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Does mepo injections really help lower steroids

Lisacharman
Lisacharman

I have been on pred since jan we were on reducing from 40mg down to zero but we only got to zero for 4weeks then I have just had 23 days inpatient 3 itu admission in this cut long story short saw asthma consultant Sunday she has said that we have been trying to reduce steroids every 3 days but it didn’t work we got to 25mg and nearly put me back in hospital as peak flows were 50% sats were under range even on niv 20hrs a day so she has said my body is not ready for reducing steroids so she has put me on 40mg and try over the next 30 days to get to 30mg and stay on 30mg she has now referred me to have mepo injections she said it might help me to reduce the steroids and due to how bad things got in hospital I contracted acinetobacter when the intubated me day of admission which caused pneumonia and I stopped breathing and was revived but left me with hard lungs and on niv day and night still have biacarb and high co2 got to have gasses done in a couple of months to check the niv is also working but I now can not be mechanically ventilated due to what’s happened which scares me and sort of got forced into putting dnr on records which I am now not sure I want on there but I can’t find anyone to take it off sorry about long post just really worried xx

4 Replies
oldestnewest

Hi Lisa sorry to hear your situation...I was on mepo after being on 40mg steroids for 2 years and being on ecmo in 2016....I haven't been able to reduce my pred below 35 as i go down fast ...whilst being on mepo I was ventilated ...I am now on reslizumab and still the same ...just discharged from hospital following another ITU admission ....it really all is down to the individual body's response ..

Nightmare x

I’m on Mep and down to 3mg per day pred. I have been in a 5mg maintenance dose for last couple of years , it sounds like you need to cut down very slowly , like 1mg a week then that will give your body time to recover . Ive now got low cortisol levels due to my body not making its own , that’s just being looked into . Have tried taking magnesium , vitamin d supplements as this as helped me greatly , cut our sugar and wheat from your diet

Lisacharman
Lisacharman
in reply to Shellc

I don’t have wheat anyway just as I don’t like bread or pasta and sugar I rarely have as I don’t have a sweet tooth so I am lucky that way I have low appetite so I have to take multivitamin with iron I take magnesium zinc vit d as I am lactose intolerant and wasn’t diagnosed until late 20’s so I had no bone protection I also acid to protect my bones

I also take alendronic acid as well for bones etc I am so concerned being on 40mg daily of prednisilone

Hi Lisa I am sorry to hear you are having a really difficult time. You are not on your own and everyone on this forum will be thinking of you. I am 🍀. I was able to come off Pred all together when started Mepo. It seemed to ‘cure’ me overnight (and I say this in a whisper 😄). I still get traces of a cold - sore throat, sniffles, sneezing but 🤞 after one year I am exacerbation free 🎉. I sometimes have to pinch myself. There are 6 types of medication in the “umab” category and because everyone is different, it may take them time to find the one right for you. I know how thoroughly exhausted and helpless you may feel. This is normal and when you feel low try to be kind to yourself and allow yourself to grieve for the lost you. Do not allow anyone to force you to do anything. Be strong and firm. You know what you want so don’t be afraid to say. I know that this can be difficult 🤗. My thoughts and prayers are with you x

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