7 years on

Hi I'm Christine and new to Health unlocked . I woke one morning 7 yes 7 years ago coming up to my 60th birthday unable to get out of bed /use the loo/without help. I had the horrendous pain as so many of you have had. I obtained a private appt on the day of my husbands 60th birthday bash and was diagnosed and put on 15 mg pred. 2 weeks later on my 60th I looked and felt a different woman. Three years later I contracted GCA. Violent headache /very weepy/no appetite . This went undetected by 2 doctors until my own gp saw me and immediately did bloods ( i had an ultrasound the next morning) . Up I went to 40mg pred, Thank goodness. Since then I have had many flare ups of PMR pain and am currently on 4 mg a day. I will be seeing my NHS Conslt. in May who hopes I will be off the pred by then. Its been a long road for all the family. Ask me anything . Ha ha I feel I should be an expert Iv'e not read about anyone suffering as long as me.

46 Replies

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  • Hello Christine & Welcome 💐

    Well Done on getting down to 4mg, I'm at 6.5mg & planning to stay there a while as l go on Holiday soon, it's been a long road for me too & you'll find many more on here, suffering for a lot longer, sadly.

    Regards

    Mrs N

  • Hi Mrs Nails Yes we have just come back from a lovely sunshine holiday when I did aquafit every day. The water seems to help me I feel more like my old self = more in contol. Pity I couldnt do the housework in the water !! . Enjoy your break keep active and you'll beat this thing

  • Well Done on the Aquafit!

    This trip is a bit of a Site Seeing Adventure but travelling on a Cruise Ship 🚢 so a day in Port then a day or more at Sea between destinations, so time to recover!

  • fabulous enjoy yourself

    Christine

  • Where are you going? OH had a brainstorm yesterday - and booked a week in Malta for the week after next! Flying from Treviso with Ryanair - so hoping Mr O'Reilly is on good form...

  • Flying to Hong Kong for a few days then joining Queen Mary 2 for 3 weeks in the Far East finishing in Singapore for a couple of days.

    Start of The 40th Wedding Anniversary Celebrations ❤️

    That's was a nice surprise from OH Enjoy Malta!

  • I'm quite jealous - that is the sort of cruise I could cope with. Not a fan otherwise, as long as there was a destination every day and dinner at night while travelling that would be fine.

    Now me - I got a ruby bottle of wine for dinner...

  • It's working out well for me, pretty much a sea day between each Port & there are some are long days, so I'll be glad of a 'day off' breakfast in bed while T's at the Gym, then Afternoon Tea & an excellent dinner at night! 🚢

  • The weather on our Canadian cruise was the problem - and indoors it was shopping, gambling and other such delights!

    Where does it include?

  • Shanghai, Busan, S.Korea, Nagasaki, Seoul, Thailand or Siam as I prefer to think of it (The King & l)

    We return to HK & Shanghai twice to pick up the 'Over Landers' We were going to Taiwan but things between them & the Chinese are not good apparently!

    So we need warm clothes then Linen for when we reach the tropics but we've been to Singapore before, so know what to expect!

    💕🚢

    I couldn't book for the Tea Ceremony in Busan as you have to sit on the floor for 45 minutes! 😂

  • Haven't been to Nagasaki or Thailand, done the rest, all separately though. Don't miss the fish market in Busan! Do they do a general sort of "City Tour"? I assume there will be a lot of Americans so it would include the War Cemetery - we didn't go as I wasn't sure how much walking it would include but apparently there is a Britsh Memorial there too from the Korean War. Things between the Chinese and Taiwan are never good...

    We had a tea ceremony in Shanghai where we sat on chairs - much more comfortable!

  • We've chosen our Tours very carefully but Nagasaki& Bangkok are our longest days. I've watched on the number of steps because of my knees. Fish Markets seem to be a must see on all the various tours.

    I've got myself steady on 6.5mg so I'm planning on staying there until after the Holiday. Currentlytrialing 2.5mg coated before l go to bed & 4mg with breakfast, hoping it'll give me a better start in a morning & not be so stiff 1st thing. So far, so good! Fingers Crossed 🤞

  • I suspect it is like temples - once you've seen one fish market you'll have seen them all! By the time I had finished in Japan I never wanted to see another temple again!

    Have you thought of taking a pair of collapsible walking poles? Mine fit comfortably in a suitcase. They do take some strain off your knees.

  • I have my folding walking stick, which I'm taking but I'll look at the poles

    Thanks

  • Enjoy Singapore, and go to Raffles for a Singapore Sling - pricey must a must! Make sure you tell taxi Raffles Hotel, there's a Raffles shopping mall as well!

    Think it was our Pearl Anniversay that did involve stones, unfortunately they were patio blocks, and we laid them ourselves! Well I already had pearl earrings and a necklace! What else can a woman ask for! Usually he was very romantic, but must have had a blip that year - come to think of it - it was a year after his triple heart bypass❤️ so maybe that accounts for it. Patio still looks good though.

  • You have to throw peanut shells too - we did! I liked Singapore although I was nibbled badly in the Botanic Gardens!

  • Yes l plan to get that Singapore Sling🍸this time, we did the Afternoon Tea at Raffles Hotel but US Friends didn't 'get' Singapore & the old heritage so wouldn't go up to The Long Room!

    Cheers DL🍸 And To Us All 🥂

  • yes alexgranma, where did you go for sunshine holiday, i am going to cuba in march, as we have done over the years, now on pred, started on 40 mg in oct, down to 17.5, some concerns, re immune level, as we always have to be careful what we consume when is those countries, susceptibility to illness at that doseage,and apparently the sun puts one at more risk for reaction while on prednisone ,

  • We were in tenerife with 8 others We did lots of laughing. It felt good.

    Oh Cuba how exiting Im sure you will have a super time (dont smoke too many of those cigars!!!)

    Just want to ask everyone do you all have a blue steroid record card? As a precaution I also always carry a copy letter from my conslt with details of my pmr/gca history

    Take care all

    Christine

  • I'm not far behind you Christine. It will be six years in June, though I haven't been unfortunate enough to get GCA (touch wood). I'm down to 2 mg and hope to be clear by Easter. What a relief that would be! I still have a raised CRP which nobody can understand unless it's related to the chronic sinus infection for which I had an op before Christmas. I hope you too will be free of pred and have an enjoyable spring and summer.

    Ann

  • Hi Ann my conslt goes off my symptoms now as my ESR has been up even when im feeling no worse. As I believe ESR is a measure of inflamation in the body your CRP cld also be an indication of your sinus infection. Thank you for your good wishes and good luck

    Christine

  • Welcome Christine, but I have to say that I was diagnosed when I was 57 and I am now 72. 16/17 years down the line and there are several who post here who are at the 10/12 year mark.

    Yes, I've got GCA too, plus several other medical conditions, but hey, I'm still standing!

    Congratulations on getting down to 4mg (many would love to be there) and I hope the rest of your journey is a smooth one.

  • ~Thank you for your good wishes. In a bazzar way knowing 7 years is not the longest for this troublesome disease is a comfort. Take care

    Chrsitine

  • Not quite as long as you, but 6 years all told, and as Mrs Nails said there are those that have had it longer.

    Only advice I would give, is don't rush the last few mg of Pred, if you've had many flares maybe your PMR/GCA is still more active than you think.

  • Thank you. I was down to 2 but had to double up at end of November. Gng to do it by 0.5 from end of Feb. Take care

    Chrsitine

  • Good idea. Much easier on body, and usually successful.

  • It is nearly 13 years since my first PMR symptoms appeared at the age of 51 - I had a long and slow onset over about 7 months. I've been on pred for well over 7 years with a couple of flares in the meantime - it seemed beyond the wit of man to work out what it was for the first 5 years! It is probably that I have GCA without it affecting my vision - I have other typical symptoms - but 15mg has always been enough to sort it out eventually.

    I've been down to 4mg once until I had a flare a year ago. Back to 15mg and now down to 8mg comfortably. Once this foul weather goes away I shall try 7mg again - got there and then it got wet and disgusting instead of being cold (-15C overnight) but dry.

  • Oh your'e having a journey. Yes I think the cold and wet affects me. Cant afford to get all my family and friends over to the sunshine though.!!!

    Take care

    Christine

  • Good Morning PMRpro .. reading these posts about PMR/GCA sufferers going off on cruises and flying off to different parts of the World ..How Do You Do it ?? and so many on low dose steroid..I've only got to go 10 minutes up the road on my mobility scooter to the Village Supermarket and i'm wiped out for the rest of the Day.. Since my last flare and you advised me to rest more that is what i have been doing..much to annoyance within the Family..i wish alexgranna13 well and like you PMRpro i have had PMR nearly 13years..and 15mgs was usually my safety dose,getting down to 5mg a few times but not able to now.. This week my pain level has been high again, arms,upper arms .shoulders and going over my shoulder blade ..i struggle to lift a cup or kettle first thing in the morning. 2days ago i put myself back up to17mg steroid to see if it helps my pain and it did.. Last night i had my first Good nights sleep in a long while and less pain..I am asking my Heroes here on the Forum..that's you PMRpro, Celtic..Polkadotcom and Dovelady and anyone else for advice on how long to stay at 17mg before trying to get back to16/05-16/mg ,i should be on 15mg and below but my Body Always wants to shut down when i get there and no-one in my medical team can tell me why ..Not even my Rheumy..i do have stress at the moment due to a very ill Brother who i want to get to see.. He has Alziemers /Dementia and just gone in a Home and found on the floor yesterday..im waiting on News this morning. I know he's being cared for but he's been ill for over a month now and PMR always picks up on any sign of stress..i am thinking of staying at 17 mg for a few days to build up my energy levels.. Such Fun.. Happy Holidays you lucky people..i wish you All Well. Best wshes trish29

  • "i do have stress at the moment due to a very ill Brother who i want to get to see"

    I think you have your answer there. And how long at 17mg? As long as you need to get you through this.

    As I keep saying: if you are a 50% bioavailability person, then perhaps really you are on under 10mg. Would anyone worry about that?

    As for the length of time - about a quarter of people with probable PMR have it for a very long time. Even within that context, I'm VERY lucky, I know that. No-one argues about how much pred I need or for how long and I imagine I'm a 90% bioavailability person. Polkadotcom is more in your direction I think - long time, lots of problems.

    Has DrH checked your adrenal function? It is perfectly possible that you are needing a lot of that pred to function there - especially if you are a 50% bioavailability person.

    If you really feel decent at 17mg - stay there for a holiday. And don't worry about reducing yet. You are under stress, it is winter (and the weather is disgusting). There is no point reducing pred because it may not be good for you only to have a totally rubbish QOL. I wasn't prepared to do it when I needed 10mg - and by my calculations, IF you are 50% person, then that would be about the same as your 17mg.

  • Thank you PMR pro.. im resting again now .Its been touch and Go all Night for my Brother who was rushed in to a Portsmouth Hospital by ambulance last night with blue lights flashing.. He's not out of the woods yet but ive got everything crossed for him . I try not to be available.. No Dr Hughes hasn't done an adrenal function..its always gone wrong lately when i get to that dreaded 14 -14.05 mg.. i will stay as i am for the time being ..Better days around the corner. I don't see Dr Hughes until the beginning of May..Hopefully i will be down to 15mg by then ..I expect you have got nice Sunshine and Warmth in Italy xx

  • It is dark and gungy! We've had precipitation all week - down here it has been rain, further up it has been snow. The temperature has been hovering around freezing and just above all week - a change from -15C overnight! But no sunshine :-(

    Going to Malta next week - OH booked it out of the blue, flying RyanAir from Treviso, about 3 hours drive for us, so dirt cheap. The forecast at present looks OK-ish, mid teens and sun/cloud. The night before we get there it is to rain! We'll see what we get - it will be warmer than here...

  • Hi,PMRpro ..all those different temperatures are not good for the body. I hope you have a lovely time in Malta..a friend of mine lives on Gozo and loves his life there .trishxx

  • OH asked what there was to do for a week in spring - I hope we'll get across to Gozo.

  • Hope you can ..He has had to give up a B/B Business due to ill health..He seems to have settled in to his new flat xxxx

  • Hi Trish,

    "I should be on 15" - who says you should be on 15! Your body is obviously telling you that, at the moment, you need to be on more than 15.

    I know we all have plans to follow and personal targets we want to achieve, but sometimes that's just not possible, and we have to acknowledge that, and temporarily ditch the plan. Never mind what the Rheumy says, or wants, if you can't do it, you can't do it! It seems to me that some don't factor that in - perhaps they don't want to.

    As you said PMR loves stress, so why try and reduce when you know you are under stress.

    I know you've had it for a long time, and I'm very sorry about that, but I guess you're one of those unfortunate people that find it very difficult to reduce the Pred even in little doses.

    How long to stay at 17mg? Trite answer would be until you get stress out of your life and you feel better, but the first part of that statement is obviously not going to happen soon, so realistically I would say a month or so, hopefully by then your brother's situation may have stabilised a bit.

    Assuming you use a slow plan, is it the DSNS? And just 0.5mg a time. Has your Rheumy suggested a Pred sparing drug like MTX - fortunately never had to use it, but some on here have.

    I do wish you well, DL

  • Hello DorsetLady.. everyone Medical wants me to be below 15mg .Yes i decrease Half a mg at a time and ive been on All the steroid Sparing agents and Methotrexate twice..Oral and injections which affected my liver..before my last big flare where i slid out of bed i had got down to 13.05 and thought i was doing ok ..then flare to the legs happened followed by upper body.Ive just had a little nap and my pain level is much improved for the moment.. i know high level steroid is a risk to my bones but my Dexa scan was well approved by Dr Hughes and i got a well done in the letter from him considering the steroid Dosage and the amouunt of years i've been on them. I will continue on 17mg and monitor the situation. Thanks for replying . trish 29

  • I wonder if he will ever consider trying tocilizumab for you? I don't know what I'd feel if asked.

  • Is that the New medication that costs a lot of money? ..i told him and All my Medical team that i would try anything new..i'd even go in to hospital and be a guinea pig as long as the risks aren't more than what they are now. The trouble is because my Medical Practice is mainly run by Locums i have to plod on to May to firstly see Dr Hughes and a previous GP who went on Maternity leave who was very PMR friendly. One things for sure with this condition you never stop learning .trishxx

  • Yup - and initially in the NHS will almost certainly only be for GCA even when it is approved. But there are a couple of "probably PMR" people on another forum (they are not in the UK though) who really struggled with pred and their rheumies switched their dx to "inflammatory arthritis, failed methotrexate" and tried tcz. One says she hasn't felt so well for years! And has lost a load of weight already. In the USA they can get shared funding from the company which helps. Eventually it will be offered at least for a trial for people who have big problems with pred.

  • Thank you PMRpro for All this info . There was a suggestion some time back, of me having inflammatory Arthritis when i was with another Rheumy at Epsom Hospital but Dr Hughes has always confirmed PMR and the latest Blood tests confirmed it again. I know i have read about this new medication and i believe it was mentioned at our Xmas meeting.. i remember shrugging my shoulders and thinking (Oh Well.. something else not meant for me ). Have a wonderful time in Malta.. and its better news on my Brother this morning ..he's responding to new Antibiotics, so we ,his Family have everything crossed .. lol trish29

  • Oh good - hope that continues.

  • Hi Trish,,

    Sorry to hear all that, my - you have been through the mill haven't you. I guess as PMRpro often highlights - the Pred doesn't work on you as well as it does some people. 'Fraid, like those more experienced than me, don't have an answer!

    Take care.

  • Not the sort of record I like to claim but I was first diagnosed with PMR 17 years ago and with GCA 6 years ago. After a flare a couple of years ago I'm now on 9.5mg pred a day, before that I'd never got lower than 4mg. It's become so normal for me that if I didn't have to take tablets in the morning I'd feel something was missing. But I do hate having days like today when, after spending yesterday with my energetic 7 yr old grandson, I have to have a totally inactive day to recover. Do hope all goes well with your reduction and hope you'll be pred free soon.

  • Well done Christine, the tortoise and the hare but more likely to last I hope! 💐

  • Ha yes ive been up and down so many times not sure if im the tortoise or the hare

    Take Care

    Christine

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