The bell rings for the last lap | Arthritis Information

In track, a bell rings for the final lap as the runners pass by. To-day I started my final lap as I started tapering from 1.25 mg to 0.6 (1/4 of 2.5 mg). To-day (Thursday) and Sunday I take the new dose and in between the old dose for two days. Next week I will take the doses every two days and after next week I will go over to 0.6 mg. In this way, I think my body will easier adjust to the new dose (which is half of the old dose!). I have had pmr since June 2005 and I am now 70. I am grateful not to have had such a bad pain as most of you seem to have. For me, it has more been fatigue that kept me continue with pred.

To-day I was walking with my wife and a golden retriever that we take care of every once in a while. It was sunshine and we walked along a nice river to the shopping mall. A few times I had to tell my wife that I had "Polly" along (my word for polymyalgia) and that she couldn´t follow the dog that pulled fiercely to move on. I have used this expression often when we walk the dog together! We went to the shopping mall about 25 minutes away on foot. There we did some purchases. I took the goods and took the bus back and my wife walked back with the dog. We live in a hilly area, so I don´t like to walk uphill after having been away for 45 minutes or so.

A week ago, we took the car to the airport. I have summer tires as we have had no snow and had beatiful weather (10 C above normal since New Year). For Easter, we suddenly had - 10 C and 40 cm of snow (16 "). We are not allowed to use summer tires until April 30 if we have snow or ice on the road. My car had been standing without being able to use it for 10 days or so - I didn´t want to change to winter toires with spikes and then back again to summer tires). We went to visit a son in Stavanger, Norway. At the airport there was still snow on the parking lot and I parked on top of about 15 cm of snow and couldn´t move away if I wanted. When I came back last Saturday, it was raining and I could get the car away from there. After still some day, we had no snow. Now it is 12 C in daytime and the daffodils and crocuses that had started to bloom before Christmas are now coming back to life after being bent by the snowfall.

The bell rings for the last lap! I write this, because after 3 years I know how important it is to also tell the good stories.

Ragnar

Congratulations, Ragnar! Thank you for sharing the good news. You have been an inspiration to us!

Congrats Rag! I will be there SOME day! :)

Hi Ragnar

Wishing you God speed on your final lap and to thank you for all your information and kind words to get me to this point in my recovery. I hope you know how much you and the rest of the gang are appreciated and I do hope you do not leave the forum. You have to drop in to give us a boot when we need it or some of your sage words of advice.

I had another bad session beginning at 3 am Thur. morning and lasted until 10 am. I slept from 10 am until 4 pm and when I woke it was as if I did not have PMR. I was really wondering what was happening to me. I had not played around with the meds at all so do not know what caused it. It would be nice if the PMR had disappeared but I am not about to experimenet to find out. Very strange!!!!! I am feeling really good now and hope it lasts.

Golf course is opening next week so have to limber up and get ready. We had another snow storm last Sat. but thankfully it is all gone again. We have had a long enough winter.

Again, my thanks to you and best wishes on the final leg of this long journey. Take care.

Thanks to you all for wishing me well. To-day is the second time with the new dose 0.6 mg (1/4 of a 2.5 mg tablet) and then I will have two with the old dose. Then I change to every second day for a week.

Ragnar

Hi Ragnar:

Congratulations and God Bless you for your patience and inspiration. I need your advise. I was dx July 2007, although I have had the pain since Nov 2006 when I broke my ankle and had triamalleour fracture. It ws in the hospital after surgery that my right arm was aching which continued after I got home. A few months later my left arm was painful. My GP put me on 50mg Pred for one week and the pain disappeared. So PMR and continued with lower dosage of Pred. I have been up and down with pred since July 2007 from 25mg to 17mg. Sorry for the long explanation, now the question:

I know you have said in previous posts that you have a formula that you used to come off pred. I am currently on 20mg, what would your formula be like for me to taper off the Pred? Thank you for taking the time to read my post.

SheilaB

Hi Sheila,

From 20 mg down to 10 mg I tapered 2.5 mg every 3-4 weeks. From 10 to 5 mg 1 mg every month or so. From 5 mg down to 0 I recommend 0.5 mg at a time. It may take a little longer each time when you are down to those low doses. It tokk me a year to come from 5 mg down. I probably took a step tto long (I don´t remember if I tried 1 mg down). Now I am down to 0.6 mg (1/4 of a 2.5 mg tablet).

To illustrate my method: On Thursday, I took the new dose, Friday-Saturday the old dose. Sunday (yesterday) the new dose and after two days with the old dose I go over to alternate every second day (new and old). After about two weeks I take the last step over to the full dose.

As I tapered from 1.25 mg to 0.6, it is half of what I had, but if you go from, let´s say 20 mg to 17.5 mg, the new dose is 87.5 % of the old dose. That´s probably why the doctors want us to go down faster in the beginning. With the method I described, I think it is easier to go over to the new dose, especially when you come down under 10 mg. I am not a doctor, but I think it is important to point our that after my three years (got it in April 2005 but was diagnosed at the end of June 2005 after many different tests) I think my experience is more worth than advice from a doctor, because I have got to know how my body reacts to pred and tapering.

Good luck

Ragnar

Ragnar,

Good for you!!! I wish I had had your advice when I was tapering off the prednisone. I am thankful that I have been over the PMR for over a year now ( had it for 5 years). Though I still have back and joint problems (had those before the PMR), they are tolerable, and of course, with getting older (I am 58 now), things are not as easy as they used to be. hi Reni
good to talk to you again, was wondering if the plaquenil helped you, my dr wants me to take it and i didn't know very much about it or what it was used for, any advise would be greatly appreciated. thanks Georgiana
Georgiana,

I think the plaquenil helped just a little, but I didn't really notice until I quit taking it. I still hurt while taking it, and then hurt some more when I quit, but I think I was at the tail end of the PMR, so I could handle it. I would really rather have not hurt at all, but wanted to quit meds. It may work better for some, and may make a bigger difference if you are REALLY in pain. Guess it wouldn't hurt to try it. If you do, make sure you have your eyes checked regularly - at least every 6 months, I think - since it can mess with your retinas. Always something to have to watch out for. It didn't affect my eyes in the time I took it, thanks goodness. Let me know how it goes if you decide to take it. I think plaquenil is one of those drugs that was originally made for malaria cases, and they found it worked for RA. It's one of the drugs the rheumies try to help you get off prednisone, since the side effects aren't as bad long-term as the pred.

Reni

TeedOff.....PMR left me twice. One time last October and one time after Christmas. In October it lasted from the time I got up until late afternoon. After Christmas, it left for a couple days.

I am just on NSAIDs and take them according to the bottle directions. It is so strange I take them for a few days and then I start to hurt. I switch to aspirin and that helps for awhile.

I've had PMR since August 2006 and could only take Prednisone for about four months. I was taken off Methotrexate too.

I have noticed that when I take an afternoon nap for a couple hours, I feel half way decent. I feel so much better than when I wake up in the morning. When I wake up in the morning I feel as though I had not rested. Maybe I should set the alarm clock and get up very early each day and by noon I'd be totally exhausted and need a nap.

It is finally spring here....we had six inches of snow last Friday. I hope I can get out and move more. Winter has not been good for exercising and I'm afraid I am getting out of the habit. Mary

After two perfect weeks of tapering successively, on Monday this week I took the new dose. On Wednesday night I had great pain in my left foot, and yesterday and to-day I have been lying in bed due to the pain. I can walk with crutches but it is still painful. Now I am back to 1.25 mg and will probably stay there for a long time before trying again.

Ragnar

I've been reading your posts and am very sorry to hear about this new situation. I too am in the process of reducing and am always excited when I hear that someone is successful. Here is an interesting article that you and others might like to read. www.westonaprice.org/askdoctor/steriods.html

Best wishes, Susan

Sorry, that web address is not working. Try www.fourfoldhealing.com

The doctor's name is Thomas Cowan and the article he wrote is called "Getting Off Steriods". Once you reach his page, click on Articles and I believe it is the seventh page.....lots of scrolling down, but interesing articles along the way including one on PMR.

Thanks Susan. It was a bit hard to find, but I clicked on Holistic Family Medicine and the searched for polymyalgia and then I found the article Getting off steroids.

Ragnar

Ragnar,

I, too, have been following your posts and I am sorry for your minor setback. I have foot pain, but I am sure it is plantar faciitis. Usually after two injections, it eases up. This is my third bout, and the foot doctor has mentioned surgery to correct the muscle in the heel that is drawn up and making walking impossible.

I hope you start to feel better. Better days are ahead.

Hi Donna, before you do anything else....try streaching those tendons each morning before getting out of bed. Raise your leg and streach that heel as much as possible, holding to count of 25 or 30, rest and do it again. This may be the cure.....it was for me. Good luckSue,

I've been doing the exercises and wearing a support band when out of bed. The injections usually work, well. By the time I call the foot doctor, I am usually trying to find a pocket to stuff the foot into. My first morning words are not printable on here.

Between the hips and everything else that gets hung up like the Tin Man it is a challenge to get going with the day.

Surgery is the very last method I will choose. It seems nothing triggers it. It is like PMR, it is there one morning when you get up. Only one foot.

I borrowed on of my husbands ties to pull it up to get maximum effect. I put medicated pads on at night, the one's used for back aches and a multitude of other aches and pains.

Hi Ragnar:

Just to let you know I followed your formula and created a spread sheet to track my tapering. I taped the spread sheet to my bedroom door and check off every night my daily dose. Today I am at 18/mg daily, following the forumla I should be down to 10mg by Aug 6th. I am going to Scotland for three weeks in September, so I will stay on the 10mg until I get back to Canada. Thanks again for your help. To all of you I so appreciate your posts and having contact with PMR people who understand each other.

Blessings

SheilaB