hello, everyone! just thought I'd do more than skulk and read the the read mees for a moment, as I'm likely to be asking for help at some point and it might be nice to have said hello already.
the gp seemed very excited when i said i couldn't raise my arms and both hips were giving me new grief, neither being relieved by the pain medication i already took (tramadol, codeine, aspirin, topiramate) nor by the nortriptyline that altho got me some sleep for the first time in months didn't seem to affect the nico receptor... things. and then even the sleep bonus stopped as i adjusted. he said he was optimistic because he had an idea what it might be, which doesn't always happen with me. one blood test with a high crp result. one month wait to see if it stayed high. one week after that was confirmed when the practice said 'now we'll wait another one or two months to see if it continues' fir me to write in about sixty days of anguish every time i wake up to realize i needed to urge myself to fight again, to not stop. to maybe not weep, or to explain myself while weeping (one husband, one son, one cat). to not feel like a useless lump. a useless expensive waiting lump. had just started some excellent my- sized physio at disability north, where in the bad day, the bike starts your muscles moving fir you. but even getting there was beyond me at this point. and to remind them that i was already ten months down the shoulder and hip pain path, since i usually wait a month or two for things i notice to fizzle away because i do, and then we upped what i was taking already, then we titrated the nortriptyline up plus two, then two rounds of blood tests and results. i said if 'we' are waiting anymore, i want pain hibernation, full blast pain for, because I've used up every tool in the box to get through and I'm tired and need a rest. dope me till the meta-doc is ready to see me. so fed up. and extremely not my way. i also said, whatever your test result, I STILL HURT . so very extremely not my way. turns out they auto sent me a message after the blood test without checking. it wasn't my usual gp, and there was no case reading. sooo, they're going to check some of their protocol for automatic admin procedures because they can see how this 'might have been distressing'. i bit my tongue. i hate that kind of apology. finally got to talk to my tenacious but terrified gp who said he thinks it's pmr, he prescribed corticosteroids for five days. and then we had a phone call two days after they ended. three days in, i could get my coat on myself which was a delight! the morning of the phone call tho, after two nights with no corticoids, i was crying again. he apologized and said he wasn't allowed to prescribe more than five days at a time without measures in place. so he represcribed, added a ppi, and i have a f2f follow u up on Thursday with more blood test and planning. whether i need to go to rheum again to check other things, back to endo for hypothyroid vs corticoids, etc. cautiously hopeful.
sorry this is so long. i haven't had the best intro to pmr, and the breath let out is fresh, but having something somewhat diagnosed in a morass of uctd and comorbidity is novel. and i appreciate knowing there are people willing to talk about things with common understanding. i promise to be less verbose 🤭. and i how i can be of help too.
hello, everyone!
cath tyler
Written by
hazmatrec
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I don’t really understand why your doctors are so reticent in diagnosing you, unless it’s as you say you have other issues, I see you are on a couple of other forums.
It might help if you stated on your profile what country you are in, that sometimes has a bearing on procedures.
ah! i was trying to update my settings, as i think last time i had was about five years ago, very closed and scared. I'm in Newcastle upon Tyne, England. it may be for the comorbidity. it may be that fifteen years ago there was a lot of crossing off of diagnosis. drC has said that pmr's highly likely just based on the fast (two day!) easing of the specific symptoms (both hips, both shoulders), the recurrence after the stoppage of the first five days (😭), and the re-ease (😂). checking NICE, we haven't quite followed protocol for suspected pmr. but maybe we'll get back on track. I've started to read what you've highlighted. thank you!
I was going to say if you have problems with your rheumatologist ask to be referred to Saravanan at QE in Gateshead who is very good with PMR and did a great deal with the local charity when it existed, However, I see now you already have a rheumy - in Newcastle? It isn't clear though - have you been given a UCTD diagnosis or is it possible this is PMR rather than UCTD and they got it wrong?
Under normal circumstances there is a support group which meets in Framwellgate Moor, Durham, but at present contact is virtual!
Your GP practice wants to get their game plan sorted out - to claim he can only prescribe 5 days of cortisosteroid is a piece of nonsense and something I have never come across before. You were lucky it worked in the 5 days - some people do need longer but it doesn't mean it isn't PMR!
I must say that after 5 years on here, yours is one of the most puzzling posts I have ever read. I don’t know if a tentative diagnosis of undifferentiated connective tissue disease would send a doctor down a completely different path as I have no knowledge of it. I have had a Graves Disease diagnosis since 1984 and have experienced both over active and under active thyroid function. Neither of which resembled my PMR in any way. I have never heard anyone’s doctor quoted as saying that they can only prescribe Prednisalone for 5 days. It is within a GP’s remit to treat PMR from start to finish. I would have thought that your positive response to Prednisalone would have been the diagnostic clincher. It is in many of our cases, certainly in mine. The relief both physical and psychological was profound. Finally getting your coat on, after Pred. was such a red flag!I feel very concerned about the prolonged pain and disability you have suffered and agree with PMRPro about the need for a Rheumatologist who really understands PMR. Keep in touch with us. I have the feeling that you have at last arrived in your proper home.
I've been trying to find a way to send zebras to my Rheumy but no success yet. I've just composed a missive to him hoping for a constructive partnership. If successful, and don't hold your breath, do you want a copy ? PM me on chat and I'll send you one which you can paste or amend as appropriate to you. I've had my fill of egoists who think they can tell ME what to do with MY BLOODY body....sorry but I've had enough... whisky mac talking but serious....PM me if you want a copy.
The way in which your general practice has 'managed' your care is scary and unprofessional. I could never had carried on for the length of time that you have. For me, four months from onset of symptoms increasing in severity until diagnosis and Prednisolone was more than enough to bear.I sincerely hope that your appointment on Thursday goes well and that armed as you now are with links to information provided, you will be able to use the knowledge gained to take an informed part in your own healthcare. There is so much help and support in this forum; you will always benefit from becoming a member.
hi, everybody again. i'm really sorry, it's hard to summarize everything. i've been feeling fully rubbish for fifteen years with bouts of feeling worse, but i haven't given up. sometimes tests back up the rubbish feeling, sometimes they don't. in the past, the rheumy said that i've got bits of lots of different kinds of systemic stuff going on, but no one diagnosis. at the time, that meant undifferentiated. i don't know what it gets me now. a return check in with rheumatological services i think will be good. it's been a long time, and it feels like i've been in a flare for over two years. i don't think pmr accounts for everything in the past fifteen. but i am no rheum. the hip and shoulder stuff specifically is just under a year now. i think the gp meant to prescribe 5 days on high before needing to do the taking care stuff, like the steroid card and the ppi, and the blood checking, and the talking about bone density and all. he wasn't shrugging the ability to treat. the admin is just starting to catch up to the way he and i have figured out how to work best. the automatic text reply to the blood test was ... abominably poor. i'll mention the qe when we talk rheumy, altho i'm not allowed to drive and transport can be daunting sometimes. it's worth it if someone knows the thing they're dealing with, oh yes! thanks for that, pmrpro, i like a good doc tip. i'll look at the framwellgate moor group, too.
i walked to a place half a mile away, stood in place for at least ten minutes before sitting, and walked back. joyful heart! i did forget about too much sunshine so my face is a wreck , but i've busted out with the aloe and i'm hoping that helps the rash calm. must not forget again.
heya! lordy. wish i'd been corticoided ages ago... really helping the hips and shoulders, but also a few other things seem to have eased up a bit. also finding some down sides. trying to write everything down to give to gp. what will they want to know about how the treatment is going? i'm on 20 mg of prednisolone until thursday, at which point there's decision about what next. i feel under-directed.x cath
i guess maybe i was hoping drC might have said what information he wanted to have from me on thursday at the follow up appointment. right now, i'm just hoping what i'm noticing is going to be useful. 🤷
The rheumy I saw wasn't in the least interested in my report of a 6 hour miracle with 15mg pred! I went from stomping downstairs like a toddler and crawling back up on hands and knees to a normal descent and being able to carry my mug of tea upstairs normally! It really was that dramatic - I will never forget it.
my son was overjoyed: i felt well enough, i let him throw me jiu-jitsu into the sofa for the first time in about four years. i wasn't quite ready for that, but to feel even possibly able was amazing. overnight coat putting on, I'll take it. ☃️🧥😊
15 years and managing??? hats off to you. Patience doesn't even come close. Well done you hazmatrec for surviving. Please estop being hopeful and advocate for action. You are in charge. It is your body. You know how you feel. They certainly do NOT. If they did you would not have waited one cintillion of time and the oharmacy would have been open 24/7
i think some things have giren worse with delays and time and age and stuff. it didn't slap in as bad as it has been recently. it's been very roller coaster. and i have had some help. and learned how to ask sometimes.
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