Having a terrible time with my father he is so very unwell in hospital for 7 weeks, they said PMR but I believe its GCA
Anyway CRP 224 was given 40mg Prednisolne and now he is unreconisable mentally and physically (42 lb weight loss) so mentally confused and I believe the steroids are making him much worse,
I want them to taper him of pred so does anyone know how to taper from 40mg and what is the half life?
Hi,
Sorry to hear about your father. I realise you are very worried about him, but your post is a little confusing.
Why do you think it's GCA and not PMR? And if so, then steroids are the only drug available.
If he's as ill as you describe there could be other medical issues- perhaps a bit more information might help us to understand. Steroids do have side effects, but not in the way you describe.
The doctors need to make to the decision of how to taper in his best interests, we cannot comment on that, sorry.
What do you mean by 'the half life'?
40 mgs is an extremely high dose for PMR and a bit low for GCA. The weight loss is odd too. I only had it with untreated PMR.perhaps you could give us a better idea of his all round health and symptoms. There are a lot of very experienced people on here to advise. Kate Gilbert has written a very helpful book on PMR that can be purchased through Amazon. She pops up from time to time with nuggets of wisdom.
I agree with the others, Pred doesnt usually cause the sort of symptoms he has. Presume they have done extensive blood tests for other illness - if not I would press for that. In general Pred has a good result very quickly at the sort of dose he is having.
Hello riannabri, I have just seen your original post.. did your father have the scan? I hope you are nearer getting some answers. As Dorsetlady said, as your father is in hospital under a Consultant's care, he/she would be the person with whom to discuss your worries about the prednisolone. Take care.
The weight loss for me is a clue that something else may be going on with your dad. I have PMR and lost 30 lbs without trying. Turns out I also have cancer too (lymphoma), but didn't realize it until I pushed to find out why I had such great fatigue and weight loss. Just a thought. My doctor ran certain blood tests looking for proteins in my blood that would be significant to cancer. I do hope you get to the bottom of things.
The halflife of pred is 2 to 4 hours. How they taper in this sort of situation is up to the doctors and as DL says isn't something we could say. However, in theory it is possible to reduce the dose quickly at the high doses - as much as 10mg at a time is possible down to about 20mg. Then 5mg at a time to 10mg. Below that the reduction must be much slower as you are then at the point where adrenal function must kick back in and that takes time. The withdrawal side effects are likely to be very unpleasant and uncomfortable but if he is a unwell as you say it is swings and roundabouts.
I think I have also suggested before that whatever it is he has it isn't very likely to be PMR and 40mg of pred should manage that well. A large vessel vasculitis, even cerebral vasculitis should be considered - and other drugs are used there. But if it IS GCA then stopping the pred will leave that to take its own course and that is also neither simple nor without risk.
Thanks PMR Pro. Can you tell me if there is a difference between GCA and large vessel vasculitis -- or as in my case -- possible involvement. I had xartoid and vertebral vessel involvement w the GCA -- pretty frightening. Somewhat o.k. now.
Is the treatment the same? I also take low dose enteric aspirin.
As I may have mentioned -- after a major Hosp. missed the GCA for 4 months -- it has been difficult to get adequate diagnoses at times.
I researched and asked, when I was in the Hosp. -- is there large vessel -; involvement?
'Well -- maybe?'
aargh!
Whatever it is ---! ( I have two Dr.s very much with me on this) -- it seems under control.
Ate these two diff. disease, or one leads into another?
Thanks PmrPro.
Surviving in NY
Whittlesey
GCA is a large vessel vasculitis, not all LVV is GCA. Like spaniels are dogs, not all dogs are spaniels. However - GCA can affect any artery with an elastic component to the vessel wall (which is why it doesn't affect veins) and is often found in the carotid, vertebral, aorta and brachial arteries besides others. GCA is mainly managed with steroids - but other forms of LVV may be managed with other immunosuppressants such as cyclophosphamide. There are other drugs they use - not sure what they are off the top of my head.
This is A very complicated case as my poor father went in fairly ill but walking, talking and coherent but due to the hospital errors and such poor care he is no so very unwell - its so complex to explain. All I can do is post a copy of the questions that I have asked the hospital.........be prepared for a very long read!!!!! I honestly don't know where to turn 
i'm exhausted trying to fight them as he has never seen the same doctor twice in 7 weeks
Copy of My email to the Hospital
Despite trying to get an answer to these questions for over 10 days, to date not one of these questions have been answered. Clarification is needed to enable us to work towards a discharge and to even enable us to have a meeting.
Pet Scan/Steroid Dosage
My father had a PET scan on 16/5/2017 and as per my email to you 15/5/17 I asked "Has my father been weened down to the recommended 5mg Prednisolone prior to the PET Scan for a period of days – As on 20mg this dose would suppress the inflammation enough to affect the results". This question was not answered and after viewing my fathers drugs chart in fact the dosage was increased from 20mg to 40 mg on 12/5/17. So now I have 2 questions regarding this increase in dosage:-
a) Why was my fathers dosage of Prednisone increased from 20mg to 40mg on 12/4 as his blood tests results ESR/CRP had not increased (as noted on his blood tests up until 10/5).
b) A PET and MRI were done on a dosage of 40mg Prednisolone, this was my fathers first every PET/MRI so you have no baseline scans to show inflammation prior to the use of steroids/immuno-suppressents. So taking an MRI or PET on a dosage of 40mg to detect the extent and activity of large-vessel vasculitis/PMR or any similar inflammatory conditions would almost definitely show a False Negative result. A PET/MRI is normally run 3 months after a patient has been on steroids to show the clinical response, as patients would normally have significant decreased laboratory parameters of inflammation after implementing steroids.
SO - My question is how possibly could you get a true reading on the PET/MRI when my father was on a significant anti inflammatory dose of steroids?
Rhematologist
I understand that my father finally saw a Rheumatologist on 11/5/2017, I requested this after my father was officially diagnosed with Polymyalgia Rhematica by Dr S on 5/5/2017 and unofficially by Dr M since 10/4/2017. My questions regarding the rheumatologist are as follows (asked 7 days ago unanswered) :-
What is the name of the consultant Rheumatologist?
Why was I told without question my father had Polymyalgia Rheumatica (I stated numerous times that I did not think this was his diagnosis) and then apparently, the Rheumatologist discounted this diagnosis only last Thursday 11/5/17?
Why was I not told this diagnosis had been discounted?
Most importantly, in the absence of Polymyalgia Rheumatic what is my fathers diagnosis?
I am sure after 7 weeks you now must clearly have some idea what is wrong with my father as if you take his steroids away his CRP shoots up >225 as does his ESR and in the absence of a Tumour/Cancer etc it is clear that we are dealing with an inflammatory/Autoimmune disease that must have an origin/name or similar?
Medical Questions in General
Why was my father left with a faecal impaction with overflow diarrhea for 5 days despite us telling you this was what he had and more worryingly whilst he was on a ward specialising in Gastroenterology and is under the care of Dr S, Specialty: Gastroenterology
Why has my father been catheterised since 13/5/17
Why was my father’s Urinary retention not dealt with and was only noticed by a doctor after my sister T begged for him to look at my father’s stomach due to it being so distended?
Why was my father on continual IV fluids for 3 days, was this due to a worsening of renal function caused by the overflow diarrhea from the faecal impaction, therefore leaving him further renal impaired and dehydrated
I believe my father had a Chest scan 5 days ago, what were the findings of this?
Have you found the cause of my fathers 42 lb weight loss in the last 6 weeks?
Why and who took my father off of his heart medication (atenolol, simvastatin) and also Lactolose/senna?
Why was my father given opiates (codeine) when it clearly states in his records that he is totally intolerant to opiates - they crash his BP and make him very unwell, it is a genetic intolerance
My Concerns
You are aware that I feel my fathers care has been terribly mis-managed as per previous emails to CGH and the CQC. But sadly my fathers decline is such that he is now bed bound with bedsores, immobile, has dramatic weight loss of 42 lbs that is not stabalising and I believe a lot of this is due to the miss management in your hospital. (I have all of this logged and will pursue this at a later date with the appropriate authorities). As he came in walking, talking and coherent and is now as stated here.
I have to ensure from here on we come up with a plan to stabalise and move forward with getting my father a diagnosis and some health stability and I have no idea how we can get him back from this. I therefore ask for clarity on how we will get him a diagnosis, rehabilitation and so forth as we are desperate for him to come home , but how possibly can this happen when he is bed bound, Incontinent and in nappies and without diagnosis. It is to this end that I need you to come up with answers and a plan to move forward.
If you feel that CGH do not have the capabilities to progress with my fathers care, to diagnose or find a solution to all of the above then would it be best to move him to Chelmsford where they have an excellent CQC report unlike yourselves that still rates as poor and inadequate?
I await your detailed response to all of the above to enable us to move forward.
Yes I have done that, no joy so have now involved the head of the Care Quality Commission and they have the hospital speaking to me Finally and they are doing an inspection - The problem is these idiots at the hospital don't seem to know what they are doing and seem more concerned with having pen pushers fight their corner than to get my father treated or even diagnosed - It a nighmare but sadly seems very normal
My niece works for CQC - I have never dared to enquire as to what she does other than writing reports... I have my own views on the value given the fact the hospitals know in advance and portray a less than real image. So when it comes up as poor and inadequate - you can only imagine in your worst dreams what it is really like!
But that catalogue of errors seems particularly inept - especially the medication lot.
What a dreadful situation your poorfather is in . I pray that things will improve and you will get answers very soon and appropriate care . I was an aged care nurse and find it appalling that people can be left to deteriorate as you describe . Blessings and prayers for you and your dear father .
So dads MRI/PET were normal, I beleive this was due to the anti inflammatory effects of 4 weeks 40 mg prednisone, so perhaps giving a false negative.
The they still state its PMR but I am not convinced as I was told a CRP of 224 & ESR 119 is a little too high just to be PMR and his symptoms do not fit a friend (consultant) says PMR usually produces much more modest elevations and the expected widespread muscle soreness/stiffness - He has none of these
His care goes from bad to worse and the trust either don't respond or lie, we have had some further serious problems over the last 2 days
I am at a loss as to where to go from here, I have asked for him to be moved to a different team as they refuse to move hospitals and for him to be put back on all his meds that he came in on
The problem is as I say he went in 7 weeks ago poorly but happy, reading his paper, walking, laughing but due to their lack of care he is bed bound with bed sores, very confused with this now 46 1b weight loss, in nappies and catheterised
Any input would be helpful xx
You really do need to get him out of there don't you. Inflammatory markers of that level are VERY unlikely to be only PMR - don't care what they say.
Sorry - I'm at as much of a loss as you are.
I agree, but they said they will move him to a different part of the hospital but not a different hospital - we cant have him home as hes too ill - PALS called today and they were on side and said its so serious it has to go to an official complaint - But still no resolve for my dad.
The trouble is I am unsure what the illness is
Public shaming. Contact your media outlets. Contact your electoral candidates. At this point what do you have to lose?
That was my next thought but it would be too stressful on everyone right now
Cant get MP's involved as parliament is disolved and no MPs until after election
Today we have been told that my father has a Positive T Spot Test so they are now looking at TB - Totally unsure what this means, he has had a terrible chest/cough since he became ill and has over a 4 stone weight loss. I am told he was probably infected when he was young and that it was latent that could now have become active - Im at a loss as I know nothing about this but it does add up as his CRP/ESP was so high it was acting like an infection with sweats, chills and a terrible chest - unsure what the next step is as the hospital did not seem too concerned
I would suspect that the high dose pred he has been on may have caused the latent TB to become active. The treatment is medium term multiple antibiotics (6 months altogether and up to 4).
nhs.uk/Conditions/Tuberculo...
Have you been checked too? Just in case. My husband was told a few months ago he has had TB - we assume he caught it when he was in Germany and we did a lot with the US army. It was very common amongst the squaddies. But it is currently latent.
But at last they have somewhere to start...
I am unsure if its active as it was a T Spot test so now they have to do further tests. Me, does my BCG/booster jab not cover me for TB?
My elderly mother has been diagnosed with GCA and is on a high dose of prednisolone.
Over the last few weeks I am quickly getting upto speed on the condition and the medication.
If your father is on preds then has he also been given alendronic acid ?
Preds can cause mental confusion or "brain fog". My mother has it now and it started after she started taking the preds.
His vitamin D levels and B12 should also be checked as they are often found to be affected in patients with GCA especially with older patients.
Side Effect of Prednisolone - Dementia?
Up the Prednisolone? 
withdrawal of prednisolone 
Tapering and struggling 
Speedy taper after relapse - safe?
