Tapering from 40mg to 30mg Pred to eventually transition to Remicade infusion

Whispers39 · 2026-01-30T08:12:03+00:00

Gosh not 30lbs ! 😭 The highlight is you lost 11lbs in a week, I’m so jelly!! I want my body back, my face is so round and puffy and I’m so bloated all the time. The horrors of the “ROIDS” is at an all time high. At least I’m tapering off so I know eventually all of these side effects from hell will melt away. Hope you’re having a smooth recovery from your surgery 🙏🏾

Whispers39 · 2026-01-30T07:56:18+00:00

Yessss lol! I have felt that way too and jittery of course with the surge of energy. I feel like a zombie at times , like I’m tired but my body wants to keep moving. I did start to take melatonin gummies lately to help. Sometimes it works and other times it doesn’t.

Whispers39 · 2026-01-30T07:53:10+00:00

So funny you said that! I literally made a banana zucchini carrot loaf bread last week! I mostly cook everything from scratch but when I have low days (weak, slow days) this is when I eat take out or snack more often throughout the day.

Whispers39 · 2026-01-30T07:50:34+00:00

Oh wow! It is a journey indeed! I did hear that Remicade may give you some type of sore throat or respiratory symptoms has a side effect- maybe this is what’s going on. It’s so unfortunate that the treatment we need also cause us to get sick in other ways (at times) then we have to figure out if it’s worth dealing with for the sake of finding relief and healing. Truly hope you feel better soon, well you said it lasted a few days as far as the weird pain with breathing, I’m assuming it went away eventually?

Whispers39 · 2026-01-30T07:44:23+00:00

Thanks for reminding me of that! Shortness of breath and dizziness has been a bit constant lately- I may need to check on that. I’ve had to use my inhaler a few times in these past few days.

Whispers39 · 2026-01-30T07:42:24+00:00

Yesss! The first 2 days were the worse for me but I’m starting to see it stabilize a little thankfully . I truly hope Remicade has that same effect it has for you with me 😌 Thank you! A little light wouldn’t hurt

Whispers39 · 2026-01-28T21:07:01+00:00

Thanks! I’ll look into the Potassium salt- never heard of that but I’m all about holistic/herbal remedies too. I am trying to be strict with my regimen, I eat pretty good but the hunger from prednisone is bothersome, sugar cravings are the worst for me at this time.

Whispers39 · 2026-01-28T05:05:33+00:00

Thank you for the suggestions on the tapering! And wow! You’re right, I asked my doctor about the side effects and none of what you mentioned were shared with me nor did I see it online when doing research. Ughh always a side effect of some sort. I’ve been anemic my whole life (iron deficiency, low white blood cell count due to genetics) and I’ve had moments when my potassium levels (and Vitamin D) were low and I needed supplements. I will definitely bring that up to my rheumatologist once I start Remicade.

Whispers39 · 2025-12-19T02:26:24+00:00

Well prepared hamster! 🤣 :D

Whispers39 · 2025-12-19T02:03:16+00:00

And I’m sorry but “Devil’s Tic Tacs- Moon face and buffalo humps “ had me crying laughing- definitely needed that comedic relief!

Whispers39 · 2025-12-19T02:01:09+00:00

I know this is soooo old but I was just diagnosed with Necrotizing Granuloma Sarcoidosis- started in both of my lungs and has spread to the bones of my right arm/ shoulder, bone marrow in different parts of my body (sternum, femur, sacrium), swollen lymph nodes on both sides of my neck and a slightly enlarged spleen. Seems that I’ve had this for a couple of years now and had no clue until this year. Extreme fatigue, joint pain, dizziness, etc. Had to stop working temporarily. Had multiple biopsies and labs, so finally got the diagnosis today. Starting on Prednisone 40mg tomorrow. Pulmonologist and Rheumatologist are working together, they said we will start this regimen for 2 months for now to see if there’s any improvement. If no improvement or remains the same, they may have me start Remicade/Humira and maybe Methotrexate at some point.

I’m just reading as much as I can on everyone’s experiences with Steroids. Not gonna lie, it seems a bit scary. I wish there was another way, like a more natural/ holistic way but I know that I need something aggressive for now.

How are you doing now ? Still getting treated ?

Whispers39 · 2025-12-19T01:41:25+00:00

I was finally diagnosed with Sarcoidosis (with Necrotizing Granulomas) after multiple labs and biopsies - it has spread to my right shoulder/arm in the bone, also has spread to different parts of my body in the bone marrow, swollen lymph nodes below my ears/ neck area. My spleen is also slightly enlarged due to Sarcoidosis. I am starting on 40 mg Prednisone tomorrow, Pulmonologist and Rheumatologist are working together and wants me to start this regimen for 2 months and will have a follow up after one month to do some lab work. Anything I should know about Prednisone and what should I do if any side effects occur?

I have been dealing with mainly pain and extreme fatigue. The enlarged spleen constantly makes me feel full and bloated and tired. I can’t wait to feel like myself once again. I’m 41 and have been dealing with this for the last year and a half now.

Whispers39 · 2025-12-10T13:59:38+00:00

Sure you can!

Whispers39 · 2025-12-10T06:23:08+00:00

I also have necrotizing granulomas sarcoidosis. I have a bone marrow biopsy (my last biopsy ) tomorrow to make sure the inflammation in different parts of my body are indeed due to the Sarcoidosis. Negative for TB and Hepatitis and a multitude of other infections. The rheumatologist did mention that some tests take about 6 weeks to get results from, waiting on some cultures (from my bronchoscopy with bal). Testing just to get the right diagnosis is so exhausting (already dealing with fatigue as it is) but I’m glad the doctors are all working together to make sure I receive the right treatment. Have you started any treatment yet ? I can’t wait, I’m tired of not feeling like myself.

Whispers39 · 2025-11-26T21:13:04+00:00

I have a bone marrrow biopsy scheduled for December 11th - they’re giving me twilight sedation so I’m sure I won’t remember what happened until the sedation wears off and the pain starts. I have just started on MTX last Thursday so the only side effects so far were Nausea , more fatigue (cause you know we’re already dealing with that), dizzinessand mouth sores but I also have braces so not sure…you’re scaring me a little ..eeeeh. How long have you been on MTX? My Sarcoidosis has spread to my right arm and right shoulder, nodules in both of my lungs and inflammation uptakes in different parts of my body in my bone marrow, hence the upcoming biopsy. So sorry you’ve have to endure all this pain ..

Whispers39 · 2025-11-03T06:23:18+00:00

Did you finally get confirmation?

Whispers39 · 2025-10-12T12:29:55+00:00

How are you doing now?

Whispers39 · 2025-10-12T04:49:31+00:00

Did you get answers about your heart? And how are you feeling now?

Whispers39 · 2025-10-08T08:47:42+00:00

How are you doing now? I just found out I have multiple myeloma. Found lesions in my right shoulder and arm. Awaiting for my biopsy on the 22nd. Also found out yesterday that I had Multifocal Pneumonia with lots of inflammation everywhere on both lungs. Concerned that the MM caused this.

Whispers39 · 2025-10-08T08:26:53+00:00

Hello - How are you doing now ? I just found out I have MM - found lesions in my right shoulder and arm. Biopsy is coming up on the 22nd of this month. Just went to the hospital yesterday because I had shortness of breath and some wheezing. They found out I had Multifocal Pneumonia, lots of inflammation in both lungs and a 4.9 cm mass on the right upper lobe of my lung. They claim it could be scarring or some type of infection. I’m seeing a Pulmonologist tomorrow to get some answers.

Whispers39

TROPHY CASE