Need advice or reassurance.

[Lanakay]

After my hospitalization and strong antibiotics for a perforated colon I had what I now know was a bad PMR flare. I had been down to 6 mg. A day after I was home from the hospital I was so stiff and sore I told my family I thought I was turning to stone! My doctor said to go up to 8mg. It didn’t help. I had to have my daughter put railings on my toilet because I couldn’t get up. The last 2 days I have taken 10mg split into 2 doses. This morning I can walk and get out of a chair and have ver little pain. I also read that prednisone can make a perforated colon more dangerous because it can mask the symptoms until it is far more deadly. I also have 3 biopsies on my right breast coming up next week and my last aunt’s funeral tomorrow. Did I mention my husband brother died unexpectedly a week and a half ago? Do I stay at 10 and for how long before I start to taper again?

[PMRpro Ambassador]

Well, I certainly think you shouldn't be tapering until your stress levels have damped down a bit! But you need also to speak to the GP and explain your fears to him and be sure that the perforation isn't a concern with the pred.

[Lanakay in reply to PMRpro]

Thank you for your reply. My mother died because of a ruptured colon so I am a bit wary. She did not take prednisone. She did have rheumatoid arthritis however. I am going to stay at 10 at least until I talk to my doctor tomorrow. I was hurting so bad last weekend that I really thought that I had some new ailment. This morning I feel like living again.

[Hidden in reply to Lanakay]

Thats a good sign you have done the right thing. But like you i would be worried and discuss concerns with gp.

[Blearyeyed]

Definitely discuss your concerns not just with your GP but perhaps via a phone back with the Gastrointestinal Department / Ward/ Consultant Doctor who treated you when you were in hospital.

Remind the Nurse / Secretary what happened , the warnings you have heard about Pred but also your Family History.

Tell them you have increased to 10 mg Pred which is helping but just want to check from their specialist view point that it is ok for you , point out you are doing it to make sure you don't end up in hospital again as an Emergency from not getting the right advice.

If you also have a Rheumy , it might be worth doing a call back with them too , so you can compare the information and make a properly informed choice based on your very personal circumstances.

If it is fine in terms of the Colon , with all the emotional and physical triggers going on , it sounds like the increase to 10 mg is a good thing for your pain and mobility.

If you are going in for breast biopsies , that might also be a factor in what dose you should take on those days too.

This needs strong specialist medical advice not just GP no matter how knowledgeable they are , so maybe if you don't hear back from the Specialists , go early , or a day before your biopsies and visit the Department / Ward to ask for some advice early , so you feel calmer and properly prepared for everything ahead.

You have alot to deal with just now , but hopefully , things will get better soon , hugs , Bee x

[Lanakay in reply to Blearyeyed]

Thank you. It just seems everything is happening at once. !!!

[Blearyeyed in reply to Lanakay]

I know , it always does , but stay strong and don't worry about bothering the experts , that's what they are there for and I'm sure when you explain the circumstances they will be alot happier that you asked them first rather than having a more serious problem later on that they would have to deal with.

Take care , Bee x

[Lejazzhot]

I so feel your pain and distress. I was also going to ask the group about my extreme rigidity, whether it’s unusual, whether it means a flare up. I thought i knew stiffness until a week ago whn i woke up paralyzed- unable to turn by head, lift my arms or my legs. I was literally frozen solid. If not for my husband’s assistance, i would have remained in bed. I had zero range of motion, zero strength; the slightest movement caused the most excruciating pain. After 2 days like this I increased my pred from 11 to 12mg/ taken in 2 doses. It took another 3 days to loosen up. Yesterday, 1 week later, i felt good and relatively “fluid”; I even checked out a body movement class for today. Obviously this was too cocky on my part because I

woke up this morning paralyzed from neck down. A block of stone.

Is this a flareup? The 2nd in the same week.

Do i just increase my pred

[PMRpro Ambassador in reply to Lejazzhot]

I really feel this is something that needs to be brought to your doctor's attention. That is not really a usual effect in PMR but it could be this:

nhs.uk/conditions/sleep-par...

[Lejazzhot in reply to PMRpro]

I am working with my dr who thinks this is not normal stiffness. I was curious if others had experienced something similar.

[PMRpro Ambassador in reply to Lejazzhot]

Someone has mentioned this sleep paralysis before - but it was some time ago and it was something that just happened once.

[Blearyeyed in reply to Lejazzhot]

Are you only working with your GP?

If so , firmly but politely request an urgent referral to a Rheumatologist , you cannot be sure wether this symptom is PMR related or something else until it is properly assessed.

Unfortunately, once you have a diagnosis for PMR or some other form of joint/ pain related issue far too many GPs will simply brush it off as a side effect or symptom of the condition you are already being treated for , this might be right , but it is not always the case.

If it happens to such extremes again , maybe a trip to A and E at the time it occurs to be assessed while symptoms are present without the wait for a referral may be the way to go.

[Hidden]

Hi Lanakay

As the others have said, a definite call to your Rheumatology Team, the Gastro Team & an Appointment with your GP

You have so much going on, it’s really a very difficult time for you & Professional Advice is the way forward.

The breast biopsy’s should be pretty straightforward, they use a local anaesthetic so the most you feel is a little pressure. What day are you having them done?

When my PMR plays up my pillows always feel like l’m laying on concrete, it’s very strange!

Don’t think about tapering until you have professional advice.

Take Care & thinking of you.

MrsN x

[Lanakay]

I want to thank all of you for your most helpful replies. I will take your advise. My biopsies are Friday, May 3rd. The downside is that I don’t get the results until the 10th. A whole week!

[Purplecrow]

OMG! Talk about avalanche of stressors!!

I hope all goes well with your biopsies.

I send Love and Hugs,Jerri

💜🙏🏽💜

[Jackoh]

Such a lot going on!! Sometimes it feels that it never rains just pours!! I think you made a sensible call going up to 10 mg but as others have said seek professional advice. It’s better to be safe than sorry otherwise you could be worrying about the effect the Pred is having elsewhere and that would just take your stress levels up which we know is not helpful to PMR. All the very best for your biopsies. Let us know how you get on. All the very best, Jackie.