Tapering off pred | Arthritis Information

Hi All! It has been a very long time since I was here.I use to be regular. I was diagnosed with PMR 2 years ago after a year of unbearable pain. I started on 10 mg of pred with miraculous results, but found I really needed 20 mg to be out of pain on an ongoing basis. After 3 months I began to taper. Once I got down to about 12 mg every taper left me feeling lousy for a couple of weeks. So, I followed the advice of many here an made each reduction very sloooowwww - every three days , then every other before eventlually settling on the lower does. It may have beena mistake, I don't know. I got stuck @ 10 mg and again at 5. Since 5, (I am down to 3.5) I have had pain again, along with some fatique and not really depression, but lots of sadness on some days (not always. To some degree it has to do with schedule - like don't get up and take pred even 1 hour late...

So I was at the DR today - he is VERY good, listens to me and seems knowledgeable. He did say however that it is unusual for people to have this difficult a time getting off pred. He recommended going back up to 4 mg as well as doing some testing for cortisol levels.

People's experience if anyone has taken this long to get of pred would be helpful.

TYHi Ty

My understanding of pred and polymyalgia is that if you are still in pain then you still have polymyalgia. Is your Dr. doing monthly ESR tests? This is one way to keep tabs on the polymyalgia. My Dr. is still testing me one year after the end of poly because she is afraid it may come back. Everyone is different and what works for one does not work for another and it is not unusual for you to have a difficult time getting off of pred. If you still have polymyalgia you for sure will have trouble getting off of it.

Wishing you lots of luck.

Pat

Hi TY

I was diagnosed in June 2005 with pmr and GCA. I started on 20 mg. I reduced the Pred by 2.5 mg every 3-4 weeks until I reached 10 mg. Then I reduced by 1 mg every month until I reached 5 mg. I tried to reduce during a whole year, but every time I had to go back to 5 mg due to fatigue. I thought it was no idea to go around being tired all the time when I didn´t have to. Unlike most persons with pmr, I had fairly little pain. When I had slight pain, it could be anywhere in legs or arms. After a year on 5 mg, I thought I would test a new regime. I took the lower dose 1 day, the old dose 2 days and repeated this once more. After about a week I took the step and lowered the dose each day. By doing this, my body reacted positively and I could start going down below 5 mg but only about 0.5 mg at a time. I had 2.5 mg tablets and cut them by hand in four parts, so it really was 0.6 mg at a time. If there was a problem, I just continued 1 day low dose, 2 days old dose for another week or so.

After 3 ½ years – in the middle of December 2008 – I got down to 0 and I haven´t had any problems after that.

Good luck

Ragnar

Hi....Our stories are similar....I was diagnosed in July '07 and put on 20mg with miraculous results. After a month began tapering and by Dec '07 was down to 5mg. At that point I had annoying stiffness but otherwise still OK. From Feb - May slowly went to 3.5mg but the fatigue was overwhelming- back to 5mg. Then from Aug '08 to Feb. '09 went slowly to 3mg..again fatigue and acheyness-back to 4mg. Feeling great at 4mg I tried again in April '09, now at the begining of Sept., I am at 3mg one day and 2.5mg the next...I have been at this for 3 weeks and the fatigue and muscle aches are not improving.

Just had an appointment with my Rheumatoligist and all the blood work was good. She said to stick it out for a while longer but not to go up more than 3mgs without calling her( . I am not sure what her plan is if I call. She seems to think it is more the pred than the polymyalgia.....and she said she sees this all the time trying to get off the pred....terrific!

Good news is I'm going for repeat bone scan in Nov. if it has stayed the same I'm off the Fosamax. Since starting the pred. I am now on meds for blood pressure and developed irregular heart rythym.

I am on vacation this week and not pleased as all I want to do is sit......I am a very active person, preschool teacher, with 18 3/4 year olds starting next week, ugh. I am not even close to the pain I had when diagnosed but it gets very discouraging.

I'll be interested to hear how you do with this....good luck! Gail

Hi - I have had pmr for 2 1/2 years and at one point I was down to 1 1/2 mg pred. BUT I had terrible fatigue. I went to an endochronologist cause I also take thyroid med and she tested my cortisol and called me and told me thats all I had in my body l 1/2 and to start 5mg at once. Adrenal deficiency can be fatal . I also see a rheumatologist and she told me I may always have to stay at 7 1/2 which is what I'm taking now. When I try to reduce, I get terrible pain in my shoulders, arms and hands. After long time pred use, the adrenal glands can completely quit and never recover. So gang, if your reducing on your own, remember to get your cortisol levels checked.

Jule

Thank you (TY) for your answers. Name is pgr555 TY means thank you lol, but I have been called much worse. Maybe I'll take on a new nickname.

I have blood work done regularly and it has been normal since soon after starting on Pred.

Ragmar, I have tapered in the way you suggest - I think it may have been you who suggested it way back when I started trying to get below 10 mg.

Gail, yes it does sound similar. Doc has suggested 2 things that I may try. One is getting cortisol levels checked to see if my body has quit making cortisol. He says that might mean low dose pred ongoing... I did try plaquenil as many here have done, but it was not helpful and I had side effects.

The other is to increase back to 4 mg for a while.

Gail, good luck with the start of school.

Thank you all for the good wishes and hope everyone is feeling well
pgrJulie,
Thank you! Sounds like my doc is on track!
pgr
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