Newbie needs some advice

Hello to all,

I am new here but have been reading posts for the last two weeks. Diagnosed with PMR beginning of February with text book blood levels. Lots of hip and thigh pain. Did well with starting dose of 30 and took several day for total relief. Didn't realize till recently how meticulous I would have to be about logging all of this. Asked for a referral to a Rheum Dr but my GP thought he could handle it. I was told that once I did well for a week to go down by 5's to start. Once at 15 I slowed to one a week. I got as low as 12 1/2 but then my Mom was diagnosed with cancer and died within 10 weeks. I was pain free at that but after her death started getting stiff shoulders which I put off to anxiety and ignored. Went up one more pred Friday but left work early to put hot pack on arm pain. Then the next evening I ended up in the E R with a headache. Scared that I might have GCA and didn't want to self medicate the headache. I am now on a 5 day pred pack that started with 60 mgs at the hospital and goes down 10 a day. Do I stop at 20? 10 will most certainly be too low? My sed rate was ok by the way. Is this a flare? Was this creeping up on me and I didn't even realize it? Also during a flare is one more likely to hurt other muscles as now I think I've done something to my back. Thank you for all your help. This disease is quite baffling. I do have some books on way which also will help, I hope.

28 Replies

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  • I am so sorry to hear about your mother's sudden death. No wonder you are not feeling up to par.

    Did you have your eyes checked to see if there was any sign of GCA - a trained eye doctor can examine the back of your eyes and see if there are problems. Others on the forum know a lot more about that so they'll likely be along soon, or tomorrow with expert advice. I'll just say the best thing you can do for yourself right now is to try to slow down, metaphorically take a few deep breaths, and tell yourself that once you are over the stress of the last few months you will begin to feel better. It's perfectly all right to let yourself be sick, try to get some rest and only do gentle exercise for a few days. Can you get some time off work or have your work load adapted so that you are able to give your body some relief until you are more securely on the road to recovery?

    The other thing is, we are all going to tell you that your initial reduction was too early and too fast. Don't worry - most of us have had that experience, you'd think the doctors would have learned by now! But you'll get lots of help here to work towards a plan that will work for you.

    Whatever you do, don't drop to 10 - you were only at 12.5 before weren't you, and that wasn't enough? And if you do have GCA the dose needs to stay high for much longer which is why it's important to get a diagnosis one way or the other.

    All the best. Let us know how you get on.

  • Hi HeronNS, Just flew over your nest on my CDN trip last week, which was fine thankfully with no probs other than the new eTA your bureaucrats have dreamed up. Just wanted to say that my optician who does my specs and eye tests cannot see any difference at all in my GCA blinded retina! Looks normal to him with full blood supply. He says it's the optical nerve connection that's gone and he couldn't tell if I hadn't told him! Maybe I am fortunate in that respect but thought I should point out that there's absolutely no outside evidence of blindness in my case. Watch out for those bugs, they are out early this year in Ontario! Ex P.Eng raymck

  • Ditto. It does need specialist equipment to see optic nerve damage. Still as you say, no obvious outward sign of sight loss, and most people don't realise it when they first meet you, and many long - time aquaintances forget as well.

  • What's an eTA? There is something in the eye which can be detected, I'm not sure what. My ophthalmologist spent a long time peering in my eyes a few months ago, and he was quite definite all was well. He was very well informed about PMR, GCA and prednisone, so I trusted him. I did have elevated ocular pressure however for a while; that's nearly back to normal now.

  • The eTA is your Canadian version (copy) of the American ESTA. A travel authorisation without which one should not contemplate travel by air into the country issuing it. As from March this year when you book a flight it comes up with a directive to apply for an eTA. (OR ELSE!) You could be refused entry at point of landing or even not allowed to board the flight! Scary to the point that I spent 49 dollars CDN on 7 applications, 6 of which failed for various IT reasons, none due to my actions! The online process is a total disaster and I pity anyone with less than my 30 yrs computing knowledge. I could write a long article on this subject which would bore most folk, but if you copy this to your MP maybe he could do something about it, or your Tourism Industry will suffer a needless setback for sure. Gripe over, sorry!

  • Not sure I even understand what an ESTA is either. I suppose the letters stand for something? I last left the country on holiday in late 2014, and all I needed was my passport to travel from Canada to UK and back. Are you saying there is another document we have to get now when travelling across borders? For a number of reasons I've no intention of ever going to the US again, not unless the world changes again (for the better).

    I'm not going to email my MP about this, not having direct experience, but you could write a very grouchy letter to the Globe and Mail!

    theglobeandmail.com/help/co...

    I expect it is an artifact of the now defunct Harper regime, as well as pressure from US which wants to erect a virtual shield over the entire Western hemisphere.

  • Hi Heron, Appreciate your reply but now understand why you've not had the thrill of applying for these Electronic Travel Authorisations. (eTA). If you haven't flown through the USA even as a stopover, then you won't have come across an ESTA. The sour point to me is that if you just do a stopover on the way to Canada they want you to have one. As an ex resident (12yrs) of Canada, now retired to UK. I must possess an eTA to go to my 2nd home which I regard as Canada! You may not need one to come to UK yet, but I can hear those bells ringing, so watch out. All to do with pre-authorisation of visitors and possibly made worse by all this anti-terrorism going on? Anyway the worst part is that it can ONLY be done online, so you never get to speak/write to a human person. All you get is a computer generated response, which ignores any attempt to communicate! Maybe I will try your Globe and Mail link, although I do know a Journalist in Montreal who might be interested in such an article! Cheers and hope you soon feel well enough to fly again. Raymck

  • Not a question of feeling well enough, more a question of whether the pocketbook is fat enough. Lost $18,000 on a "trip of a lifetime" planned in '14 because I broke my leg and we inadvertently were not fully insured.

  • Gosh, I must read the fine-print on my travel policy, after hearing that.

  • Sheer stupidity, actually, although I was disappointed the cruise company did not give us some leeway - two weeks earlier and we could have rebooked. No, it was a failure to read fine print. Hubby said we were covered by our credit card. Well, we were, to a maximum of $1000 each - fine if we'd just been planning to cross the pond, but.... And what I find extraordinary is we must not be the only ones caught by that. More than one friend, upon hearing we'd lost our money, but not the details, says blithely, "Our credit card covers us". So I tell them to check the fine print! Of course there must be a law: most expensive trip we'd ever planned, and ONLY one for which we'd not purchased additional insurance. 😕

  • We got both ours filled in in minutes with no problems at all - there was a warning in the media a couple of months ago that the site was overloaded and it might take a while to get the confirmation but I got mine in about 2 hours, OH's took 2 days. We've been using computers for a few years but nothing like your experience so I think you have exaggerated a bit. Or you had a really bad day!

    In fact, you don't HAVE to have the eTA until the autumn now although it was supposed to start in March - they've waived the need for this tourist season because of the IT problems.

  • Hi, You are right about the moratorium on eTA 'til the "fall" as they say, however, being a purist I thought I would just log on & get mine in a few minutes as I did years ago with the USA's ESTA. No such luck, 7 applications [$49] later and 3 months of frustration! I do not exaggerate, they were convinced I was a permanent resident & no amount of evidence to the contrary would be accepted by the system. Being online only all you can expect is a computer generated reply, usually unrelated to your case-specific enquiry. Several forms are required to make Solemn declarations, Renouncing Residence, etc., etc.

    I could write a book on this & probably will!! They even ask for passport photo's signed on the back, now I ask you???All must be uploaded one at a time because the site won't permait more than 1 at a time, then you wait for a response which can take a week or more, followed by a time-out as you've run over the allowed 10 days. Incredible.

    It was easier to immigrate years ago, which I did & spent a great 12 years in Canada.

    Now it's more difficult to visit as a tourist.

    That's progress, eh?

    raymck

  • What was the problem with your eTA? The man looked at my passport - I asked if he needed the printout and he said no, it's all here, have a nice day...

    I have to say - entering Canada last week was a dream compared with what I'm expecting in 3 weeks time in the USA on the way back to Canada for a holiday!

  • Hi bunnymom,

    Sorry to hear about your Mom, and your problems.

    As Heron says, we're all going to say the initial reduction was too fast, but you did as you were advised so don't blame yourself.

    30mg is quite a high dose for PMR so it should have got control of the inflammation that causes your pains initially, but once it's done that you need to reduce slowly ensuring that the Pred keeps the inflammation under control at all times. That's the difficult part -and everybody finds that!

    The trouble is, if you reduce too quickly, whether that's in time or dosage, the inflammation gets out of control, but it sometimes takes a little while for the symptoms to recur. And the result is, you're not sure at what level, so you have to go back up to a fairly high dose and start again.

    Your Mom's illness and death obviously put you under a lot of stress, and unfortunately GCA PMR seems to thrive on that, so no surprise you've had problems. I lost my husband a couple of years ago, so know what effects bereavement can have.

    You really need to take things steady this time around, as Heron says -can you get some time off work, or at least rearrange your working pattern. You need to get your employers on board, GCA is a serious illness and needs to be treated as such, it's not going to be cured in a matter of weeks, it's a long term visitor, and an unwelcome one at that.

    Once you feel okay again, and not before, you can reduce - but I would reduce by 5mg a time, making sure all is okay, before you drop again. I stayed at each dose for a month, and had bloods tested before reducing each time. Once I got to 20mg dropped by 2.5mg twice to get to 15mg, and after that by 1mg until 7mg - then 0.5mg a time. As you can see that takes some time, but at least YOU are in control. Your GP may want you to do it faster, but it's your body, and you need to listen to it!

    You need to adjust your life to cope with this illness, that doesn't mean turning into a recluse, but you need to learn to take things a bit slower, and give yourself plenty of TLC when you can. You need to be careful with exercise - gentle walking, yoga, Pilates, tai chi are all good, but not too strenuous, the Pred can weaken muscles, so you need to be a mindful of what you do.

    Please let us know how you get on.

  • Thank you for the encouragement . What level then should I stop at? 20? Or do I go to see Dr about GCA being confirmed? It is difficult to articulate all this when I don't really understand. E R doc did look in my eyes but made no comment. My work time does slow now as I am a teacher and out for the next 2 months.

  • Hi again,

    Good to hear you'll get some rest for a while.

    Think you need to see your GP sooner rather than later, hopefully he will have some feedback from the hospital. If he does, then hopefully he will explain things better than the ER doctor. Most people (although not all) usually see a Rheumy if they have GCA, so maybe you should push your GP for a referral.

    In the meanwhile, monitor yourself, might be good idea to keep some notes so that when/if you see Rheumy you can answer his questions. As I said in earlier post, you should only reduce when you have no, or little pain (most people still have some), and in 5mg steps until you get further advice.

    Although most doctors want us to reduce quickly, there are very few lucky patients who can do that. So learn to take notice of what your body tells you. What looks sensible and achievable on paper, isn't always in real life - you just need something to come along and upset things and everything goes to pot! Unfortunately you found that out with your Mom. That's just life, and the experts can't, or don't factor that in!

    Take care.

  • If there is any chance you may have GCA your GP should be referring you to a rheumatologist as an EMERGENCY in the same way he would for a stroke or heart attack. I'm not saying this to scare you but so you can insist to your GP that is what he should do. In fact, I'm surprised the ER didn't tell you that but then your ER isn't the same as the UK version. A 5-day pred pack is no use in GCA (nor PMR if it comes to that). A GP simply doesn't usually have the knowledge or the facilities to deal with GCA - some of the tests are way outside their remit - and the ER doctors aren't too well up either.

    DL and runrig have said the rest.

  • Are you in UK Bunnymom? Still working? How's it going?

    I was a Headteacher for many years so know quite a bit about HR policies and practices under the school's legal duty of care for staff. If you are in need of help in this area, give me a shout. I have PMR so conversant with this debilitating condition and have this might impact on your performance as a teacher. Also PMR only presented itself about two months after my Mum died. So lots in common.

  • Just re read other replies. You are not in Uk but still here in case of impact relating to job.

  • This is a post from a year ago - just in case you hadn't noticed.

  • Yes I did realise and contemplated the value of replying so long after the post was posted. however I concluded that, as sickness procedures in education can go on for years in UK, thought it might be worth a shout.

    In these elongated cases it is very stressful for both School Leaders and the employee who is 'sick'. Ultimately school leaders have a responsibility to the pupils first and foremost, but they also have a duty of care to the employee. Some managers forget the latter and the employee is not adequately supported. Hence the offer of my ear.

    I couldn't even contemplate teaching in the state I am in. ( Recently diagnosed with PMR) Teaching is full on with no respite, whether part time or full time. In UK I would be entitled to six months sick leave at full pay, a few months on half pay then nothing. But what many don't know is their entitlement to a phased return to work after significant absence and an entitlement to negotiate other management controls ie change of duties, responsibilities, hours worked and other management controls

    What if I had a mortgage to pay, kids to feed etc. Plus the 'emotional' blackmail that goes on with these procedures..... From both self and leaders...... Focusing on what about the detriment to the children in your class........

    I would have been even more devastated if I had this condition even just two years ago when I was 'teaching' full time. I am fortunate (?????) PMR has chosen to hit me in my semi retired state when I have greater liberty to make choices and I can work flexibly to accommodate how I am feeling on a particular day.

    In addition teachers often feel they can only teach, yet they have an enormous range of transferable skills that could be transferred to jobs better suited to the trials and tribulations of those suffering with PMR.

    So I guess I thought if Bunnymoms is still out there, facing work related dilemmas, I might be able to help broaden thinking or horizons if need be or simply be an ear so that alternative strategies can be considered if they haven't already.

    So Bunnymoms if you are 'out there' I am here if you want to get in touch. Though don't count on me for any advice re meds, symptoms etc as I am a newbie and am learning all about the condition and medical side from knowledgable others on this site. Brilliant they are too!

  • I only mentioned it in case you were disappointed if she didn't see it - the notification system on this forum is fairly pathetic! Why not send her a private message - then she will see it if she's still here.

  • Good thinking. Will give it a whirl. 👍

  • Thank you Marilyn 1959 for your most thoughtful reply. I saw your post but have had several bad days and couldn't post back quickly. I read almost everything posted most days. I am in the states and am a teacher/admin. For our school districts before and after school/ all day summer programs. I think what's been hardest for me is losing my ability to think. I feel I operate at 50% and I am in charge! I also can't stand the noise and confusion of children now and this work previously has been the joy of my life. I am down to 6 hours a day in August mostly office work. I then will retire in May. I see the wisdom of this as stress will reduce and I don't think reducing my steroids will necessarily be easy going so I will have more liberty to care for myself.

  • Sounds like a plan Bunnymoms, providing the decision is yours and hasn't been forced upon you.

    I really don't know how you have been managing to work in a school environment part time. Front office is even worse than in the classroom! (Even less control of what hits you in the face!)

    Never feel the need for explanation for delay in response. We all know that some days are better than others.

    Take care.

  • I don't know how you do it! One child is more than enough for me - and I am very well compared with most of you! A whole school-full would finish me off!

  • Ha! it has since PMR hence retirement.

  • I wouldn't/couldn't have lasted as long as you have!

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