Osteoporosis

I once had osteopenia but I reversed it by walking uphill on a treadmill with a weighted bag on my back. I also regularly take vitamin D but I'm not currently taking calcium (I'm currently relying on diet for calcium). I have Dexa scans every few years, and once I'd reversed the oesteopenia it stayed that way, but I'm due another Dexa soon, so we'll see.

poopydoop said...
Yes I got severe osteoporosis in my spine. I have to take drugs to manage it. I was on steroids for 2 years in total, most of that time was presnisone at doses between 5 and 15 mg. I took calcium and vitamin D every day during that period too. Am due for a dexa scan to see if it has improved in the last 3 years, but with covid the hospital keeps delaying it.
Because of my experience I am one of the more vocal people on this forum in expressing the need to avoid long term or repeat courses of prednisone.

Does it shorten your life expectancy

Was on Pred many times in my 32 yrs of Uc. No arthritis/bone issues ever. I'm a lucky one

"How do I avoid steroids when the drs say they’re my only option?"

look for a doctor that isn't an idiot -

TT

poopydoop said...

Theanxiousaries said...
How do I avoid steroids when the drs say they’re my only option?

You always have a choice and options. Noone can force you to take steroids. You're on azathioprine now. That generally needs a few weeks to 3 months to start working. They may advise staying on pred a few weeks to bridge the gap. If i understand correctly you'll have to give the azathioprine a shot before they let you go on biologics. It might even work for you. I have a friend (actually my friend's husband) who was on azathioprine for 5 years then came off it and has maintained remission for 3 years since stopping.

I took my last 5mg yesterday. Got emotional, shaky severe nausea, extremely anxious. Rang my GI told him my symptoms were gradually returning. Abdominal pain and blood. He said back to 35mg prednisone,taper 5mg a week. Stop imuran. He will apply for entyvio. I’m really struggling emotionally dealing with my illness. I want to make the right decision for my long term health. I want to be here for my children

VanJordan said...
I used DHEA and pregnenolone while on prednisone to avoid serious bone damage, and it worked. It's unfortunate that MDs don't recommend these to people as a matter of course anytime steroids are used. It could spare people serious damage.

Is it safe to interact other steroids? I asked about a natural hormone cream while on steroids and they said No they interact

I have had anxiety issues in the past and say this speaking from past experience: sometimes when our anxiety is really high it can affect how we respond to treatment for other conditions. I think if you’re not on an anti-anxiety or -depression medication it could really help you deal with your UC better. And your anxiety can definitely be at least partly caused by your disease. There is strong evidence (not a lot of understanding tho) about the gut-mind connection. My GI sat me down and explained to me —in very scientific terms that I don’t recall the names of now—how gut inflammation increases the number of an enzyme or protein in our guts that can deepen anxiety or depression. This was when I was at my sickest. I started taking antidepressant and it really helped me a lot.

I say this because prednisone can mess with your mental state too and you do sound as if you’re at your wits end. I’ve been there and I understand. I do strongly urge you to consider this. I hope you don’t think I’m saying you’re doing something wrong because you’re not. It’s just another tool that can really help you deal with the awful life altering effects of this disease. I stayed on my antidepressant for about a year and then was able to stop taking it.

I have my fingers crossed that entyvio works as well for you as it has for me.

Thankyou all. I appreciate your advice. Flower gal I know you’re 100% right. My anxiety is overwhelming me more than anything else. I broke down to my husband last night because I know my anxiety is destroying me. Even my worst days are made 10x worst because of my anxiety. I believe all that you’ve said about mind/gut connection. I know this to be true. I think it may be time I seek help for my anxiety which has only gotten worst since my diagnosis. I’m also nerovous I haven’t given imuran a chance. The nausea is tolerable. It’s only been 3 weeks. My GI gave me a quick call on his way out of the country for his holidays. I said I’ve gotten worst. More cramps and bleeding. He just said stop, he will apply for biologics. That could be weeks away. My next consult is on the 14th of January. I’m almost tempted to keep going until his back but then going against his advice will not go well if I get worst. I will start having relaxation massages and intend on learning meditation as well. These are things I wish I had done before I got to this point. Old hat you are absolutely right. My daughter constantly tells me to stop taking on other people’s experience which I know I do. Thank you all again

poopydoop said...
Since you've already started it, and you can't start entyvio for a few weeks anyway, I would give the azathioprine at least 6 weeks.

DHEA and pregnenolone are both hormonal supplements and DHEA is an androgen - I wouldn't want to touch either as a woman (and pregnenolone lists anxiety as a possible side effect).

When i was in a long flare and on prednisone i remember my emotions being all over the place. It helped to see a therapist and go through my fears logically step by step, in order to break them down. But sometimes.... it's ok to just feel what you're feeling...and be kind to yourself.

about the osteoporosis: yes I am a small-boned woman. I am also on birth control which probably made it worse. I was 36 when they diagnosed it.

I am also small boned 4”9 and 48 kg. What is the prognosis for you? Does it shorten your life span?

TAA, when was your last Dexa Scan & what was your score? If osteoporosis is caught in the early stages it can be reversed. I have osteoporosis in my spine & did Forteo injections for what seemed like forever. It did help some, however, over time I went from 5"2" to 4"11". Vitamin D3, I get my calcium from food. I do not supplement calcium because I have a history of kidney stones.

Flowers is right about the brain-gut connection. My gi told me basically the same thing. There has been a few occasions in the last 7 years that my stress level was way up there. I am not talking about getting stressed for a few days. The first thing that happens to me is it affects my gut in a nasty way, I end up with explosive diarrhea & cramping from hell. It takes lots & lots of patience & consistency to manage stress & anxiety.

At my sickest & worst time my dr put me on Buspar, it worked on the depression & anxiety. I stayed on it for nearly two years & also went to therapy once a week. This was my pcp that did this & my gi was onboard with it too. I was able to go off of it. An antidepressant can be a game changer.

Is your gi aware of your anxiety? If he isn't aware of it, with you telling him you thought you were worse, this is why he said to stop the Imuran. You can stay on it & tell him you think your anxiety is triggering some of your issues, he should understand that. If I remember right, you are almost a year into this flare, that's a long time. Three weeks of Imuran is not long enough to know if it's going to work or not. It's a slow going medication, same with Entyvio. Considering the length of time you've been flaring none of these medications are going to give you immediate relief, it's going to take time. Please don't fall into the trap of it's not working because I'm not better in a few weeks, this is how people burn through the medications too fast. It took 6 months of being on Remicade before I could really tell it was working. I had some improvements but nothing drastic at first. Unless a patient gets worse, my gi keeps us on a medication 6 months before trying something new. I understand you are in Australia & things are different over there.

Think about seeing your pcp for an antidepressant. Take care.

Yes the anxiety is physiological and the gut brain connection is real. At the same time, I get really triggered when people take that the other way and think that colitis is psychological - I had a very senior yoga teacher tell me "You don't have a bowel disorder, you have an anxiety disorder". The ironic thing is I needed a lot of therapy to be able to process these kind of comments (and understand that they are not true).

FlowersGal said...
Wow! Just … wow!

I am truly mystified of how ignorant people can be. 😳

The therapist said it's because people are afraid of things they cannot control (like: a chronic illness which just appears without any explanation...) so they make up reasons for other people's illnesses. Then they are in control again (i.e., "I won't get sick with this disease because I am not doing X/Y/Z"). In the end.... she made me comfortable with the idea that i am doing enough for myself, if i to go to my dr appointments and take my medication (it sounds funny when i write it down, but I was living in a world where everyone tried to blame my illness on diet or psychology problems). That helped to bring my anxiety down. Mindfulness and meditation aren't really my thing - maybe because i remember doing meditation in yoga class and all i could think of was how much i needed the toilet....and then having to disturb everyone else's meditation by running out the room to the toilet...
Sorry to the OP for the digression here 😳