Reducing meds

hi Karen

you are so lucky. i started over a yr ago at 20mg and just now at 16mg. my body qill not let me drop mire than 0.5mg at a time using the dead sliw plus once there i need to stabalize for up to 4 weeks. i litterally go crazy during the drop and gwt returning pain.

so I'm very envious of you all but we are all different and as i say my PMR has a real hold on myi and doesn't want to let go.

count your blessings and don't rush you don't want a return.

I am going pretty slow.  I will stay on 7 for about 3 weeks then start alternating 7 and 6.5 for a few weeks then hopefully go to 6. I think that is slow enough? All so confusing.   I do have soreness in the back of my thihgts sometimes but not terrible.

hi Karen

if you look at the studies especially the Bristol Method they recommend staying at 10mg for 1 year which reduces relapse. alot of people stay for 6mos. at 10mg or at the dose your at to let the adrenal glands to start kicking in.

if you have soreness then you are not at a dose that is controlling pmr and you may just flare and be back at square one.

you have done this so fast i personally would stabalize were it controls the pain for months since your under 10 and let your adrenal glads start to work.

do your research and use the dead slow method. you've done remarkably well till now you would hate to have to start over.

I have both PMR and Giant Cell, my pain is full body, and horribly physically debiliatating. I absolutely cannot function, sleep is impossible when having a flair. My body trembles and I get positional back spasms on those days. I have double vision, and temporal head pain that no pain med touches. Before I finally said no more to the pain and was refered to a Rhum, I went to emergency after two weeks of pain. I actually was suicidal due to the pain. My ced blood reading was in the 80's, which was a sudden onset, over night. Perhaps that is why my pred is at such a high dose.

There is evidence that starting at high doses and knocking the inflammation down hard and fast influences the duration of the disease.

I started at 50mg for a week, 40mg for a week and so on until 20 mg then went down slowly from there. Since then it's been a struggle up and down. I'm now on Methotrexate, plaquenil and starting tocilzumab next week as I'm not responding to pred like 'normal' people lol

It really all depends on 'how bad you have it'..... I had a rotten case, and two years later still struggling, whereas others take 15mg at the start and have no problems reducing.

Thankyou for info all helps to work out a way of reducing I stress when reducing cause of the blockages I have my fatigue is really full on at present worse it has been. Do you think it would be a good time to start reducing thought if I start it might get rid of some of this fatigue?

Alley do you have GCA?  If you do, you really should follow doctor's orders regarding pred reduction, unless s/he's are one of those who make people reduce too quickly.

How are other things in your life?  Is your diet free of most refined carbs and sugar?  Are you able to get enough rest?  I find at my low dose (3 mg) I'm very lacking in energy.  I'm lucky enough to be able to use what evergy I have for the most part caring for myself as in walking, choir, and so on.  As much as I can I pace myself regarding the necessary chores like vacuuming or laundry.  Rest really is key.  We mostly are not able to do all we did before.  We'll blame it on pred fatigue, but our bodies are trying to recover from what is actually a fairly serious condition, and we have to treat ourselves kindly and give ourselves permission to rest and do things which contribute to our healing. 

Hi Anhaga yes I have GCA my Doc & I are working together with the reduction well last time I went along with him I knew the reduction was to much first go& did't work  so now we are going to go slower. Your right got to be more kind to myself and rest this is a serious desease I just get a little impatient not used to this being at home all the time. I have my Doc (immunoligist)  appointment & Vascular surgeon would like to see me next week for my blockage surgery is not an option has to be treated by meds.  We are worried about a getting a clot in my left arm because of the slight blockage there.

I had dreadful fatigue for the first year, I have no answers for you. You really must take the advice of your Drs in the first instance and provide them with feedback on what is, or isn't working for you.

As Anhaga has pointed out - you are SICK!!

Let your body inform you on how much you can do.

Of course a "high" dose is also variable.  If you have PMR which can be controlled by, say, 10 mg from the beginning, then a dose of 15 for several weeks is quite high.  I think this is what happened to me.  It took a couple of months to get to the 10 mg level which I think would have been an adequate starting dose.  On the other hand had I started at 10 it might have taken me far longer to reduce to 7, for example.  Who knows?  Maybe with someone else that high dose would be 20 mg, and in other cases even higher.  This is why I think the doctors generally choose a moderate dose (like 15 or 20 mg) so that they aren't giving people who don't need it too much lifetime pred.

Cindy, I agree.  I've been using the dead slow method to reduce.  Cannot imagine having to stay at 10 mg for a year or even six months, but perhaps some people need to.  I've done an awful lot of things to try to improve my general health, however, and didn't have any other serious conditions before PMR, although some people do arrive at this place with other health conditions which must make things ever so much harder.  I'm feeling extemely lazy these days and like to blame pred, but perhaps I really am just lazy and finally have an excuse not to have to keep on keeping on....

I think the pred really does cause a lot of fatigue, so go ahead with the laziness. If eventually you can work your way off it, you will feel better.