struggling with pain in stomach from Prednisone

[bluegirl7]

Hello all,

I have continued to struggle with pains in my feet and ankles since my last posts several months ago. Since then the stress- my favorite friend - has also multiplied. My husband and I decided to move to France for a year to help with his healing and our mindset to not be in America for the election. We came last year for 5 months and he got a Carte de sejour and I am an Italian/EU citizen but lots of other hurdles to live here. But as PMRPro pointed out to me at the time, it is harder to move for a short time sometimes than to just move to Europe. We are progressing toward the latter with trying to resolve logistic, medical, financial, and French regulatory issues.

Meanwhile at home and hereI have seen 7 doctors and have 7 different diagnoses re: feet/ankles. I did finally remember that these issues were present when I was first diagnosed with PMR in summer of 2018 and that they were better in time with starting on Pred. BUT now my unique form of colitis is quite problematic and painful and the prednisone is aggravating my stomach so that the stomach pain is topping the foot/ankle pain!!!

I had been down to 1 mg and occasional 2mg in early spring 2023 and did well. Then in November when foot thing started up and down with rheumatologist putting me up to 7mg in January 2024 and my not being able to tolerate that and trying to stay at 5. PMRPro and others helped me with that in the early spring this year and I went up and down with 2 - 5mg. I was trying to stay at 2mg because I was having shakes and anger reactions to the 5 mg which I had never had before.

So long story since we came to France end of April, feet and ankle pain is worse - both sides, not from tendonitis but more from ligaments to tendons apparently now and not helped by neuromas in both feet and arthritis. I see a physical therapist who is helping a lot but I am afraid to move off the 5mg since feet/ankles are so much better but I cannot sustain it! The stomach cramps are unbearable and the last time it was this bad I ended up in hospital bleeding and ischemic colitis attack. I have a very tortuous inoperable colon and that is why the pain is so bad.

So my question is - sorry for the buildup but I know that helps inform you - I took 4.5mg of Pred and on Mon, Tues, Wed and 5 mg again on Thurs but my stomach pain continues to be unbearable. I thought I could start a slow taper carefully - trying to calm my stomach and not put my feet/ankles in jeopardy since they are doing much better ( I have ankle tape on them and wear boots that support them and often now thanks to the PT strengthening can wear sandals that hold the ankle and are not flat and the open toe sandals minimize neuroma pain). I take my Pred as usual after breakfast and then with lactose free yogurt ( I have trouble finding that in France although lactose free milk is readily available) so I often drink some milk and eat some Skyr.

I want to lower the Pred significantly like my former dose of 2 mg at least because even at 4.5 stomach cramps, stomach swelling etc are unbearable. But I am afraid of starting a cycle that puts me in great ankle pain again from a flare or low adrenals if I am on a dose that my stomach can tolerate. And yes I have colitis meds that are good in an attack but cause lots of other issues so I am to only take as needed meaning in dire pain for a day. I should add that Tylenol does help somewhat with foot pain so I know some is also arthritis and not just PMR in feet.

I am sorry to be such "a pain" to you all also and appreciate any advice as always.

Thank you - as people often say - you make all the difference in not being so alone with this!!!

[DorsetLady PMRGCAuk volunteer]

Not sure what to advise really -you probably have to decided if ankle pain id liveable with (adding Tylenol as necessary) on a smaller dose of Pred to help stomach pain. If it is then try to reduce by increasing the number of days on 4.5mg using what sitting pnzn suits you.

But it does sound as if you are between a rock and a hard place..

[SheffieldJane]

Presumably you take some form of stomach protection like Lansoprazole until the colitis settles. I had to do this for Diverticular disease until it calmed down. It was several months. I was prescribed Buscopan which seems to help with pain and bowel function. I am very careful with my diet and avoid alcohol , acidic and spicy foods. I take only Entric coated Prednisalone. This has got the symptoms down to a manageable level, I get immediate symptoms if I deviate that take a few days to settle.

It is a different condition but it has helped me to avoid the Pred trigger.

[bluegirl7 in reply to SheffieldJane]

Hi Sheffield Jane and Snazzy and Dorset lady,

Thank you. Yes I have all kinds of stomach meds and I take 2 Nexium daily am and pm and have scripts if it hits hard on my esophagus but that is controlled. This is more severe pain in the lower colon where it is twisted and snakes through. It is a unique issue that doctors called a spastic colon when I was a child. The present day diagnosis of IBS with D/C does not do this justice!!!

Over the last couple of years the twist has gotten worse and I have seen senior colo/rectal surgeons in NYC who say it is too dangerous to operate. I do pretty well living with it except for the Pred which has always irritated the colon but also the colon has twisted more since I started on Pred. Docs do not see that as causal only unfortunate.

I guess I am trying to ask if I should try some kind of faster taper to get me back to 2mg where I was ok until the foot thing started. And yes I also have had scans and consults with podiatrists , orthopedists, all foot and ankle specialists etc. who had also given shots in feet and ankles in the winter. They helped but I was also on Pred and it made me race and rage.

Today I am taking no prednisone because my colon is so sore and that scares me. Mon Tues Wed I did 4.5 and on Thurs I took 5 mg. I am wondering if I should try the original 2 again or is that too low and I risk flare and/or adrenal issues. I know I can't do 4.5 or 5. I imagine 2 or even 3 is also risky which I could start tomorrow.

I know this is a lot and that there are no magic answers. I'm just not sure I am thinking clearly about it and yes that is impact of hyoscyamine (colon meds) which is another issue. I am also allergic to all opioids and have other strange reactions to meds from other conditions, e.g. like Buscopan unfortunately.

Again thank you all!! I know there is no magic answer to this but maybe something more logical than I am thinking to try!!!

[DorsetLady PMRGCAuk volunteer in reply to bluegirl7]

Think it's risky trying to drop to 2mg in one go - for adrenals as well as the chance of flare..

You could try a week at 4.5mg, following week at 4mg, then repeat with 3.5mg, and then 3mg...

but it's a risk - and as I said earlier you have to weigh up what is causing you most problem.. and no, there is no easy answer.

[SnazzyD]

It’s so hard when one’s symptoms become a fog and you don’t know what is what and what helps what. Presumably one of the doctors was a podiatrist? Is there a direct link with the Pred dose and your foot pain?

when you say stomach pain, do you mean the actual stomach under the ribs or lower down the abdomen or both? Are you taking a proton pump inhibitor?

Have you considered you may also be sensitive to casein in milk, not just lactose? I’m better with lactose free but I can’t have them much. What is your unique form of colitis?

[PMRpro Ambassador]

Silly question maybe but why France if you have an Italian passport? Just wondering - given the potential right swing in France ...

[bluegirl7 in reply to PMRpro]

Hi my mother and all grandparents born in Italy. They came to US on 1920 Mother was always afraid during WWII she would be sent back!! Lots of prejudice in America at that time and mother wanted to protect me from that. So although we spoke dialect at home to Nona my mother sent me to a French school and when Nona died no more Italian at home. This is the very short version so I speak French and not Italian. My husband and I spent our summers in south of France last 35 years so there are many friends there etc. I love France and am quite concerned about the politics hence not rushing to sell house and buy in France. Italy is in my blood and I love it and visit often but also concerned about emerging fascism there and not thrilled with the leadership. So again the short version,

[PMRpro Ambassador in reply to bluegirl7]

Meloni has been a very interesting surprise - more support for the minority regions like us in Alto Adige/South Tirol which is good. Will be interesting to see what effect the UK elections have too

[bluegirl7 in reply to PMRpro]

Hi I know this isn’t a place for political comments but since you mentioned this all I can say is I wouldn’t trust her as far as I could throw anyone with fascist and anti-Semitic and anti- gay anti- abortion views. If my family were still living they would talk about how Il Duce led them on with promises of “improvements” and then …

They actually knew him well as a young man. But anyway her response to Macron’s greeting was also tasteless and embarrassing for a head of state. No Elizabeth II tact and grace in her!!!

Good luck with all that. I wish you well and safety always. You are a remarkable wonderful woman!!

[abby78]

Sorry to hear the Prednisone is causing you stomach problems. My doctor put me on an acid blocker Omneprazole because I was on 40 mg daily of Prednisone for quite a while. I am now weaned off of the Prednisone and am having no stomach issues. I hope things get better for you.

[bluegirl7 in reply to abby78]

Hi Abby,

My problem is not acid reflux because I am medicated for that - it is lower colon issues with very painful cramps and spasms. Thankyou for responding and I am glad you are off the Pred. I was down to 1mg last year and my body was doing so much better in other areas.

But as we are told PMR doesn't like goodbyes!!