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Posts Tagged ‘Steroids’

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 don’t want to get too excited, but I have noticed a definite improvement in my pain levels and joint mobility since my Infliximab infusion on Wednesday. As I mentioned before though, I can’t say that this is down to the Infliximab just yet, since I had a big dose of IV steroid at the same time. Saying that, I’ve had plenty of high dose steroids in one way or the other throughout this flare and I don’t think I’ve noticed such a difference before, so… fingers crossed, eek.

Steroids can be wonderful at times, especially for treating acute inflammation; if only they didn’t come with the long list of side effects! Now, it’s not by any means the most serious of these side effects, but the thing that is frustrating me right now is a massive case of the steroid munchies. Anyone who has been on high doses of steroid will know what I mean by this – it’s a constant feeling of being extremely hungry, to the point where you have the gnawing pain in your stomach and feel sick if you let it carry on too long. You want to eat everything and when you are not eating, you are thinking about what is next on the menu; you crave all the wrong things – chocolate, cakes, burgers, fried chicken, pizza, pies, cheese and creamy things… (I’m going to stop before I do a Homer drool) – tasty, but not good for you in the long run. What’s even worse, is that you never, ever ever feel full. I could just eat and eat.

Weight gain is already one of the most common side effects of taking steroids, but most of this is due to water retention in specific areas, which (in my experience) is easily reversible; as you reduce the dosage, you pee more and the weight and added inches drop off. The problem with having this huge appetite associated with the ‘steroid munchies’, is that it is so very easy to over-eat; it’s difficult not to really. With over-eating comes even more weight gain, but this time it is ‘fat weight’ and this will be much harder to shift when you finally reduce the steroids. And I’m not just taking this into account for vanity reasons, but for health reasons too – we don’t need the extra strain on our joints or for weight problems to prevent us from exercising/rehabilitation in the longterm.

I was feeling pretty miserable by this conundrum and the constant hunger gnawing away at me. It’s funny at first when people joke about you eating anything that’s not nailed down plus, as a huge food-lover anyway, it’s nice to tuck and enjoy your meals and treats; but I didn’t want it to get out of control. I decided that the best thing to do was to look into foods that were very filling and that had some nutritional value to them too, instead of wolfing down crisps, biscuits and cakes whenever I had the urge. I also gave myself set times to eat snacks, little and often – breakfast at 8.30am, a snack at 11am, lunch at 1.30pm, snack at 3-4pm and then our evening meal between 6 -7pm, drinking plenty of water and the occasional milky drink in between. (Did you know that very often thirst can be mistaken for hunger?). I was hoping that this would mean I could feel fuller for longer and nip those cravings in the bud.

Some of the foods I found were:

  • Porridge and oat-based cereals, mixed with dried fruit and nuts.
  • Porridge, banana and honey to sweeten if needed.
  • Banana and Natural yoghurt, with honey and/or nuts if needed.
  • Low fat Rice pudding, with a spoonful of jam or fruit conserve.
  • Dried fruit and nut mixes.
  • Dried apricots, prunes, dates and figs (can also add these to yoghurt)
  • Ryvita-type crackers with pate (tuna is my favourite), low fat cream cheese or humous dips.
  • Carrot, Cucumber, Celery with low fat dip.
  • Apple and Cheese.
  • Cheese or cream cheese with wholemeal crackers.
  • Rocket, walnut and apple salad.
  • Couscous and tuna.
  • Flapjacks, preferably with seeds or fruits rather than chocolate/yoghurt topping but hey, treats are still okay.
  • Fig rolls – not necessarily healthy but I’ve developed a ‘thing’ for them 😛

If anyone has any other suggestions, please feel free to share!

My first Graze box

For people reading in the UK, I would also like to recommend a company called Graze, who send  out healthy snack boxes to you through the post, with items ranging from breads, flapjacks, mixed fruit, nuts, seeds, olives, teas, chutneys… well, it’s probably better if you take a look. I had my first box delivered today and am really impressed – you get four different punnets of snacks, each one healthy but tasty and large enough to take the edge off the munchies – it took me an hour of picking to get through one.  I’ve had half of mine today and will have half tomorrow, as I’m due another box on Thursday; but you could quite easily order a box every 4 days or so and have one of the punnets each day.

Another thing I have found useful is a Blackberry app that keeps track of your calorie intake. You do this by entering all of your foods and snacks into it, searching by name / brand etc. The app has a record of calorie and nutritional values for a huge amount of foods and so quickly calculates how much you are eating. It’s also a good way of finding out what you may need to eat more or less of – for instance, I noticed that because of the dried fruit I was eating, I was recording a high sugar level and so need to balance this out by swapping some fruit with the more savoury choices above. The app I’m using is called ‘MyFitnessPal’ but there are others too and even better, they’re free. For those who don’t use apps, there are websites that do exactly the same thing too – the one I’m most familiar with is LiveStrong’s The Daily Plate.

With all of these things in place, I feel I am finally conquering the Steroid Munchies and can at least make sure that I keep my food intake within reason. Yes, I still get the occasional craving and I haven’t totally banished the treats (that would just be silly) but I am more in control and feel like things aren’t going to get out of hand without me even realising.

Everything in moderation as my Mum always says!

L

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Thanks to the cortisone injection in my knee on Thursday, the inflammation is settling down. I can bend it more and am no longer hobbling along like a penguin (or at least less so, I haven’t had chance to test myself out of the house yet).  I’m also getting better at stairs, although I’m still slow because of my sore hip, but maybe that will settle down soon too.

Thus continues my love-hate relationship with steroids.

But for now,  I’m 🙂

L

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As I mentioned in my last post, I have had more good days than bad this week and am feeling much better in myself, even if the joint pain and swelling is still there.

This could be down to the Orencia and Methotrexate combination I started at the end of June; I have had three infusions so far and my next one is scheduled for August 25th.  I was sure that I felt a difference after the first, I had more energy and even managed to have a dance at my friend’s wedding a couple of days later. However, at my last infusion, my rheumy was concerned that my test results were actually getting worse, which of course doesn’t fit.  I was confused  but decided to listen to my body and take every day for what it was; time would tell in the end.

I have read of other people who experienced an increase in wellbeing and energy levels, whilst being treated with Orencia, despite still having active disease and joint involvement.  Perhaps this is the case for me, or maybe it just takes little longer to dampen down the inflammation?  But there is another factor that could explain my current ‘wellness’ and that is where the dilemma comes into play:

Both times I have been on the better side I have been taking 20mg of Prednisolone, which I initially tried to taper off.  The most recent increase to 20mg was just under two weeks ago and I’m still currently taking it, grateful for some relief.  We all know how effective Prednisolone is at providing this short-term relief so it would seem that this is obviously to thank for my good days (in part at the very least). 

But my worry is, how are we supposed to know how well a new drug is working for us if we ‘mask’ our symptoms and disease activity by taking Prednisolone and even pain killers?  I know that the theory is to taper off the steroids after so long on the new treatment to see if it ‘holds’ things at bay, but how disappointing to go through months of treatment, convinced that it is working and find out that it was only the Prednisolone doing its stuff, not to mention the frustration of having to do it all over again with another drug.

I’m not suggesting we shouldn’t use steroids and pain killers to tide us over the worst times; in fact, I don’t even want to think how bad I’d feel without them!  I just wish there was an easier way.  It’s hard to explain to people that see me looking a little better and want to enthuse about my new treatment, that it might not be down to that after all – just a pred boost.  Speaking of which, I saw my manager while I was out yesterday and immediately felt guilt ridden.  There I am, out and about, yet unable to let them know even a general idea of when I’ll be fit to return to work.

This doesnt mean I have given up on the Orencia working for me.  I’m probably being a bit impatient; after all, I was told it could take 3-6 months to really feel any benefits and I’m not even at the two month mark yet.  I just don’t want to have to depend on the Prednisolone for good days over the next few months and I want to be able to tell whether my new treatment is helping or not – even a general idea would be good. If only scientists could produce a similar drug to Prednisolone, without all the horrible side effects, all of our problems would be solved.

It’s a battle of wills, but we must keep fighting.

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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After the subtle warning from my Rheumy’s registrar that we were going to regret my steroid intake in the future, and then looking into the possible future risks, I decided that the best thing I could do for now was to at least try to prevent that which should be preventable: Namely, the Osteoporosis.

Our bones need Calcium and Vitamin D to stay strong and steroids seem to deplete this. I have tried a Calcium rich diet in the past but somehow my enthusiasm always wanes and it gets forgotten; not that my diet is bad (we cook from fresh most days) but there are particular foods that are mega-packed with Calcium. Here’s a list of some:

  • Dairy: Milk, Cream, Yoghurt, Cheese, Rice Pudding etc.
  • Green Vegetables: Broccoli, Watercress, Kale, Spinach, Okra,
  • Beans: Kidney Beans, Chick Peas, Green Beans and Baked Beans.
  • Nuts: Sesame Seeds, Almonds, Brazil Nuts, Hazelnuts and Walnuts.
  • Fish: Sardines, Mackerel, Salmon (tinned), Whitebait.
  • Grains: Pasta, Rice, White Bread, Museli.
  • Fruit: Apricot, Figs, Oranges, Currants. Rhubarb
  • Other: Tofu

The ones with the highest Calcium levels are in bold

So from now on I will be trying to encorporate some of these foods into my diet.  Tonight, for example, we had a chicken stir fry with added Kale and Sesame seeds yum.

L

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As expected, the joint injections are starting to kick  in and have given me some relief and better movement all round.  I made the most of this by spending time with some good friends this evening, one of whom is on a flying visit from Spain, where she teaches English.  It wasn’t a wild affair, we just sat around a bonfire in her back garden chatting and ordered some takeaway food; my first Chinese meal in a long time and only because the restaurant gave the option to prepare food without MSG – it was pretty tasty too.

So my feelings today are that sometimes we do need a little extra help from steroids to control our flares, especially if it gives us the opportunity to do simple things like enjoy good company, relax and forget about having an illness for a change.  Spending time with friends can be theraputic in its own way, as they say laughter is the best medicine and I think that  the same can be said for hugs too.

L

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