Tapering down the pred!!

[NatashaChampion]

Hi, any quick advise would be really useful as I really don't know what to do right now...

I started on pred on 27th jan on 40mg a day! Last week I started to taper down by 5 each week. So today was my first day of 30mg.
I have had just over a month with no blood however I have just noticed some when I went to the toilet!

I really don't know what to do?

My consultant said that I can control how much pred I'm taking meaning that I can move back up to 40mg a day but that means I have to start the taper all over again! I don't really want to go back up again if I can help it because I don't want to stay on steroids any longer than I have too!?

My have got a GP appointment but not until the 20th of march and I'm not sure what I should do?

Any help would be great x

 

[nitty]

Hi!

When I needed pred I started on 40mg for a week and within a couple of days of the 35mg dose starting my symptoms began getting worse again. I phoned my consultant's secretary (it was the consultant who had prescribed it). She was able to pass on my message and got back to me with new instructions.

I went back up to 40mg for another 2 weeks then started tapering down again from there, and I had no further problems. While I was on the pred I started on Azathioprine, and so far things have been progressively improving all the time.

Perhaps you could speak to the GP by phone or ask the receptionists to pass on your question - it could be that you may need to go up to a higher dose than the 40mg to really stamp on the inflammation.

You are better off going back to a higher dose for a little while to get on top of things, otherwise you might always struggle to get things under control. I know it's no fun on steroids, but try to thing of the longer term benefits.

Good luck.

Nitty X

 

[araceli]

My suggestion will be the same as nitty's. It seems that inflammation is coming back and it is important to control it. I hope you feel better soon.

 

[NatashaChampion]

Thanks for the replies, im gonna stay on 30mg for another day and if nothing improves I will call the doctors tomorrow morning!
Even though the doctors are like come in any time I still feel like I am being left to deal with it alone!
Thanks for the advice xxxx

 

[Scorp14]

I was started my journey October 2013 and been on Pred. + others for about 3 months.

I was prescribed Methotrexate injection about 6 weeks ago and told to taper off the Pred. Was at 40mg per day and less 5mg per week. Bleeding was under control for few weeks and as I dropped down to 30 mg, symptoms are coming back, frequent bowel movements with mucus and blood.

Called the GI office yesterday as I have an appointment March 21st and asked what to do. Haven't had any call back from the doctor as yet but I want off the steroids too and plan to stick with tapering off for next couple weeks and see what she says when we meet.

 

[Jag23]

I found it very difficult tapering down. It wasn't until I got put on Humira as well that it actually started to work properly.

I would get to 20mg and then have to go back to 40

Good luck

 

[NatashaChampion]

I have never heard of methotrexate or Humira? Are they something i should enquire about?

I think im gonna go back up to 40mg for another week, i havent felt abdominal pain like this is ages and i have been to the toilet more times today:/ going to call the doctor tomorrow anyway and see what they say xx

 

[Scorp14]

Methotrexate, Humira, Remicade etc. are commonly used here in North America. I am sure they have similar drugs in UK that are used.

I self inject Methotrexate weekly and suspect with my recent flare up with reduced Pred. they may consider Humira which is a biologic med. But that's another ball game of treatment.

 

[NatashaChampion]

Ah okay, do you think they are something I should mention?
I have decided to go back up to 40mg from tomorrow x today was too painful xx

 

[Scorp14]

I often get advice from my cousin in the US, she has RA and similar treatment and sometimes the medicine she hears about is just not available in Canada but I still ask.

p.s. My GI called me back today and suggested I up my Pred. to whatever level I was feeling better. I was down to 25 mg but will go back to 30 or 35 mg tomorrow maybe even 40. Seeing her in two weeks and will report my findings.