So my ESR has gone from 8 to52 and CRP has gone from 6 to 20 since August last blood test. I'm back on 30 mg pred and due more tests. GP hopes that the symptoms I am suffering from including collapsing legs, pain in lower ribs and back plus loss of balance might now improve. Amen to that because I have had enough of this particular game. It's hard to be enthusiastic about anything when your best and trusted friend leaves you to the ravages of an alien within. I want my body back.
Back to Square One.: So my ESR has gone from 8 to5... - PMRGCAuk
Back to Square One.
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cycli
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DorsetLadyPMRGCAuk volunteer
Hi,
Sorry to hear you’re in a bad way again, fingers crossed the increase can help…. and that tests confirm nothing e,se is going on.
ThanksDL. hope so too
I want my body back. I want my life back. My plan for you is this: they will find something minor that is causing your spike in bloodwork, fix it easily and tada! All will be well. You and me . All of us. Yippee!
I am so sorry to read of this latest challenge you are facing. You have successfully battled so much in the past; perhaps the extra tests will enable you to better understand just what is going on to enable you to move forward. You were an inspiration to me when I was first diagnosed. You still are. I wish you well.
PMRproAmbassador
That's a bit rubbish, All the best.
Yup. Thanks. Such a bleeping roller coaster. Recently checked my texts and one I sent to a GP friend was in 2016 asking for advice on a specialist in neuromuscular discipline when I was concerned about seriously cramping muscles. Wasn't till2021 that we worked out what was happening. Looks like the theory of those that struggle for years before diagnosis makes remission harder for us.
So sorry you are headed, temporarily, downward on the roller coaster ride...but...it means shortly, you will be on the upswing. I'm one of those GCA patients that went undiagnosed and never got into single digits until after three years...but I am there now. Hang on, you will make it out the other side!! Have your tried Actemra? Forgive me if I should know.💞💞 My best....
Thank you for the reassurance. No TCZ yet but hoping for it. 3rd attempt to reduce so probably necessary. Watch this space.
You cannot get your positive attitude in a bottle ...right now that is your best pal on the roller coaster ride. I didn't think the brakes would ever come on....but they have. Now that I have gotten down this far~~~even if I falter, I can do it again.💞
I'm with you there cycli, I'm feeling as bad as when I started 12 months ago. I went to see my Dr and he asked me if I thought the Doctors and the NHS had let me down as I hadn't had a difinative diagnosis. He explained that the consultant was methodically working through my symptoms and medicating in what they believed should bring everything under control and when they have failed they have moved on to the next "guess", I currently working getting all former meds out of my system so next week they can regroup and come up with something else. Saying all this I have all your symptoms, no idea where my blood is at, but facing it everyday gets very very .. not sure what as Pred has taken all feeling away leaving me outspoken and without remorse. This is not me and I'd like me back but I don't think it's going to happen any time soon. Keep smiling cycli
Hi,
So what have they ‘ruled out’ and why…see you mentioned PMR and RA in previous posts…where are you now? Apart from up the proverbial creek without a paddle!
Next thing is Addison's Disease and if they rule that out, they go on to Lupus. I've already had raised indicators for Lupus but I have to go through Addison's first . Am I the wrong age or something, can't it be just PMR.
Nowt to do with age I think. Just our luck and how our bodies react to being screwed. I just wish all these departments would wake up and start talking to eachother instead of keeping their thoughts in boxes.
Doubt's it just PMR, but seems a convoluted way to go about it...sorry you are gong through such a minefield at the moment..
My GP is caring, but it still took her 14 days to realise my worsening condition was urgent. I'm pretty pushy, so heaven help those who don't. I'm hoping the upped dose of pred. will reduce these symptoms and help me back to walking more normally.
Stay 'pushy.' We get nowhere as shrinking wallflowers. So sorry to hear you've taken a backward step when you were doing so well.
Will do. Thanks
Yes I want me back as well. ❤️
I’m Thinking of you Cycli.
cycli in reply to
Thanks stills. I hope it is just GCA and PMR (whay a thing to say) 'cos I don't want anything else to worry about, but what do I know. I thought I was getting a handle on it but clearly I don't.
This is soooo the way I'm thinking.
I thought I was getting a handle on it - the trouble it has the whip hand and you have to concede that you cannot it holds all the cards at present. You will get through it - it just takes time and patience.
The trick,, that I found was most helpful, was that I learnt to listen to my body if it said 'I want to stop' . I stopped. So if I was standing at the sink and peeling potatoes and all of a sudden felt tired. I left the potatoes in salted water. Went and and rested and quite often dropped off for an hour. Then I found out about perching stools.
On another forum, a member had posted about being tired etc, and one of the replies said ' treat yourself like a Precious Princess' ...........so cycli......treat yourself like a Precious Prince.
Just try it for a wee while.
I will Jinasc. Thank you. I am literally housebound for the moment. Hopefully won't last long but a bind. I'm sleeping late into the morning now. Body seems to need it. Totally useless except for the cooking;.
Hi Cycli, I've been housebound for over three weeks now, due to a silly accident with the car, but hopefully that will be available later today. I haven't been able to walk properly for about 18 months now, so, no car = housebound. I was on 5mg Pred, advised to stay there by the GP, but the shoulders were so painful I increased to 6 a couple of weeks ago. I keep wondering if I'll EVER be able to walk normally again, and whether I'll get back to my three miles walk every day, as I was before. (BTW, I'm a touch typist, or have been for the past fifty years, but I'm having trouble typing this post! It's never-ending, isn't it?)
so sorry but yes it does seem endless doesn't it. We still have to keep hoping and follow the science. I'm sure there is an answer but we need to keep pushing the "experts" to keep looking. stay cheerful.
I am so sorry to hear you are in pain and having balance issues. As like cyclists, you gave me hope that I so needed at the beginning of my journey and I have since found such positive advice from your posts. We are all sending you strong good thoughts and wishes that nothing else is going on.
Morning Cycli, so sorry to hear of your latest/continuing problems. Hopefully the increase in Pred will help get things under control again, and the tests come up with some definitive answers. Must be really frustrating, are you able to get anything done on the farm?
🤗🤗
Hello cycli, I'm really sorry that life has thrown this latest challenge at you, and I've got fingers crossed that the extra pred does the trick. Keep on fighting (metaphorically), do what your body tells you to do, take care, and keep us informed.
So sorry to hear about this set back. I can only speculate that your body was so highly tuned that your immune system is taking longer to give up and change direction. It's good that you're having other tests to see if there are any other factors in play. Hope you feel better soon. My thoughts are with you.
😡 That really sucks, Cycli, after all your best efforts. Any chance of something other than pred, eg TCZ? You must surely qualify.
Aw sorry to hear you're going thru it again. I've found it best to go with what my body is telling me in all things. If I overdo one day and can't move the next, then I try not to overdo the same thing. If suddenly the fatigue hits me (and it does), I go crash on the couch for whatever long it takes. Sometimes a couple of hours. There are times when I just get ready to start work (work from home) and the fatigure hits (at 8:00 am). This is the fatigue I have to fight off. I have said to my Team Lead, I'm sorry I just have to go lay down for a bit. Luckily she understands. Roller coaster ride for sure. Sometimes downhill and sometimes uphill. Hang in there. Think about this....you've already come through 100% of your bad days.
Thanks Missus835. Interesting thought.100% of the present batch maybe. Who knows what is round the corner. I have to remember that I am still relatively a newcomer to this. Interesting journey isn't it.
Dr's haven't a clue at present. If anyone can accelerate a process it is me. After all, why hang around for years to deteriorate when you can do it in one eh? 😂 Ever played the board game snakes and ladders? I always raced ahead then landed on the snakes back to the beginning.
dream on 😂
But seriously that article certainly made me think. I'll wait for the tests but am informed. Thanks.
"Interesting Journey" . Love your thought process. I never thought to think that way. I just thought it was a b****y nuisance.
GCA is a lot to handle the first year..............so chin up and keep 😊 or 😭 I did both and sometimes went into the garden and shouted at the sky - "why me and then thought why not me".
Now off for that coffee and as I am the 'Brandy Queen' think that cup is going to get splash. 😊
Hi Cycli, so sorry to hear of your latest/continuing problems. Hopefully the increase in Pred will get things under control again, and you get some answers from the tests. It’s like being on a rollercoaster isn’t ?
It’s discouraging to “go backwards” in our journeys (which is usually defined as having to put our pred dose back up to a higher level), however your body is clearly indicating, through symptoms and bloodwork, that your inflammation is on the rise.
What comes with the increased dose is a reduction in pain and other symptoms as the inflammation is now going to be in check. All we can do is pay attention to what happened on the previous taper and try to learn from it accordingly. I find as time went on I could better listen to my body and pay attention to the signs things were going awry.
Having to go back up to a higher pred dose, or getting “stuck” at a particular dose can certainly be disheartening and frustrating. The road we travel isn’t always straightforward. Hope you feel better soon at a higher dose.
Ah, Cycli that’s awful for you - you must be devastated! Rest as much as you can & let the Pred do it’s best to improve things for you until you get some Tests done.
Good Luck 🍀
update. Feeling better on high dose. inflammation down to 40 so winning. Still unsteady on feet but they think related to diseased muscle and neurones messaging through electrolites. As inflammation reduces it will hopefully improve. We'll see
Good to hear you’re feeling better….😊
cheers DL. still useless around the farm but hoping for an improvement there in time.
Increased inflammation does all sorts of strange things - and it pays to be aware of what it does to YOU. Saves a trip to the GP and a needle in the arm ...
Be careful, I sort of know when we think we are 'winning' - we think OK and do things we would not have done, as we now think we are 'winning'. 👍
Don't think I am winning, but I do think that it is improving. Each day slightly improved from the flare. I am annoyed with myself that I didn't recognise the deterioration was down to inflammation. I had been taking paracetamol to lessen the rib pain from the bloating and the slight head/eye issues. It seemed to be reasonably effective if a little slow, so I didn't think the issues were attributable to PMR or GCA. How wrong could I be. The increase in pred. has resolved all those niggles but i now have to start again but only when the inflammation is back to normal.
Have you considered that prednisone regulates inflammation after the inflammation occurs?
Yes D2C. It's the not recognising that it was raising its head that annoyed me. Pred/ only supresses it and then keeps it there until remission. It is trying to decide how and when to reduce that causes the problems. I thought I was doing fine and on 15mg. So much for progress. Now I'm back on 30 and hoping again.
Just in case, never more than 10% at a time until you reach 10mg then use either DSNS or Dorset Lady's tapering plans.
I used to clear the decks for 5 days after I took a drop. Then waited 4 weeks.
was doing 10% and waited 4 weeks min. each drop. I still flared.
We keep saying - it isn't only the slowness, that makes it easier to see problems, But nothing will get you past the objective: the lowest dose that manages the inflammation.
Like I said, that's why I was annoyed. didn't recognise the signs. Doh!!
Don't be hard on yourself, it is early days and it took me quite a while to get a handle on it and you are dealing with both and I was only dealing with one. Take it easy please.
Have you tried keeping a diary with dose and symptoms/effects?
yes, but some days just seem to blend into each other. It lulls you into thinking that way. Now my days are very limited. I get up later, sleep more, do less and just potter around like a toddler learning to walk. Have to use sticks to keep balance but at least still shopping and doing the cooking and managing to take rex for a short run out in the field. Heyho.
I and would have been driven nuts if I could not have got out of the house. So a ♿️.
I did have fun with the wheelchair. I needed shoes and in we went with the wheelchair. The lady brought the shoes. I put them on and then got out of the chair to walk across the floor. We still laugh at the look on her face, unbelievable. We then explained and she smiled. Often when out I would be pushing an empty wheelchair - the puzzled looks...........
I was on the brink of hiring a motorised scooter when things changed. The extremely rare side effect decided to vanish.
Cyclic the moral is - get some wheels, cart ones will do - anything lying around on the farm? 😈
PS: An extra long lead for Rex or is he well trained and remember Rex knows you are ill. Dogs just know.
you are so right. Rex goes halfway, looks back and sees that I am just waiting . He then runs back up for a treat and then trundles off again. Just a delight.
There are off-road mobility scooters - I remember someone in Devon saying on one of the forums that the best purchase he'd made associated with PMR was one of those which allowed him to continue the walks along the coast that he'd moved there to enjoy.
eastcoastmobility.co.uk/mob...
Might be wrong, but imagine cycli has a quad bike on the farm …🤔
Very likely - but can he climb onto it? And the Mrs will want it ...
Maybe -on both counts! Was trying to save him money 😉
yes a nice one with a winch on the front. last one was stolen.
Update. Feeling better. Still getting up late. Still unbalanced and walking poorly. Still on 30mg pred. Ultrasound of abdominal regional bloating shows fatty liver and heightened colour. Waiting on report. basically, no pain but lessened mobility and usefulness. I just hope this improves soon.
Hope so too…
such a journey. trying to stay positive is hard sometimes.
Any access to a decent physio? If you are walking badly you probably need an assessment Mine has improved my walking a lot.
I used the Footie Club Physio many years ago - he was brilliant.
Cyclic how near are you to 😸Black Cats or Riversiders?
I'm a southerner jinasc, I'll have to google those teams. 😜
Ah an emigrant!!!!!!!!!
Middlesbrough, Sunderland and Darlington aka Quakers.
Note for PMRpro - forgot all about the Quakers........Ta muchly.
yes but I wouldn't go south again. Born and bred southerner but feel more at home in the north than anywhere else. Love it here and is true home finally. Quakers everywhere especially Letchworth. I like them and their quiet ways.
Might the Quakers have one? Or are they too humble ...
Nope - me brain dead quite often. 🤗🤗🤔🤔
Don't think your brain is ever dead let alone idle. I'm so fed up at present. It's like treading water and no progress. Inflammation reducing but still high and no blood test for 2 weeks so hoping that it will allow me to start reducing again from 30mg. The neuromuscular effect of pred. combined with these two delightful bedfellows I have contracted makes for a very frustrating ride.
No more than 10% at a time then wait.
I used to clear the decks (ie do as little as possible for the 5 days after I took the drop.........I learned this the hard way) so choose a day when you have organised 5 days for doing zilch. Keep your pecker up - it just takes time, which I know can be very frustating.
I'm achieving doing zilch even without reducing. It's only taken 17months to become totally useless. Apart from the odd trip to shop, cooking and some cursory log splitting for the fire I am unable to do anything much. I don't know whether it's a phase or something more permanent. The balance is bad and the leg strength is minimal. It's really hard to stay positive but I guess you have all been there and come out the other side so here goes.
"Apart from the odd trip to shop, cooking and some cursory log splitting for the fire I am unable to do anything much".
I can sympathise with you - the fact that your old life has vanished suddenly you like me feel helpless and hopeless. I found that what helped me on really down days was an adult colouring book. What happened was that I had broke down and cried hard and a friend had walked in on it all.
That friend returned the next day with an adult colouring book and pencils etc.
I looked at her like she had gone off her rocker. However she explained why she had done it. I was sceptical but a couple of days later and really down in the dumps thought why not - I lost two hours.
Now I am housebound, I lose hours doing jigsaws with my favourite playlist on.
Somewhere there is something you can find which will occupy your mind and take you out of it for a while.
I have a feeling you can work wood, I would not mind a wooden cat 😼
Take care................
Well, 10 days on and not much change. Still unbalanced, weak but getting by. Can still drive so shopping still possible. C.an still cook and chop some logs so we keep warm. No blood test for a week so treading water and on 30mg pred. Sleeping better and late to rise these days. My days of trying to be active are becoming very limited. But at least no rib or breathing pain now. Hip still an issue so probably something else. At least the bowels seem to be back to nearly normal so that is probably down to reduced inflammation and better muscle action. Now on 20mgstatins for fatty liver, heyho.
Ah forward not backwards, however small the step up is to be celebrated.
A teeny tiny bit of progress and that has made me smile. Take care cycli.
thanks jinasc. I'm glad I don't believe in Karma. If I did I would have to contemplate what I had done wrong in my previous life to earn this.
You did not 'earn' it - it is an unwelcome guest 😖
so it is. thanks for reminding me. I guess we all at some time feel it is our fault for getting it but in truth none of us did anything that deserved it. Pushing hard, striving for the best we can do, working to help others and pushing ourselves to the limit are not bad characteristics. It seems that life truly isn't fair but as we told our kids that's the way the cookie crumbles.
time moves on . Had a Pfizer comirnaty vaccine dual so hope it works. Flu vaccine in 2 weeks time. Still treading water but no pain save for high hip which seems to be deep in socket/joint. Last 3 days or so but just seems another thing to get over. Pred does nothing for it. Nice day at least. Yesterday could hardly stand against the wind.
Not been very communacative of late. Sorry. Been down in the dumps and feeling sorry for myself. Sad really but it probably happens to most of us at times. Ok really but every time you realise that it is having a dramatic change in how you have to adjust it requires one to recalibrate and take stock. Still waiting for MRI into muscles, Neurologist for nerve and balance, blood to see if inflammation is back under control so I wobble on hoping the legs don't collapse again. It's not even trying to find energy that is the issue but trying to stay upright while doing stuff. Makes chopping logs an interesting task. Off for eye test today and next tuesday just to make sure all ok. The range of eye movement has reduced. My days are much shorter now and wife has accepted my current situation. Onwards and upwards Maybe .
Sorry to hear you at such a low ebb at the moment…..just be careful with those logs….don’t want to add in any more issues.
Things will get better, and hopefully sooner rather than later.
thanks DL. Interesting journey.Ironically it makes me wish I had pushed on harder when I was able 😂
Ahh, hindsight ..but it might have made ‘now” even worse ..one never knows.
true.
Comfort yourself that if you had - it might be worse ...
I'll try and thanks. I know you are right. It's just hard to look at all the things I can't do and wish I had got further on before this occurred. Can't change it now.
Remember the quote by Stephen King in The Dark Tower
😈😈
On the other hand - do not look at the things you have not done but take pleasure in the ones you have done and the ones you can do. 👍
But had you gone at things harder - IT might have turned up sooner ...
Al too often it is a signal to someone to slow down and smell the roses
It’s hard to be thankful some days. We all have struggles and obstacles to push through. Yours are many at the moment and hopefully you will get some answers soon. Thank goodness you have a loving wife. Thank goodness you have a roof over your heads and food on the table.
I have to remind myself to what I have in my life even in spite of the challenges with my 88 year old mom and my husband with a cold he doesn’t mind spreading around.
It’s not easy to submit to our physical challenges. But carry on and try to remember this will pass too.
My heart goes out to you.
so kind singingloud. thankyou. It's humbling and probably a good thing to realise we can't always do as we want. Limiting though it is I have come to accept a different way of passing my days and trying to get something from each. in time i hope to return to a better physical state.
We all wish to regain what we have lost. Today I was going through past pictures on my phone and enjoying watching the changes in our youngest granddaughters. I’m trying not to be discouraged by the changes in me but thankful I can be around for my family. I will do my best each day to remember what’s most important- my family!
Have a blessed day!
I think it is the loss that hurts us so much. It is always hard to accept. Whilst it can't be helped there is nothing wrong with retaining a strong hope that come remission day we can start to work hard for some recovery.
Well,today is different. I don't think it is back to square one but more like back to zero and trying not to get to minus one. Hard to breath today and no energy. Slight chest constriction feels like ribs, back have muscle issues. bp 113/78 pulse 69 so everything else ok. wasted day but there it is. spent 2hrs yesterday renegotiating contract with vodaphone . hub just delivered so hoping for 5g connectivity. something to keep me amused.
3 days on and blood test shows back to 4 and 8 on inflammation and sedimentation. Going the start reduction again but GP won't sanction more than 1mg each 4 weeks. Going to be a very slow reduction this time. Not taking any chances. seeing Dr Plant on 28th dec. and MRI for muscles on 16thdec. My gait has improved so we think the balance is down to muscle response on PMR and my eye specialist has put down the muscle action causing double vision to GC A so is going to petition Rheumatologist for TCZ to help reduction of pred. Nothing much will happen now before Jan. so it's more of be patient until then Heyho
Well just to say that I'm a bit fed up with everything. Getting up later, doing less and just grinding along. Apart from cooking I'm pretty useless these days. Never thought it would be this way but there it is. Now at 29mg until I see dr Plant. Maybe it will improve. Pain/discomfort in ribs and back is seemingly down to my locked neck muscles which if I massage helps tp ease the pain. The two strong side neck muscles are obviously tired of holding my head up. It hurts to massage the contracted muscle which feels as hard as a bone but it helps. That makes breathing easier so some relief. What a blooming journey.
Ah, the dreaded sternocleidomastoid muscles! Used to be Snazzy's hobby horse 
whatever they are called they are killers. Had me almost crying tonight. I can see why people go for morphine.
Nothing wrong with tears they do you the world of good - just go outside and cry and scream at the moon. 🌙 I used to go outside and scream at the whole world and I always felt better.
thanks jinasc. Think I just might.
What have you tried to ease it?
self applied massage and paracetamol. I have a feeling it is affected by GCA and is probably responsible reduced hearing acuityon the right side. It gets worse towards the end of the day and standing up preparing for the evening meal just accelerates the muscle lock.
Have you done stretches?
well that explains a lot. It turns out I have been fighting cellulitis these past days/weeks. went into A&E today thinking I had another DVT. Who knew. Now on 4000mg antibiotics daily. what fun eh!!!
hi cycli,
Sorry to hear that, but now you know what it is and are on ABX hopefully things will improve….
Had no-one suggested that before?
no. I had it when I was 23 playing football. too many kicks. was diagnosed as Phlebitis. it nearly killed me and although I recovered I never played again. I thought the swelling was down to the fluid retention until the excruciating pain last few days. I am experiencing some symptoms of all 3 conditions at present and it isn't much fun.
At least now you know what it is. However, when finished with anti-biotics, start VSL 3 - replacement of good guys fast. Anti-biotics knock all the good guys with the bad guys and you need a fast replacement of the good guys.
Not available on NHS. Surgeon recommended to me after op etc. Not cheap but brilliant.
thanks for this. does it affect the efficacy of pred. as that would explain why I have been experiencing symptoms?
washed out doesn't really do it justice.. this cellulitis has really taken it out of me. if you cut, scrape your leg/arm it can let in an infection. it's easy to mistake the normal swelling from fluid retention and not realise what is happening. I hope the antibiotics take effect soon because I am losing hope at the moment. I know it will pass but all I want to do is stay in bed.
In case you are interested for information. It looks like the antibiotic is working. It's been a week on it and the pain is gone and the swelling down. Still a bit red but going in the right direction. Had a difficult conversation with GP reception but hopefully resolved. No interest in them checking up so I need to get them up to speed in this. Need another blood test and more meds. I feel very sorry for patients who just wait expecting something has to be done. Mine is a really good practice but their systems are not very patient friendly. One really has to work hard to get the care needed.
Of course we are interested and glad to hear things are improving - if only a little!
thanks. Sorry if misunderstood. I wasn't asking for sympathy DL. Just a bit staggered with how effective these conditions are in terms of flattening one. Even standing to do something for 20 mins is exhausting .
I know you weren't asking for sympathy.. just updating us... no misunderstanding, no apology..
Sickness is a great leveller!!!!
really brings it home. pmr. can't use a maul to chop logs and can't balance properly anyway. invested in two types of log splitter that should enable me or the wife to do it. this cold spell hasn't helped. still have central heating circulating and can cook but without running water as the spring pump frozen and no way I have energy to sort. Still, whatever the circumstances I'm ok unlike the families of those boys who died. So sad.
i
Hi mate your now starting on the road to recovery by acknowledging you are on a roller coaster so give yourself a big thumbs up. Now use that brain of yours to look for items that solve problems that will keep propping up.
Animal watering tank, with lid , filled with your spring water and loads of candles underneath is one wacky idea that springs to my mid and I would be in fits of laughter if you took a photo.
Mind, I will drink a large 🥃 when you post you are feeling a bit better..........hope it does not take too much time, I am pretty thirsty👍
Good conversation with GP. Have more meds and will halve the dose next week. Blood test on 21st so all under control I hope. Log splitter works and the wife has managed to use it so that's another worry taken care of.
I'm sure she's over the moon!!!!!
yes,how did you guess. One christmas I bought her 10 mole traps. I'll be able to manage the logs now but wanted to know it wasn't impossible if I couldn't
I have had many useful xmas pressies, mostly for the kitchen - but there is a limit!!!!!!
Ah so you invested in a new toy, how about a 'grabber' and have you not wrapped the pump with some of your sheep wool - not the good stuff, the 'shoddy' ?
PS: Had a small tipple............
BTW I assume you have a motorised 'thingy' like Adam on Country File?
likewise on tipple. As to pump, been trying for 10 yrs to sort. It's the feed in and out that are the issue. Insulation practically impossible. Just have to grin and bear it. What's a thingy? Don't watch country file, we live it. No tele anyway.
Think jinasc this
JD Gator - Polaris / Mule / Utility Vehicle - Kubota Golf Buggy
As for CF - my late hubby spent most of his time shouting “rubbish” at it.. as do I on occasion!
UV
I don't even dignify it with my attention!!!
Garn, if you lived on a farm?????
Oops really been off key lately, hope I don't get told off 😈
You mean CF? Has never seemed to resemble reality to me. For the designer welly brigade ...
Yup.............and as I am not one - Joan loved it........I don't bother now.
Too sanitised -and PC …..
I have met and been with so many hard working, struggling uplands and hill farmers. CF has all the pluses and none of their real struggles. I have seen the odd program and inheriting that with all the equipment and the salary to boot makes it easier. His fathers story might be different. They are nice people. We weren't born into farming. My wife was reader studies at SOAS library with a degree in arabic. I'm a designer/maker. We chose to retire and buy an upland farm to turn around into health. We take it seriously but making a living at this level is almost impossible. The avarage income without subsidy for these farmers, mostly renting is £15k. The gov. still hasn't resolved how to replace the subsidy since Brexit and the total will certainly be less than before.
Problem is no government really understands farming.
If they’re on one side of the political divide they only know rich farmers -and if on the other side, mostly townies who don’t have a scooby-doo…
so true. Was confused. CF is different from what I described. Was talking of Matt Baker. They are proper farmers but rather privileged.
MB is okay ish -but he has a few strings to his bow - so not reliant on farming alone.
Yes - I enjoy MB's programmes but it is still not reality for most.
thanks DL. yes have quad. CF is very madia oriented i believe.
Log splitters working perfectly. My legs whilst thin and weak with achilles tendon issue look better than they have for 8 weeks. Cellulitis looks like it is finally getting better. Balance almost gone but can't be neurological or I wouldn't have good hand response. must be pred. induced myopathy side effect. Able finally to use the compresssion leggings
good session with Dr. Plant my rheumatologist. Washed me out driving there and back but worth it. Going to try sparer Lefu..mide (can't remember spelling). Won't start until antibiotic dose finished and nurse checks legs for cellulitis healing properly. We have a programme of blood tests arranged for the next 4 months and 2 monthly consultations. Walking and balance not good or improving but going to reduce pred to 25mg today and see where we get. All for now till something to report. cheers all.
trip to nurse tomorrow to see how leg healing from cellulitis. antibiotics end tomorrow so fingers crossed. If all clear then start lefunomide and reduce pred. hand in hand hopefully. unfortunately my right hip has muscle/ligament issues. It's painful and according to Dr plant the MRI scan indicated the hip musculature showed the presence of PMR. Not sure how that works as it ought to be a test for PMR if true. Something about how the muscle works, or not in this case. Also the achilles tendon on the right ankle is still super tender and won't sustain any loading. Bad to worse describes it but surely this must end sometime.
MRI you mean? Expensive ...
pubmed.ncbi.nlm.nih.gov/109...
hmpgloballearningnetwork.co...
ncbi.nlm.nih.gov/pmc/articl...
many thanks for this. Interesting read. Guess I have to wait for inflammation to zero again and then hope the hip, shoulder and back stop causing problems. Then for the cellulitis and swelling to return to zero and then try to reduce again. Does this ever end??? Yes was MRI and guess I am lucky to have this. At present I would be very happy just to be able to walk properly. Small things.
So, 3 days on and slight improvement. Obviously MRI not a feasible option because of cost as a diagnostic tool. Limited facilities make it impractical. Hoping I don't need another course of antibiotics. Started lefunomide today. 10mg daily so low dose. How do I know if it is having an effect. Still on 25mg pred. Next reduction supposed to be 22,5mg. Hip, back and shoulder still uncomfortable. Legs unsteady and balance shot. What a bloomin journey. Hoping for some light at the end of the tunnel.
Hope LFT works out for you, no experience so cannot help, might be worth raising a new post to ask though..
good luck..
cheers DL. probably a goode idea.
Yes - only me and her (you know who) read all posts...😏
🙏
All seems well at present. Upped Furosemide to help with fluid in legs. No adverse reaction to Lefunomide yet. Cellulitis seems to be "controlled". Like PMR and GCA it never goes away once you have it in the system, but it goes into remission. Achilles tendon is slowly repairing so more rotation of ankle possible but balance is still bad. Another week of slow progress and I reckon I will start turbo again very gently. Changed pill regime and now taking 20mg pred 9am and 5mg at 8pm. seems ok at present. Weather the pits. Wet, windy and cold. Stock are miserable, sleet yesterday. 1 dead lamb so brought rest into barn for TLC and feed. I'm useless at present so hope this improves so I can be more proactive soon.
Well everyone it is 4 months on and still relatively housebound but now stable . As you may have read in another thread we have moved forward and I have a really capable team of leading specialists who are looking into a recovery and management program of exercise to recover our bodies from the ravages of this condition and medication. Rex, my beautiful collie is no more as i had to put him down. The problem I had turned out to be cellulitis and that is now gone. My swollen legs ar almost normal now, if stick thin , compared to my cycling legs. Still wobbly and unbalanced but improving. Trochanteric Bursitis seems to be the current impediment but I'm managing this. All in all I am hopeful and reducing again. The bisoprolol and ramipril taken for heart issues are reduced and stopped and the furocemide is halved. Lefunomide is helping the reduction now at 20mg. no YCZ yet but maybe I won't need it. That's it for now. Just thought I would update you all and thanks for the wonderful responses and advice.
Well everyone it is 4 months on and still relatively housebound but now stable . As you may have read in another thread we have moved forward and I have a really capable team of leading specialists who are looking into a recovery and management program of exercise to recover our bodies from the ravages of this condition and medication. Rex, my beautiful collie is no more as i had to put him down. The problem I had turned out to be cellulitis and that is now gone. My swollen legs ar almost normal now, if stick thin , compared to my cycling legs. Still wobbly and unbalanced but improving. Trochanteric Bursitis seems to be the current impediment but I'm managing this. All in all I am hopeful and reducing again. The bisoprolol and ramipril taken for heart issues are reduced and stopped and the furocemide is halved. Lefunomide is helping the reduction now at 20mg. no YCZ yet but maybe I won't need it. That's it for now. Just thought I would update you all and thanks for the wonderful responses and advice.
Thanks for this...and glad to hear things are improving. But unless people are following your post [like her and me} they may not see your reply.
Next time maybe raise new post but refer to this one...
Take care,
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