Good morning good people,back again as am in limbo.Had all my checks at hospital last week,saw a registrar who examined me ( albeit briefly) ,and providing bloods come back ok will be starting TCZ in 2 to 3 weeks.I told registrar that I still have double groin pain,lower back pain and funny sensations in right side of neck/head.She felt temple area/ neck etc and told me she would tell my Rheumy doctor at the hospital during their meeting.I also told her I was tempted to raise the current dose of pred from 7 to 12 .She phoned me later that day and said to stay on the current dose of 7 mg.I know I have back issues but as the spinal chap told me after CT scan I should not be experiencing bad groin pain in other side of body with what my scan showed.I believe I mentioned this before on my previous post.I also still have the feeling of “ fullness” in my left ear which is what I had months before my GCA diagnosis and indeed Dorset lady had.Feeling pretty low with all this lower pain,it affects every movement and paracetamol does not cut it.Tempted to go against their advice and up the pred now.Any thoughts good people?
Rheumy,TCZ hip pain and me!😱: Good morning good... - PMRGCAuk
Rheumy,TCZ hip pain and me!😱
Maybe try 10mg for a couple of days and see if that’s makes any difference…
As for me having issues with my ears- that’s one thing I didn’t have… must be confusing me with someone else.. our connection is sight loss..
Thanks Dorset lady,will try the 10 mg.Sorry about confusion with 👂🏾,had so many replies about it as you say,must be someone else!many thanks for quick triply.x
No problem… lots of people, lots of problems. Hope you soon feel better. 🌸
Thankyou.,Just quaffed another 3 mg!x
If it were me, in desperation I’d try a short burst of 10mg for some sort of diagnostic guide in the light of inconsistency between doctors. This is unless they have expressly said no to increases with a good reason in your case other than the vague ‘all Pred bad’.
I had ear fullness with GCA but I also had it with impacted ear wax and fluid behind the ear drum. I haven’t looked at your posts but I presume you’ve those two things ruled out by someone with a scope?
Hi Snazzy D,yep,had scopes,paid private for ENT all good that was precursor to GCA.Have just taken another 3 mg of pred,so will see what happens.Guess the very fast taper as per instruction from Rheumy did not help as have never felt quite right.Thanks again.x🌻
I wouldn't have asked about increasing the dose!!! TCZ takes up to a couple of months to start having much of an effect so if more pred helps the pain now, why not. If it does, you will get the pred down anyway. That said - it got me from 19 to 7mg but any lower isn't successful.
Thanks PMR pro.So if going up to 10 mg does not help,should I accept that the pain in lower body is back issues,and that the weird feeling in side of head is just something that us GCA people will always get?X🪷
Not sure - more pred helps me some but there is some of the low back pain that is nothing to do with the autoimmune stuff, it is mechanical or tight muscles.
Thanks PmR pro,guess it is just a wait and see if the extra 3 mg help.If it doesn’t after a couple of days,should I revert back to my 7 mg?Sorry,I just feel SO ignorant with all of this!x🌼
Probably need a bit longer than a couple of days -more like a week. Then reevaluate -and ask again
Thankyou DL,will do that,damn pain is taking over my life!Sorry to be a wuss,just seems never ending.If I knew the back/hip,/ groin pain was just back issues I would accept it.The head and ear feelings I am not so sure.Thanks again for your never ending patience and advice.x💐
As DL says - a couple of days is rarely enough. PATIENCE, Rome wasn't built ina day either!
Thanks PMR pro,I only said a couple of days as that was what DL s first post said.I see she has just sent me another reply so will read that.Many thanks.x
You're not a wuss - or if you are, so am I! Constant, even low level, pain is awful. When it is grinding you down you have every right to be a wuss. I tried to explain to a doctor doing a study about why patients assessment of their pain is often higher than the doctor's assessment of disease activity. Blatantly obvious to me!
And I don't know about you, but the unpredictability is a factor as well - I have something I must do and could have done every day for a week and on the day in question I can barely get out of bed and stand up never mind walk!
How true that is!I had made up my mind to do some pruning yesterday,no chance,spent most of the day laying on sofa with knees propped up,just getting up to do exercises,feed animals/ hubby etc.THAT is what gives me “ mental issues” .Some days I feel “good” if that is the right word to use since having this illness,other days,all manner of emotions .Never mind,I have got to get used to the fact that I am on a long journey,and sad that it does not involve sun beds and cocktails!😂Thankyou again for your support and kind words,it feels like a warm hug!xxx🪻
Why we are here!
Me again!Just heard from Rheumy,all bloods are fine apart from LFT which are raised!Have no infections ie colds,etc,any ideas please?Only good news is cholesterol levels were down,must be my five weeks on a low carb hardly any fat ,and drinking ALDIs cholesterol drinks.Will stick to the diet instead of taking statins if I can.PS Another LFT blood test Thursday,if still raised,cannot start TCZ. X🌼
Oh dear. Which - did they say? Some LFTs can be raised because of PMR/GCA but you'd think he knows that,
Hi ,no it was his “specialist” nurse,only said they were raised.Never had this before in 18 months of blood tests.Hopefully when I get my blood test on Thursday at doctors she might be able to tell me.Why does PMR/GCA raise it PMR pro?Such ignorance from me eh?😂🌺
No idea but ALT can be raised and so can others it seems
"Serum alkaline phosphatase appears to be the most consistently elevated enzyme in 18 to 62% of patients with polymyalgia rheumatic. Elevated alanine and aspartate transaminases occur in 18% of patients with polymyalgia rheumatica5. Serum bilirubin is typically normal"
journals.sagepub.com/doi/pd....
ncbi.nlm.nih.gov/pmc/articl...
is from a respected PMR guy.
😱😱Oh my days.!All over my steroid head methinks?Oh well,Thankyou for that ,will see if nurse at Drs will tell me.Now I am going to google all those fancy words!😂💐
Basically, 1 in 5 patients have raised ALA and AST, anything up to 3 in 5 may have raised alk phos. You don't go yellow though.
Ok,will ask AND write down what my liver is doing when I go on Thursday.As I keep saying,”The gift that keeps on giving!”x
You have gotten a great supply of advice, good advice. It takes a lot of patience. I had back issues totally unrelated to GCA; just my body! Hopefully the increase give you added relief but stay with it and give it a chance....hang in there, it is a journey.💞
Hi Grammy 80,Thankyou for your kind words.Yep,took the extra pred and will stay on it for a week then contact DL with progress.Sorry about your back issues.xx🫐
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