Posts Tagged ‘Immuno-Suppression’

I haven’t posted a real update for a while, so thought I’d do that before I start on a few topics that I’d like to discuss over the coming weeks.

I think it’s safe to say that I am responding well to the Infliximab infusions, as I am relatively pain free these days and all joints are mobile, with little or no swelling. I am still taking 60mg of Morphine twice a day (down from 140mg), but am working with my GP to reduce this. We’ve come to a bit of a standstill at the moment because I do get some pain from my reoccurring Gastritis, but once this is under control with the stronger stomach medication, I aim to become Morphine-free and hopefully will have no underlying pain.

The Gastritis is probably my main problem right now. I had my first episode of this earlier in the year, just before my major flare at the end of January, and it is thought that the Gastritis contributed to this, since the stomach inflammation meant that I was not absorbing my Still’s medication adequately. I now take Esomeprazole and Motilium three times a day and also avoid acidic food and drink, but still it niggles away. A friend, with Still’s and similar gastric trouble, has suggested that it could be related to the IV biologics that we take and so I’m going to look into this at some point. If you have experienced anything similar whilst on any of the IV biologics, please comment – it would be interesting to see if this is the case.

The Infliximab infusions themselves are going well, although I did suffer a bit towards the end of the eight week interval. I noticed that rash, temperatures and some joint pain returned at about five-six weeks post-infusion. As a result, my Rheumatologist has prescribed it every six weeks instead. I haven’t experienced any major side effects from the drug apart from getting a very sore, ulcerated mouth a couple of weeks later. I do seem to be more prone to infection in general though, something I never really noticed with any of the other medications, despite their immuno-suppressant action. I currently have the first cold and throat infection I’ve had for years, so I’m being extra careful.

As I have briefly mentioned in a previous post, I am having some problems with my finger and hand joints being very stiff and painful, especially first thing in the morning. This is unusual in itself, since any previous hand involvement has always been during times of full-blown flare. My only thought is that six months on crutches has put extra pressure on those particular joints, so hopefully it will only be temporary… especially now that I am off crutches altogether! Yep, I felt that they were holding me back on our recent trip to Paris and so threw them into the River Seine (not literally). I need a bit of support from people at times and have the odd spell of vertigo, where my brain seems to forget how to balance without sticks, but I am finally back on my feet and feel like I can only get stronger from here.

I have also managed to get down to 5mg of Prednisolone, the lowest I’ve been since about 2007 if I remember rightly. I would love to get off the stuff completely of course, but for now I am happy with this low maintenance dose and would prefer to get rid of the Morphine. I don’t want to be doing too much too soon, in case I put all this success into¬†jeopardy, plus I have to save some goals for the future right? ūüėČ

All in all, things seem to be on the up (touch wood), but don’t worry – I’ll still find plenty to post about!

Here’s to Infliximab and the future,

Cin cin


Ps I have updated the ‘My Story’ page and also added some new Articles to the Articles section.

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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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I had my annual flu vaccination this afternoon.  This year it protects against British Flu, Swine Flu and Australian Flu.

Everyone with a compromised immune system, including from the immuno-suppressant drugs used to treat Still’s Disease and similar conditions, should make sure they get this vaccination. A lot of people worry about the side effects or feeling flu-like symptoms afterwards,¬†but I can honestly say, that¬†in the ten years I have received it, I have never experienced anything more than a bit of a sore arm at the injection site.

Make sure you book in early for it each year, as there are usually long waiting lists at the GP surgeries. I booked mine at the end of August! You don’t want to be left vulnerable at the start of flu season, which is often the worst time, as the body is easily overwhelmed with the new strains of germs lurking everywhere. Because of the increase in severity and flu awareness in the media, there are greater demands for the vaccine and so supplies may also become more¬†limited the longer you leave it.

I’ve noticed more and more that other places like pharmacies and supermarkets¬†are offering the vaccination on a walk-in basis too, albeit¬†for a small price. (I think Boots Winter Flu Jab Service¬†¬†were advertising it at ¬£7.99, Asda at ¬£8 and Sainsburys & Tesco at ¬£10).

For more information on flu vaccination take a look at the NHS Choices site or the official campaign leaflet here.


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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 ūüôā


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 had a phone call the other day to offer me a cancellation slot for my Hidradenitis surgery on Friday; I need at least a week’s course of antibiotics beforehand¬†though, so couldn’t accept, but she told me to go for a pre-op assessment today anyway.

It took a while to go through my medical history and treatment list, then I had the usual BP and chest checks, followed by an ECG and then… another blood test.¬† I hadn’t had much notice so was only able to try a few of the tips I posted the other day; however, I asked the phlebotomist if she could take blood from somewhere other than my ‘infusion vein’ and after two attempts she managed to find another that will work for bloodtests but isn’t suitable for cannulation. So we managed to get enough blood and give my overused vein a break, phew!

My procedure is now booked for the 22nd August, which is pretty soon but at least gives me time to heal before our trip to New York. I am also relieved that someone is¬†finally doing something about it as I’ve been putting up with this for over a year now and, as well as being sore, it is annoying to have to think about it all the time.¬† The problem is, I seem to have developed another swelling around the glands¬†on the opposite side and a smaller one next to the first; I really hope that these are like earlier abscesses I experienced and heal themselves.

Unfortunately, the specialist feels that this is all down to being on immuno-suppressant drugs for so long and there’s not much I can do about that. I’ll just have to hope that with the antibiotics and surgery there’ll be no more infection left¬†to reinfect and that it is curable.¬† I’ve been taking it all a bit too lightly, so maybe I should look into more thoroughly too; prevention is better than cure after all.

Off to see the GP again tomorrow to reassess pain relief and pick up the antibiotics.

Until then, good night.


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