I started on this journey last July.... I had all the preliminary tests and then saw Consultant Rheumy for the results - he was an arrogant SoB - I went armed with a wealth of questions and some thoughts of my own after his colleague mentioned it could be PMR and he questioned why I bothered to go and see him if I had all the answers! He was not impressed today when I pulled him up on his copy letter to my GP that stated the Prednisolone dosage - 15, 12.5,10mg per month and then reduce TO one mg a month, instead of BY one mg a month. Stopping Pred for 7 days made me very ill and involved the emergency services but am sort of back on track again now...he intimated I should have known I couldn't just stop them.....plus he never said I would be on them for at least a year but his letter should have spelled it out a little better by adding 'reduce by 1mg a month, i.e. to 9mg,8mg,7mg etc for those who didn't have their lateral thinking head on, - then if his secretary made a typo error, it would have been clearer...yes, he blamed his secretary but I reminded him he signed it albeit electronically....no wonder he doesn't like me much ! Ha ! His unsympathetic offerings today at my four months check up were - up the anti to 12.5mg after my blip and start the descent again or reduce completely by 1 mg every week if I want to come off them quickly...no what if's of but's, he couldn't be bothered and made an appointment for Feb with the parting shot '....if you have weaned yourself off them in that time just cancel the appointment ' ! Short and not so sweet and left me none the wiser - apart from my CRP and ESR levels have reduced significantly but my Vit D is very low, requiring a heavy dose for 6 weeks to catch up, followed by a maintenance dose but my GP was already on that. No assistance with the weight gain - almost 2 stone heavier - no help with the insomnia or any other side effects...more or less put up and shut up or get off it....ho hum....what is a girl to do... I so appreciate this forum for a bit of a rant....thanks for listening folks.
P.S - I am going to try a low carb and a mix of fasting days to see if I can get some of the weight under control again - I plan to start on Monday, when I have cleared my 'fridge of not such good choices…will let you know how it goes…xxx
Sorry for all the issues you are enduring. My only caution, predinsone is very hard on an empty stomach. It can be cause for ulcers (re: your fast) - might want to consider eating something small when you take it.
Said by one who battles both esophageal ulcers and tummy ulcers. Not cool. Once you have ulcers you have a whole set of new problems (plus more tests).
Hoping the best for you!
MariGrace
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You have my sympathy - I have come to the conclusion that most Dr’s do not have any idea how to treat this disease - they go by the book. Every patient is different. I have had PMR for nearly five years now - have just had my third relapse. The second was caused by my Doc reducing me by 1mg a week (FAR TOO RAPID) as I had severe muscle weakness and was in a wheelchair. I then developed a urine infection and had to go back on the Pred. It is hard to differentiate between the pain of PMR and having weak muscles (side affect of steroids). I am now back on the flipping things - 10mg - and still have weak muscles and need crutches.
The forum is good to chat on as one can feel very lonely coping with this. One has to listen to one’s body - if you have pain go back to the dose that stopped it and then try reducing again. Apparently you can have a low ESR and still be in pain from the PMR - go by the symptoms. You must reduce SLOWLY - the Adrenal glands must learn to work again.
No wonder you needed a rant! If it were me I would write a letter to him and copy in the hospital manager at the hospital he works for. I would write an unemotional letter expressing my dissatisfaction with the quality of treatment I received, the lack of information about steroid side effects, the disinterest in follow up and especially no support for insomnia and weight gain. I would ask to be referred to an alternative rheumatologist who knows something about Polymyalgia and is up to date with the latest research . You may not have the energy - but your account made me cross . I wish I could do it for you In the meantime know that we know!!
I really think you have cause to make a formal complaint.
Did you take anyone with you to the appointment?. If not then maybe consider taking a witness next time.
Hi missmagwu
Talk about " First do no harm" the rule medical professionals should treat patients by!..this rheumy should be taken to task for what he has recommended to you with regard tapering by 1mg ‘A WEEK’ That will most surely do you harm and then he had the audacity and gave the brainless direction of telling you if you get off pred cancel your next appointment. Please don’t even think about tapering 1mg a week do it by reducing 1mg a month this is far safer and more within proper tapering rules. It beggars belief how this idiot is a rheumatologist…he clearly wasn’t one bit concerned about your welfare. Well we on the forum are. Put in a complaint about him and change him asap…You must have felt deflated when you left there…chin up everyone on the forum are with you and i send hugs and good wishes your way…dump him!!
I really sympathise. It’s so frustrating when you have an unsatisfactory appointment with your rheumy. Did he discuss the reduction with you before you saw it written incorrectly in the letter? I’m on rheumy number three. If you’re really unhappy with your rheumy, and it sounds like you are, it’s worth asking your GP to refer you to another one. I told my GP about my concerns with my rheumy and she was sympathetic and agreed with me. I’ve only had one appointment so far, but she seems thorough, although she’s questioning the PMR/atypical PMR diagnosis… After over two years she’s wondering if I have inflammatory arthritis. Here we go again… Meanwhile I plod on with the prednisolone. I’m lucky that I haven’t had weight gain, but I’ve got a very unattractive moon face. It hasn’t made me look younger; instead, gravity has made the extra fat in my face hang down and it gives me unflattering heavy jowls. Not a great look.
Low carb is the way to go. I’m also trying to reduce the sugar in my diet to see if it helps the inflammation, although personally, I don’t think it makes a lot of difference for me.
I’m glad you’ve got a supportive GP.
Take care and I hope things improve for you.
What an amazingly arrogant guy as you say. I am not sure I understand why you stopped the Pred? Was that due to the letter? If so he should be shot. Just telling you to reduce quickly if you want to come off them is such rubbish, the reason you take them is to suppress pain not to stop taking them because you do not want them, none of us want them. Particularly as there is no alternative. Do you need a rheumy? Could you just go to your GP?
hi missmagwumps…so sorry in being so late to this ‘party’. Still not getting timely notifications on this new format! once again, I Stumbled upon this by accident!
I completely concur with all the others and their responses. your doctor should be ‘hung’, (or at the very least, ashamed of himself!) sadly, given how he treated you, that probably won’t ever happen!
sending you hugs and good thoughts… 
thank you everyone for your replies -i am not receiving email notifications but just thought id look before going to bed…so pleased I did and grateful to see people had responded…was beginning to feeling a little bit dejected… will sleep easier (hopefully) knowing I have such support from you all…bless you all and sleep well! xxx Will let you know what i decide or how i progress…ZZZZZzzzz x
sweet dreams missmagwumps!
I’m so INCREDIBLY frustrated with this new format. Just when I believe everything’s straightened out…Bamm, everything’s all screwed up again!! I too have been feeling somewhat abandoned in as much as I’m not getting hardly any notifications. Then all of a sudden I’ll ‘Stumble’ across something quite by accident…Ughhh, are they ever gonna have this thing FIXED??
In any case, you’re NOT alone…we just need to keep finding one another!!
#headache!
Not sure if this will help or is related to others, but I didn’t get posts for at least 9 days. It took going into the site, my information, answering questions ( am I a medical professional? No.)
After resetting everything, it is working better.
Hope this helps someone.
This is such a valuable tool. It feels like a loss when it isn’t available.
MariGrace
no kidding MariGrace…it DOES feel like a loss when this isn’t working right…ESPECIALLY now when I’m in Such a Funk and just wanting to hear from someone about ANYTHING!
once again, I “Stumbled” across your post…ughhh
ah - good thinking re the fasting - didn’t think about taking Pred with food…I am fairly lax with this and sometimes just take a few spoons full of yoghurt! I dont ever feel like eating first thing in the morning!
I will be more mindful of this in future as dont want to add to my troubles…
Think I will try the low carbs route…
AM having trouble with my keyboard on this new system…it doesnt use normal format of capitals after full stop etc or capitalizing I and i keep typing my whole post in caps - like shouting…lol…it is rather frustrating insn’t it…
THANKS again fir your valuable comments…x
Hi Claire - no he didn’t discuss any dose reduction in consultation prior to his letter - nor did he say i would be on it for maybe a year or more! I may have given it more thought / research - especially as the diagnosis was fairly tenuous - yes my inflammatory markers were high but my symptoms were Atypical of PMR …
I think i should have stayed with the pain relief for a bit longer as the inflammation could have been due to anything really…he jumped at steroids as an easy option for him and gave me a trial dose for 10 days…it significantly reduce my inflammatory markers but then steroids would - so his assumption was PMR !So here i am saddled with steroids…i am tempted to come off them to see if my previous symptoms return as not sure if they did when i stopped them suddenly in error…i just had massive withdrawal that made me ill enough to call 111…cant recall any pain levels just thought i was having a heart attack with an exploding pressure headache…and am still getting massive palpitations…so much so, my GP has ordered a 48 hour heart monitor!
am going to give up typing no w as having dreadful keyboard troubles on this site currently that i am about the thrOW iPAD avross the room…errggggg…x
Good morning. Believe me, I understand the eating and meds quandary. Mine starts early with synthroid. Can have no food for an hour. Then, I eat a banana with the prednisone since my dr. has me on a banana a day for potassium.
Had to create a chart with times and meds, set alarms on my phone to not miss doses. 14 pills a day (more right now, added an antibiotic this week).. oh!!! Very frustrating.
Have gotten a low salt cracker to eat with those that require food. Some say, "no dairy. "
Daily, my goal is to mentally reframe all this and remind myself to be thankful for help, and thankful for doctors that understand. Take care. I so appreciate this list. MariGrace
May I respectfully suggest that fasting days are not a good idea? You are likely to rebound and eat more later. Try altering the diet, as you say after the not so good stuff is out of your house, by eliminating as many “white” carbs as possible, and severely reducing even the healthy carbs from such good foods as sweet potatoes and carrots. Try to retrain your gut microbes by eating things like fermented vegetables, yoghurt, cheeses like Brie. But if you aren’t used to fermented foods make sure to start very slowly, just a scant tablespoon at first, gradually increasing to a full serving over time, no hurry. You may find if you stop feeding the fattening-food-loving microbes your own craving for them will lessen and you will instead begin to prefer foods which are better for you, and less full of unwanted calories.
Yes - his letter said reduce TO 1mg a month instead of BY 1 mg a month - yesterday he blamed the typo on his secretary but he signed the letter electronically so should have looked at it. Personally, I think he should have qualified the dose in the letter with an ,i,e, from 10mg to 9 to 8…I don’t mind people spelling things out to me in idiot fashion…we don’t always have our lateral thinking head on - had he done that I would have realised it was possibly a typo but even so I checked with my doctor and she misunderstood my question and said reduce 1 a month and not one a week - she assumed I realised I wasn’t to stop at all and was just asking if the 1mg reduction was weekly or monthy! So was doomed to fail…ha.
I was sent to the rheumatologist by my GP a she didn’t understand what was going on with my bod…they were stumped after my spine surgery and knee replacement as they had been saying it was probably a sort of referred pain due to those conditions but then didn’t have that crutch anymore as both procedures were a success and reduced their own specific pains after a recovery period…but the body/muscle aches/fatigue and pains were still there…ho hum…x
Words just fail me. We wonder why the most awful mistakes are made in hospitals. It is not lack of medical knowledge it is just sheer ineptitude!