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Arthritis

• 

  Ninth Post: Ankylosing Spondylitis - Humira Update

  by BryanUK on 07 February 2010
  
  “

  Have been generally unwell over the past week, I've had several involuntary nose bleeds that have been lasting anything from 20 to 90 minutes. Waiting to hear back on blood test results either tomorrow or Tuesday.

  Hoping that these will disaapear as quickly as they arrived. Has anyone else experienced this?

   

  ”
  Leave a comment
• 

  Happy New Year.....a bit late I know!

  by kezza1 on 03 February 2010
  
  “

  I can't believe how fast January went! One minute it was Auld Lang Syne and now it is February! Let me bring you up to date with what has been happening in the arthritis department......

  I am now on home injections for my methotrexate,despite my initial terror I know happily(!) inject myself once a week and it is sooo nice not having to visit the hospital once a week also! I feel a little bit more in control if it is possible to use control and arthritis in the same sentence!

  Apparently my blood test results are improving ,just wish the stiffness would improve too...

  The ankle fusion has been put on hold (result!) as my splint has stabilised my ankle joint for the time being so that is definitely progress!

  All in all,things are ticking along nicely at the moment so I have a lot to be thankful for.

  I am off to Ireland next weekend to visit my sister and her family,leavingthe injections at home,I dont fancy mychances of flying with Ryanair AND methotrexate,do you?

  Anyway,take care all of you and I hope things are ticking along for you all also!

  Post again soon (hopefully before April! ;-) )

  ”
  Filed under: Methotrexate injection, arthritis care, stiffness, fusion

  1 comment
• 

  a new way of life

  by John Littleton on 03 February 2010
  
  “

   

   

   

  Here we go, this is the first “blog” I’ve ever attempted. My name is John I am 51 years old married to Joan with a 16 year old son, and until last year was reasonably fit and healthy with only one underlying problem. 5 years ago during a health check I was diagnosed with an under active thyroid gland and given levothyroxine  by my doctor. I had no symptoms and continued about my normal life  with no cares or worries.

   In march of last year 2009 I started having joint pain and stiffness that got so bad I could hardly walk after a days work.. I was given pain killers and anti inflammatory drugs which seemed at first to calm things down and I returned to work. A few weeks later it was very painful to walk  so back to the doctors for blood tests and a sick note. After results where known I was referred to a rheumatologist who confirmed rheumatoid arthritis and prescribed sulphasalazine  amongst other drugs to hopefully improve my situation. During the summer I was sitting outside the house while off work when my eyesight went funny, I was seeing double, being sick and could not stand up. I ended up in hospital  for a few days (this was stafford district general hospital and despite all the reports I have to say I was looked after very well) and underwent many tests including  MRI and lumbar punctures. I was told that I had had a minor stroke caused by vasculitis, this has left me with nerve damage to my legs, feet and left hand. As a result of all this I now only work three days a week with a days rest in between, I was a working electrician  but now am only doing office work “even that wears me out”, I cannot walk without pain and so any more than a very short distance has to be done in a wheelchair with my wife pushing me. Even driving is hard work as the operation of the pedals causes pain. I have not given up driving yet as it is one of the few independent things I can still do “for now”. it all means a new way of life for my family and me.

  That’s about it for now I have left some details out as I would only bore you as readers if I waffled on as I can do, I will update on my position as and when I can,

  take care of yourself , bye John.   

   

  ”
  Leave a comment
• 

  Check in time again

  by Katykat on 03 February 2010
  
  “

  So this is February. Where did January go? Nothing much has changed here in Bury. I look out of my window and see that it is snowing again!!! Note to self - must put out extra bread for the birds before the garden disappears...

  There has been a bit of a change with me though since last I wrote. I managed to lose a few pounds of my Christmas weight surplus - though in all honesty it isn't really going all that well... yet.  I still  have regular and painful visions of cream cake and Christmas cake and jaffa cake...... it is all so not fair!

  I did however have a stroke of luck (I use the word luck in its loosest possible sense) in that my 'new' pain co incided with an appointment at the pain clinic. Timing is everything! I had to report that I have a 'pulling' pain in my right leg and arm to go along with the persistent back ache. My right calf is also swollen and is not - according to my GP - due to a DVT thankfully!

  So I sat there and bent the  Consultant's ear for about 15 minutes and he, for his part, dutifully asked me to bend and twist and raise and lower limbs. He hit me with a hammer a couple of times and hummed and haa'd. Then we talked about raising the dose of Lyrica from 75mg to 100mg twice daily. Another new adventure! He also rather helpfully offered me an appointment with the Clinic Nurse who will show me how to use my recently purchased but seldom used TENS machine! Result!

  When I stand back from my situation I see myself being gradually pulled further and further into Spinal Stenosis and realise that I must at some point concede that resistence is futile. Now it is all about getting by in as painfree a way as possible.

  That makes me feel sad.

  But on the up side - Spring is just around the corner and warmer days can't be so very far away. Not as far away as my chances of  getting to eat a cream cake anyway!

  ”
  Filed under: pain, diet, TENS, Lyrica, spinal stenosis

  Leave a comment
• 

  Off on Pilgrimage - Blog 15

  by ffredsmum on 03 February 2010
  
  “

  Hi everyone; hope you're all coping with the cold weather.

  Since my last blog I've decided it's time for a holiday so am off on pilgrimage to the Holy Land. Most of my friends are a little bemused that having been told Africa was too dangerous for me (because I can't have the recommended vaccinations) that I find Israel a safe bet: but I've been twice before and had no problems. I'm going for 12 days and as it happens I leave the day after my Enbrel jab. I thought about taking the pen with me for the weekly jab and mentioned it to the tour company. They asked Turkish Airlines who told them the paperwork that was needed but also suggested taking a second one in my checked luggage since they weren't totally confident it wouldn't be confiscated. I can understand their problem since the last time I left Israel my suitcase was x-rayed 4 times and finally unpacked: the thing that was bothering them was the instruction booklet for my camera! So i really prefer not to be involved with needles and Isareli security! Of course putting Enbrel in checked luggae isn't an option on a pressurised aircraft. Luckily my rheumatology nurse also suggested simply having a late injection on my return so problem solved.

   

  I will have to deal with the probem of flying with Enbrel when I go to Guernsey for a longer period but since they carry cats in the hold (dogs in the cabin but need to book a seat) then I assume if it's not too cold for cats it's also good for Enbrel. The only downside there is that particualr airline is nototious for sending luggage on a different flight than its owners! And I thought the whole security idea was you travel with your luggage...but I don't suppose a slow turbo prop is much use to a hijacker....

   

  Since the beginning of January I've cut my Methotrexate back from 8 a week to 5 and so far no ill effects. Over the weekend I wondered whether to ask about cutting out the Leflunomide since I'm assured that this is almost certainly the cause of diarrhea; then I thought to hell with it...if I ask and they say I can't stop at the moment then I have to keep taking it. So I simply stopped. I must say it seemed better until this afternoon but then today is the Methotrexate day and I am convinced that it's the Methotrexate to blame since my diarrhea predates Leflunomide though it has been worse since I both increased the Methotrexate and started the Leflunomide. But just in case i have bought a supply of Imodium Instants for Jerusalem since they are on the recommended things to take with you list anyway.

   

  Once again apologies for typos. My cat is sitting on my right arm and she really can't spell!!!

   

  Sue

  ”
  Filed under: rheumatoid arthritis, Rheumatology Nurse, Arthritis, enbrel, Etanercept, anti TNF therapy, methotrexate

  Leave a comment
• 

  When life throws you snow, make snowmen!

  by bouncingtigger on 15 January 2010
  
  “

  Well it has been a while since my last post... I bet you were all thinking I'd been snowed in!  The good news is that I finally got the rash sorted and started the hydroxychloroquine in November.  There were a couple of hurdles of having bad headaches and seeing big blurry things but it seems it was down to my anemia and so I am continuing with the iron tablets for now.

  I met with a new rheumatologist in the run up to Christmas... I was originally based at Taplow in the South before transferring with the team to Wexham Park when Taplow closed... Despite moving to the Midlands 5yrs ago I stayed with the team at Wexham because I'd grown up with them, knew the surgeons and it was like a little family. Over the past couple of years it has changed... each time I went it was a different locum and the nurses I knew have retired so I decided to take the plunge and transfer to a local hospital.

  Meeting my new rheumatologist was an absolute pleasure. It was at an evening clinic, which I've never heard of and it certainly wasn't busy. We talked through my history (LOTS of it!) and discussed a plan of action. Although I wasn't having any major side effects with the hydroxychloroquine, it hadn't really kicked in so I was still struggling, especially with my feet. It felt like I was walking on hot coals the whole time.
  
  The rheumatologist prescribed me a Corticosteroid injection to help see me over Christmas and also suggested I see a podiatrist for specially made shoes. Have to admit this suggestion filled me with dread! I used to have shoes made for me when I was about 10yrs old which I wore with callipers. Going into my teenage years, I rebelled against this because I just wanted to be like my friends... Hopefully things have changed since then...
  
  The next day I went to see my orthopaedic surgeon about my foot as I have a hammer toe... As far as I know the only other surgery I've had on that foot was a partial amputation on a toe, shortening of 3 of the toes and a bunion removal from big toe (same one that now has hammer toe). X-Ray showed a different story... seems my big toe was also fused when I had the bunion removal done which now makes surgery more complicated and so I need to see a specialist foot surgeon to discuss options.
  
  Christmas was a quiet affair but my mood has taken a few dips especially when the snow decided to stay.  I've been hiding myself indoors, worried about falling over, damaging my hip replacements and being laid up.  On the other hand though staying in has driven me up the walls!  I have taken a chance on a couple of occasions and walked very carefully to the shops for some milk.  The fresh air was lovely!  
  
  Joint wise, the steroid injection has given me a boost, my feet are't as painful so I've been able to concentrate on doing more exercise which has lifted my mood. In fact I went to my first ever fitness class earlier this week...
  
  Late last week a flyer had been put through the door advertising Zumba classes. I'd never heard of it so intrigued, I googled it.... The Zumba fitness program combines Latin rhythms with easy-to-follow moves. 
  
  I emailed the instructor to find out more and if it would be suitable for me... her reply was that it's what you make it, you can take the intensity to high impact or keep it low. So long as your moving you're doing it right!
  
  I went along to the first session and loved it!! Although I have to say with the steroid boost, I ended up dancing like a loon so paid for it the next day! Thats the thing you need to be careful of.... if you're having a good day, it's tempting to do all the things you usually can't... and then you end up overdoing it!
  
  At the fitness class we did basic steps of salsa, mambo, cha-cha, merengue, with the occasional hip-hop & line dancing. I found it hard work because I've not been exercising regularly but we had plenty of breaks. With the bouncing around stuff, I kept my feet firmly on the ground, did my own thing and at my own pace. Left there feeling tired but rejuvenated. 
  
  Its given me the incentive to want to do more.  Sometimes it can be easier to snuggle up on the sofa, wanting to hibernate but over this last week I have done some gentle stretches and about 10 mins on the Wii Fit.  I even got some good news... I've lost 2lb so I'm going in the right direction.
  
  I've also rediscovered my passion for cooking so for the last couple of days I've been making soups which can go in the freezer for those days when I am struggling.
  
  All in all I hope things are on the up...

   

  ”
  Filed under: injection, steroid, getting the balance right, blogging, JRA, fitness, low mood, exercise, weight, exhaustion, cold weather, shoes, rheumatology, podiatrist, surgery, falls, arthriris, juvenile idiopathic arthritis

  1 comment
• 

  Here we go again

  by Katykat on 11 January 2010
  
  “

  Well here we are some eleven days into 2010 and I haven't been warm yet! It's bloomin' perishin' in Bury!

  I was hoping for better but the year didn't get off to the best of starts. I got on the scales on new years day to assess the Christmas damage and it wasn't pretty. Made a mental note to self - use up the mince pies, chocs and Xmas cake ASAP! But things were set to get worse. My son ,who is a gadget person by nature , came to inform me that, according to his state of the art, all singing, all dancing, digital weighing machinio, our bathroom scales were inaccurate. It involved over half a stone of inaccuracy actually!

  OMG!!! Well if I was entirely truthful my pain levels should have given me some clues here. And obviously none of this is my fault so something or somebody is responsible.

  First I blamed the new , evil, anti depressants. They are making me fat!! And what's more they don't help with the pain like the old ones did! No they don't!  They're rubbish!!

  Then I blamed the cold. I have to eat to keep warm - because the cold is making my pain worse! The latter being true the former being made up.

  So here I am on the eleventh day of January, surrounded by diet sheets and food trackers, miserable, fed up, in pain.... I am wearing my husbands support belt so that I can actually sit at the computer long enough to moan to you. I am swathed in a giant scarf and there isn't a biscuit in sight.

  Ah well. Best get on with it. How many points in a jaffa cake...?

   

  ”
  Leave a comment
• 

  Psoriatic Arthritis Blog - Happy New Year?

  by Gail B on 07 January 2010
  
  “

  Happy New Year to you all.

  Last time I was saying how much I don't like New Year's Eve.  Well, this year I liked it even less.  The day before the big day I went in to work to clear my office, which was pretty tough both physically and emotionally.  So, I was planning a nice lazy day to recover - but woke up with the worst migraine I've had for years.  Thursday, Friday and Saturday were pretty much wiped out so my poor husband saw the New Year in on his own - well, with Jools Holland on the TV to be accurate!  

  Lying in bed for 3 days does leave plenty of time for contemplation (in between the sleep and the spells when I think my head is going to explode!) and I was trying not to feel sorry for myself and to think about how things have improved over the past year. So, rewind to last New Year.  I was off work sick, waiting to start on Methotrexate and taking steroids - which made me feel fantastic but, I knew, couldn't continue.  Without the steroids I could do very little and was in constant pain.  Every little thing was an effort.

  Fast forward a year and life has changed enormously.  I have been on Enbrel for over 6 months and am feeling so much better than I did.  I think it's easy to forget how bad things were - I think the mind is quite clever at dulling the memory in that way.  Certainly in my case there was no sudden improvement.  Things have been much more gradual and perhaps that's why you don't notice in the same way.  I do still have a lot of limitations - that's why I no longer have a job!  But even that has a positive side.  I had been in the same job for 15 years and have no doubt that I would have stayed there until retirement, which would have been in 12 years time!  That's a heck of a long time to be doing the same job, no matter how much you love it.  So now I have the opportunity to rethink my life and, who knows, I might find a wonderful new direction to take!

  Enough of my rambling.  I need to go and do something while I still feel so positive!!

   

   

  ”
  Filed under: Arthritis, future, positivity, enbrel, Etanercept, Psoriatic Arthritis, anti TNF therapy, methotrexate

  Leave a comment
• 

  Great results from Enbrel - Blog 14

  by ffredsmum on 05 January 2010
  
  “

  I've now had 7 Enbrel injections and the benefits which began within days of the very first injection have continued. I feel better now than I ever have since being dignosed in 1991; there is no inflammation, pain or stiffness even though I've stopped taking the Nabumetone (Relifex). As I think you know my aim is to get off Methotrexate and following a blood test which shows my ESR has dropped dramatically I phoned my specialist nurse to suggest reducing the Methotrexate. She agreed that I could immediately cut down from 8 to 5 and at my 3 month review we can look at reducing further as long as my condition remains stable....so I think an extra glass of wine is called for tonight.

  The only frustrating thing is that now I feel fit enough for anything I can't go out and do anything memorable until the snow thaws...even my dog won't walk as far as I'm now able to: she just drags me hopefully towards the car. Well there was always going to be somebody that wasn't delighted!!!!

   

  Keep safe in the snow everyone!!

  Sue

  ”
  Filed under: enbrel, Etanercept, alcohol, methotrexate

  Leave a comment
• 

  New Year, New Life?

  by Helen. on 02 January 2010
  
  “

  So hello all and welcome to 2010.

  I started the New Year with some old and new friends that was uncomplicated and very pleasant. Usually New Years Eve means a big party at my home but as i am currently living away from home this year i was a free agent and also had a babysitter, my lovely mum who wasn't feeling like celebrating. So i braced myself and accepted an invite to a house just a stones throw away, i wasn't sure what to expect but it was fun and i am glad i went.

  New Years Day dawned and it was a freezing cold but bright sunny day, we went to the beach at Camber and along with a vast number of others took the first stroll of the year. the dogs and kids loved it, i struggled a little as i am flaring a bit and my feet and knee are always bad during a flare. There was snow on the beach and the sun shone - beautiful.

  Having mentioned the flare, until writing that i was in denial, thats why i love writing blogs, it makes you face stuff that otherwise you try to hide from.Why am i flaring? probably because of the high stress levels in my life at the moment. communication is so problematic when you are separated, it wasn't great when we were together but at the moment the most simple conversations dissolve into misunderstandings and i wish others would keep out of it! especially mother in laws. So today i have rested and slept for most of the day, hope it will help to sooth things down.

  Of course it could also be because the Methotrexate has left my system and Humira isn't working so well on its own :( we will see, time will tell.

  I am lucky, my mum and my friends are so kind and helpful, my children are great too, if not exhausting.

  So having looked back at the blog i wrote a year ago, health wise i am better but still a bit to go before i would say i was wonderfully strong and healthy, but progress is being made and it is a good feeling to see improvement. i know i am lucky to have found Humira and that it is working for me, albeit perhaps i am being too hopeful of it working without support. Watch this space.......

  Take care people, 

  Love Helen x

   

  ”
  Filed under: Humira, stress, methotrexate

  Leave a comment
• 

  Psoriatic Arthritis..........Looking forward to a New Year

  by Gail B on 29 December 2009
  
  “

  Well, Christmas is over for another year and, as always, I'm left with a fridge full of food that no one wants to eat!!  My husband has gone back to work today and so I've been filling my time making soup with left over turkey and vegetables.  I don't know what to do with all the mince pies and Xmas pud though!

  I know some people love New Year's Eve and all that goes with it.  Personally, I've never really enjoyed it.  Somehow I find it a bit depressing and, instead of looking forward to what the next year has to offer, I find myself looking back and dwelling on the year just gone.  A few glasses of champagne have always helped but, this year, I can't even indulge in that!  And what a year to look back on - culminating, on Christmas Eve, with me receiving notice that I was to be retired on medical grounds.  It wasn't unexpected and I know that there was no option but it suddenly feels very final.  So, for me, the New Year will be about working out what to do with the rest of my life.  Sounds a bit dramatic, I know, but I really hadn't planned on ending up in this situation!  

  I mentioned a few weeks ago that my GP was retiring and, last week, I braved the snow to go for my last appointment with him.  I really will miss him and am not looking forward to having to start all over again with someone new.  He decided to change pain relief from Co-Codamol to Tramadol and it certainly seems to work better, although it makes me very sleepy.  Hopefully that'll wear off over time.

  Anyway, back to the kitchen for me but before I go I'd like to wish you all a happy and healthy (and pain free!) New Year.

   

  ”
  Filed under: work, Christmas, enbrel, Etanercept, Psoriatic Arthritis, Tramadol, anti TNF therapy, psoriatic

  3 comments
• 

  Eighth Post: Ankylosing Spondylitis - Humira Update

  by BryanUK on 27 December 2009
  
  “

  Looking back over the past few months I have seen a huge improvement since taking Humira from July, I'm starting to get myself back on track and am looking forward to welcoming 2010 at full speed. Keeping my fingers crossed that it will be my first relatively pain free year since 2006.

   

  I wish everybody a happy and positive New Year, wish me luck for another week off work of overeating and drinking before tackling 2010.

  ”
  1 comment
• 

  Merry Christmas and a healthy New Year!

  by kezza1 on 24 December 2009
  
  “

  Well it has been a few weeks sinceI have posted so I thought I would just leave a quick update and wish you all a Merry Christmas!

  I am now 3 methotrexate injections along,and despite the anticipated terror I am now happily doing them myself with no problems(so far!)

  No improvement yet but I am hopeful. One side effectI had been having was a mouth full of ulcers every weekend after my Tuesday injection. Increased folic acid will hopefully counteract this slight problem with a bit of luck!

  Any way I hope you all have a great Christmas and  lets all look forward to a healthy New year!

  Kerry x

  ”
  Filed under: injection, Arthritis, methotrexate, folic acid, ulcers

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• 

  Merry Christmas fellow bloggers!

  by Katykat on 23 December 2009
  
  “

  Just popped in to wish everyone a very Merry Christmas and a happy New Year! 

  Tomorrow morning I have a telephone doctors appointment (a matter upon which I shall blog when I have an outcome!) and then we are off to snowy Wigan bearing gifts for my family and to have a brew with mum. A little trip to the supermarket for all the last minute bits and pieces and then home.  That's it.  Done.

  That is when my Christmas begins and I love to snuggle up on Christmas Eve with all the lights twinkling, the wine flowing and a good old movie on the telly! Bliss!

  So, as I have this sentimental moment I wish you all a snuggly, twinkly and moderately tipsy Chrismas! Cheers me dears!

  ”
  Filed under: Christmas, alcohol

  Leave a comment
• 

  Hi all just a quick update

  by stevebethere on 23 December 2009
  
  “

  I saw my consultant and he reduced my dose of Methotrexate from the 15mg to 12.5mg and so far i have been ok the side effects seem to have become a lot milder which i can put up with, the only difference ive noticed so far with the lower dose is my skin has come up slightly on my face and scalp which is noticably itchier but i think i would rather put up with that than how i was feeling previously.

  Anyway i hope you are all feeling ok yourselves and your treatments are working, that's all for now.

   

  Lastly i would like to wish everyone of you a very happy christmas and best wishes for the new year.

   

  Regards

  Steve :-)

  ”
  Filed under: Psoriatic Arthritis, methotrexate

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