Am just wondering if my understanding is right (There has to be a first time!
Am still awaiting my first app with Rheumy but reasonably sure I do have PMR.
Suspect I have had it for sometime, various issues over last 18 months. Had a massive flair in Feb, really severe 24/7 pain in neck, shoulders, lower back, hips and thighs. I could hardly walk, agony to turn over in bed, all-in-all a very unhappy camper!
Visited GP 3 times in 3 weeks as I had no idea what was going on, worried I would end up in a wheelchair. I was started on 15mg of Pred on a Tues, by Thurs felt like a new man. I naively thought that was that really and I could go back to getting on with my life. I went on holiday for 2 weeks in April, did loads of walking and apart from feeling a bit tired every 2-3 days all seemed to feel fine. Once I got home however things didn't go quite to plan
Once I had been home for 2 days I just felt really ill. Dragged myself into work but I don't really know how. My ability to think just stopped, very strange. The complete and utter exhaustion were by far the worse thing. My shoulders, thighs and sometimes hips just ache all of the time. This isn't the same as the initial debilitating pain but it is constant. I have been signed off work for a month, spending lots of time sitting in my chair, some days that feels pretty exhausting too!
I guess my question is; once the initial euphoria of the Pred wears off do you then move into this twilight zone where you ache and feel exhausted all or at least most of the time? My GP is getting very frustrated she can't understand why I responded so well to the Pred but am now feeling like this (Feel a bit frustrated myself!) Am due to go back to work Friday, really don't know how. Am visiting GP again Wed, hoping for some of your experiences I can share. I suspect like me, she assumed once the Pred kicked in it would be a joyous and smooth path to recovery.
Thank you very much to everybody for your kind support on "the journey"
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Mike1964
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I would suspect that the overdoing it of the holiday took time to kick back - and it is taking you time to get over it. That is what happens - your muscles are intolerant of acute exercise, you develop DOMS, delayed onset muscle soreness, that is out of proportion to what you expect for what you did and then it takes a long time for the muscle damage to heal because of the autoimmune part of the illness.
Have you tried a higher dose of pred? Other pain relief?
"she assumed once the Pred kicked in it would be a joyous and smooth path to recovery" - if only! This isn't a "recovery" in the usual sense of using steroids - this isn't an illness where you get rid of the inflammation and that is it. Your body continues to produce inflammatory substances as a result of the autoimmune bit that underlies the symptoms we call PMR - and that goes on, and on, and on... For about 2 years as a minimum but the median duration of PMR is 5.9 years:
As ever, thank you Pro. I'm guessing my question again is; should/do people ache all of the time? it's certainly not the initial terrible pain I had but it is rather draining day in day out. It is the same muscle groups, shoulders/tops of arms, sometimes neck, thighs and sometimes hips?
If you are on the right dose you should have at least 70% less symptoms globally within a few days - I achieved that in under 6 hours, after a couple of weeks I only had bursitis pain in hips and tendonitis in feet and hands. That took a few months to go. Some people are never totally pain-free but you should be able to function. I ached all the time with PMR, I certainly didn't once I was on pred but I did still have some of the myofascial pain syndrome stuff.
I really think you are not on a high enough dose - PMR can flare for all sorts of reasons and you did give it some cause. Now you need more to get back to where you were. It may be you won't need a higher dose for long - you have to clear out the existing built up inflammation to get to a low state of pain.
Again, thank you Pro. I'm very reluctant to discuss this with my GP, I certainly believe she has washed her hands of me. Perhaps to try 20mg for a week to see how it goes? would you then drop back to 15 after the week if there was a big improvement or try reducing 1mg a week? I realise you can't give me specific medical advice but I would love to hear your general guidance.
If you feel your GP has washed her hands of you then you really need to discuss it with her and make your perception clear and then see someone else who WILL listen and care for you. Speaking to the practice manager may be the way to go if you are worried about speaking to her directly. If you can, take someone with you who is aware of the situation and how unwell you are.
There is no reason why you can't try a bit more for a few days and see if it helps if you have enough tablets - you can take 20mg for up to a week and drop back to 15mg if it doesn't help with no problem. But this is something to do in tandem with a doctor - whether it is your current GP or someone else in the practice.
Thank you Pro. I feel quite badly let down by my GP, she's pleasant enough to talk too but a terrible listener, she just ends up talking over you. Once this Rheumy referral arrives I will switch surgeries. I took your suggestion and Googled Dr Sam, I'm certainly feeling a lot more confident about going back to the DGH now.
Then what is she doing as a doctor - and above all as a GP? If you can't listen then you can't know what the patient is telling you. If she doesn't want to listen to her patients maybe she should have been a vet! Their patients don't talk...
I read somewhere that many physicians stop listening to what you are saying after 17 seconds ..so if you don't get the important stuff into the first 17 seconds you won't be heard....
Lol, I suppose the other way of looking at it is; If the average goldfish has a 3 second memory, your average GP is on a par with 6 goldfish! For any current or retired GP's this is strictly tongue in check!
Flipping heck, this gets worse by the second, I'm now down to 2 goldfish. Do you suggest I wear a mermaid costume for my appointment tomorrow? I've got to keep her attention somehow!
Unfortunately Mike, it will sound very normal to lots of people! After the initial euphoria comes the down to earth reality.
As PMRpros says you probably unwittingly did too much on holiday, you aren’t the first, and you certainly won’t be the last - and now it’s caught up with you!
But you may also have other things going on as well, and you probably won’t find that out until you see a Rheumy!
Don’t think there’s much more to add really - it’s just a matter of time, and learning to juggle life, tablets and work. Sorry!
Thank you Dorset. Hopefully the Rheumy referral is now imminent. I had decided to do a private referral to Chertsey but when this fatigue hit I just didn't have the energy to do anything about it (Sad but I was genuinely concerned that I wouldn't be able to walk from the car park to the clinic) Am just waiting to see if the DGH will pick me up as an urgent referral.
Oh dear Mike! What a blow for you - but a familiar story. I am totally with the other replies on this. But also wondering.... if you are a big fella, say over 70kg, 15mg might not be quite enough at this stage. Discuss with the rheumatoid. And try to come to terms with the fact that you have a chronic illness, that's rumbling away underthe medication. Good wishes.
Blimey Kate, I think last time I checked one of my legs was more than 70KG Do they do 100mg tablets?
HA! "... a joyous and smooth path to recovery." Not!!
I have both GCA & PMR... but had had PMR for 18+ months and didn't know it. Had all the aches and pains, flu like symptoms, fatigue, general feeling of malaise, etc. but not debilitating or incapacitating. GP said it was all normal and attributed to my being a woman "of a certain age!" I was like 62!!!!
It wasn't until the GCA hit ad I started Pred that I thought I would die! Between the symptoms of the diseases, the side effects of being on high dose steroids, and then the withdrawal from the steroids, I really did think I would die.
I worked only part time and volunteered part time and had to give up both, as I just could not (and still cannot ) make that commitment... I have some GREAT days, but I have other days where getting off the couch is an impossible effort. And many times I have not done anything (like over-extending myself) to cause it! There is no rhyme or reason.
This blog post was written 4 months after I was diagnosed with GCA/PMR and prescribed Pred... >>>>>rantingsofamadwomanblog.com...
As you can see I was optimistic and quite positive when I wrote this... not sure my slant on things would be the same today!!! I vacillate between being upbeat and positive and cursing the wretched diseases back to hell from wench they came! : )
Thank you for this. I'm just waiting to see if the DGH will pick me up for an urgent Rheumy app, If not I will do a private one to your lady at Brighton. Hopefully I will feel a bit better or at least more settled with a proper diagnosis. Please keep ranting, it certainly makes me smile.
Hi Mike1964, apologies, Pred Head and old age, have surely set in! I have shared ALL of all that with you before, I'm sure! Doh! 😳 I can't remember who I've told what to.... hopefully I'm consistent and say the same freakin thing! I remember you asking about Kelsey Jordan. Good luck, as I hope you get to see someone soon! I can't stop ranting... its in my blood! 😉
Hi Mike. My guess is that the modest start dose of 15 mgs is not quite hacking it anymore. Discuss going up to 20 mgs with your GP or even 25. You should really be feeling better than this. I expect the experts will be advising something similar.
Thank you for this. I guess you've answered my question, I just didn't know if I was always going to ache/feel very fatigued for the next 18-36 months. My GP is pretty hissy with me for staying on 15mg, I did reduce to 12.5 at her request but started having a lot of pain, my back was going into spasms, not nice. I went back to 15 and have reduced to 13.5 the last 10 days.
I looked back at some of your earlier posts and am feeling a bit confused. What dose are you on now, and for how long. I get the impression that you've been kind of messed around. At one stage your doctor-prescribed taper was from 15 to 10mg. Didn't read all the other posts to find out what happened, but that initial drop was alarming to say the least. I suspect your problems lie in the fact that you haven't been getting enough pred to deal properly with the inflammation. Once the inflammation is cleared out, and not before, then it's time to taper. And what about that suggestion your problem may be myasthenia gravis although I don't think you ever said you had the symptoms of it, just a questionable blood test?
Lol, to be honest Heron I was trying to spare everyone the pain of the Myasthenia Gravis idea. After my GP sitting me down to tell me she was really worried about me as Anti Acetylcholine receptor antibodies had shown up on earlier blood tests (That she obviously hadn't checked as I later asked for copies and it clearly showed that I should speak to her regarding the results) apparently these can indicate MG? (These were her words) At my next appointment last week I made mention of this, she gave me a funny look and said "Michael you don't have MG what are you talking about" I then reminded her of the previous conversation, I had never heard of MG I fail to see how I could make that up!!!! she had completely forgotten about it, after looking back over my notes she then said she would redo the blood tests. I had these done last Thursday, I have another appointment on Wednesday as I need to discuss going back to work, I will ask for the results then.
Regarding the Pred; I started on 15, was told to drop to 12.5 after 6 weeks then drop again to 10. In the end I did drop to 12.5 and soldiered on for about 3 weeks but felt so ill after getting back from holiday I went back to 15. I have since reduced to 13.5. My aches don't really feel any worse on 13.5, its just feeling so tired/exhausted and really achy all the time is rapidly starting to lose its appeal!
Hi Mike, I was diagnosed in August last year. Felt like you and had to go down stairs on my backside in the morning... really felt dreadful. Started on 25mg and within hours I felt like Spideman. Fantastic. I’ve only ever tapered to 12.5mg, before feeling pretty bad again. Currently on 15mg and feel ok, but clearly it’s quite a high dose to be on for so long. GP referred me to Rheumy a month ago. Appt is beginning of July. Gut feel is that I tapered too early. Blood tests have been up and down, but chest infections over winter were thought to be distorting results. I’m 60 by the way, the oldest guy on the grid in my car racing series, so pretty much feeling young and healthy. Just want to tapper down to a lower does now. Best wishes. Trev.
Hi Trevor. Thanks for this, Lol I can certainly sympathise with the getting down stairs bit, I was very conscious of walking like Frankenstein’s monster, I also had to do it walking sideways, as I’m sure you can imagine it was quite a picture, even with the chronic pain the obserdity of it occasionally made me smile. Have a look at PMPro original reply, she copied a great link to an article about the joys of being on Pred, very interesting reading. Good luck with it all.
The article is reassuring. just to give you some notes to compare, which I hope are helpful.
I had to increase my Pred dose to 30mg twice during the first two months of treatment, as I had flare ups. This year I've had ups and downs but the last four weeks have been the best period since the initial Spiderman Euphoria!
ESR rose to 54mm in March and decreased to 35mm in April. Now down to 18mm, the lowest since treatment and commensurate with symptoms. CRP, which was 20mg/l, is stable and good at 4mg/l. May try to go down to 12.5mg again next week and see how I get on. I've kept notes for the rheumatologist. I feel I know what's going on with my symptoms and hope that the rheumatologist asked me to manage my own tapering, keeping notes along the way.
That's very interesting, thank you. I'm seeing my GP Wednesday and will try to discuss with her, sadly she seems to have a very short attention span and doesn't like to listen for long! I feel like I've hit snags all along, I don't have raised markers (Apparently up to 20% of people don't, I also read an American article that said this is more common in men) because of this and my age (Even though I now sadly feel closer to 80 than my actual 53) I just don't feel I'm being taken seriously. Am hoping when this long awaited Rheumy referral finally arrives things will progress. Oh well, at least I've got England's 3 matches at the world cup to look forward too until we're unluckily knocked out by Malta
It is a false euphoria initially. I felt just like normal after my first shot of Prednisone, but your lifestyle does change. You did too much activity, so now your body needs to rest and recover. Remember that our conditions are not cured, but symptoms are managed. It took me a while to realize that a little activity must be balanced with rest. Mind and body rest. Everyone is different, but my symptoms fluctuate between extreme tiredness and somewhat tired. I rarely feel truly rested. I have GCA, PMR, Fibro. I have learned over two years that I must be flexible and listen to my body. I empathize with you because doctors talk about inflammation markers, but not how drastically your lifestyle will change. I used to swim 1/2- 3/4 miles 4 times a week. Now I can gently walk from 20-30 minutes and only once or twice a week. If I do too much I feel awful. Be gentle and listen to your body. You will need time to find your new normal. Take care of yourself, and I hope you find peace soon.
Thank you for this Dream. Yes I’m guessing false euphoria was the sad realisation I was reluctantly coming too. Is it to late to change my mind and not have this? Golly you certainly seem to have your hands full, I do appreciate your wisdom, thank you.
Hi Mike,the other posts have said it all,l hope you get some answers soon from your GP,but l definitely think you did too much while on holiday,especially all the walking.
Hi Grants. To be honest I had a fantastic holiday. Was it worth all the pain and discomfort now? boy that's a toughie. In some ways I've always been a "You might as well be hung for a sheep as for a lamb kind of guy" (Possibly the reason why I've had so many self-inflicted problems in life!) I will learn from this, but sadly learning my lesson easily has never been a particular strong point
i really do appreciate all of the kindness I've received whilst on this site, and dare I say that other peoples experiences are resonating with me and I can see the wisdom in it. Golly whatever next, at this rate I may even move onto some sort of maturity myself!
I moved to Newcastle last September the only person I know is my daughter she is the reason I moved from Kent. I thought I wouldn’t be lonely as I am or was a decent bowler so I consoled myself I would make new friends by joining a b owls club.......wrong.......suddenly my legs don’t work anymore and I know for sure I could not walk up and down the green let alone bowl my woods as well. So we mustn’t take anything for granted must we. I am back on 5 mg pred so am not in pain as such but walking 🚶♀️ is a problem and stairs are hilarious with kiddy steps. So I am missing my friends in Kent but too late now isn’t it as I have bought a house and cannot stand the thought of packing up again as I have reached the ripe old age of 80 although still feel 50in my head. Thank you all moan over.
The question was for Perkey really! But if it prodded you too - good!
I live right up in the north and halfway up a mountain - so yes, suitably scenic! The nearest large city is Innsbruck in Austria, so that far north! And we speak German here.
Wow, I would agree, suitably scenic indeed! Sadly these days I'm struggling to keep up with English, not sure I would cope too well with having to navigate German and Italian as well. I do have an Italian client who speaks no English, whilst we wait for his Granddaughter who translates I do my best to dazzle him with my Italian from Google translates, sadly despite my enthusiasm and best Marlon Brando voice he hasn't a clue what I'm on about (A bit like my wife and kids really!)
I'm really sorry to hear this. Loneliness is a terrible thing, you must have a lot of time to sit and think. Could you join a local club with just a social membership for now? at least that way you could get to know some people and when things improve you will be all set to bowl once more. Have you heard of Silverline? they are a telephone service for the elderly (Sorry that must sound terrible but it's what they market themselves as) Their contact number is 0800 4 70 80 90 please give them a ring and have a chat they have lots of ideas about befriending schemes. Or just Google Silverline and have a read-up.
Hi Perkey, I have always heard that if you move one of the best ways of making new friends is to go to church. That is if you have a reasonably active one with a half decent congregation. When we are young we have other parents to meet up with, but as you grow older it is much more difficult. University of the Third Age is a good way of meeting up with people. Also dinner groups and book groups.
Quite true. I have moved a lot, and the first thing I do is find a church. Even if you don't attend church, there are always activities at the various churches. I have been a befriender for 7 years. You could be 1 yourself at 80. I am 71.Read notice-boards. There's always something. There are lunch clubs where transport can be arranged.I go to a monthly dinner club, at 1 of our good restaurants, for people, of an age, mainly women, who can't get out on a Sat night. Have made lovely friends there.I have the gift of the gab. I talk for Africa and England. I talk to folk at bus-stops/surgery/hospital, anywhere. I did join a WI, but found it 'clickey'.Library has lots of notices of meetings. I do hope you find friends and enjoy your 'new life' soon. Pity I don't live near you. wishing you well.
Thank you Mike and all of you I will contact the people you suggest will let you know outcome. Don’t laugh but I also find Jordy llanguage hard to understand I was better at understanding Spanish! But I must add the people are very good and slow down their speech for the Southern softie!
I now know how to spell Geordy. They probably think my accent is silly 😛. I think I will avoid Sunderland for a while then it’s not far from North Shields
Try not to call someone from Sunderland a Geordy. They are maccams. All very touchy about it. Like calling me, a white rose woman a Lancastrian.😉
It does get easier to understand the accent. Try listening to a local talk radio station so you can let the accent wash over you instead of being under pressure to understand and respond. Also get a local a to z or local map so you can see where people are from that might be on the radio. Local regional news might help. Unfortunately Geordie Shore, the only current TV program set in the north east that I have heard if, is, shall we say, an acquired taste for the 20somethings who are interested in drinking and picking up one night stands.
When I finished work I often went and sat in the local shopping mall and people watched. It is difficult to do that if you are having a flare or just don't feel right. I hope you feel up to doing some people watching soon.🌻
Don't know about from the north, but from the south there is not a single indication even that you have to pay until you have turned onto the approach to the plaza. We were using the sat nav, set to "No tolls" and it still took us to the tunnel. And OH didn't have £1.70 so they got 30p they shouldn't have. Bet they make a fortune like that...
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