The gift that keeps on giving!!

Many on long term oral prednisolone will be familiar with the saying that it is the gift that keeps on giving. It is the one medication that gives those who are taking it life but also results in many secondary conditions resulting due to the side effects and the prolonged side effects.

I have written before that I have a love hate relationship with oral steroids. My lungs need them but the rest of my body certainly does not. Recently I have felt that the prednisolone just keeps on hitting me in the face with one thing after another from destroying my adrenal gland meaning unless there is a miracle I will never get off steroids, my bones have been leached of all their goodness and now have osteoporosis, my pancreas is affected meaning I have constantly high blood sugar levels, I have had issues with my eyes as well but never to the extent I do now.

For a good number of years now I have had swollen optic nerves. This has not caused me too much bother other than some pretty bad headaches, these headaches have been getting worse and more often to the point a few weeks ago it floored me. I was in bed the entire day, feeling sick and being sick. I have not had a migraine before but thee headaches are what I imagine they are like.

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I went to my optician last October- I was early for my annual check but I kept getting blurred vision at night and the feeling of having a film over my eyes which no matter how much I rubbed them or put moisturising drops still did not ease the discomfort. At this appointment we discovered I was missing a large chunk of my peripheral vision. I did the visual field test a number of times but each time I kept missing a full 1/4 of the circle in my left eye. Obviously this is not normal so I was referred on to the eye hospital with the final consultant visit the other day. I have been having a variety of scans, tests and drops put in my eyes to try and establish what is going on and the appointment was going to be the reveal all and I was hoping it would be an easy fix and also (clutching at straws a little) it would be something other than an effect from the prednisolone.

Anyway I saw the consultant who needs to speak to another consultant because she doesn’t really know what it is that is wrong but there is something seriously wrong. This did not fill be with hope. You go to the consultant because they know these things and can tell you what is wrong but its more waiting for just now while she speaks to her colleague, she is also wanting me to have a head MRI so they can get a better view of things but Im not really sure how that will help them as I don’t think it will show them anything in more details than they already have but maybe it will.

The long and short of it is I have swollen optic nerves but also the outside of the optic nerve is being compressed so the middle of it is bulging out and there is fluid accumulating with it. They don’t know why or how. They are not convinced it is related to my brain as the headaches I get are not consistent with raised intercrainial pressure which is reassuring. So its back to the waiting game.

Coping with allergic reactions

I have written a lot about my allergies and how the affect me. Being allergic to salicylic acid is a nightmare. It is in everything from fruit and veg to toothpaste. I have been salicylate free for a good 10 or so years now. On days where my asthma is not too bad I can manage food that has a low level of salicylic acid in it but even then I still react a bit but just break out in hives, go bright red, itchy and get a really productive chest and upper airways. This is with 3 different anti histamines onboard, a H2 blocker and oral steroids. I hate to think what I would be like if I did not take all of that and had a reaction.

The physical impact of allergic reactions is not great and the left overs hang around for ages, the itching particularly and then the exhaustion which is not helped by the extra anti-histamines I have to take when I do have a reaction.

For me the effect an allergic reaction has on me mentally is fairly significant. For example today I had a reaction when having my lunch. I had a lovely morning down at Cramond with Ghillie followed by some formal obedience training for Ghillie. The afternoon was full with meetings at the university. I had a reaction at lunchtime which knocked me for 6. I tried to get on top of it quickly so I would be able to make it to the university for my meetings but it didn’t work. I had to cancel and bail out of them. This is the part of having an unpredictable condition that I find so hard to deal with and cant find a good way to deal with it.

My main concern that I think about is what others think. I know I shouldn’t worry about what others are thinking and today of all days I should not have worried especially as the meetings I was meant to be at were with researchers from AUKCAR who all know about allergic reactions. You see so much and hear so much about people who say they have allergies to things but they don’t, it might be an intolerance or something just doesn’t agree with them but it is not a real allergy. This worries me so much as salicylic acid is in so much and I think people must think I am a fussy eater. I also have heard so many times from people who say their friend or family has allergies but they still eat things so it gives this false sense of what an allergy actually is. I have this fear that people think I am a hypochondriac when I wont go near stuff etc.

I don’t really know what I am trying to say other than my salicylic acid allergy is really difficult for me to deal with and having to cancel things at the drop of a hat due to a reaction is so frustrating as there is nothing more I can do to keep them in check.

In this day and age I just wish people would understand what a true allergy is compared to what disagrees with them or is an intolerance etc. It seems like everyone has allergies particularly gluten just now. In restaurants every other person appears to be ordering things that are gluten free yet then tuck into the bread or when they don’t like the taste fo the gluten free option they switch and just have the normal food. If it was a real allergy you would not be doing that, you would be avoiding the food like the plague.

One day I am sure I will be able to get a better handle on things and manage them in a way that I can recover from them quickly so I am not having to cancel plans so often.

A take away I would like readers to think about is how the person who is having to cancel things feels. I never do it because I want to, I cancel because I have to.

Oral Steroids and Bone Health

Oral steroids like prednisolone come with a vast array of side effects. Some of these side effects can be very visible such as weight gain, or thinning skin but these are not the side effects to be worried about. It is the silent side effects that we don’t see that need to most attention and care. As well as steroid induced diabetes and high blood sugar levels one of the other potentially catastrophic side effects from prednisolone and other oral steroids is bone thinning and osteoporosis.

Over the many years of taking oral prednisolone I have gone from someone who really did not think about the side effects to being hit full force in the face.

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I have been prescribed bone protection for years. Calci-chew D3 Forte twice a day and then alendrotnic acid once a week. I have to be honest and until maybe 5 years ago I was not the most compliant at taking my bone protection. The calci-chew never bothered me and it was easy to take but it was the alendronate I used to always forget. I think it is because you only take it once a week and when you take it you must take it with a full glass of water, be sitting up and not take any other medication with it. Part of my morning routine I do on auto pilot which included taking my medication. I would just take it, and do my teeth etc without thinking. Often by the time I realised I was meant to take my alendronate I would be half way through my breakfast. I was not missing it on purpose but after several experiences of taking it after eating I was not going to do it again in a hurry.

A good consultant will make sure you get a DEXA scan regularly especially if you are on long term oral steroids. I had not had one at all until maybe 5 years ago when I was sent for one to check my bone health. The results were shocking. I had early stage osteoporosis with significant bone density loss. I was at this point not even 30 and had the bones of an old lady. I also knew at this point that my asthma was not likely to get much better and I would be on oral steroids for a good portion of my life so I needed to wake up and make an extra effort to take my alendronate. Which I did.

The one slightly daunting part of the whole thing was filling in the pre DEXA scan questionnaire particularly the bit about you diet where it asks how much milk you drink and how much daily you have. I had to count up the average amount of milk over a week and I was pretty shocked!!! But I guess when it comes to bone health the more calcium the better!!

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Now it is the anxious wait for the results to be processed and sent back to my consultant. No matter what the result is there is not much more I could have done. Since finding out I had the early stages of osteoporosis I have been religious in taking my bone protection medication which is all I can ask for.

I do wonder that is the reason I have osteoporosis now because I was started on bone protection late but also because once started I never really took it as thought I didnt need it as I was young and my bones would be ok. I can’t dwell on it now because it has happened and I cant change things. I can only now stop things from getting worse rather than hoping to cure my bones.

If anyone reading this is on oral steroids and not taking calcium supplements from your GP, Asthma Nurse or Asthma consultant then please ask for them. Steroids can have an awful effect on your bones. One friend is now wheelchair bound due to the adverse effects of steroids on her bones.

Never underestimate the power of the humble oral steroid. They do some wonderful things and as a result mean many are alive but they do have some side effects which can be equally as devastating as not taking the drug themselves in the first place.

The Verdict!!

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I have been fairly quiet recently mainly because I was terrified. I have had 3 doses of Mepolizumab and was due to attend clinic and see my consultant for the verdict and find out if I am staying on it or not.

The good news is that I am staying on it for now.

Clinic went well. I am so glad that I had that horrific hospital admission that made me decide to change consultant because it has been the best thing I have ever done. It has come with some issues but overall it has been one of the best things I have done.

I had lung function and FeNo both of which were marginally better but what I have noticed is that I am more stable overall. Recording my peak flow has been super helpful and I can identify what causes were when they dropped whereas before I had no idea and it was all over the place. I would love my peak flow to increase but I am happy for stability over gains (gains are unlikely due to the fibrosis in my lungs now).

The other difference this consultant has decided on is with regard to my steroids. Previously it has been a rush to get me down to the lowest dose possible and see how I go but that has always ended up badly and I spend more time on higher doses and it felt like I was on a rollercoaster all the time. Now, as much as we want to get me down to a reasonable dose and hopefully off prednisolone (wish me luck) we are acknowledging what has happened in the past and he kept me on 20mg which felt like ages (3 months) and then alternating 20mg and 15mg daily (2 months) and now I am to stay on 15mg until February March time and then we will readdress reducing it further.

So many people have asked me if I think the mepolizumab is helping. It is so hard to stay. I think it must be as I have been more stable but I worry that this is due to the prolonged prednisolone and super slow reduction but what I am hoping that it is a combination of both. I guess the time to tell what is doing what is if I get unwell (touch wood I don’t) and I can see how quickly I can respond to treatment and not need invasive treatment. I am aiming for this as know hospital is going to happen as my consultant has said this. He said he would have no worries about admitting me to hospital if either he or myself thought my asthma was not great.

We are also changing one of my inhalers. For the first time in as long as I can remember I had an outpatient clinic where my medications were reviewed and we looked at what I needed to keep taking and what could get binned. The only change he wants to make just now is removing the seretide inhaler and replacing it with Relvar a newer once daily preventer inhaler. He wants me to continue taking some extra fluticasone at night to tide me over as I still have quite significant dips in my breathing at night.

Im happy I now have a plan. Know roughly what is happening with my asthma and asthma care. Over the winter period I will be seen every 2 weeks. Monthly clinics with my consultant and then in-between I will be up with the asthma nurse specialists getting my injection and review there. Also should there be an issue I just have to call in.

The one thing out of all of this which I cannot let go of is why did it take throwing my toys out the pram and move consultants to be able to get in control of my asthma or have a plan to get control of it. I just want answers and I know I won’t get them but I am now trying the treatments I have been asking about for a good number of years. I know dwelling on it won’t help but when its your life that has been suffering it is hard.

Chronic Pain with Chronic Illness

I get my medication each week in a dosette box made up by my local pharmacist. I take so many medications that when I am not well I find it hard to work out what I have taken and what I still need to take. I now don’t need to think about what I take, I just pop them out the relevant space and swallow them down in one.

Today I noticed something though. There were 5 unopened pods from this last week. The 5 unopened pods were all my lunchtime doses of pain killers. I had not been aware of deliberately not taking them but because I was not aware of not taking them then that means I was not in pain and needing them.

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Chronic pain is one part of my health that I shunned for so long. I had always had this perception that I was weak because I was in pain and also was very aware that the Dr’s may think I was just attention seeking or drug seeking. I think I thought this because of the number of times I have seen and heard the conversations had when people come in to hospital with abdominal pain with no real cause and the suggestion of it being psychological or drug seeking.

For many years I lived with pain in my chest specifically the left side of my chest/lung. Part of me didnt want to acknowledge it and if I didnt then I would be ok but then it was harder and harder to function due to the pain I was experiencing. It was one hospital admission when I was in ICU and due to staffing I was being looked after by an ICU advanced nurse practitioner. I think her experience of being a nurse and seeing patients in pain she could tell what was real pain. I had not been asking for pain killers but she could see me wincing and struggling. It was only after she spoke to me about it that I finally admitted to the pain and feeling I had when I took a breath in, the pain was not nearly as bad when exhaling but felt like something rubbing and stabbing when I inhaled. It was from then I spoke up about it and we looked into what was causing the pain. From then I have reluctantly taken painkillers regularly.

Further investigation was done into the area of my chest where I had the worst pain. X-rays showed I had previously fractured some of the ribs- most likely occurring due to coughing and my slightly weaker bones but it didnt show anything major that would explain the sharp, rubbing pain I would get when breathing in but didnt hurt if you pressed on it. I had a CT scan which revealed why I was so sore. A lot of scarring in that part of my lung but also the pleura didnt look normal and the Dr thinks this is what is causing the pain and rubbing feeling. I have never really had a bad bout of pleurisy but the Dr said the way I was describing it the pain made them think it was pleuritic even though I didnt have the infection etc to go with it. I was told that the cause has most likely been due to the infection, trauma and recurrent asthma attacks over the years that have never really had much time to recover before the next thing hit.

Managing pain with a lung condition has really been a big struggle. Certain drugs are out of the question- non-steroidal anti-inflammatory drugs are a total no no and I learnt the hard way when I decided to try ibuprofen gel on my skin but had a full allergic reaction to it (I thought it was just if I took the pills). The aim with pain control is to eliminate pain and allow everyday function which is what I tried to achieve but have never been able to do. To get optimal pain control meant side effects which often meant feeling dopey. I got onto a regime using co-codamol and nefopam which helped although during the week I would use a lower dose of co-codamol due to it making me feel like my head was in the clouds but this meant by the end of the day I was in so much pain. It would feel like the outside of my lung was on fire- no matter how gentle you were you when you took a breath in the pain was the same. To control this part I had oral morphine that I could take at night before doing nebulisers and physio. I went with this regime for a few years until I saw a Dr who decided I should be switched to prolonged release morphine rather than the nefopam, co-codamol and oromorph mix. I was reluctant about this as had a handle on what I was doing and although the pain was never gone it was far more bearable.

The Dr who thought outside the box was a consultant who I had not seen before but was a respiratory consultant. He asked me about the pain and what it felt like, and also what was important to me about everyday function and that if I could I didnt want to be taking painkillers you can get addicted to! I was only 30 at the time and was already taking more painkillers than I liked and it was a worry for the future if I did something that needed pain relief I had this image that they would think I was a junkie because would need a higher dose of painkiller than I should. The Dr said his main concern was getting the pain under control for me to function and be relatively pain free but I should not be on prolonged release morphine etc due to it suppressing your respiratory effort which I can afford to do. I was so happy to know I wouldn’t be taking the MST anymore but a little worried about what I was going to be taking as could not go back to the pain I once had.

The Dr suggested lidocaine patches to wear topically on my chest where it hurts to see if this helped the main as he felt there is most likely nerve involvement and the whole area is constantly irritated which is why it is always sore. He did joke that you cant rest your lungs like you can a sore leg to let it get better!!

So a new regime of painkillers started which was the lidocaine patch, co-codamol 4 times a day and then the oromorph for when my chest is really bad (they also use it for breathlessness to). Since starting on this regime I have been stunned at how the patch has worked. It doesn’t take the pain away totally and the Dr said this is good as it means it will let you know when to stop!!!

Most recently since moving to my new consultant and being kept on the higher dose of prednisolone the pain in my chest has been no where near as bad. Instead of going through 2 bottles of oromorph a month I don’t even use a whole one and as I noticed last week I have not been needing my lunchtime dose of painkiller either. I am so happy about this. I have always had at the back of my mind I want to get off all painkillers so having a week of less pain and not needing the painkillers is great. When I see my consultant next I am going to ask if we can maybe just drop down on the dose of painkiller with a view to stopping them and just having the patch and maybe the oromorph for emergencies!

The lidocaine patch has been life changing- I do not understand how it works really but it works so I don’t care. I try not to wear them at the weekend to have a break and just keep them for work and weekends when I have lacrosse or something.

With each day that goes by just now I am in no doubt that I made the right decision to move consultant. If I didnt I am pretty sure I would have been in hospital by now. Staying on 20mg of prednisolone has got me through a chest infection without needing to increase the dose just a few extra nebulisers and antibiotics. Obviously 20mg of prednisolone long term is not good but I am hoping that as the mepolizumab starts working I will notice the difference and we can reduce the prednisolone!!

New horizons- not knowing how to feel!

In March/April for me my asthma care hit a wall and I could no longer continue as I  was. Despite my consultant being one of the best in the field of difficult to control asthma I was getting no where, I was feeling lost, totally out of control and no idea what I was doing other than trying to keep myself as well as possible. Something had to change and in my opinion it could only be change for the good because I felt things couldn’t get much worse.

That hospital admission changed everything back in April time. By the time I was discharged I had a new team and although I had not met with them yet I felt more confident about my care, who was looking after me and positive about the future. Once discharged home I eagerly awaited my outpatient clinic appointment to find out what would be happening and where I would be going with my care. It took a while to come but yesterday I had my clinic appointment. I spoke with my new consultant on the phone and discussed various things including monoclonal antibody treatment which the allergy people were also keen on. It was decided I would wait and see the consultant once a decision was made on it.

I pinned a lot on yesterdays appointment and the new treatment I would be starting. I kept trying to tell myself to not put all my eggs in this basket as things may not change at all and I might yet end up the same as I am and no further forward in getting my asthma under control. Recently I have felt well and managing my asthma quite well. It is because of the high dose of oral steroids I am on and using nebulisers fairly regularly but it has kept me well. People have commented on how well I look and sound. Again the security blanket of prednisolone the drug we all love to hate but right now I am loving it because I feel so well (come 3am when I am up with insomnia and restless legs I am not so fond of it but cant win them all).

So what happened yesterday….

Well not what I wanted but despite this it was a positive appointment. We did not start new treatment. 2 reasons- my chest was not quite good enough. The recent weather has caused a bit of havoc and I have found it more difficult to remain stable but also he wants to use a different drug but the same type of medication.

He is hopeful that my asthma will get better. He did say and many consultants have said it before I will never be free of asthma and may still need hospital help but I should not have to rely on steroids like I am to be able to function and live some sort of life. I long to just be able to plan things and know where I am with my health from week to week or day to day.

Having faith in a tea is so important and to feel listened to. I went with a list of questions and things I wanted more information on such as a plan of what to do when I am not well because being on unlicensed doses of inhalers and oral steroids there is no where to go when things get bad other than the hospital and that is not needed just for extra medication so to have a plan for this at home would be really helpful.

It may not be perfect but I feel more confident in having someone who I can speak to, I almost ended up crying when I was there as I am so frustrated at my asthma and everything it has cost me and stopped me doing. I try to find the positive and focus on the positives things I have done as a result of asthma but there is the still wonder of what would life be like if my health was to become stable.

I was really shocked when after my appointment I felt so drained and then in the middle of the night I woke up and was so angry. I think it sunk in that there is going to be a change. It may or may not work but something is being tried and nothing has been tried in as long as I can remember. I felt so angry that I have been left sitting for years just going in and out of hospital, up and down on steroids and nothing more was being done so had resigned myself to the forever of life being like that until the attack came that would finish it all. I was angry that only because of a bad admission and really throwing my toys out the pram that something has changed and may help. Im not sure how I will feel about the last decade if this new treatment has a positive effect.

Life has been very busy with various things particularly research and PPI which I love and so thankful to have it to fall on when I asthma is stopping me from doing everything else in my life!!!

Sick leave- what do you do??

Being on sick leave seems to be an all too common occurrence for me. It is never just a day either its weeks and weeks which feels like months and months (well sometimes it is months).

Often people say to me they would love to be off for as long as I have been off and it must have been nice. I hate saying its not and Im glad to be back but it is the truth. I hate being off as I do love my job. I think when you are at work and having a really hard, difficult day the idea of being off is just great, and then when you have had a week of annual leave that has gone by in just a flash you long for more time off to have a good recharge so when someone is off for a extended time you think it would be bliss but to me it is far from that.

Time stands still, it feels like it moves backwards, hours drag and minutes feel like hours. It is ok when I am in hospital and unwell because you feel so awful- time stands still in a different manner, you want time to speed up so you will be out the attack and find it easier to breathe but it doesn’t speed up, again it takes forever but once out the initial terrifying difficulty to breathe has passed you are left feeling exhausted and time just passes as you dose on and off requiring medication in-between but time just passes in a haze so you really have no idea about time or what day it is. This bit is ok as you really do feel ill and just curl up.

With asthma the tricky bit is when you feel better but you feel better when doing nothing and I mean doing nothing. Lying on a bed you are totally fine, breathing is good, heart rate is comfy, pain is at a low and all seems ok with the world until you need the toilet, shower, something to drink and thats it. Your lungs tighten up, heart rate sky rockets and pain rips through your lungs and you think to yourself all you did was stand up and take a few steps but feel like you have just run a marathon. This is when time is at an ultimate go slow. There is only so much lying on your bed or sitting on the sofa you can do. There is only so much day time TV or on demand TV and films you can watch.

They say rest is good for you, enforced rest is even better for you but even harder especially when you know that any movement you do will cause you to feel pain and go backwards. It is frustrating and difficult. Many of my friends with asthma and other lung diseases know exactly what it is like and share my frustrations. For me it makes getting back to work difficult because doing nothing you feel invincible but when do you know that you are ok to go back to work?? It is a hard call and loving work means you want to go back as soon as possible.

I find my self very fortunate as I have my patient and public involvement stuff which I can occupy myself with when having to be inactive and resting. It keeps my brain really active and i feel like I am doing something good with my down time. It is important and it stops me dwelling on what I imagine I should be doing. I would torment myself otherwise. Also writing this blog and the various support groups I am in helps me through it all but I know others don’t have that which is why I am so passionate about PPI because of the impact it has had on me. I am sure I would have long given up the prospect of even returning to work or do anything had I not had a such positive experience being involved in research. It has made the time that stands still move on and passes and soon it is the day to return to work.

How do I know when I am ready to go back to work properly and actually ready rather than my brain is super bored and I need to do something? This time it has taken me longer to go back to work which Im not ecstatic about however over the past week I have noticed how many people say how much better I am looking and how my breathing appears and sounds. This is the first time in a very long time that people have said positive things about how I look or appear compared with how I look like death warmed up and sound like I have swallowed a whistle. It think this is down to a combination of things, 1 having a better steroid regime which is preventing the dip I kept having late on in the day, 2 switching medical team to a new consultant, asthma nurse etc and having confidence in this team and knowing that things are getting looked into compared to before, and lastly I have been off longer but then I was kept longer in hospital and was reliant on less nebulisers when I was discharged than when I am admitted to the Royal and get discharged often before I can even walk the length of the room and often just bounce back in meaning I am not great and more stress on my body. So there is a number of different factors this time that have changed.

The last few days have been a great test for me to see how I really am doing. Going in to work to help with registrar peritoneal dialysis teaching which I really enjoyed and felt like I was useful. I must say I do love teaching but not just the teaching about something but instilling in the teaching and training how important the patient is and not just to get them better but respecting their choice and understanding what is important to them. I feel in renal this sometimes can be over looked especially when a patient chooses peritoneal dialysis as the work up can be longer and if they suddenly decline and require dialysis without a second thought a temporary line is stuck in them and then thats them on haemodialysis.

Today was also another great check to see how the lungs were doing. I attended a collider to discuss ‘Decision Support for Asthma’ which was industry partners, researchers, clinicians as well as patients to brain storm ways to help those with asthma. It was a fascinating meeting and what was clear was the passion of all those that attended to help people with asthma. Ideas were not the same in the groups but the patient and patient choice was at the centre. As a patient it was great to share what is useful and what is not useful to living with asthma. I will write a different post about this as I hope it will have positive outcomes and lead to new innovations.  I was tired by the end of the day but a good tired and not too chesty either despite the really hot weather and humidity (which I think will only get worse as the weekend goes on!!).

 

So fingers crossed when I see the GP on Wednesday she gives me the thumbs up to go back to work and some normality can return to my life!!!