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Posts Tagged ‘Medication’

After emailing my Rheumatologist with an update yesterday, he replied to say that the referral to start the Stem Cell Therapy and Bone Marrow Transplant procedure had gone through.

Yikes. That conversation was real then.

I’m not commited to anything at this point, nor am I even close to making a decision about it; I have simply agreed to hear about what the procedure entails as a treatment option for Still’s Disease.  It has been agreed that we have exhausted all other options and the medications are just not working for me. There was a suggestion that maybe I could try a combination of biologics, which is unchartered territory but perhaps less risky than the SC/BMT. I need to revisit this idea with him at some point as I forgot to ask about it during our last conversation; the focus becoming SC/BMT.

There is only one hospital in the North of England that carries out the procedure and that is in Sheffield, about 90 miles away from home. That’s going to make it tough spending any long amount of time there. The funny thing is, that the only Haematologist to carry out the procedure also happens to be my Rheumatologist’s brother, which makes me feel I will be in safe hands. There shouldn’t be any communication issues between the two at least!

The first step is to see a Rheumatologist called Dr Akil at Sheffield Hospital. My Rheumy thinks it’ll be about four weeks before I get an appointment, but I wonder if even that is optimistic. It doesn’t sound very long and I’m kinda nervous about seeing a new doctor after all these years. I’m wondering if he will have access to my huge volume of notes, or if he will want to do some tests and investigations himself.

I was also sent some information about the procedure, although it is so rare that he hasn’t been able to find any patient-based info. Instead, it is a 21 page article full of medical jargon. I couldn’t face reading it straight away, it was enough to have it and realise that all this is very real. Today though, I decided there was no point sticking my head in the sand and that I needed to face it head on. It is going to be a massive decision and so I’m going to need as much information as possible to make it properly, plus enough time to process and take it all in and to address any questions I have about it all. Better to start now then.

And start I did, but after two and a half hours of reading I am only six pages in and have decided to leave it there for the day. Because I want to fully understand what’s in front of me, I’m constantly checking up on word meanings and acronyms and making notes in a separate document. It’s like being at school again, which would be great if it wasn’t such a personally daunting subject. My GP, (who popped round earlier to see how I am getting on since leaving hospital), has kindly offered to interpret anything I don’t understand though at least.

So what have I learnt so far?

  • Only 3000 of these procedures have been carried out for people with autoimmune disease since 1995 – worldwide; about 175 a year.
  • It will be an ‘Autologous’ Stem Cell Transplant, which means harvesting and replacing my own cells.
  • Remission is possible, both longterm and temporary; if temporary, returning symptoms tend to be easier to treat.
  • It is also possible that there will be no change and there is, of course, risk of death.
  • With Still’s Disease, the main risk of death comes from Macrophage Activation Syndrome, which can occur at either stage of the procedure. This is something I have already suffered from, I discovered recently.
  • My Still’s medication would be stopped as early as possible and I would have to rely on Steroids to prevent any further flaring.
  • I would need chemotherapy – I guess that might seem obvious but seeing it in writing makes it real.

And that’s about as far as I’ve got really, wading through all the medical jargon. I’ll read some more tomorrow and keep posting about it here. Since it is such a rare procedure, I think it is a good idea to keep a record of it for others that may need it in the future, even if I don’t go the whole way. Because it doesn’t just stop at understanding the procedure itself, or even coming to terms with the risks – it’s the whole impact on my life and future, the future I share with my fiance and any plans that we might have to start a family etc.

So much to think about,

L

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I’ve got a busy few days ahead so not sure when I’ll be able to post updates.

Firstly, tomorrow I’m going for my fourth Orencia / Abatacept infusion in Manchester, which means another blood test and hopefully a visit from my rheumy.  I’m interested to see what the results will show. I’m not really sure what to expect from them, as I’ve been up and down on a  physical rollercoaster since the last ones four weeks ago – just before I ended up in hospital.  If they’re better, then great but are they better because of the Orencia or because of the Prednisolone? If worse, well where does that leave me?

Results aside, I do feel better in some ways – like I’ve said before, I have more energy most of the time and I am up and about, able to do chores and things nearly every day. But I am also in pain every day, in numerous joints, especially my left shoulder, elbow, wrist and fingers.  Most days I can barely move this arm; the elbow has been locked since May and is showing no signs of improvement, even when I increase the Prednisolone.  I guess I’ve just become accustomed to the fact that it hurts and doesn’t work properly, although I know that’s not right.

Hopefully, I’ll get more answers and a plan of action tomorrow.

On Friday I’m having minor surgery on my hidrandenitis abscess/gland/tracts/scar tissue – all of which is hopefully going to be removed and then stitched back up. I’m sure he said it would be stitched back up; sometimes they leave the wound open to heal from the inside but I want those stitches… I’m still feeling a bit nervous about it all, I guess it’s unknown territory for me.  What I have to remind myself of is all the misery it’s caused, having to put up with the damn thing for over a year now, and how sore and uncomfortable I’ve been every day because of it. Hopefully, this will be a means to an end of all that.

I’ll be glad when it’s all over and I can spend the weekend relaxing.  We should actually be celebrating, because Friday marks four years with my wonderful boyfriend, but I guess that will have to be put on hold unless he has something up his sleeve…

For now, I’m just making the most of time at home and looking forward to film night with my friend – who is bringing Zoo Keeper and Mr Popper’s Penguins round later.

You’re never too old for Penguins..

L

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Not much to report on the personal front, apart from the fact that the hospital called me to postpone my Surgery until Friday 26th August.  I’m not sure if this is a good idea or not, since I want to heal in plenty of time for New York, plus I also have reservations about it being the day after my Orencia infusion.  I’d ring my consultant for advice but he is still on holiday, so I’ll have to see what the GP says. I also need to see what I do about the antibiotics too, since I will finish them over a week before the operation date now.

I finally decided to start working on the ‘Treatment’ section of the blog today. I hope to eventually cover all of the treatment options for Still’s Disease, with personal accounts of those that I have had experience with; I’d also invite anyone reading to share their own experiences of each drug in their individual comments section.

The first treatment I’ve put up is Naproxen, because that is often the first drug doctors prescribe when there are signs of joint pain and inflammation. Please let me know if you think I’ve missed anything out and keep watching for further treatments – I’ll try and post each time I update them.

Now I’m off to put my feet up and watch Season of the Witch on dvd; pyjamas at the ready!

  L

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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 🙂

L

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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