Can't Seem To Get Off Of Prednisone

Correction____I have only been on Humira for eight weeks, not eight months. Sorry!

 

Hi, BadDay,

Yes, I have tapered this way and that! LOL Just seems like less than 10 mg and I don't function well. I have been taking prednisone off and on...but mostly on, for a year and a half now. I hate the weight gain, too. Ugh

BTW, how are you...when is that appointment with the blood specialist?

V

Hello Vannie, I was never for a long time on high doses of Prednisone - exluding Medrol packs I needed to take few times during my flare ups. I was for around 8 months on 5mg Prednisone every day and then tappered to 2,5 every day. Currently I am on 2,5mg every other day. But once we tried with the doctor it failed and after Medrol pack I needed to stay on 2,5 every day again. After 3 months we tried again and here we go - I am on 2,5mg every other day. Never loose your hope! I was so disapointed too at the first time when failed and was scared to try again but thankfully it worked. I think you need to be more patient with Humira - 8 weeks is still not a long time. Wait at least 2 months longer and always check with your doctor on the Prednisone - what is he saying? Mine took me from 5 to 2,5 mg after around 6 months after being on Humira, I am 1,5 year on Humira and still on the Prednisone - it takes time... The goal is to get rid of the Pred at all, I am hoping the day will come finally :)

Best wishes!!!

Hi Vannie

LOL well still waiting for apointment but one good thing is i have lost Heaps of weight so far up to about 15kg(33 pounds)

ha id sugest the Leukimia weight loss program, Medications put the weight on & medications take it off - see their is Light at the end of this Tunnel

But OMG i Can't Stand (& My Hubby Can't Stand) the Night Sweats or better called the Night Swims i literaly Pull of my Night shirt struggeling -have you ever been soaked wet in rain and tried to get a tight shirt off? it sticks to you, i change the sheets Every Day-well Hubby Dose and he Can't hug me he goes oohh Cold Clamy Wet !!

But otherwise all going as Normal

Thanks and Keep trying with the Prednison you will find a level you can coast along on for a while.

Take Care

Hi -No just monitoring Blood results & waiting appointment.

Hi Vannie, I can't seem to stop taking pred either, even though my hair is starting to fall out and I think it is even giving me high cholesterol..I'm only supposed to take 5mg per day, but sometimes I take more than that depending on the pain level of the day and my rheumy is not happy about it at all.

Hi Vannie,
I was taking 20mg of prednisone for almost 2 yrs and when I tried getting the dose down it was torture and I would get double sciatica screming down both legs from lower back.

I eventually got down to 5mg and I also switched to prednisilone which was suppose to be easier on I think the liver. I was still in pain so really ended up upping my pain meds but I just wanted off the prednisilone.

Then I switched off into hydrocortisone. So now I started with 20mg 2 or 3 x a day and got it down to 20 a day which I take all at once in morning and should really take at half doses.

I have to look up this Humira. I too am waiting 3 months for my first rhumatoligist appt since moving to NY

I'm having the same problem with the prednisone.  Started back on the cimzia a month ago and tried cutting down to 5mg of pred to wean off but just isn't cutting it.   When I was on Humira the shot every two weeks worked for awhile but then I had to start doing a shot every week.  After about 3 years it just didn't work any more.  I don't know if the cimzia is going to work well or not, will have to give it some time and see.  You might want to ask your rheumy about taking the humira once a week and see what happens.  Winter in New England is always hard for me and even on the cimzia and 10mg of pred  I suffer when the weather is damp or a storm is coming (which is most of the time here)

good luck

Alicat

Vanni, so sorry you are having such a rough time of it..I think that same way..maybe a bit more pred! It seems I am always so terribly tired and the pred does seem to give me a boost of energy.  I think I need a pred support group, I just can't seem to taper, so matter how hard I try..I know it is bad for my health, but still..

Hi Vannie! Sorry to hear that you fell. Geez, like you needed that on top. You know your Rheumy best. If I was raising my Pred. more than a few mgs., I know that my Rheumy would want to know AND if I fell, for sure.

I'm joining your "not being able to taper off Pred. club". I was on high does of Pred. about 5 times through the years. The last time 30mgs., I started about 5.5 yrs. ago and haven't been able to get off of it. I am presently on 7mgs. Sometimes I go to 6.5mgs. and stay there a couple days but then the pain gets to me again so I go back to 7. That's the lowest that I can go.

I have my Rheumy appt. and tests tomorrow, so I'm hoping that he will give me a yukky Medrol shot. It would be great to feel good for the Holidays and then some. I also have my infusion tomorrow. Nothing like packing it all into one day. :) Hope that you feel better.

Hi Denita:

Thanks so much for the Welcome.  I appreciate it.   Hopefully, you will be feeling better soon.

Hi --Newbie here--I too cannot seem to leave the prednisone behind (nurse here, know what it does to the body). I am stuck at 10 mg od, less makes life intolerable, have not been specifically diagnosed yet, 8 months ago woke up with shoulders and arms unuseable after a weekend music festival where I played a lot of resonator guitar, a heavy instrument I have played for years. Sed rate was high, and prednisone gave me mobility within 8 hrs. Also has given me 40 extras pounds in 8 months, have a specialist appt in 6 weeks, meanwhile, pain has eased up except at night, and I can no longer lift my musical instruments, which is a heartbreak. At night, it is the right hand which lets me sleep only an hour at a time, then I wake screaming with shooting pains from knuckles to elbow and all points between. Once I am up and put a tensor on, the pain subsides, but when I return to bed, I get another hour of sleep at most. I am learning to dread the nights. Finally at 5 am I sleep the sleep of the truly exhausted, then the alarm rings for work at 7 am. And it is always the hand that wakes me. If I dare to think I can play a tune, I will feel it in the shoulders for the next two days. I have a standard transmission car, and that is a challenge to drive for an hour each way to work. There are times when the right hand won't grasp the shift at all, so I have to cross the left hand over to shift. I know, not safe, but you do what you have to at the time.

My question: Any one else who supposedly has RA being bothered by the dominant hand pain, or do I also have carpal tunnel syndrome into the mix? I am only 8 months into this condition, with no warning, no other health issues, and now it takes an hour to get showered and into clothing, never mind make up and hair! I so understand what some patients go through when they wind up having to get help with ADLs. So discouraging!