Good morning folks.After superb help and comments from DL and PMRpro,I raised pred to 10 mg for a week which is up today.Still have fullness in ear ,groin pain seems to be just in right side,back pain on waking is to be expected due to disc/trapped nerve problems.Groin pain in right seems to get worse as day goes on which suggests to me mechanical?I take my pred at 2 am so plenty of time for pred to kick in when I get up at 5 am .Regarding raised LFTs PMR pro,had second bloods done on Thursday so hopefully will hear tomorrow or Tuesday from Rheumy nurse as to whether I can start TCZ.If not,shall do a “Dorset Lady” and manage it on pred alone,hadn’t done her any harm has it?So DL,and others if interested ,should I stay on the 10 mg and see what happens regarding getting the TCZ,or drop back down to 7 mg and stay on that dose until I know what’s what?Sorry to bother you of a Sunday morning folks!xx😜😜💊
Reporting in to DL after a week of upping pred to... - PMRGCAuk
Reporting in to DL after a week of upping pred to 10!
Morning, I’d stay on 10mg for at least another week…and still a bit concerned about the ear issue… are you getting any further with that?
Regarding TCZ -let us know what advice you get.
As for doing a DorsetLady - not sure that’s a recommendation 😂🤣 …as I’ve said before TCZ wasn’t on the table when I had GCA….
Of course you are a lady,unlike me!!😱😂Regarding ear,when dr called me in to discuss cholesterol etc a few weeks ago,she checked my ear,no problems,clean as a whistle.Told registrar about 2 weeks ago,,nothing was said!I still get a ache in neck same side,but put it down to facet joint as was told by private ENT ,then lo and behold a while later GCA and sight loss occurred.I do get paranoid about any head issues because of this as no doubt DL you will understand.I shall stay on 10 as you advise DL,Trust you lot much more.Need to keep on top of my game so to speak as have a hubbie with mixed dementia and animals to care for.Enjoy your Sunday and many thanks for quick reply!xx💐💐
I do fully understand your concerns - and your added responsibilities make everything much more difficult. 🌸
Thankyou.x🌺
Dear me - as if wax in the ears caused ALL ear problems!!!!
How right!Didnt mention this before,but when I went for my examination etc for TCZ I asked registrar if she could pass over the suggested tapering plan of staying on 7 mg pred for about 3 months whilst waiting for TCZ to kick in then a slow taper of about 1/2 mg every six weeks of pred.I got the usual response from Clip board kids,” unless the advice is given by a medical professional you don’t follow it”Jesus Christ,please excuse blaspheming,but the so called lack of proper advice from Drs ,consultants etc for months resulted in my developing GCA and sight loss!Ah well,I shall stick to someone who has been there,done that and got the tee shirt,maybe if these so called professionals had to endure the fatigue,pain and uncertainty ,they would be more in tune with us lot !Sorry for the rant, !x🤬🤬🤬🤬😜💐
Ah well - MY medical professional said to wait 2 or 3 months for TCZ to establish its effect. And the slow taper approach is approved of by Prof Sarah Mackie as she used it in a clinical study. You don't get much more medical professional than Profs Christian Dejaco and Sarah Mackie.
And you'd think they might have noticed that the "medical professional's" advice to you had resulted in a life-changing event that could and should have been avoided.
Do you know what PMR pro,the next time I have contact with this lot,I am going to use your words and see if they have anything else to say about it!I shall also write down the names you gave me ,and pass them on to them.Maybe a bit more education on their part might not go amiss!Have a lovely day,I THINK we might get a bit of respite from the rain today here in wet old Suffolk!xx☔️🤬🤬🤬🤬🤬😜💊💐
Certainly they could probably do with reading some of the publications from Christian and Sarah is on a crusade to change the thoughts of other rheumies. Trouble is, the rubbish ones won't be reading or viewing the offering because they think they know it all and that is where the problem starts. There are some great videos online from her and like-minded experts. One was put up on here recently - the odd bit I'd dispute but in general one that all rheumies who think they know all about PMR could do with learning from.
Every single guideline I have read says at some point that the tapering is likely to have to be adjusted for the individual patients. And for goodness sake, going SLOWER is hardly going to kill anyone is it? Feeling your way in the dark rather than rushing in where angels fear to tread ...
Such wise words as usual from you!I hate that everything seems to be dismissed ,their theory being that if you are on Pred,it ain’t happening!I have had 2 flares,both different symptoms.I never😱🤬🤬🤬🤬😜🌺 had a terrible head ache with GCA,just head,ear,pressure,painful neck,awful jaw problems and hips that felt I was being pulled apart on a torture rack,so maybe they think that is the guideline for a flare for me now.Its bad enough that I don’t know much about it,but am learning thanks to the forum,but the difference is I WANT to learn ,they don’t it seems!
Groin pain is very common when your hip is causing problems. An x-ray can check if it is a hip problem.
Hi Piglette,I had an MRI a few weeks back.Have a bulging disc,fragmented disc and 2 compressed nerves.Hoping for injections but a year wait to see spinal consultant and a further year for the jabs!😱I asked whether the groin pain in right side was caused by these problems and was told no,there is nothing on right side of scan to support this so none the wiser really.Was told my actual hips are good for my age,no major wear and tear.Was told I could have surgery to sort out the compression but have shied away from this.Thanks for your comments though.x🌼
Sounds like you have already had your hips checked out. It was just a suggestion.
Thankyou piglette,all suggestions are welcome!Maybe not being as active as I was,may be contributing to the pain,but I still keep doing as much as I can,and doing the exercises that were given to me.Perhaps I will slow up on the exercises,they might be exacerbating the problem seeing as my poor old body is going through a lot eh?X🌺
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