3 week check-up and another question

Well, I saw the doctor this evening for my first check-up since being diagnosed with PMR. I explained that the steroids had performed their usual "miracle" and that virtually all the pain had gone. He immediately said to reduce from the 15mg to 12.5, then after 3 weeks to 10mg then after another 3 weeks to 5mg. When I questioned the speed with which he planned on reducing the dosage, he looked at me as if I were from another planet then repeated his instructions!! I gently told him that I preferred to go slower and just listen to my body and he reluctantly agreed. I then questioned the possibility of osteoporosis and he agreed it could happen but didn't suggest a scan - so I did and he is arranging one. I then said my BP sometimes increased but was sometimes OK and he just said that eryone's BP varied and didn't even check it! I then moved on to the need for regular blood tests and again he agreed it was a good idea and is arranging this for me but hadn't suggested it himself - honestly, it was more like DIY medicine!! I am just so,pleased I found this great forum, otherwise heaven only knows how the next few months could have panned out.

Anyway, there was one last question which I forgot to ask him so I thought I would ask you lovely people. I sometimes feel "spaced out" and my awareness of distances seems all wrong - I keep getting bruises where I keep walking into things. I just wondered whether this could be a side effect of the steroids and, if so, whether it would wear off.

Once, thank you for listening to my problems/questions - it helps so much.

Jan

43 Replies

oldestnewest
  • Hi Jan, I am so glad pred offered the miracle effect. It seems you told your doctor exactly what you should have done. I wonder where he got the idea of going from 10mg to 5mg in three weeks. Did your doctor offer you vit D and calcium supplements to counteract any pred side effects?

  • No, the only thing he "offered" was what I suggested!! But thank you for the advice about supplements - what dosage would you recommend please?

    Jan

  • The prescribed calcium and vitamin D tablets that I have contain 600mg calcium and 400IU vitamin D3 and the dose is 2 each day. I should wait until you've had your scan and then ask for a prescription. You'll have more information about your bone health then. Depending on the result of the scan, I would discuss the need for a vitamin D blood test - mine was low, so I had an 8-week course of a megadose of vitamin D3 to top me up.

    Well done for the way you handled your GP consultation! I had to do the same. My GP said he may see only one patient a year with PMR. So we become the expert in our own treatment - certainly with the help of this forum.

    Best wishes.

  • One patient a year? Of cases of the most common rheumatic disorder in over 60s? Maybe he doesn't look hard enough...

  • I think he worked it out on population / statistics and the fact there are 6 doctors in the practice.... I have no grumbles about the diagnosis which was made immediately I presented with symptoms - the bloods were arranged, but I'm fairly sure he knew what it was likely to be before the results were back. I do have issues with A N Other GP who prescribed the pred and PPI without considering my bone health, so 9 months down the line a DEXA scan revealed I have osteoporosis.....! I now see the senior partner, who has prescribed Risedronate, calcium and vitaminD and who is open to dealing with an 'expert' patient and who thinks your DSNS taper is great and doesn't mind admitting he might see only one patient a year and that I 'taught' him that 1mg pred now comes in coated form.......! I feel lucky to be under his care, but sorry that I had to see Dr 'A N O' for the results of the bloods - the luck of the draw a year ago, in a busy practice.

  • The chances of the pred being the cause of the osteoporosis in 9 months is slim - which does underline the irresponsibility of not doing a dexascan at the same time as handing over the pred! He does sound like someone who is happy in his skin and well worth hanging on to.

  • Hi PMRPro, my doctor only has one other patient with PMR. There are five people altogether at the surgery with PMR. It is a village.

  • Hi Jan, Ideally you should have a vit D blood test to see if you are deficient when you may need a larger amount. I take 800 iu of vit D per day plus calcium. One tablet twice a day. My GP prescribes them. I did just buy some over the counter to start with as I had a rheumie who seemed to think that Vit D and calcium was not important.

    One thing, you should not take vit D and pred at the same time you should leave at least two hours or even longer inbetween. Vit D can affect the absorption of the pred.

  • I'm definitely starting a list of things I need to ask when I next see the doctor - methinks I shall need more than the 10 minutes normally allowed!!

    Jan

  • Hi Jan

    Glad to hear that the steroids are working for you.

    I am sure some of the more experienced and knowledgable will post soon.

    I was diagnosed with PMR in March 2016, started on 30mg with a quick reduction of 30 to 15 to 10 to 5mg, and I had a massive flare (?) in June, suspected/possible GCA and up to 50mg of Pred!

    I believe my GP to be a good guy, as you say not sure why he suggested such a rapid reduction initially, perhaps t works sometimes? I suspect that we are learning about PMR together. He is happy for me to "listen" to my body, and seems to be interested in hearing about slow reduction plans and scans and everything else that I've earned from this forum!

    I'm now down to 5mg but still have that brain fog, although its not as bad as when I was on higher doses.

    With regards to my skin, very quicky after starting the pred my skin became fragile (if thats the right word), the dogs only have to look at me and I bruise, and if they scratch me the skin breaks ever so easily. This seems to have improved a little as the Pred has reduced.

    I've been taking Vit D, got them myself, and have recently started to follow a mainly plant based whole food type diet.

    Again, there are some very well informed people on this forum, and I'm sure they will be along soon!

    Chris

  • Hi Janann25,

    Sorry to hear you had a difficult Drs appt!

    Just to say, I felt spaced out and had bruises when I first started pred. Still do sometimes. (diagnosed 2 years ago, started on 60mg now down to 5.5mg)

    Also, just a heads up really, Piglet mentioned vit D and calcium supplements, I think almost all will agree they are a essential to some as is alendronic acid. I'm no expert though.

    I'm not trying to scare you, just alert you, I fractured my spine just by coughing. I have osteoporosis and my bones have weakened rapidly with the help of pred. The consultants have recommended I have injections twice a year now instead of alendronic acid.

    I do know that some do not have osteoporosis even though they have been on pred for several years.

    Kind regards

    Marion

  • Talk about the intelligent patient, well done!

    As for the bruises, yes it is a side effect. I do blunder into misjudged doorways, maybe that is too. My balance is a bit off. As my dose reduces the bruising has stopped. Side effects are a bit like one of those tennis machines that spew out balls, no sooner have you batted one away another comes along. I am battling sleeping sickness on 8 mgs like a puppy running round in circles then snoozing. I am on a weekly dose ( massive) of vit D having been found to be seriously deficient.( prescribed) have the blood test for your levels.

  • Well, the only reason I was an "intelligent patient " was because of the knowledge I've gained from this forum! I know I keep repeating myself but I honestly don't know how I would have coped without the people on here 😍

    Jan

  • More likely the PMR - some people do mention it and I certainly noticed it. In my case it definitely was the PMR and not the pred - I wasn't on it. I wasn't happy overtaking on narrow motorway when the inside lane was full of lorries, I felt as if there wasn't room although I've been overtaking on that bit of motorway for the last 40 years with the concrete central barrier on one side and lorries on the other! I broke glasses, something I had never done, and it was as if I didn't quite know where the table was or knocked them over.

  • 'Slow to Flow.. and hold back'. A good / safe technique when driving in whatever conditions - as well as coping with the combined effects of PMR and steroid tapering! ;-)

  • Hi Janann25,

    Good job someone was on the ball!

    Spaced out feelings quite common, not sure whether Pred or PMR or combination of both.

    Bruising also very common, tiny capillaries fragile along with skin, some people also get bloodshot eyes for no apparent reason, so don't panic if that happen, should go within a few days.

    Arnica cream/gel helps bruising, and use DoubleBase gel for skin. Also be careful of sunshine, your skin is less pliant and as said more fragile.

    As others have said you should be on Calcium & VitD tablets - prescribed, don't buy yourself.

  • Hi Janann,

    Like you, I was very glad to find this forum in the early days! Your GP sounds like he can be led, but seems quite clueless and worse than that not really bothered. Never mind supplements etc - have you thought about a change of doctor? I think I'd be tempted!

    Others have mentioned Vit D and calcium supplements - my GP prescribed them at the same time she started me on pred, to help protect my bones. Another supplement I believe to be very important is Vitamin K2 - put simply, it helps to distribute the calcium to the right places in the body. I buy it over the counter. I also take magnesium - said to have lots of benefits, plenty of info on internet.

    As to feeling spaced out, I also intermittently feel a bit "woozy" and am clumsier than usual. This seems to have eased a bit as I've reduced (I'm now on 11mg, down from 15mg). Not sure if it's down to the pmr, the pred, or the extreme fatigue I experience.

    Good luck on the journey!

  • I love your comment about changing my doctor!! Unfortunately, our surgery is so short of permanent doctors, the place is staffed with locums. . So, "my doctor" is a different person each time I have an appointment - definitely doesn't instilll confidence!!

    Jan

  • Though locums have come up trumps on several occasions - recognising things the usual GP looked at through the specs of preconceptions!

  • Yes, it was a lady locum who first suspected PMR and organised the blood test. Unfortunately, she's now moved on as well 😟

    Jan

  • Not fair is it!

  • Hi Jan, sounds like my surgery. I have been there and there were only locums no permanents at all one time. It was chaos of course! The turnover of permanent staff is unbelievable.

  • Not so permanent then...

  • The spaciness and dizziness and spacial perspectives sounds familiar to me. I developed anemia with my diagnosis of PMR - or perhaps the two were running neck-in-neck all along. Not sure. Have you had your iron checked recently? Or your platelets? My anemia is under control now and I don't have these symptoms anymore. Just a thought.....

  • Thank you for the advice about iron. I had a blood test last week - when I had a BIG bruise develop all around one eye - and was told all results were OK. I don't know, though, whether it included checking for iron. I'm due another test in a few weeks so I'll mention it then. Thank you.

    Jan

  • One more thing about iron deficiency.......I am good now as far as my ferritin levels. I took iron pills for a while, and this helped. But my actual problem was in my bone-marrow and my platelets. I saw a hematologist because I wasn't satisfied with the way I was feeling - even after I took the iron supplements as recommended by my PCP. If you are not satisfied with the answers you are getting, persue the specialist you think you need to see. Bruising could be a platelet problem, but I am not a doctor. Just trying to let you know that we need to be our own best advocates! Keep us posted!

  • Thanks again - good advice.

    Jan

  • Hi Jan, I always ask for a printout of my blood test results and anything else relevant. It really helps I find, so I can check how things are going. I normally just have ESR and CRP checked but occassionally have a full blood count and U and E, thyroid and glucose plus some others ad hoc.

  • More good advice - thank you

    Jan

  • When you get your calcium be aware that it shouldn't be taken at same time as pred - amazing how many of us aren't told this at first - and please consider getting Vitamin K2 as it will make sure your calcium actually gets into the bones (I don't live in UK but I don't suppose it is covered by NHS). Also, don't take more than 400-500 mg calcium at one time as the body can't absorb larger doses. So pred for breakfast, calcium for lunch and supper, or possibly bedtime.

  • Good for you for being your own best advocate.

  • Only a hemotologist will do the in-depth tests needed to get to the root of a certain blood problem. I was so fatigued and my PCP was just doing the normal blood work needed for iron deficiency. Hence - me taking iron supplements that really weren't helping as much as I needed help. The hemotologist ran the tests needed to see how my bone marrow was handling my RBC count and my platelet counts. He even did a bone marrow test. (You may not need that!) But I was happy he was being so thorough and I had no problems with it at all. With PMR there are sometimes accompanying conditions. The bruising you talked about warrants further examination. I am feeling better now that I am receiving proper treatment for my accompanying condition to PMR. And not everyone will have another complication with PMR. (I don't want to mislead anyone on this.)

  • Greetings Jan

    Well, your experience with your GP seems fairly common.

    My conclusion..? As is often said here, many hard-pressed GPs just don't seem to be up to speed with the complexities of how PMR works and / or the subtleties of tapering methods. It seems that many just follow a standard script (which can be way-off the mark in a patient's individual context - Mmmm!), and err on the side of getting a patient off-of the steroids asap without sufficient knowledge of the risk / benefit equation - again, in context.

    That said, it's good that your GP listened / responded to your gentle 'push' for a revised tapering plan / tests etc. Conclusion (again..)? It's worth 'pushing back' with some GPs' recommendations, and it helps to do so with reliable knowledge and facts about this condition and the management process - especially from a reputable forum like this.

    As for feeling 'spaced out' etc, I can relate when on the 'magic' steroids - but I'd better leave it to the experts to answer this one!

    Either way, you're in good company here and I'm sure you'll get some speedy and helpful responses.

    Try to keep smiling in the meantime and not worry unduly! ;-)

    MB :-)

  • I certainly wouldn't have had enough information to "question" my doctor had it not been for this forum - and for that I will always be grateful. I also gained so much more information from Kate Gilbert's book, PMR and GCA - a survival guide. So much useful information in one publication. I just hope that I in turn will be able to help someone else in the future.

  • I just love what you called it

    DIY Medicine

  • Welcome Janann25

    Reading of your experiences with your GP have reminded me that the reduction rate suggested was exactly what my own doctor talked about at the start of my treatment in January this year so perhaps it was an NHS guideline!

    Like yourself I have taken advice from this excellent forum and Kate's book to manage my own treatment and tapering plan. I can certainly do without the stress of failing to achieve my GP's ambitious steroid reduction alongside the pain, fatigue and lifestyle changes we have to live with after diagnosis of PMR.

    Talking of DIY medecine, I was refused a referral to the dietician for some advice on a healthy PMR diet on the grounds that I have a healthy weight and BMI, but after diagnosis of very high cholesterol, I wrote to the department myself highlighting the health implications of the two conditions and hey-Ho, have been invited to contact the department for an appointment.

    And I would not have done that without the advice and support of this forum and the knowledge I have gained from it.

    Always grateful, Chrissie

  • Thank you for the welcome - so pleased to be able to "meet" you all! Yes, I'm sure it was the NHS guidelines to which he referred as he was reading it all from his computer screen. He was quite surprised when I questioned the instructions - I shall probably have a black mark against my name now!!

    Jan

  • I can't read the NICE guidelines as they are only available in the UK - but I'll lay odds that was what they look at. However - I DO know that it says "The magnitude and speed of dose reduction in corticosteroid withdrawal should be determined on a case-by-case basis, taking into consideration the underlying disease..."

    One Health Trust says that reductions down to the physiological dose of 7.5mg can be fast. Wales says something much the same here:

    wales.nhs.uk/sites3/Documen...

    (sorry everyone, but technically we are "elderly")

    BUT they also say that you have to take the nature of the illness into account.

    When doctors tell patients to reduce as Janann was it is blatantly obvious they have little or no idea what PMR is: a CHRONIC illness that requires treatment for at least 2 years and often much longer. Even reducing the way he wanted, she would have already been on above the physiological dose for 6 weeks - adrenal suppression would have already occurred and care required. The Wales document recommends 1mg at a time below 10mg - and that is what you find in almost all PMR guidelines. If the dose you require is 5mg or below then speedy reduction will probably work - but very few people are able to manage on 5mg in the first 6-12 months of PMR.

    However - above all they need to be aware that PMR doesn't last a couple of months, it will last at least a couple of years and for half of us will last up to 4 to 6 years. One third of patients in one study were found to still need pred after 6 years. And if you mess about reducing the pred dose like that - it will last longer because you will induce flares and have to start over again!

  • I'm not sure whether you know the answer to this one but, do you think the size of the person should be taken into account? I ask because I'm only 5 feet tall and weigh in at 8 stone and 4 pounds and there are people weighing more more than me being prescribed the same dosage - just a thought.

    Jan

  • It doesn't really matter - they start with a dose that will work for almost everybody to clear out the existing inflammation fairly quickly and then taper the dose slowly to find the lowest dose that keeps your symptoms at the same level as that starting dose - that is your guideline. To some extent you need a highish starting dose to see how much improvement you can achieve.

    This process is called titration of the dose and is something that is done with several drugs where the amount absorbed varies a lot depending on the person. Some people only absorb 50% of the dose, others as much as 90% - and that is something you don't know in advance.

    An Italian study some years ago found that 75% of patients will respond well to a starting dose of 12.5mg within a month - and small dainty ladies responded faster than big strapping men. But if you take more - you will respond faster and frankly - I wouldn't have thought anyone minded about that! If it is significantly too much you will be able to reduce easily at first and get to a lower dose quickly.

  • Thank you so much for that - I really do appreciate the time you spend in sharing your knowledge with me.

    Jan

  • Thank you so much for the link, PMRPro. As I am in Wales this information has been very helpful.

    At 60 years of age I do not feel elderly but I have days when PMR stops me in my tracks.

    I have failed to go below 11mg this month and wondered whether dividing the dose to 5mg at night and 6mg in the morning is no longer keeping the pain under control. The shoulder, jaw and face pain are a daily cause for concern, maybe I am still attempting to do too much.

    It's always comforting to know the are others out there in the same boat, not drowning but not waving!

  • Go back to where you were comfortable, wait a month or so and then try again - carefully. It doesn't mean you won't get there - just not yet.

You may also like...