A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Monday, 29 September 2014

It's complicated

A while back I mentioned that I had been diagnosed with Impaired Glucose Tolerance (IGT), which is basically pre-diabetes.  The main blood test for diabetes has the not so catchy name of HbA1c, and basically measures the long-term (3 month) blood glucose level. This is in comparison to the finger-prick blood glucose level (BM) that is like a snap shot of what's going on at the precise moment that the test is done.  There are various different levels of HbA1c that classify whether or not someone is non-diabetic, pre-diabetic, or has diabetes.

When I was first diagnosed with IGT my HbA1c was at the lower end of the spectrum for pre-diabetes, but it rose within three months to the upper end.  During this time I was advised by my GP to check my BM at various times, but particularly when I felt unwell with my blood sugars.  By doing this I've quickly learnt how I feel when my BM is high, or at least high for me.

When I was in hospital in July/August there were a number of times when I felt my blood sugars were going high, and when they checked them they were indeed high.  At times they were the highest I've ever known them to be, and some of the staff (and myself) became concerned that perhaps I had crossed that threshold from pre-diabetes to diabetic.  A few of the other staff thought that perhaps my BMs were going high in response to being ill, and that things would settle again once I got home.  There seemed to be some confusion and some argument about what was the best way forward, with some wanting the diabetic team to get involved, whilst others didn't want to do anything.  To be honest, I felt very stuck in the middle without much of a say of what was to happen.  In the end the Diabetes Specialist Nurses (DSNs) were asked to come and see me, but for one reason or another they never actually materialised, and upon discharge one of the doctors said, 'You have a good GP.  Hopefully he'll be able to tie up these loose ends.'  It wasn't exactly ideal, but by then it was the only option I had, and the doctor was right - my GP is good.

I did as the doctor suggest and went to see my GP who suggested getting another HbA1c done.  Sure enough, when the results came back it showed that I am now diabetic.  I was expecting it, but for some reason it was still a lot to take in.  I had thought that it might be a relief finally to know for sure, but it wasn't.  However, I did think that now I had the diagnosis of diabetes then some action might be taken, that I might have access to helpful services that I couldn't use when I 'just' had IGT.  It's true that I have seen the practice nurse with a special interest in diabetes at the GP surgery, and she has referred me to the podiatrist and specialist optician, and that I will be going on a DESMOND course (an education course for those recently diagnosed with diabetes).  However, the earliest DESMOND course there are spaces for, and on which I'm booked, isn't until the middle of November, I won't get an appointment with the specialist optician until April, I haven't heard anything about the podiatrist, and although the GP practice nurse is lovely, she confessed that she doesn't know much about steroid-induced diabetes.  Oh yes, that's the thing, the general consensus is that this isn't 'straight-forward' Type 2 diabetes, but steroid-induced diabetes.  This isn't surprising given that I've been on long-term high-dose steroids for sixteen years ... in fact, it's more surprising that I haven't developed diabetes before now.

I hate steroids.  I can't live without them, but they are wrecking my body.  I've piled on the weight since I started on prednisolone; I've had cataracts in both eyes; it's reducing my bone density and making my vertebrae crumble; it's most likely contributed to the depression that I've suffered for years; it's probably to blame for the peptic ulcers I've had; it's reduced my immunity so I pick up infections easily; it may well contribute to the terrible water retention that I get; and many other minor side-effects that I have from it.  The trouble is that if I don't take the steroids I can't breathe.  Even trying to reduce them a little causes my lungs to start giving up, and I invariably end up really poorly, so I have no choice but to take the meds and take the side-effects too.

There are one or two medications, generally immunosuppressants, that can be taken to help reduce steroid doses - steroid sparing agents.  One such medication is methotrexate, which in large doses is used in chemotherapy, but in smaller doses is sometimes used in rheumatoid arthritis or severe psoriasis.  In a very few instances, in those dependant on steroids, it can be used in those with severe asthma.  I have been on methotrexate before, several years ago, but after about a year and only getting my prednisolone down to 30mg, my consultant didn't think the risks were out-weighing the limited benefits.  Like prednisolone, and most medications, methotrexate has some hard-core potential side-effects, such as pneumonitis/lung fibrosis and liver damage.

Given my recent diabetes diagnosis, my asthma consultant has been keen for me to start methotrexate again.  This is a big turn around from the stance he took last time when he didn't really want me to start methotrexate in the first place, but was eventually willing to try.  This time we discussed the options, and I soon came to realise that I don't actually have any option but to give it a go.  There is no other way to try to reduce the prednisolone, and seeing as the prednisolone is almost definitely making the diabetes worse, I have to try the methotrexate.

I took the first dose of methotrexate just over two weeks ago (it's a once a week medication), and then, because of the potential it has to damage the liver and cause other problems, I had to have bloods done just over a week later.  Nausea is a common side-effect of methotrexate, particularly at the beginning of treatment, and indeed I did feel very sick.  I passed it off at first as something I'd just have to put up with, but then I started vomiting and couldn't keep any of my other meds down, so I ended up having to see my GP.  She was concerned about the potential for liver damage, one of the symptoms of which is nausea and vomiting, so she advised that I didn't take the next dose of methotrexate until we got my blood test results back.  She phoned me a few days later when she got the results, by which time I'd a couple of days of feeling a bit better because I'd missed the next dose of methotrexate.  The upshot of the call was that the results show my liver isn't in great shape.  It's not awful, but some of my liver results were out of normal range, so then my GP didn't want me to take the next dose of the meds until I'd spoken to my consultant.  So many phone calls later trying to get through to my asthma consultant, I eventually got to speak to him and explain all.  He said that he understood my GP's concern, and yes, my liver results weren't great, but given how much prednisolone is wrecking my body, methotrexate is my only chance to try to get the dose down.  I was to take the next dose of methotrexate and have my bloods done again in a week, so I did as instructed and I have to go for my next lot of blood tests in the morning.  I'll be taking the third dose of methotrexate before I go.  Each time I take the meds it feels like I'm putting something really dangerous into my body - something that's going to damage me further.  I know it's my only option.  I know that a lot of people take methotrexate without problems.  It's still not easy taking the meds, even if they are the only thing that might help with the diabetes at the moment.

The saying 'stuck between a rock and a hard place' feels very appropriate with all of this.  Maybe especially so while I'm still on the high-dose prednisolone and we're titrating the methotrexate dose upwards, so I have the potential side-effects of both medications concurrently.  I have to say, these aren't things that I ever thought I'd be having to consider or deal with just because of asthma.  You never really imagine that one disease can lead directly to another simply because of the medication you have to take, and that those medications can have such a damaging effect on the body as well as saving your life.  So confusing.  So complicated.


Diana West said...

So sorry to hear all this, Becky. I hope the methotrexate settles down to some extent, if that's possible. Have you contacted Diabetes UK and talked to them about steroid-induced diabetes? It would be surprising if they didn't have someone with some knowledge who might be able to help or at least reassure you. Diana xx

BeckyG said...

Thank you, Diana. I have contacted Diabetes UK, yes. I'm sure they're usually excellent, but the person I spoke to didn't seem to know anything about steroid-induced diabetes. I get the impression that those who 'man' the helpline are volunteers with diabetes rather than qualified medical professionals. I don't have a problem with this, except that obviously their knowledge is somewhat limited, and in this case they couldn't help me much. It won't stop me from phoning them again in the future if I feel the need, but this time not terribly helpful.

Becky x

Tony3D said...

I have uncontrolled asthma myself. Some of what you wrote paralled some of my experiences.

My issue was actually an allergy to corticosteroids which presented as worsening and more serious breathing problems. Medical staff put it down to the asthma disease getting worse and ignored my repeated concerns that the symptoms got worse with increasing medication levels.

According to corticosteroid drug manufacturer there is a "rare" side effect of allergy (1 in 20,000). Medical staff don't read the pamphlet that comes with the medication. Regardless of what the pamphlet states they keep pushing the preventer medication and gave gone as far as to threaten to not treat if I didn't take it.

How I proved it was an issue was to try a nasal corticosteroid that was supposed to reduce swelling. What actually happened was my nose blocked for thee days and I had a big red nose for most of that time. Also nose bleeds on a second attempt with the nasal spray (just in case it was caused by other reasons). My obvious fear was that inhailed medication was doing this in my lung.

I did a second test with hydrocortisone cream (another corticosteroid drug) at the other end of the digestive tract.

In my case it appeared that a low dose of corticosteroid drugs helped a little and increasing dosages increased my attendances at emergency departments. Reducing average PFER.

Against medical advice I stopped taking corticosteroids. It took months. For some reason stopping this type of medication reduces natural production of adrenaline which has resulted in fatigue. But now my average PFER is 35% better. I am more resistant to chest colds and now recover from them a lot faster (a matter of days verses the weeks or months that every illness took to recover from). I had prediabetes and a fast heart rate and slightly high blood pressure - these have all reduced to normal levels.

My life is not perfect but I now find that an attack is more treatable and responsive to acute inhailer medications.

I also bought a cheap air purifier with a hepa filter that means that particulate allergins floating in the air are significantly reduced and reduce triggering episodes. I suspect that I also had a hypersensitivity reaction while taking corticosteroid medication. Things that definately used to easily trigger an episode needed a lot more contact to get the same result.

I also bought a nebuliser just in case of a serious attack.
Yes it is a more solitary approach to treating the disease but my experience with medical staff was not always positive.

Where I live, the Hospital Emergency Department appears to be not very sympathetic to asthmatics. I don't wheeze when I have a severe attack - just barely able to talk and low PFER/blue chin. If my breathing was louder then medical staff treated it more seriously (in reality a more mild state). I just can't argue with the while it is happening and I hated going there - an attack was "my fault" or caused because I did something wrong.

Not saying my approach will fit all asthmatics but something might be useful.

BeckyG said...

Hello, Tony. Thank you for your comment and all the detail of your own journey with asthma. I'm sorry that you've had what sounds to be a rough ride, and especially sorry to hear about the attitudes of some of the medics you've had dealings with. Unfortunately some medics tend to think that they know best because they've read the text books, failing to realise that not all *real* patients have disease that follows the text books. some also fail to accept that the person before them might actually be one of the few to whom a rare/unusual situation applies. This seems to have been the case with you. I have heard of allergy to corticosteroids before, and had a friend with it. It is very rare, as you say, but yes, it does exist. I'm so pleased that you persevered with your instincts and managed to prove your instincts to be fact. It must be such a relief finally to have some answers and to have found a way to improve your symptoms. I have a *lot* of allergies, but I'm not allergic to corticosteroids, and am instead dependent upon high doses of them for any kind of functioning, hence my current addition to medication with methotrexate as a hope in reducing the prednisolone.

I know exactly what you mean about some Emergency Departments not being receptive to severe asthmatics. I have had experiences of being severely under-treated on occasions, which are terrifying. Like you, I often get so ill that I present with silent chest, which should make alarm bells ring for any good doctor examining an asthmatic, but yes, some inexperienced (or arrogant) doctors will ignore the silence instead insisting that there must be a wheeze. I don't know about you, but experiences such as these make me reluctant to present at A&E/the ED even if I'm in crisis.

Anyway, as I say, I'm delighted that you've found a way through some of the worst of your symptoms and are feeling somewhat better for doing so. Long may the improvement continue. Whilst the approach you've taken isn't the one for me (as I'm not allergic to corticosteroids), it may well be for others, and it's useful information to have here, so thank you for sharing.

Take care.

Karen Grace Bondoc said...

Dear Becky,
I have been diagnosed with brittle asthma this year. Currently I am on high doses of inhaled corticosteroids and they are not working (I think its the problem of most brittle asthmatics). Did you also started with inhaled before oral steroids? It would be nice to share stories. I am also a Christian and it would be nice to also pray for each other. I commented using my gmail account so maybe its better to reply by email to me, if its okay to you.
I hope today you had a good day for breathing.


BeckyG said...

Hello Karen, Thank you for your comment, and yes, I will respond to you by email, but I thought that I'd respond here too.

I'm sorry to hear that you've fairly recently been diagnosed with brittle asthma. How are you doing with that - the emotions of it, and the complexities of it? It can be a lot to get your head around, and difficult to deal with the suddenness of attacks. I hope you have a good hospital consultant, because every brittle asthmatic should have a hospital consultant who really knows what they're doing with asthma.

To answer your question, I did start off on inhaled steroids, yes. That was a loooooong time ago now. I had had many short courses of oral steroids during that time, and in fact it was a short course that I went on and have never managed to get off after something like 16 or 17 years. Even whilst on oral steroids, I still take inhaled steroids, as all asthmatics should, because it's meant to reduce the amount of oral steroids that we need to take. Personally, I'm sceptical about how much effect the tiny amount of inhaled steroid has in comparison to the large oral doses I take, except that the inhaled dose has a local effect and little systemic effect. Has your doctor discussed the possibility of oral steroids with you? What other meds are you on? There are a number of meds that can be tried before needing long-term oral steroids, and it's definitely worth trying them because oral steroids have a multitude of possible side effects that are significant.

Anyway, it's lovely to hear from another Christian, and yes, it would be good to pray for each other.

Thank you again for your post. I'll now try to contact you through email.

Take care,

BeckyG said...

Hello again, Karen. I can't find a direct email address for you, so perhaps you could supply one here if you still want me to reply to you directly.

Take care,

Tony3D said...

Depending on your triggers an alternate to steroids that might work is an antihistamine like zetop. The active ingredient is Cetirizine. There was a study that compared the two types of medication. It didn't work for all asthmatics but it helped some. It does not stop an attack but might prevent the thing that causes the trigger.

BeckyG said...

Hello again, Tony. Thank you for your comment re antihistamines. I already take a daily antihistamine year-round fexofenadine. I have a lot of allergies, including many anaphylactic allergies, for which I have two other antihistamines - chlorphenamine and cetirizine - and, of course, Epi-pens/Jext pens.