fatigue is the element I find hardest to manage. I’ve probably said this before, but at least with pain you can get some relief from pain medication – there is nothing that helps fatigue and you have no choice but to let it dictate your day. The main reason I managed so well on Orencia was because it seemed to help the fatigue, if not the joints.

As well as the fatigue I have been feeling a bit queasy, but then I had been feeling that way prior to the infusion too, putting it down to the pain in my hips. I also have terrible skin and I know that happened last time because the red marks it left are only just starting to fade. I’ve never suffered with bad spots (apart from a pred-induced bout once) and now I feel like a spotty adolescent with Mount Vesuvius erupting on my chin. Last time it cleared up after the initial ‘infestation’ and I hope this time is the same. I asked a few pals who are also on Tocilizumab if they had experienced anything similar and they had, but thankfully only at the start of treatment.

I’m supposed to be popping in to my cousin’s little girl’s First Birthday later on this evening, so I need to get some energy from somewhere. Maybe (another) nap will help?


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After posting yesterday  about my ongoing problem with Hidradenitis and Pilonidal Sinus, I thought it might be worth discussing the relationship between Still’s Disease, it’s treatments and infection, because I’m sure it is something we all worry about at one time or another.

Early on in my diagnosis, I remember a GP assuring me that, due to the overactive nature of the immune system in autoimmune diseases, I would be less likely to suffer from every day bugs such as the common cold – the logic being that my body would fight those off along with everything else. It is true that I’ve never had a major problems with coughs, colds and the like, but I’ve always wondered how much truth there was in this suggestion.  Every other doctor I have come across since has suggested that I am more at risk of infection, but is this purely due to all the immuno-suppressant medications I take, or is the Still’s itself a factor?

Trawling through the internet I couldn’t find any article that specifically addressed the relationship between Still’s Disease and an increased/decreased risk of infection -but the general consesus of what I did read seemed to be that Still’s Disease in itself did not increase susceptability to infection. It seems likely then that it is our medications to blame for any increased risk; but unfortnately, the more severe the disease activity, the stronger these drugs are and the greater the risk of infection.

One particular study  I found, on the relationship between RA and infection, claimed that even with immuno-suppressant DMARDs, there was only a sight increase in risk of infection and this was mainly found in patients taking Methotrexate or Cyclosporin.  Only Corticosteroids such as Prednisolone presented evidence of a substantial risk, with the level of this risk related to the dose.  As for the newer, Biologic treatments, it is still early days and more research is needed, but there does seem to be some concern surrounding them:

“…most doctors feel that the TNF blockers are more likely to cause serious infections when compared to patients who are not on these medications.”

This may seem like a mixture of findings but the conclusion is that we still have to be extra careful; why?

  1. The majority of patients being treated for Still’s Disease will be taking at least one immuno-suppressant drug, maybe more; these include Corticosteroids, DMARDs and Biological Therapy. In dampening down the immune system these drugs also lower your resistance to infection, meaning your body is at greater risk of being overwhelmed by any infection you do pick up.  This is why a common cold or flu virus can quickly develop into Pneumonia.
  2. As I have discovered, prolonged use of these medications can also lead to chronic infections, such as skin infections, sinus infections and upper respiratory tract infections… which are plain stubborn to treat.
  3. If you were to develop a serious infection, you may have to stop taking these medications to allow your body to recover more efficiently, which leaves you at risk of a major flare in Still’s symptoms.
  4. Many people with Still’s Disease will agree that catching an infection in itself can lead to an increase in Still’s symptoms.  A common cold no longer feels so ‘common’ when accompanied by fevers, rash and joint pain.  In some cases this is only short-lived but, for others, it can be a major setback.

So, what can we do to protect outselves from this increased risk of infection? Of course, the easiest thing to suggest is to stay away from people that you know are sick, but this isn’t always possible – trains, buses, shops and restaurants are full of strangers unwittingly sharing their germs with us.  I only have to watch a film at the cinema and I’m plagued with swollen glands and sore throat for the next couple of days.  But there are some things we can do to improve our chances:

  • Stay uptodate with vaccinations – make sure you get your annual flu jab, the pneumococcol booster when necessary and any others that are deemed important at the time – eg. Meningitis, Swine flu..
  • If you do develop an infection, get it treated by a doctor as soon as possible.
  • Before surgical procedures, you may need to stop certain medications temporarily and /or take a course of antibiotics beforehand.
  • Make sure any open infection – wounds, abscesses etc are covered and always wash your hands after handling dressings.
  • Keep your hands clean, especially in public places.  Try and carry a small bottle of hand sanitizer with you and use after touching things like bus poles, money, tables and other people (discreetly in this case!).
  • Don’t use air hand-driers in public toilets as apparently these just blow germs floating around from the toilets straight on to your hands; use tissue or paper towels instead.
  • Don’t share foods, drinks or cutlery with others.
  • Boost your immunity by eating a diet full of fresh fruit and vegetables, taking gentle exercise and with certain supplements.
  • Keep your maintainence dose of steroids as low as possible – easier said than done sometimes.

Here’s to keeping happy, healthy and infection free 🙂


Further reading:

Is infection a side effect of Dmards and Biologic Drugs?

Infection Risk with Biologic Drugs

Rates of Serious Infection in Patients Receiving Anti-TNF Therapy

Immunisation For Rheumatoid Arthritis Patients (NRAS)

Infections, Drugs and Rheumatoid Arthritis (JRheum)

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I feel like I’ve been MIA this past week or so.  It’s been hard to think straight since starting Methotrexate, as if words keep falling out of my head, and the fatigue is back with a vengeance; all of which left me thinking I’d just do a useless job at writing.  I’m finding it hard to even decide what I want to say; I never wanted this blog to be just about me, but I’ll start with a catch up (there’s another word I want to use here but it’s fallen out) on how things are going in case people can relate.

I am convinced the Methotrexate (mtx) is making me feel worse than I was in the week between starting the Orencia and the Mtx.  After the first infusion I felt fantastic, plus I had colour in my skin, pink in my cheeks and life in my eyes; people commented on how well I looked!  Now I feel like a zombie, I look in the mirror and see grey skin and tired, bloodshot eyes with purple smudges under them and traces of a rash around them. Even with make-up I’m starting to look like I feel.

This is without make-up, with no alterations to the photograph - attractive no?

Whereas I was bouncing out of bed at a reasonable time (8.00am) and going down for breakfast, showering, dressing within the hour, I’m now having to force myself to wake up, sit for a while adjusting and then to drag myself downstairs to get something to eat/drink before heading back to bed with a book.  The rest has to wait until my medication and painkillers have kicked in enough to ‘liven me up’ and ease the acheys. Not as bad as a month or so ago, but still a step in the wrong direction.

I feel nauseous most days but it’s bearable and nothing compared to what I experienced as a teen.  I can still eat for a start, which is a big priority for me since I am a real foodie.  I and everyone else around me knows that things must be bad if I pick at a meal or say I’m not hungry – I’m usually willing to wolf down even hospital meals for pete’s sake!  I guess I’m still making up for the years I couldn’t enjoy food thanks to mtx, but that’s a different story…  The only problem with eating right now is that I get terrible stomach pains after each meal; sometimes I have to excuse myself and lie down until it passes, which it does after a while.

I don’t know what my bloodwork has been like recently, since the hospital have been keeping track of that. Once the infusions are every month I will have to alternate my blood tests between the hospital and my GP, while trying to conserve my veins.  I’m still getting joint pain and swelling although there is a tiny bit of improvement – my fingers don’t look like sausages and I can remove my ring again (phew).  I have general achiness in most places, but the left arm is definitely being attacked by RA – I can’t raise my shoulder past a certain point and the elbow doesn’t bend or straighten, only having a tiny range of movement.  Quite often both are red, hot and swollen.

It's pretty much stuck at that angle constantly.

I feel like the elbow in particular is heading the same way as previous joints affected by acute attacks of RA – for me inflammation seems to pick a favourite place during a flare and wreak havoc.  First it was my ankles as a child, then my knees as a teenager and my right shoulder in my early twenties… each needed surgery and I can see this needing the same at some point in the future, before it’ll ever be right. Of course, I hope I’m wrong.

So that’s where I am right now, it feels almost like limbo because I know that after both infusions I have felt a big difference (which is so encouraging!) and yet I get pulled back down to earth after taking the Mtx, which is making me feel rubbish again… and all I want is to feel how I did in that first week.  It’s as if I was given a little taste of ‘normality’ only to have it taken away again.  I’m not even sure how to communicate this with my Rheumy, improvement or no improvement?


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Just a quick note for now.  The week has soon passed and it’s already time to take Methotrexate again.  The nausea has eased a little this past week but I still get pain after eating and people are noticing that I am losing weight again, despite the Prednisolone.  The thing that bothers me most is that I’ve lost the little bit of colour I seemed to have in my face after starting Orencia, it’s disheartening seeing that grey pallor in the mirror every morning – I’m starting to look almost as bad as I feel.

I asked for them to check my Folate levels on behalf of my GP last week, then forgot to check the results with them. I’m guessing they would have said if the level was too low though; need to be careful because of the Megaloblastic Anaemia I was diagnosed with just prior to starting Methotrexate.

Got to plod on with it…


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Today marks the start of round two in my current treatment plan: Tonight I need to take my second dose of Methotrexate (just as the nausea was subsiding) and then tomorrow afternoon I am off to the hospital for my second Orencia infusion. 

The Methotrexate has surprised me a little; I wasn’t expecting to feel so sick on such a small dose and then there was the bone pain that came out of nowhere – I can see myself becoming part of the club that dreads that day of every week.  I also can’t help thinking that I was better off without it but, then again, it is early days so I need to give things a chance to see how they pan out.  If I see my consultant tomorrow I will mentioned the side effects I experienced – maybe there is something I can take to help with the nausea etc…

He never said whether he would be popping by to see me during my infusion tomorrow, but I haven’t spoken to him since the first one and I would think he’d be interested in seeing how things went.  He’ll probably think I’m crazy when I tell him I felt a big improvement straight away – or maybe he’ll just be encouraged that this is the right drug for me.  I feel excited in a way, because if I notice such a difference this time then it means it must be the Orencia helping.  But what if it doesn’t? Am I going to feel disheartened?

I’m a bit concerned about the vein situation, since the drip struggled to go through my ‘best’ vein last time and I don’t have a whole lot of options – they have suffered from the monthly IV Ig and other IVs over the years.  I’ll just have to drink lots of water in the morning and hope for a miracle.

Wish me luck


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I finally managed to catch up with the posts I missed; I feel a bit of a cheat backdating them but they were things I felt needed to be recorded and it just wasn’t possible to do it at the time.

It’s five days since I took the Methotrexate and my stomach is not happy at all, no wonder I lost so much weight the first time round.  My main worry is that I was already suffering from malabsorption and low folate levels before taking it and that this will just get worse, but I’m sure the doctors will be keeping an eye on things.

Can’t say I’m looking forward to taking the next dose on Wednesday evening though. On a more positive note, I still feel much much better than I was before the Orencia infusion.


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Hangover Day

I was expecting that I may wake up feeling a bit nauseous and sickly today, but instead I was woken in the middle of the night by an excruciating pain in my right knee, through to my hip.  I could only assume that this was a strange side effect of the Methotrexate since I hadn’t had much trouble with those particular joints recently and hadn’t injured myself.  The only pain I can compare it to is the type I experienced years ago after a steroid injection crystalised in my knee – a real ‘crying out’ type pain.  Tramadol helped take the edge off a little but only for a few hours; I took doses at 3am, 7am and then 12noon – but by evening the pain had disappeared as quick as it started and is now just a dull ache.

I think I’m right in believing that this is a side effect of the Methotrexate, for whatever reason.  The leaflet does say that it can cause bone pain – I just hope that it doesn’t happen every time I take it.



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