Severe asthma and withdrawal of Prednisone

[poeticlady]

I am on my 6th injection of nucala.have reduced my daily dose of Prednisone from 40mg to 25mg. But feel awful with fatigue .any new out there that feels the same.

[LJGB]

The fatigue is really hard especially if you’ve been on prednisone for a long time. Drink plenty of coffee and tea to make up for the adrenal insufficiency you will be experiencing until your body adjusts to the new dose of prednisone. Any time you wean do it as slowly as possible. I always want to get off prednisone in such a hurry I end up with terrible fatigue. It will go away though. Hang in there!

[poeticlady in reply to LJGB]

Thank you for your reply.I have been on 40mg prednisone for 15yrs.started on doses to get me of of trouble and hospital.But then slowly had to have maintenance dose.I don't drink tea or coffee much.never have done.really feeling wiped out..

[Shellc in reply to poeticlady]

You need to tell your docs as you have been on pred a very long time , it can be quite dangerous to have very low cortisol , I went from 5ml every day for about two years and cut them to every other day and I symptoms were awful, I was sent to see endocrinologist, the doc said I should never have done every other day as can cause adrenal failure if not cut down properly supervised . So please if you feel that bad you need to speak to doc about this

[poeticlady in reply to Shellc]

I think I will ring the severe asthma nurse's at the hospital who give me my mep injections..never heard of low cortisol levels.thank you.

[Shellc in reply to poeticlady]

What hospital do u go to ? It was my consultant who pointed it out to me when I complained of the pains , he did a random cortisol blood test which came back low, then I told him about cutting the pred down so he sent me to endocrinologist, I saw them within a month , they have just done a more accurate test which I’m awaiting results for , I’m on 3mg a day so have some every day and do feel better, I just pains in arms now which I think is the mep

[poeticlady in reply to Shellc]

Wythenshawe lung centre.think I am running before I can walk.was so far excited about the opportunity to get off the steroids,as I am insulin diabetic,due to them.thank you so much for your input.

[Shellc in reply to poeticlady]

The same for me too please let me know how u get on as you will have to come of real slow , if you get no joy from asthma nurse , mention ASAP to doc, how has your breathing since being on mep

[poeticlady in reply to Shellc]

Breathing has been much the same,but copable.I took that to be my body struggling with the lower dose of Prednisone.GET my full bloods etc done in 2weeks on my 7th injection. How have you been on it ?

[Shellc in reply to poeticlady]

I’ve just had my 7th about 10 days ago and beginning to see improvements with my breathing but I also changed my diet for no wheat and sugar and taking vitamin d and magenesium which all seems to be a Winning combo, my only thing is the very painful arms, it’s something I don’t think I could live with it, but I’m determined to get to number 12 and review with my consultant

[poeticlady in reply to Shellc]

I so want to see it out to the 12th too. Will let you know how I get on.

[LJGB in reply to poeticlady]

Oh wow, I’m sorry didn’t realize it had been 15 years. Prednisone suppresses adrenal function after just 3 weeks of use. I’m sure you are having true adrenal insufficiency and might be incapable of producing cortisol for awhile...this would require cortisone injections which will make you feel a whole lot better! This should be managed by an endocrinologist. I would ask to your primary or immunologist for that referral ASAP.

[poeticlady in reply to LJGB]

Hi.I have never heard of adrenal insufficiency.and yes it has been so long on the 40mg dose.Many years ago I did get down to 25mg but ended up hospitalized.I thought with taking men injections I would fair better this time.my breathing is holding its own for me.but these pains and fatigue are not good.I shall contact the hospital in the morning.thank you

[poeticlady in reply to poeticlady]

Mep not men lol

[LJGB in reply to poeticlady]

Absolutely. The mepolizumab will certainly help with your airway but not with the adrenal insufficiency. It is dangerous. It puts you at risk for getting sick. I would contact go see someone tomorrow. Good luck!

[Bettz in reply to poeticlady]

Try Mountain Dew - it has lots of caffeine

[Shellc]

U may need to cut the pred down slower as your cortisol levels may be dropping very low due to your body not making its own because of the pred. I have been having trouble coming off 5mg daily of pred. I’m just being tested at the moment for low cortisol , makes you feel so fatigued but st the same time I found the mep injection caused the worst fatigue I’ve ever had , I’ve just had my 7th injection and the fatigue is not do bad , what I am finding is that I have really bad pains in both arms which I’ve been told is tendinitis, but am thinking it could be the mep as I foul to see it too incidental to be both arms

[poeticlady in reply to Shellc]

Yes I agree with the awful fatigue.I just ache all over.plus I have had leg and ankle swelling which has been reported and flagged up.

[Shellc in reply to poeticlady]

Yes I had all the aches too , I started taking magnesium and a magnesium spray which did help the pains a bit

[goat-lady in reply to Shellc]

Yes I have found magnesium supplement v v helpful. When I was on prednisone last time I was walking really oddly as my thigh muscles kept locking!

[Waldorff]

That seems a big jump after such a long time at 40mg. No wonder you’re feeling fatigue! I take pred as tapers a lot and after only three days at 40mg, I’ll go down to 30mg for three days etc.

I have heard it can certainly be dangerous, especially if you have an accident or surgery.

In my humble, I think you need to go back to the doc and reduce at a slower rate. You can ‘tough it out’ but I know it’s no fun - just the malaise is so frustrating.

Very best of luck.

[poeticlady in reply to Waldorff]

THANK you for your advice.yes I agree that maybe a slower pace but I was so excited to finally get to try something that would actually get me to a much lower dose of Prednisone.I have had terrible side effects from my long term usage.

[goat-lady]

Have been on and off prednisone at various doses for a couple of years. Now off totally and refusing it unless life or death! Coming off was awful- the lower the doses the harder it gets. I read a really useful book - "coping with prednisone" by E Zukerman and J Ingelfinger. Go slow, see your doctor and good luck.

[poeticlady in reply to goat-lady]

Thank you. I shall look it up. I dream of the day I can say I'm prednisone free.

[Hidden]

Reduce 10% at a time for 4 to 6 weeks so if you were on 40mg get down to 35mg max for 4 to 6 weeks etc

Have a blood cortisol checkup.

[poeticlady in reply to Hidden]

Thank you. Yes slow is the way.

[poeticlady]

So I have been in contact with my specialist team. And I have to stay at the dose I am on now 25mg but having full review and bloods taken two weeks time.this is almost 7months since I started keep injections.and whilst I reduce to 35mg then 30mg .my body is not coping with 25mg .will give an update as soon as I can.thank you so much for your kind advice and information x

[Shellc in reply to poeticlady]

That’s good , let us know how u get on x

[poeticlady]

Just an update. I am had all my bloods done. Everything ok. The side effects are normal due to the withdrawal of prednisolne. It will be all worth it in the end. Thankyou all for your input. X