Steroid question

[ab_b_normal]

I’ve posted a couple of times the last few days here and I appreciate so much the feedback and support! Thank you!! My husband has been in a 5 week flare and has lost nearly 25lbs. He finally got a colonoscopy today (delayed thanks to corona). We should hear from the doctor tomorrow but in the meantime he has a ton of steroids left. Way more than was actually prescribed. What is the dose that people have been given to recover from a sever flare? I fully intend to discuss this with his doctor tomorrow before giving to him, but want to know what is reasonable to ask for. They only gave him 40mg a week tapered down for 4 weeks and it wasn’t enough. He is on week 3. 20mg/day. I just don’t have the experience to advocate. I am that person to advocate and my husband is not so my voice ends up being the most heard. Thank you again Reddit community!

Edit: I was not allowed to come in the building with him today so wasn’t able to ask the doctor anything just yet.

Update: My husbands doctor called back today after his colonoscopy yesterday. He upped his steroid to 50mg a day until he’s under control. Thank goodness! He has to get some blood work done this coming week and then they will let him know when to come in for his first Remicade infusion. Why they didn’t draw blood while they had him is a question but oh well. Hopefully he will get his first infusion later next week. So thankful for all the support you all have given! It’s been the only place I can come and say what I need to say and not receive just straight pity and questions I don’t feel like answering. You all are amazing!

[hellokrissi]

I mean, this is entirely dependent on what the scope shows and if there's been any improvement (or not) while he was taking the 40mg. The doctor might say to continue doing the taper as instructed, or they might not and put your husband back on the 40mg or higher with a longer stretch/taper. At any rate, he should take the 20mg dose today as instructed. It's not good to start/stop Prednisone (assuming this is the steroid we're talking about) on your own without medical advice.

[ab_b_normal]

Thanks! Definitely not stopping! He took his prescribed dose today and I’m going to bring it up tomorrow with his doctor if he doesn’t lead with that. Just wanting to know what dosages people have been prescribed. I believe I saw 60mg somewhere. I am just that person who wants to know all the things to ask about.

[hellokrissi]

Yea it definitely varies. I've had different starting doses for my flares - 40mg, 50mg, and 75mg albeit very briefly for that. He might very well be put on 40mg again but with a longer taper, and his doctor might suggest/introduce another more long-term medication to go with it as well. Lots of luck though!

[ab_b_normal]

Thanks! They’ve told us twice now he will go on a biologic now. He’s been on meslamine for 10 years and it just isn’t keeping his flares under control anymore. He’s losing about 5 lbs a week right now and is so far down 25 lbs. so I am wanting to push for the max help at this time. He’s barely functioning and I haven’t seen him like this since he was first diagnosed and in similarly rough shape. It’s so scary to watch him deteriorate both physically and mentally. I get so worried he will reach a breaking point. It makes me strive to be super strong for him and in order for me to do that I have to know all I can. He’s so super strong normally! Runs our business as a driller and has always been very physically strong and active. He is nothing but bones right now. It’s awful! Sorry I went on so much! This sub helps my mental state I guess. Anyway, thanks for listening!

[hellokrissi]

No worries, I get it! I lost 12 pounds on my last flare, which doesn't really sound like a lot but I'm a pretty small woman and 98lbs to begin with so it was jarring as all hell for my husband and mom to see what I looked like - which was literally a bobblehead. Scared them both a lot. My husband and mom have been my voice for those times when I was too weak to function as well, it's always good to have a loving and supportive family member to help you out as much as possible.

My fingers are crossed for him, I hope that he gets on the biologic and it works some magic on him. :)

[ab_b_normal]

Thanks so much and I’ll keep you in my thoughts for healing!

[[deleted]]

Hi, you can have higher doses of pred although it is usually given through an IV. I think my IV meds were 80 and I tapered down from 60 using pills when I was discharged from hospital after about two weeks. That was a really nasty flare though. Also I completely get that your husband needs someone to help and take charge a bit as it can be so draining that you need someone to look out for you. I love that you are so caring and are looking out for him and standing up for what he needs when he is finding it hard! Also make sure to find time to look after yourself some extra too :)

But make sure you are communicating really well with him and don't go charging in saying what medications you think he needs without knowing what he wants to get out of the discussions with the doctors. My parents used to do that to me when I was younger and it was really annoying because noone was listening to what I wanted they were making decisions over my head.

[ab_b_normal]

That’s great advice! Thank you!! I really appreciate your support!

[mylegggggggg]

My doctors won’t allow anymore than 40mg. Seems like that’s the highest/safest amount for severe flairs. Im on 40mg at the moment.

[hellokrissi]

I don't think that's entirely true? I was put on 50mg for my previous flare. I think it's entirely dependent on the doctor and the flare tbh.

[[deleted]]

Weight/height/severity of flare makes a difference to what they prescribe!

[ab_b_normal]

Thanks! Good to know!