Frank Haywood

A nice guy, but also some kind of crazy diseased mutant.
A nice guy, but also some kind of crazy diseased mutant.

Blood Pressure Up Slightly, But…

I had been stuck behind someone driving at 24mph for the two miles before I got to the GP waiting room where they have a machine.  It was 143/89 (74bpm) which is higher than my last test I had at the hospital which was normal at 128/88, so I’m okay with that.

My blood pressure a few weeks ago was 151/91 (82bpm), so it’s gradually getting better due to my change of diet, loss of weight, and exercise.  I is a good boy, I is.

The daft thing is, I just asked my wife (still in Australia) if we had a blood pressure tester somewhere at home and yes we do apparently.  They’re back on Friday – YES! – and I’ll find out where it is then.

So after today I won’t bother going up to the GPs any more and I’ll take my test calmly at home after I’ve been sitting still for a few minutes – which is how you’re supposed to do it.  Unlike today where I could feel my pressure rising while stuck behind that dozy driver, and then walked in to the GPs and put my arm straight in the cuff.

Posted by Frank Haywood in Diet, Exercise, Personal

Mood Swings

As the steroids continue to have their way with me and settle in for some serious trouble, this last few days I’ve been susceptible to mood swings.  Oh joy.  I think I mentioned in a previous post that my anger and frustration would rise to the surface and then pop like a bubble and gone.

Well this is worse.

A little bit of harmless rage and annoyance with the world for a few seconds is something I’ve always felt exactly that.  Harmless.  An instant stress release.  I enjoy a good swear for the same reason.  Annoyed, swear, all gone.  Calm again.  Everyone that knows me knows I’ve always been like this, well it feels like it to me anyway, although I do try to behave when in new or “respectable” company.  But amongst family and friends, a quick “FFS” spares us all, and I often encourage people to have a bit of a swear to clear the air, especially my teenage children.  They hear it all at secondary school, so why pretend swearing doesn’t happen and that we never swear?

These mood swings though.  They go like this.

I’m fine.  All is good.  Happy.  Then suddenly out of nowhere – NOWHERE – I feel sorry for myself and my current condition and there are tears in my eyes.

What the actual FUCK?  Where did that come from?  It’s happening now as I write this.

And now I feel fine again.  No kidding.  A matter of less than 30 seconds.

I seriously hope this is just a passing phase because I won’t live with this and something will have to change.  And there’s the anger going on in that thought right there…

Usually when I know something like this is happening I’ve always been able to push it to one side as unemotionally I know what it is.  Like the steroid downer I experienced in April when I completed the course I was prescribed then before we knew it was Pemphigus.  I recognised it for what it was and after a few days it passed and I was all good again.

If you haven’t read other parts of this blog, I had really bad work related depression about 15 years ago.  I got past it by leaving the job I was doing and kept myself busy doing other things until I would say only fairly recently (the last couple of years?) that I was back to pre-depression Frank again.  Still some permanent changes to my psyche, but really very good all told.

And now this thing twisting and kneading my emotions, and all seeming out of my control.  I know my wife will help me when the family get back from Australia on Friday, and just having her by my side again will work wonders I’m sure.  I’ve told her to warn the kids just in case I start blubbering at the airport when I pick them up.

Hugging and smiling is one thing.  Crying my eyes out because I’m happy is quite another.  I’m a man.  I don’t do that shit.  (Often.)

Posted by Frank Haywood in Personal
Steroids Reduced To 55mg

Steroids Reduced To 55mg

On Wednesday and Thursday I felt a little “not me” a couple of hours after taking my steroids although I couldn’t quite put my finger on why I felt like that.  I just felt a little strange both in mind and body, and I put it down to the steroids, correctly as it turned out.  So I rang up the hospital on Thursday and asked if someone would call me back as I wanted to reduce my dose.  I’d decided I was going to do it anyway on Friday as I often listen to what my body is telling me, and this felt like the first rumblings of trouble.

Friday morning, I took 55mg instead of 60mg and waited.  Two hours passed and then three, and I felt fine, felt normal.  I think my dosage – that I had asked for to deal with my skin FAST – was a little too high, and I’d got almost a couple of weeks in before my body started complaining.  I have to say though that the change in my skin has been amazing and it was the right thing to do.

At this point, the right thing to do was reduce the dose.  I was supposed to keep taking 60mg for four weeks and then reduce down to 55mg before my next appointment on the 13th September.  Instead I’ve done two weeks.

My doctors registrar called me back on Friday and I thanked him as Dr H is on vacation this week.  I explained I’d reduced my dose and he agreed that it was okay, but that I shouldn’t reduce any more until my next visit and they’d had a chance to take a look at me – I’m taking weekly blood tests, so they’re monitoring it all anyway.  I agreed to this, but if I feel a little strange again I will of course phone up as I want to take responsibility for this kind of thing.

The way I feel about this is that while they’re the health care professionals and have the experience and training, it’s my body and I can tell when things aren’t quite right.

As I said, since I reduced my dose I feel fine again, so to me it was the right thing to do regardless.

My concern is that some people would have kept taking the same amounts and who knows, may have caused themselves some permanent damage?  In my case, problem avoided.

Posted by Frank Haywood in Pemphigus, Personal
88kg God Damn It Yes!

88kg God Damn It Yes!

Finally.  It’s taken over a week but that whole kilo has just registered as gone and I’m now at 88kg.  Yes!

Now I know I could have lost this sooner if not for water retention, but the good news is when I eventually get off the steroids – and I WILL – then after a few days my body will do a little catch up as it adjusts to no steroids and I’ll probably drop a few kilos almost overnight.

I’m both relieved it’s gone and a little hyped to know I can still lose weight due to good diet and exercise despite the steroids saying “Go on… One little pie and chips won’t hurt.  You know it makes sense.”

Yeah.  Well, I sort of agree Mr Steroid.  Occasionally.  Let’s say one treat day a week.  But it’s not like I’ve gone insane on cutting back, I’ve just changed things down a little.

#1 – I don’t eat anything I feel like any more.  I’ve done that for years and gradually seen the weight go on.  Just a little bit of self discipline can work wonders when you’re ready in the heady.  This disease has definitely made me ready in that place, and determined to achieve remission.  I can do a little bit of dieting to get rid of some fat – fat which can adversely affect the immune system, which I find frustrating now I know that.

#2 – I found some things that fill me up and that don’t seem to get repetitive. In my case I’m lucky I can eat beans on toast and NEVER get tired of it.  So I switched to wholemeal bread for my toast as it has more roughage and is harder for the body to digest.  I have two slices with Lurpak spreadable as it’s not “whole” butter it’s cut with rapeseed oil, and then a third of a tin of baked beans on it.

Calories?  Two slices of wholemeal bread at 95kcal each (white bread is about the same), and a third of tin of beans at about 105kcal bringing it to 295kcal the entire meal if you ignore the small amount of spread I put on.  Let’s say 325kcal total.  I’ll have that for breakfast with my prescription tablets or for an evening meal and feel fed for hours.  I know that if I feel I have to eat anything else until my next meal then it’s usually not necessary and I can avoid it.  A cup of coffee or a few sips of refridgerated tap water will abate any hunger pangs.  And I ONLY eat now when I’m genuinely hungry, no fixed meal times.

I have two or maybe three meals per day depending on how I feel, but usually three.  One of those is my “old faithful” above, then another will be a nice big bowel of porridge (very filling at 70g oats with water = 245kcals) or every other day I’ll have something more substantial like a piece of unbreaded cod fillet with some boiled (scrubbed not peeled) potatoes and a big pile of peas.  I like peas almost as much as I like beans.  Or I may have oven chips instead of boiled potatoes.

Another meal is half a tin of stewed steak from M&S (delicious), again with boiled potatoes and peas – it’s REALLY nice.

The other night I decided to have a bit of a blow out steak and chips, with pepper sauce, peas and tomatoes.  I didn’t enjoy it as much as I thought I would and I struggled to eat it (but I did) as I think my stomach has shrunk a little now.  And then a few nights before that I had a small steak pie and chips.  Whereas in the past I would have eaten and really enjoyed it, I only found it okay and a little stodgy and when I looked I saw there were 400kcals in the pie.  Maybe I won’t have that again for a while.

Other notes worth sharing are I keep a little stock of small apple pies in and if I feel like I need it after an evening meal, I’ll microwave one for 30 seconds so it’s nice and hot, and put some ice cream on it.  No hard and fast rules on that, but I’d say maybe 2-3 times in 7 days.  Or instead of the small apple pie, I might have a couple of fig rolls and do the same.

During the day or even at night after my meal I might decide to have a small bowl of fruit, and I’ve found that a jazz or gala apple washed and sliced and diced, and mixed in with a half inch thick circle slice from a honeydew melon (diced) is REALLY delicious and filling.

The real takeway (hmm, chinese lemon chicken) though is that I’m not being hard and fast with my diet.  I’ve just found a few things I like that work for me and I’ve been cycling them.  And then every so often, maybe once a week, I have something I really fancy.

Small changes and your body starts to adjust.

Finally, as well as the food I’ve described above, with my prescribed tablets I’ve also been taking a daily multivitamin (folic acid, B vits, C, and iron) to relace anything I might be missing from a more robust diet, and also a 2x day calcium and vit D tablet for bone protection from osteoporosis.  Mix in at least a 30 minute walk each day, and I think I’m finally being sensible about food and exercise for the first time in my life.

It’s only taken a deadly autoimmune disease to get me on track.

 

Posted by Frank Haywood in Diet, Exercise, Personal
Getting Obsessed With My Weight

Getting Obsessed With My Weight

Okay… I’ve been reading some more about fat and steroids (corticosteroids).

It’s fairly common knowledge that you get a redistribution of fat around the body when on steroids, and there are some good theories about why this happens, but essentially it’s straight forward biochemistry.  We’ll get onto that in a minute as I don’t think there’s enough (or posssibly any) layman’s explanations of why this should be going on in your body.

But first, let’s look at why I’m getting obsessed and possibly a little irritatated about this.

Before being diagnosed with PF and being put on corticosteroids, I had already decided and been advised by a nurse at my local GP to lose some weight to avoid complications over the next 10 years, such as strokes, heart disease (like I need another) and diabetes, as I am pre-diabetic.  I totally accepted that to heart, and the steroids are messing it up.

I don’t like it.

As if by magic last night, I suddenly realised that if you ignore the pinkness and the rash on my face (which IS getting better VERY rapidly at 60mg/day of Prednisolone, plus 1000mg Of MMF), then I magically look 10 years younger.  Where have my wrinkles gone?

The steroids gottem.

Okay, I can live with that, my face doesn’t look too different to the way it always has, it’s just not 57yo wrinkly any more.  It now looks like I’ve had a few skillful shots of botox all over to remove the wrinkles, and the nice thing is I haven’t lost the definition of my face… yet… so it does still look like me, and even a younger me.

The problem I now see in front of me is that my face won’t stay this way and it will progressively start to puff out and go round.  “Moon face” you see it described as online.  My first thoughts were I may have no choice about this happening, and it will go ahead with or without my input.

And then, I started reading about what causes this to see if anything can be done about it and it turns out I think I can.  I could be totally wrong, but maybe I can do something about it and the reason I think that is because some people aren’t affected by corticosteroids in this way.  One person ballons and puts on weight, and another doesn’t.  This could be down to purely individual physiological reasons, but maybe the ballooners can do something about it with a modified diet.  I am all for trying this.

I will try to keep this short and sweet and as non-technical as I can, both for myself for future reference and as an explanation to friends and family (and anyone else finding and) reading this.

Why do I do these things?  Because I need to know. I’ve always been driven to understand the world and what makes things tick – it’s a sort of a curse of the scientific mind when you don’t actually want to be a scientist because you don’t have the patience or inclination, but still want to know WHY?

I’ve gathered the information together I needed to work this out with a couple of web pages, plus some dictionary definitions to explain some technical terms.  I’ll tooltip them so you can hover over them without having to go hunt them down like I did.

Ready?  Let’s go.

Why Do Steroids Make You Put On Weight?

Posted by Frank Haywood in Diet, Exercise, Pemphigus, Personal
Weight Will NOT Move

Weight Will NOT Move

I seem to be stuck yoyo-ing at just under 89kg.  Probably the steroids, grr, but at least the weight isn’t going up.  I tried eating a bigger meal the other night in an attempt to get my metabolism working to shift it as that can often work, but it didn’t this time.

I keep going down to 88.5kg, and then later seeing it at 89kg again.  That means the next step is to reduce food intake a little more and maybe start going for a walk just before dark too, and I’m sure it will shift then.

Worth a shot anyway.

Posted by Frank Haywood in Diet, Exercise, Pemphigus, Personal
My Face Is Clearing Up

My Face Is Clearing Up

As I mentioned the other day, the high dosage of steroids are working really well, and my face is clearing up dramatically.  It’s not red any more, it’s now pink, and there’s hardly any flaking.  Most of the skin doesn’t feel sore any more, and really feels quite normal with just a couple of little patches that are behind the rest.  I can see it will be completely normal very soon at this rate, a couple of weeks maybe three.

My chest and shoulders are getting better too, but still have a long way to go – I reckon about another 4-6 weeks to clear up, possibly longer.  With any luck the MMF I’m taking should also really start to be getting a grip by that time and who knows, it might accelerate suddenly?

It’s like what happened to me is now happening in reverse, but at a 10x faster pace.  So the growth and repair functions of my body are operating well to fix the damage my immune system has caused to my skin, and the best news is it seems to be accelerating very rapidly now my immune system is being suppressed.

All good news I guess, and the faster it all happens, the less time I have to take these high doses of steroids.

So the bigger doses of steroids I asked for are fixing it quickly, even though the dosage really makes me scared.  I’m not kidding.  It’s worrying me a lot.

I have to get my skin all better and then off the steroids ASAP.

MMF scares me a bit too in two aspects, the possibility of skin or lymph cancer, and increased risk of infection.  As I’ve always been one of those people who hears a sneeze on the TV and starts sniffling (not hypochondria – I’ve always caught minor bugs easily), I think I’ve got good cause to worry on that front.

But nowhere near like I’m worried about the steroids.  Those babies are like a big bogey man for me, and I really don’t want to end up in a wheelchair.  So at some point I’m going to ask for a bone scan. Maybe the next appointment in September.

http://www.nhs.uk/Conditions/DEXA-scan/Pages/Introduction.aspx

The steroids continue to affect my sleep and I feel mighty fine while taking them.  I only need 3-5 hours a day now and I’m good and alert the whole time.  It’s a very restful and deep sleep I’ve been having and feels like I’ve slept for far longer than I have.  Example: I fall asleep and then wake up to go to the toilet thinking I’ve had at least 3 hours sleep and when I check the clock I’m amazed to see only 30 minutes or less have passed by.  I’m good with that!

The other side-effect I’ve noticed is my anger bursts out and is then gone like a soap bubble.  I paid some money into the bank yesterday and said out loud and then heard it go quiet around me – “You have GOT to be fucking kidding me!” – when the machine spit ALL the money out because it had a problem with one £20 note.  Oops.

Apart from that, nothing notable or… visible.  I don’t know what’s going on inside though, and that’s the worrying thing.  And as I’ve said it on here.  I AM worried.

Posted by Frank Haywood in Pemphigus, Personal
I Bought Some Face Masks

I Bought Some Face Masks

I’ve maybe jumped the gun a bit, but who knows?  I’m taking this all very seriously.  My immune system is already being well suppressed by the body buggering doses of steroids I’m taking, and so I figure that sooner or later I’m going to need to protect myself from infection as the MMF gets up to speed too.  A lot.  I just don’t know when yet.

With that in mind, I bought these at the weekend.

https://www.amazon.co.uk/gp/product/B009PPMVGC/

I figure that when I need them they’ll be there.  They’re FFP3 standard which essentially means I’ll be well protected from breathing anything in, and the way I see it I’ll also get the protection from touching my mouth with my hands too.  Supposedly we touch our faces over a thousand times a day without even realising it. At home where you’d think it would be relatively safe then it’s not an issue, and it’s probably fine.  But if I’m out and about touching door handles, money, etc, then the last thing I want is to be touching my mouth.

I’ll get double whammy protection then I guess, both from breathing things in, and passing stuff by hand to my mouth.  It might mean I attract some looks but I think I can live with that, it’s not like I intend to go out a lot, but I don’t want to be a total hermit.  Fortunately I’m in a position where I can work from home, and I really feel for people who have to go out to a job with this kind of thing going on for them.

I don’t know.  Maybe I’m, acting a little OTT and being crazy paranoid, but it makes sense to me.

The building or food industry typically use FFP1 class masks.

The metal and mining industry use FFP2 class masks. Workers in these industries are frequently in contact with aerosols, fog and smoke that can cause lung cancer over a long term.

Finally, the FFP3 class masks I bought – which as you can see weren’t expensive – offer maximum protection from breathing air pollution. They filter poisonous, oncogenic and radioactive particles, as well as the bit I’m interested in which is viruses, bacteria, and fungal spores.

So I should be well protected as long as I use them correctly.  Maybe they’re overkill, but I’d rather be safe.

Posted by Frank Haywood in Pemphigus, Personal
Pemphigus Is Genetic

Pemphigus Is Genetic

So I read last night that Pemphigus is genetic.  But I also read that it isn’t.  Which one is right?

There’s only one way to find out.  Fight!

My opinion.  It’s genetic.  No doubt.  That’s based on my initial thought of “well of course it is” and then backed up by reading that PV (Pemphigus Vulgaris) is endemic in some areas.  Given that it’s not an infection it’s an immune disorder, then logically it must be because the people who live in that area share a common gene pool.

Am I right or what?

Unless of course it can be triggered by an insect bite of some sort which also exists in those endemic areas.  I would change my mind about this if I saw that evidence – I ALWAYS change my mind given new information, I’m never prejudiced in any way and I have a very scientific way of looking at things.  Evidence based mixed with a bit of theory until tested.

But the real proof is this.

https://www.ncbi.nlm.nih.gov/pubmed/15869862

https://rarediseases.info.nih.gov/diseases/7355/pemphigus-vulgaris

Summarised on the second link:-

“Genetic Factors: Predisposition to pemphigus is linked to genetic factors. Certain major histocompatibility complex (MHC) class II molecules, in particular alleles of human leukocyte antigen (HLA) DR4, appear to confer susceptibility to pemphigus vulgaris.”

So there you go.  The more you know eh folks?

Posted by Frank Haywood in Pemphigus
Headache Tension Gone

Headache Tension Gone

No headache or head tension today so I’ll stick with the 60mg steroids.  Our neighbours came back off holiday and Karen commented how much better my face was looking, and I have to say it is.  Maybe by the time the family get back in less than 2 weeks time it will be very normal.  My chest and shoulders still look bad, but no itching!

I almost feel I don’t need to apply the steroid cream and Cetraben, it feels and looks so much better now, but I’ll continue to do so as the steroid cream promotes faster healing, and I still need that skin barrier assist of the Cetraben.  Just a tiny amount of soreness still on my face under my eyes on my cheekbones where I guess the skin is closest to the bone, but that’s it.

This is the 9th day of 60mg Prednisone  – 30mg seeemed to be only a holding pattern, maybe a *little* better, but not enough to really notice and it may have been months to see anything – and all this real improvement has happened during that period.  The amount I’m taking continues to worry me, but if it can clear most of this mess up in the rest of the 4 weeks at this dose, then good.

After this month I drop down to 55mg and then another appointment on the 13th September at 10:15 with Dr H.  Hopefully when she sees me it will be an impressive amount of change and the photographer will take some more photos for the medical staff records.  I’m okay with that as it’s a learning hospital and I see the advantages of documenting it all.  Maybe this site will be of use to them too.

Posted by Frank Haywood in Pemphigus, Personal