Off Prednisone for 3 weeks but.......

[A77bruin]

I have been on prednisone since May of 2021. 10 months ago my rheumatologist added Actemra infusions to my regimen. 3 weeks ago I finally was completely weaned off of prednisone. This past week, and just one day after my infusion, I started having severe stomach cramping, diarrhea, shoulder joint pains and back pain. On my own, yesterday and today, I took a 5 mg of prednisone. My back and my shoulders have calmed down a wee bit and my inflamed stomach is still cramping. Here's my question for all of you experts. Can my stomach be related to going off of prednisone? Can it be inflamed bowels? I will call my doctor tomorrow but I'm not sure if that could be related to everything else. I'm wondering why everything would flare up just one day after an infusion. I'm also wondering if inflamed bowels could be a PMR symptom. Thank you so very much for helping me out on this one.

[PMRpro Ambassador]

Those are typical symptoms of adrenal insufficiency - and you were on enough for long enough (3 years) to have sent the adrenal glands on holiday as the stop producing cortisol when they register that there is already plenty of corticosteroid present in the body.

Unfortunately, while Actemra replaces pred for the management of PMR, it doesn't do anything to replace the lack of cortisol as the pred dose reduces. At the very end of the taper it really pays to go much more slowly to allow the system governing the adrenal gland production of cortisol to recover and that can take months, rather than the few weeks below 5mg you seem to have had. It never fails to astound me how unaware of the physiology of endocrine function some doctors are!

You have done the sensible thing to take some pred - and now it will make sense to taper much more slowly. You might be able to drop to 3mg and be OK - worth trying as that will make the last stage shorter. But then - really slowly, possibly as little as 1/2mg per month.

[A77bruin in reply to PMRpro]

WOW PMRpro….. I knew coming to this site would come up with an answer to my problem. I have gone through every possible reason in my head and never came up with. Adrenal insufficiency. My taper was fairly slow. I had been on 5 mg for many many months and I went down a milligram a month obviously that was not good for my body. I have had eight surgeries in two years and blame a lot of it on the prednisone. This includes two shoulder replacements because my rotator cuff in both of my shoulders tore, but at the time I was on too high of a dose of prednisone for my Orthopedic Surgeon to operate so by the time I got down to five, he tried to repair one rotator cuff and it failed, which led me to a double shoulder replacement. I also had a spontaneous tendon rupture in my pinky (Vaughan Jackson syndrome) which nobody knows if it’s related to the prednisone or PMR. It’s been very interesting around here for a few years.

As for my severe stomach cramping, should taking the Prednisone relieve that or is there something else that I can take to relieve my symptoms?

Needless to say, I am very appreciative and thankful for your response.

[PMRpro Ambassador in reply to A77bruin]

It may take a few days for your upset gut to calm down. It's a shame you hadn't stuck at maybe 3mg rather than 5mg for a few months - in many patients 5mg can still be plenty to suppress adrenal function very effectively.

I hope SnazzyD see this and comments - she really struggled with this last stage so knows a fair bit about dealing with it.

[A77bruin in reply to PMRpro]

Hello again PMRpro. I would just like to give you an update and get your insight on a few things. Here we are 19 days later. Still not back to normal even though I went on Prednisone within a day of feeling horrible. My abdominal pains and diarrhea have been a part of my life for 3 weeks. I went to the ER on day 10 and all tests came back negative. Yesterday I was finally able to get an appointment to see my Gastroenterologist. He suspects microscopic colitis - only confirmed through a biopsy taken during a colonoscopy. I have one scheduled in 2 weeks. In your opinion, do you think PMR could have caused this? Or adrenal insufficiency? You have been a part of these boards for so long that I thought you might know about this. Part of my health problems are diagnosed by a gastroenterologist and part by a rheumatologist, however, I am not sure the 2 doctors know how PMR and microscopic colitis relate to each other.

Sorry for the length of this….but I value your opinion.

[PMRpro Ambassador in reply to A77bruin]

I do know a few people with PMR who have later been diagnosed as coeliac and/or microscopic colitis. If you have one autoimmune disorder you are at a higher risk of developing another.

There are a few case reports of gut problems and PMR presenting at the same time, e.g.

ncbi.nlm.nih.gov/pmc/articl....

but I don't think it means PMR causes specific things like this. My view of autoimmune disease is that you get a range of symptoms and the diagnosis they plump for is the one that covers most of what they identify with maybe a codicil of "atypical" to cover their backs, What you really have is best described as "PMRpro syndrome" for me, "A77bruin syndrome" for you. If in the past they got a load of patients with very similar symptoms, they invented a covering label, very often including their name to continue to posterity! GCA was Horton's disease for example. SInce then, technology has improved and it is possible to differentiate between the finer points. But all they can do is manage symptoms, they can't cure, so it would make sense for GI and rheumy specialists to at least TALK to one another!!!! Since the medications for one facet aren't always good for others it can be a complex task - and blinkered specialists don't help!

[Italybound62 in reply to A77bruin]

Hi A77bruin. Would you mind sharing how you attributed your shoulder issues on prednisone? What were your symptoms and how did you conclude this was not PMR and make the rotator cuff diagnosis. What type of doctor did you go to for testing and diagnosis?

I am going through early stages of a new shoulder pain and suspecting it may not be PMR after 2.5 years on steroids. I also am blaming it on prednisone damage because I never had this before.

Thank you

[A77bruin in reply to Italybound62]

Achy shoulder joints were a sign of PMR. After being on prednisone for a year, I basically felt first one shoulder than the other shoulder “tear“. It hurt to move my shoulders. An x-ray and an MRI showed I did indeed have a torn rotator cuff, actually two of them. Prednisone is known to weaken tendons and a torn rotator cuff is when the tendons tear away from the bone. Unfortunately, I was on too high of a prednisone dose for my Orthopedic Surgeon to operate, and by the time I got down to 5 mg, the rotator cuff was too far gone and the surgery failed. This led to my double shoulder replacement. Have I answered your questions or do you have more? I am happy to help in anyway I can with your questions.

[Italybound62 in reply to A77bruin]

thank you. This helps a lot.

So sorry you needed double shoulder replacement

[abby78]

So sorry you wnt through that. I went all the way down to 1 mg every other day before being completely weaned and thankfully my symptoms were mostly headaches. However I had only been on Prednisone for about 10 months. Hope it resolves soon. I have been on Actemra only now on my doctors recommendation and seem to be doing fine.