This is my life
MrDJ
Member Posts: 328
Hi everyone. Im Jim 48 from London and im a alcoholic (oopps! Sorry wrong forum)
This is going to be a very long one so bear with me.
It starts of for the first 25 years about arthritis and the last 2 years about PS so if you only want to read the latter bit ill mark where to start later.
Medication that has been used over the last 27 years as far as I can remember:
From diagnosis day. Froben 100mg x 6 a day - now on 2 a day
Salphasalazine 500mg x 6 a day for 23 years - now on 2 a day
Volterol slow release 100mg x 1 a day - stopped when infusion started
Prednisolone 60mg daily for 2 years when eye started
Co-proxamal 8 a day until removed from sale
Lansaprisol 1 a day for last 5 years
Dehydrocodeine df118 upto 8 a day when co-prox didn’t help
Methotrexate up and down between 15-20mg weekly
Folic acid 2 weekly
Oramorph when things get really bad 5-15ml
So id better start at the beginning.
In 1985 I was a happy go lucky 21 year old in the prime of life.
I was working in a hospital xray department and also a semi pro DJ in my spare time. I was quite fit and had never had any medical problems at all.
I woke up one day with a slight twinge in my left ankle and thought nothing of it. Over the next few weeks it got a little worse every day. At the time I thought I might have sprained it on a drunken night out.
As I worked with doctors I asked one of my colleagues for advise. He advised an xray of my ankle which came back clear. He then said might be worth going to my gp to get refered to a specialist. 2 weeks later I saw a rhumatologist for the first time. Bloods and more xrays were taken.
I was taken into the consultants office and was told the xrays were clear (sigh of relief was short lived). The next few lines scared the living c**p out of me.
Don’t plan ahead as you will be in a wheelchair within 6 months.
Being told that at the age of 21 was like hitting a brick wall at 100mph
To cut a long story short (im lying its still going to be long) I was told I had a very fast paced ostio arthritis which they determined from the bloods and not the xrays.
Within 7-8 months I was using crutches and had a calliper fitted to my left leg as the onset was very severe. Xrays every 3 weeks showed up worse each time
I was put on 60mg daily of prednisolone steroids and monitored on a 3 monthly basis.
Fast forward 2 years to 1987.
One day I was outside my house and noticed my left eye was getting slightly blurred.
My gp decided I needed to see another specialist and advised the quickest route would be to go to eye casualty at londons second largest eye hospital.
7 hours and many many doctors later I was advised more tests needed to be done and I would receive an appt in the post. By the time I had got home the hospital had rang and booked me into the london nuro hospital the next day.
4 days later and every test imaginable I was discharged.
2 weeks later I was called by rhmy that they wanted to do a special blood test called HLAB27
this came back positive and I was informed that I also had ankylosing spondylitis but my symptoms were very very rare (oh great). They classed my symptoms as juvenile as it had not affected my spine or sacro illiac joints but instead attacked my eye. Ive been called juvenile before but didn’t expect it at the age of 23.
Within a year I was almost blind in that eye. Strange thing was that I had no pain or redness leading upto or during that year.
After the daily 60mg of prednisolone for 2 years it caused a cataract.which they decided to remove but while I was under the knife they also done a lensectomy lens implant as they discovered that the retinal nerve was damaged as well. Retinal vasculitis and uviitus as been mentioned many times.
im still blind in that eye but luckily it hasn’t affected the right eye at all.
(going to fast forward again as I guess your getting bored already)
since 1987 ive had quite a few operations due to the arthritis getting really bad.
Left total hip replacement / right foot triple fusion arthrodesis / right thump fused / left hand tendon snapped and head of ulner removed.
Left knee, right hip, shoulders and spine are still all clear and havnt been affected.
Lets move forward again to 8 years ago.
2004 I was offered to be one of the first to go on a new post trial wonder drug infliximab which was awaiting licence. I was told I would also need to take methotrexate. After reading all the literature and consent form the word cancer kept cropping up. Sadly I lost my dad to cancer in 2000 so I suppose I panicked and refused the infliximab infusion straight away.
Another year passes and im still in constant pain and relying on crutches to get around.
I was asked the question again and this time I jumped at the chance. Infliximab here I come. I had my methotrexate raised to 15mg and off we go.
Ive just had my 59th infusion last week.
This is the bit I was shocked about. ESR and CRP blood results. My esr was 97 and my crp was 122. both these readings should be below 10 which is normal limits.
I had my first infusion and then another blood test. The readings came back 4 and 7.
They couldn’t believe the results either so another blood test was done and they were 5 and 7
Gobsmacked is an understatement. Within a week I was walking without crutches for the first time in round about 9 years.
Ok, the damage is already done to a lot of my joints so on occasions I have my bad days and weeks especially when it raining.
Of course I have stopped all my bad drinking habits but I do have an understanding with my consultant that once (and if im good twice) a year I can stop my methotrexate for a couple of weeks so I can let my hair down on holiday and drink to my hearts content (which I do) and so far no major side effects.
End of part one almost (I promise).
Last year I had another flare up of my left eye. It got so bad that at one point I was travelling across London to eye casualty 2-3 times a week. During the day I was fine but as soon as I shut my eyes to go to sleep I was in agony within 10 minutes. After a weeks of almost no sleep my body felt like it was giving up. I was prescribed sleeping tablets and oramorph. Then thy decided the eye had to come out. Luckily I saw another consultant first who prescribed some cheap ointment which just made the eyeball very greasy and its been fine ever since. As you can guess I cancelled the operation immediately and have had no problem since.
Ok,now my right knee. Both knees had never been affected until 5 years ago at heathrow airport. I was on my way to Cyprus for a wedding. In the queue to get rid of our bags. A girl in front of us couldn’t lift her case off her trolley to be weighed. Like a muppet I offered to help. I struggled to lift the case but as I did the trolley moved and the case swung back and hit my right knee. I swore a few times and was in agony for 4 hours on the flight. When I got to my hotel room my whole knee was black. Long story short once I returned and had a mri I had internal bleeding which they couldn’t stop. 6 syringes of blood drained. Until this day I still have it drained and injected with steroid on a regular basis. Had it drained and injected again today and was informed it was ostio arthritis affecting it now and will need surgery soon. Oh great.
End of part one.
Go and get yourself a cup of tea or something stronger as part two start here.
Over the years ive been called special and unique by many doctors I don’t get things in the normal way. My PS waits 25 years before it starts to affect me. Ive actually been told by quite a few consultants that I should leave my body to science and my whole body pickled in a jar. That’s put me off gherkins for life.
Anyway, 2 years ago I notice a few spots popping up and forming a small circular patches mainly on my legs. My gp said it was ringworm. A year later it turned out to be the start of Psoriatic Arthritis. I was put on dovabet and dovanex. Dovanex didn’t seem to help at all but I was advised to use dovabet very sparingly and only for short periods of time.
On a weekly basis it was spreading with patches popping up everywhere but so far only on my legs. Its almost de-ja-vu as the area its worst affected are where my arthritis initially started around my ankles.
Last October my rhumy advised I se a dermy and an appointment was made. I then get an appointment back at my gp to see the same doctor who mis diagnosed it as ringworm. As you can imagine I wasn’t impressed and when I saw her it was a 5 minute appointment and the advise to keep using the cream so a total waste of time.
3 weeks ago I finally manage to get another appointment whith the dermy at the hospital this time. He said lets stop the original cream and try an old remedy of coal tar so I was put on alphosyl hc cream. This is certainly making it much more flakey but the colour is going from bright red to pinkish so it could well be doing something. Im still seeing new spots popping up on a regular basis though but ill give it a go for a few more months.
After my knee drainage and steroid injection yesterday the new consultant mentioned maybe trying a different anti tnf.
Will just have to wait and see what they decide.
So that’s my story. Sorry its been a bit long winded but im crap at putting thoughts to paper and hate writing letters so am amazed how I managed this much.
I am still a 21 year old stuck in a 48 year olds body who wants to do a lot of what I missed out on over the last 27 years.
So for the people out there that have just been diagnosed be it man women or child, with all the new drugs on the market today there is more hope for you now than there was for us back in the 80s & 90s
The hardest part is finding what is right for you so don’t give up. Try and stay positive even though pain is not an easy thing to put up with.
This is going to be a very long one so bear with me.
It starts of for the first 25 years about arthritis and the last 2 years about PS so if you only want to read the latter bit ill mark where to start later.
Medication that has been used over the last 27 years as far as I can remember:
From diagnosis day. Froben 100mg x 6 a day - now on 2 a day
Salphasalazine 500mg x 6 a day for 23 years - now on 2 a day
Volterol slow release 100mg x 1 a day - stopped when infusion started
Prednisolone 60mg daily for 2 years when eye started
Co-proxamal 8 a day until removed from sale
Lansaprisol 1 a day for last 5 years
Dehydrocodeine df118 upto 8 a day when co-prox didn’t help
Methotrexate up and down between 15-20mg weekly
Folic acid 2 weekly
Oramorph when things get really bad 5-15ml
So id better start at the beginning.
In 1985 I was a happy go lucky 21 year old in the prime of life.
I was working in a hospital xray department and also a semi pro DJ in my spare time. I was quite fit and had never had any medical problems at all.
I woke up one day with a slight twinge in my left ankle and thought nothing of it. Over the next few weeks it got a little worse every day. At the time I thought I might have sprained it on a drunken night out.
As I worked with doctors I asked one of my colleagues for advise. He advised an xray of my ankle which came back clear. He then said might be worth going to my gp to get refered to a specialist. 2 weeks later I saw a rhumatologist for the first time. Bloods and more xrays were taken.
I was taken into the consultants office and was told the xrays were clear (sigh of relief was short lived). The next few lines scared the living c**p out of me.
Don’t plan ahead as you will be in a wheelchair within 6 months.
Being told that at the age of 21 was like hitting a brick wall at 100mph
To cut a long story short (im lying its still going to be long) I was told I had a very fast paced ostio arthritis which they determined from the bloods and not the xrays.
Within 7-8 months I was using crutches and had a calliper fitted to my left leg as the onset was very severe. Xrays every 3 weeks showed up worse each time
I was put on 60mg daily of prednisolone steroids and monitored on a 3 monthly basis.
Fast forward 2 years to 1987.
One day I was outside my house and noticed my left eye was getting slightly blurred.
My gp decided I needed to see another specialist and advised the quickest route would be to go to eye casualty at londons second largest eye hospital.
7 hours and many many doctors later I was advised more tests needed to be done and I would receive an appt in the post. By the time I had got home the hospital had rang and booked me into the london nuro hospital the next day.
4 days later and every test imaginable I was discharged.
2 weeks later I was called by rhmy that they wanted to do a special blood test called HLAB27
this came back positive and I was informed that I also had ankylosing spondylitis but my symptoms were very very rare (oh great). They classed my symptoms as juvenile as it had not affected my spine or sacro illiac joints but instead attacked my eye. Ive been called juvenile before but didn’t expect it at the age of 23.
Within a year I was almost blind in that eye. Strange thing was that I had no pain or redness leading upto or during that year.
After the daily 60mg of prednisolone for 2 years it caused a cataract.which they decided to remove but while I was under the knife they also done a lensectomy lens implant as they discovered that the retinal nerve was damaged as well. Retinal vasculitis and uviitus as been mentioned many times.
im still blind in that eye but luckily it hasn’t affected the right eye at all.
(going to fast forward again as I guess your getting bored already)
since 1987 ive had quite a few operations due to the arthritis getting really bad.
Left total hip replacement / right foot triple fusion arthrodesis / right thump fused / left hand tendon snapped and head of ulner removed.
Left knee, right hip, shoulders and spine are still all clear and havnt been affected.
Lets move forward again to 8 years ago.
2004 I was offered to be one of the first to go on a new post trial wonder drug infliximab which was awaiting licence. I was told I would also need to take methotrexate. After reading all the literature and consent form the word cancer kept cropping up. Sadly I lost my dad to cancer in 2000 so I suppose I panicked and refused the infliximab infusion straight away.
Another year passes and im still in constant pain and relying on crutches to get around.
I was asked the question again and this time I jumped at the chance. Infliximab here I come. I had my methotrexate raised to 15mg and off we go.
Ive just had my 59th infusion last week.
This is the bit I was shocked about. ESR and CRP blood results. My esr was 97 and my crp was 122. both these readings should be below 10 which is normal limits.
I had my first infusion and then another blood test. The readings came back 4 and 7.
They couldn’t believe the results either so another blood test was done and they were 5 and 7
Gobsmacked is an understatement. Within a week I was walking without crutches for the first time in round about 9 years.
Ok, the damage is already done to a lot of my joints so on occasions I have my bad days and weeks especially when it raining.
Of course I have stopped all my bad drinking habits but I do have an understanding with my consultant that once (and if im good twice) a year I can stop my methotrexate for a couple of weeks so I can let my hair down on holiday and drink to my hearts content (which I do) and so far no major side effects.
End of part one almost (I promise).
Last year I had another flare up of my left eye. It got so bad that at one point I was travelling across London to eye casualty 2-3 times a week. During the day I was fine but as soon as I shut my eyes to go to sleep I was in agony within 10 minutes. After a weeks of almost no sleep my body felt like it was giving up. I was prescribed sleeping tablets and oramorph. Then thy decided the eye had to come out. Luckily I saw another consultant first who prescribed some cheap ointment which just made the eyeball very greasy and its been fine ever since. As you can guess I cancelled the operation immediately and have had no problem since.
Ok,now my right knee. Both knees had never been affected until 5 years ago at heathrow airport. I was on my way to Cyprus for a wedding. In the queue to get rid of our bags. A girl in front of us couldn’t lift her case off her trolley to be weighed. Like a muppet I offered to help. I struggled to lift the case but as I did the trolley moved and the case swung back and hit my right knee. I swore a few times and was in agony for 4 hours on the flight. When I got to my hotel room my whole knee was black. Long story short once I returned and had a mri I had internal bleeding which they couldn’t stop. 6 syringes of blood drained. Until this day I still have it drained and injected with steroid on a regular basis. Had it drained and injected again today and was informed it was ostio arthritis affecting it now and will need surgery soon. Oh great.
End of part one.
Go and get yourself a cup of tea or something stronger as part two start here.
Over the years ive been called special and unique by many doctors I don’t get things in the normal way. My PS waits 25 years before it starts to affect me. Ive actually been told by quite a few consultants that I should leave my body to science and my whole body pickled in a jar. That’s put me off gherkins for life.
Anyway, 2 years ago I notice a few spots popping up and forming a small circular patches mainly on my legs. My gp said it was ringworm. A year later it turned out to be the start of Psoriatic Arthritis. I was put on dovabet and dovanex. Dovanex didn’t seem to help at all but I was advised to use dovabet very sparingly and only for short periods of time.
On a weekly basis it was spreading with patches popping up everywhere but so far only on my legs. Its almost de-ja-vu as the area its worst affected are where my arthritis initially started around my ankles.
Last October my rhumy advised I se a dermy and an appointment was made. I then get an appointment back at my gp to see the same doctor who mis diagnosed it as ringworm. As you can imagine I wasn’t impressed and when I saw her it was a 5 minute appointment and the advise to keep using the cream so a total waste of time.
3 weeks ago I finally manage to get another appointment whith the dermy at the hospital this time. He said lets stop the original cream and try an old remedy of coal tar so I was put on alphosyl hc cream. This is certainly making it much more flakey but the colour is going from bright red to pinkish so it could well be doing something. Im still seeing new spots popping up on a regular basis though but ill give it a go for a few more months.
After my knee drainage and steroid injection yesterday the new consultant mentioned maybe trying a different anti tnf.
Will just have to wait and see what they decide.
So that’s my story. Sorry its been a bit long winded but im crap at putting thoughts to paper and hate writing letters so am amazed how I managed this much.
I am still a 21 year old stuck in a 48 year olds body who wants to do a lot of what I missed out on over the last 27 years.
So for the people out there that have just been diagnosed be it man women or child, with all the new drugs on the market today there is more hope for you now than there was for us back in the 80s & 90s
The hardest part is finding what is right for you so don’t give up. Try and stay positive even though pain is not an easy thing to put up with.
0
Comments
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hi did read most of it but eyes playing up a bit so did skip read a bit so sorry it has taken so long and such a painfull time to get you sorted as you said some good meds out there now but it a matter of finding what suits whom as for docs there always one that does not get it and thinks they know better good luck valval0
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thanks Val. i did warn you its a long read :shock:
just in case you didnt know, you can make the writing much bigger on forums and web pages by pressing the left Ctrl key and turning the wheel on your mouse. certainly helps me sometimes when reading lots.0 -
I did read it all (didn't even stop for a cup of tea
) Life has certainly thrown such a lot of pain and bad luck your way, MrDJ, and you have had so much to cope with, but it's good to know that advances in drug treatments are being made all the time.
I am in awe of people like you who have to endure so much pain and yet can somehow remain positive and supportive towards others. All the best for your future treatment.
Joan
0 -
Hello DJ What can i say to all that it was like a chapter in a book. You certantly have been through the mill DJ and its good to see you being so positive. I hope you stay around because you will be good for younger members I'm getting on a bit now 65 but was told i had RA and PA back in 1982 suffered alkl the usual things and now on Rituximab. Simula experience to you i was in a wheelchair untill i had the Rituximab Ok i'm not dancing but its a fantastic drug and the last couple of years have been really great for RA AND PA. Anyway DJ ill catch up with you again, keep posting and by the way they stopped me drinking through the methotrexate my rheumy refused to treat me if i carried on drinking but i di enjoy it 3 or four times a year.
Take care and keep your choin up
ColinWHEN GOD GIVES YOU LEMONS MAKE LEMONADE0 -
Hi and welcome from me. I read your story with interest, it is heartwarming to hear that the new drugs are so beneficial. I am sorry to hear of what a struggle it has been for you though. You still seem positive which is great.
Stick around and keep posting. 0 -
Hi Mr DJ
I have read all your history and I didn't need a cuppa either
I just want to welcome you to the forum and wish you well
love julie x0 -
thanks for the replys one and all.
@joanlawson
i try my best to remain positive with a seance of humor. im the man that puts everything on red in the casino and it comes in black every time.
i still work in the xray department for 31 years now so see a lot of the other patients around the hospital so i try to cheer them up. last thing they need is to see my ugly mug moaping around the hospital corridors.
@Colin1
thanks mate.
sure have had my fair share of bad luck but the way i see it is theres always worse off than me. seeing the little kids at the hospital that have arthritis, life is so unfair.
yeh its not advised to drink much so i stopped it completely but have an understanding that i can misbehave on holiday.
@suzygirl
sure has been a struggle over the years but hopefully with these new drugs it can help new sufferers sooner.
i havnt had it plain sailing as split up with my long time girlfriend 12 years ago and been single since. as i dont get out much now im still single and living at home with mum.
shes 86 and does all the hard labour. wish i could help her digging the garden or decorating but that would surely kill me off.
@julie47
thanks for the welcome
took me a few days to write it so i needed many cuppas
dont worryi will stick about and try and help out as much as i can.
Jim0 -
Well HELLO Jim
Lovely to meet you.
I read your post with the aid of a hot crossed bun. was lovely but your story was not
Gosh....
you have been through the mill haven't you? l suspect that many of us will be able to relate to some of what you have expereinced l know l can....especially the being 48 bit. Though l am still 17 in my head
What l can take though redaing through the lines is that you are the kind of person who has in no way allowed this to stop him from living a full-life. You seem to travel a lot, which is good
So happy to welcome you to our forums, hope we will have some tips for you - you certainly have some for us
Love
Toni xx0 -
Welcome from me too.
I read your story with great interest, hope to see you around and keep smiling too..
xxTracyxx0 -
hi there jim.
i read all your story took me a while but got through it..
welcome to this forum.
i am new here myself.
so lovely to meet you
and wish you well..
georgie 0 -
Welcome MrDJ. I read all the way through without so much as a break or a cuppa let alone a stiff whisky, though the latter would have been nice.
Whatever you may have lost, you have retained both your sense of humour and sense of proportion. Well done you! They will get you through a lot. Please stick around.If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Hi Jim
And a very warm welcome from me
I did read your story, must say I had a break for a hotcross bun,...now I blame you for that.. i was dieting..
You really have been through so much, gosh reading through it I was putting two and two together, that lots of people on here have eye probs and I think they put it down to there meds, so it was interesting
I am so glad the meds are helping you, it really helps people to read positive post.
You take care, and I hope to see you posting more very soon.Love
Barbara0 -
thanks for the lovely replys everyone.
i sure will stick around and offer support as much as i can.
laughter sure is one of the best medicines and if it wasnt for my humor i would of been locked up in a padded cell many years ago.0 -
I am reading your story with a strong cup of coffee in hand. It is a good job i brought refreshments for this very long painful journey of your life. I admire your positivity and courage. you really have been through the mill. It is a pleasure to meet you and welcome you to our forum. from Joanne sun catcher Joanne0
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Hi DJ,
Glad you found the forum and thats some story there.
Its never easy to be told not to mke long term plans but they often say the worst and we get something a bit better.
I got to be honest i couldn;t read it all..... I did find the eye thing VERY interesting a I have had trouble with mine since 1998..... pain and fog and now one is permanently damaged.
You get better treatment up there though but its interesting a I have often had as mentioned but got so much going on with my bones nobody really is interested.....
Its good they are dong so much for you and I really hope that it will ease off for you. Nice to meet you. Cris x0 -
Hi MR DJ
I'm also 48 and live just west of London. I''m not 21 but 34 in my head cos that was some age I can tell you although 21 had its good points.
Thanks for the tip on making the forum writing easier for those struggling with eye trouble. it prob won't work for me as I use a mouse connected to my laptop????
Elizabeth xNever be bullied into silence.
Never allow yourself to be made a victim.
Accept no ones definition of your life
Define yourself........
Harvey Fierstein0 -
thanks Joanne,Cris and Elizabeth.
the eye hospital has been great for me even though at times ive sat there for 4-5 hours waiting for my appointment. i only live 8 miles from the western eye hospital on the marleybone road in london but taxis charge £20 each way so it did get very expensive last year. of course i cant drive just in case they dilate my good eye for checks. i do have a com cab taxi card but once i used that it was a black taxi and there was a major traffic jam. with the discount price it came to over £35 one way as black taxi clocks keep ticking even if you stopped in trafic.
hopefully its going to give me a break this year and behave itself.
Elizabeth. i also use a laptop with a mouse and as long as it has a wheel on the mouse it will enlarge the whole page you are viewing. so just press and hold down bottom left key Ctrl and turn the mouse wheel backwards or forwards.
i will try to find out how to do it if you dont have a wheel on your mouse.0 -
had to make another post as edit timed out.
good news. after a play with my computer ive sussed it out how to do it without a wheel on your mouse.
to make text and web pages bigger to help with reading you can use:
Ctrl (press and hold bottom left key) and use the - & + keys to the right of your number keys to enlarge or make smaller.0 -
Thanks for posting you story Mr DJ.
I read all of it.
I know people say this all the time but it reminded me again that there is always someone worse off than oneself no matter how bad you think your own problems are. It has certainly made me think.I am inspired by you sense of humour as well.
I hope you experiences hasn't put you off pickled onions as well...I personally think they are quite tasty!0 -
Hi. I am new to this forum as well.
I found your story was compelling to read, you write with such feeling, and despite your long struggle, you have managed to include some humour.
I wish you all the best for the future. Stay strong keep your sense of humour and good luck.0 -
Hi Mr DJ
For what its worth with my eyes they tell me that the mtx is the best thing and should help control it.
You got far better treatment for sure as mine is ignored as near as... he eye dept say its my brain and the neuro say its my eyes so neither of them will 'own' the optic nerve.
Mine is optic neuritis and it flares for 3 months at a time roughly them backs don a bit till the next time.
The fog was bad this morning and so were the back and neck... maybe it is all connected. I see the rumo tomorrow and will ask him to see if he would test for as... tis simple enough to do a blood test.
I have read all your post now and you been through the mill. I am so sorry i couldn't this morning my eyes get better the longer into the day it is unless i have a fall asleep when its back to stage one again.
Mine came up on the brain scan as the optic nerves them selves and well reading your psst it was kinda familiar....
Hang in there and I hope the traffic is lighter for you. We here have no concept of traffic really and though my hospital is 23 miles away it sounds like I get there quicker. I hope it will be a better and cheaper journey next time. Cris x0
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