I had been admitted via A&E to hospital with a small rupture to the large intestine and diverticulitis flare, it was a rough time and on lots of meds to correct-was in hospital for 10 days. I am now back home under the care of GP. Whilst in hospital one of the meds, and I was on an enormous amounts , I believe it’s antibiotics called metronyzadone ( and always upsets my system which is the go to when I have these flares ) however I really seemed to have an adverse effect . It may of been the mega amount of different meds I was on but I apparently got super anxious, and basically I felt I “lost the plot” I felt like I was being overdosed, was talking “drivel” and arguing with the doctors . Since being off the additional meds and reverting to my “normal” meds I do feel a lot better in myself. However, I am 23 mg (from30mg at start of Jan) . My question is my doc has to review my pred meds and after hospital check next Wednesday. He wants to get me off prednisone as it’s affecting my moods and have changed (anxious and being a bit snappy) by being on pred. I was changed from pred to hydro cortisone as every thing had to be by IV only whilst in hospital. I have been getting a bit of pain across the tops of the hips at the back whilst in hospital. The last reduction was 5mg , I think that’s what’s going to be suggested again- is this a reasonable reduction or too much? Should I stay on 23 for a week or two to stabilise after the upset of the hospital. I want to get off prednisone too but want to do it safely. Thank you reading this long thread and hopefully advice.
decrease in Pred after hospital admission - PMRGCAuk
decrease in Pred after hospital admission
I would stay on current dose for next couple of week… and see how things go… the hips may just have been because you were in bed as well as change of Pred from oral to IV.
5mg is a big drop, even starting on 30mg … 2.5mg would be better - see you were on 25mg three months ago, so have you been reducing by 1mg a time since then?
And much as your doctor and you may want you to be off Pred, your PMR will have the final say, but a lower dose may well improve your mood…
Can I ask why you were started on 30mg - that is high for PMR?..and that may well have made the mood swings more intense. .. so a dose nearer 17.5mg would be better.
However having said that, bigger drops can be more stressful on body/illness… so it can be a difficult balancing act.
Hi, thank you for your reply. The initial drop was from 30 to 25 and it bought on my symptoms again so went back up to 30 for a week or two then dropped down by small increments till now 23. To be honest my system feels screwed since being in hospital,so I was thinking of saying to stay on 23 as you also suggested and then do small decrease in a couple of weeks when things have settled down more.
Think the reason he put me at the starting dose was that I couldn’t walk, raise my arms or dress I had to be carried out if bath and was in agony. He didn’t actually say to me why that particular dose.
Okay - thanks.
Agree hospital visit will have knocked the stuffing out of you, so no rush to reduce… make sure you feeling really okay before you do… and then small steps.
Good luck.
Thank you again for your help. Just to clarify -would 2mg /2. 5 mg be about right then?
See how you feel - 2.5mg might be okay down to 17.5mg or 15mg. But after that 1mg a time. Plus you need to be on each drop long enough to know it’s okay before you reduce. So at least 3 weeks, although 4 is better.
It sounds slow., but better than trying to rush and causing a flare.
Brilliant-thank you
I do realise that your doctor has a reason to get you off pred - but all that is going to happen if you DO have PMR is that all those symptoms will return. And there isn't much other option to control that, But to be honest - I'm not entirely convinced this is "just" PMR, indeed, it may not even be the PMR family.
Can you elaborate please. I am interested as to what makes you think “it’s may not even be the PMR family.” What might it be?
From my point of view, I had the pred and within a day or so I was able to walk and move which I could hardly do the days before. Dr said it was classic PMR.
The difficulty you are having reducing pred at such a high dose is unusual with "just" PMR and might suggest it is actually large vessel vasculitis causing the symptoms - it could also respond very quickly to pred but be too much inflammation for a lower dose of pred. It is also often seen in patients who later are found to have an inflammatory arthritis - several can have what is called a polymyalgic presentation.
Hi thanks for the clarification.
My daughter suffers from wegners granumotsis (terrible spelling but that is what it sounds like) -which is a vascular disease-started in her pituitary which had a growth on it. They had to do brain surgery to remove, but since then, through the disease she has lost sight in one eye and hearing in one side plus it’s now affecting her nerves . It’s an awful disease.
I’m having a review with my Gp on Wednesday and will ask him about what you’ve said. All information helps .
I forgot to say that the inflammation marks were high when seeing the doctor . In the high 40’s although not as high as when in hospital this time high 180’s that was after a few days being in hospital.
this just happened to me . I ruptured a diverticulita as well. I was given large doses of IV antibiotics for a week , then oral for 3 weeks. I also was given big doses of IV hydrocortisone (400 mgs a day)😳😳
I almost had to have a bowel resection and colostomy but I recovered. I was also on 25 mgs of prednisone for 3weeks , even whilst on the IV hydrocortisone.
After discharge , after a week at 25 mgs , I started gradually reducing . 7 weeks later I’m on 13 mgs and reducing by 1 mg a week .so far so good.
Unfortunately the colorectal surgeon that I saw 4 weeks later , thinks I still will need the bowel resection in about 3 months😖 So trying to reduce prednisone for surgery.
This is one of the risks of being in prednisone I’m told. I was also on methotrexate but I stopped that.
I hope your Dr sends you to a surgeon for a colonoscopy to see if it is healed. Due to continued prednisone I’m at increased risk of relapse.
It’s horrible isn’t it. I really feel for you it’s just the pits.
I had a gangrenous segment about 24 years ago and they did an emergency resection then., they thought it was burst appendicitis but found the bad bit when rummaging in my innards- I am apparently lucky to be here. But have had diverticulitis for years, mostly they grumble and GP gives me the antibiotics and I rest off eating and it usually goes off , had a quite a few bad enough to put me into hospital over the years but this one was a really terrible one.
They were considering an emergency stoma when admitted and then decided after an contrast ct scan that they believed the rupture to have “sealed “ itself with fat “ sufficiently to use my normal protocols -mega antibiotics and painkillers etc plus my meds. But as you said the prednisone/hydo was inhibiting my body from getting well and the inflammation levels were just not coming down. So they started yet another course of all the meds -I really felt like I was being overdosed and tried to tell the doctors but they sent having any of it. It was an extremely scary time. I was very anxious too which didn’t help. The consultant says that since I’ve had 3 flares (2 minor ones) this year already, my past history and this recent episode , they are asking me to consider a stoma and taking my large intestine out . Apparently my intestines are totally covered with these pouches so undecided how far up the tract from the the large intestines they go. They will call me back in a couple of months time to discuss options after I have healed up and recovered from this bout, they did mention resection but where it is they think not a good idea anyway. The second consultant just said no it will be a stoma- Fun hey!!!
If ever you want to chat feel free to message me. I hope they sort you out and get you over this episode . Take care.
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