Drop to 7mg not so good | Arthritis Information
I had tried to taper over the holidays from 9mg to 8mg and it didn't go well so back to 9 until after the holidays. Thought it was the extra stress and shopping causing the set back. When holidays were over I tried again. 9 to 8 wasn't too bad but when I tried going to 7mg my body rebelled and my rheumy said to go back to 8 or 9 and stay there for awhile. I went back to 9mg and am going to stay here until spring. The cold weather just affects me too much to try to taper now.
I do like my new rheumy much more than my old one. The old one was dead set on getting off the steroids as soon as possible regardless of my condition. The new one says that with any myalgia be it poly or fibro the body wants a certain thing to relieve pain and all you can do is give it what it needs. I had heard good things about the muscle relaxer baclofen and did ask for a script. Other muscle relaxers always made me too groggy to be able to function during the daytime hours. The baclofen 5mg starting dose hasn't made me sleepy and is helping with the muscle spasms. Muscle spasms in my entire back & neck areas has always been my biggest problem and any relief is a blessing.
I'm another PMR patient that has never had an elevated sed or ESR so all we can do is judge by how I am feeling. Let you know how my tapering goes in the spring.
russellcat
go to the website and under Our Stories read Ragnar's method for reducing Pred.
Ragnar posted on this site and we he wrote the article for us. Loads of people have tried Ragnar's method and it has worked in quite a few cases. Its a slow way to take a drop, which allows you to distinguish between steroid withdrawal symptoms and if you are not ready to take the drop.
ADT (Alternate Day Therapy) is also recommended by the BSR Guidelines, but you cannot do ADT till you are down to 10mgs per day. Look on PE for EileenH on ADT.
If you cannot find it post the question on Patients Experience site - link on our website.
www.pmr-gca-northeast.org.uk
Here's the direct link to Ragnar's regimen:
Ragnar (Sweden) updated January 2011http://www.pmr-gca-northeast.org.uk/stories.php?id=12...I see that Ragnar has updated this recently
RickF
I absolutely wish I could give you a big hug.
I don't do so bad for an ancient brit, but those hyper links are beyond me.
I am so grateful that although Brits and Yanks can have their spats, but when the chips are down we join together, even if it is with reluctance sometimes of both sides of the pond.
Just like squabbling brothers and sisters. 'We may fall out but we do fall in'.
It's really simple to use hyper links if you know the steps. I'll try to show step by step in another thread. See: "Posting Links".
russellcat, I had been tapering pred by .5 mg every one or two weeks, since November last year (2010). I started at 9 mg and by Jan. 14 I was down to 5.5 mg.
Once down to 5.5 mg, I had started feeling worse and worse every day(although I have to say that PMR managed to confuse me about two weeks ago by slightly letting up for about 3 days, then the fourth day I felt like a truck had hit me). Finally I decided (thanks to friendly prodding) that I'd better check in with my rheumy, which I did yesterday. I found out it's a flare--and I have to jump all the way to 15 mg for 3 days; then will take 10 mg for 3 days; then down to 7.5. I'm questioning whether this rapid tapering off is going to fly. The 15 mg has brought me so much relief!!! I hate taking this medication but there is just no other choice. I didn't even feel like a human being on 5.5 mg.
As of Jan., my sed rate had been normal but the CRP had risen. I'm not very happy because this, combined with how miserable I felt even 2 weeks ago, should have been a signal to NOT continue tapering, but to increase. Should it not?
I feel as if I am tapering (or have been) to please my doctor--and of course, I don't want to take this med, either--but if I need it for quality of life, then I don't see there being much choice.
freesia2011-02-12 17:02:08Freesia - the rapid taper in this case shouldn't be a problem but when you continue down the steps and get to a point where you start to not feel so good - stop there. If 6mg is fine but 5.5 is not, go back to 6 (or wherever was good) and wait some time before even trying again. This is one of the 2 points that cause the most problems - 10-ish and 7-ish. Most doctors stop worrying at 7-ish and there are many many patients who remain there for years with no problems with steroid side-effects. There are a whole load of other diseases pred is used for where the patients have to stay on it at that sort of level and remain in otherwise good health. If reducing the dose means you can't function well - what's the point? It wasn't given as a cure but to manage the disease, if you can't function, it isn't being managed.
MrsE
Hi MrsE,
Thanks so much for your input! I'm doing so much better now. In a few days I'll be down to 7.5 mg and we'll see how that goes.
This disease is so strange. I felt so improved on two days of 15 mg, then the third day the weather changed-- the rains came--and I felt kind of awful again, while still taking this higher dose. I guess we are human barometers? I don't know. The day after that--I was fine again (and that was the day I lowered to 10 mg). Go figure!
Freesia - have you had a bone scan to see what your bones are like? I had one about 3 months in and everything was OK - one vertebra was osteopeneic but that is acceptable as normal. When I asked for a follow-up one after 1 year it was turned down as too early for a repeat (the rheumatologist said it was less than a year) so I asked again after 18 months at which point she said that most of the bone loss occurs in the first few months and as it is a slow process there is no point repeating the DEXA scans more than every 2 years as they are not sensitive enough to show small changes.
If your rheumy is so concerned about your bone health a scan would settle whether you are at risk with osteoporosis - not everyone loses bone density. We are having a discussion about the Fosamax story (alendronic acid) over on the patient experience uk site at present - come on over and have a look! I'd be interested to know her sources about 2.5mg being the cut-off point as it is much lower than the figures I've been quoted. I've said before - I'll consider it if they tell me I am developing osteoporosis, I'm not prepared to take it "just in case". The recommendations from the FDA are it should not be used for more than 5 years because there are potentially serious problems with longer term use. So I'm not going to take it now when I don't need to and then find I've been on it so long I have to stop taking it. Use of it for more than 5 years is associated with a form of thigh bone fracture only found in patients on bisphosphonates (the class of drug).
Weather changes are awful aren't they! Kills me too! Don't go overdoing it though now you do feel better!
MrsE
Hi MrsE,
I was diagnosed last Jan. 22, 2010--I had a bone scan in April 2010--and I have areas that are osteopenic, but basically my bones aren't in trouble yet.
My primary care doc talked about trying to get me a bone scan this year again, although it may be too soon per my medical insurance. Your medical plan sounds like mine here in the U.S.--they don't allow you to have some tests too frequently (or what they deem as "too frequent").
I don't know where my rheumy got the idea that 2.5 mg is the cut-off point. She's a young doctor so I keep wondering if there is something new they are teaching them in medical school? ..I believe what you are saying about the long-term use, etc, and I totally agree--so I wonder why she is so anxious to put me on this drug? Taking it "just in case" does NOT sound like a good idea!
It has all been very confusing to me. My primary care doctor is so relaxed about the prednisone--says I'm on a relatively low dose, and bone loss if any is slow-going, and that I would probably need to stay at 9 mg for awhile since the average time pmr lasts is 2-3 years. On the other hand, the rheumy says I must get off prednisone if I am not taking Fosamax. Not in so many words but that is the basic drift.
I'll get on over to the other website--I want to see the Fosamax discussion! Thanks for letting me know about that.
Weather changes really do seem to cause trouble! It's weird because it's been rainy all week but the painful day was when the rain was just beginning, and I was on 15 mg. I've been fine the rest of the time.
It's so good to feel like a human being again. On only 5.5 mg of pred, I was in continuous pain, it seemed like my brain was screaming non-stop, almost 24 hours a day. It was horrible! I'll try not to overdo it now, but I feel like now I can do all the things I couldn't do for the past month--like housework.
freesia2011-02-18 11:32:19
Hi Freesia,
I'm getting my first bone density scan next week. He said it would be like a 'base-line' test for me. I'm still on 9mg of Pred and coming up on 1 year anniv of being diagnosed.
Here's a direct link to that discussion on the UK forum...
More about alendronic acid - or Fosomax:http://experience.patient.co.uk/discussion.php?t=45132&sid=913e1fd6f9c37ac8e1eb9ff64de29cff
RickF2011-02-18 13:20:41Sounds like you have a very sensible and experienced GP - and your rheumy needs a bit of practice
Have a good weekend!
MrsE
Freesia, your rheumy sounds just like my old one. All she talked about was getting off the prednisone. My new rheumy is much calmer and says that there is nothing for the PMR pain other than steroids so what are you to do. No one has ever suggested anything for bone lose to me. I did have a good bone density scan less than two years ago though. I do take 1200mg calcium & 800mg vit D daily.
I am like you regarding the weather. It's when the fronts are moving in, which is when the barometer will fall to its lowest point, that I hurt. Once the front starts moving along and the barometer starts rising I feel better. The weather also affects my fibro and arthritis so I am definately under the weather with the weather.
I use tramadol, baclofen and tylenol for pain control. Just started on the baclofen, a muscle relaxer, and am very happy with it. I've tried many others before but they made me too sleepy to function. This one doesn't, yippee!!!
russellcat, thanks -- to be honest, I think that my primary care doctor could have done just as well treating me for PMR. And I wouldn't get so upset!
I'm taking 1000-1200 mg of calcium per day, and also 4,000-5,000 IU of vitamin D daily. My primary care doctor just had me take some blood tests because I was taking 2,000 mg of calcium per day and she was concerned that it might have been too much (can cause kidney damage, for one thing). No one told me to take that much...sometimes I don't eat much dairy so I thought it couldn't hurt--but apparently it can. Anyway I cut back on the calcium.
That is interesting about the weather fronts ! At least knowing that makes it a little less painful. I have arthritis in my spine, too. I'm sure the weather also affects that.
While I was going through the flare-up, I tried arthritis-strength tylenol. It did help with some of the pain after a few hours, but oddly enough, I felt sort of spaced out while taking it! So now I take regular tylenol if need be. I'm glad you have found some painkillers that work for you! And the baclofen.
Have a great week --I wish it could be pain-free for all of us!
freesia
Hi everyone,
I saw my rheumy last week. She told me that consistent weather patterns are the best for PMR. Here in the northwest, that's rarely the case. This winter has been so up and down weather-wise that I've been in more pain. One day it will be 10 below zero and a few days later we'll have 38 degrees and rain! Also, we had a weird summer last year, with lots of fronts coming through and I was worse then too. She said that if it's consistently cold and damp or consistently warm and dry, that we would all feel better. I'm leaving for Tucson, Arizona on Saturday for 3 weeks, so I'll let you know if it's any better!
I also had my vitamin D level checked and it was low. She put me on 50,000 I.U.'s of Vitamin D2 once a week for 2 months. Hopefully it will help. I'm finally down to 9 mg. of prednisone. I don't feel as well lately and it's been harder for me to work at school. It seems to take everything out of me. I slept 12 hours a few nights ago. I couldn't believe it! I've been down to 9 mg before and had to go back up because of the pain. I'm feeling kind of hopeless. Just have to look forward to the Arizona sun next week. I know I'm lucky to be able to go.
Thanks for being there,
JannieHi RickF---Thanks for the info and the link. Keep us posted on your bone scan results!
freesia
Lucky you, Jannie, getting to go to Arizona. Ahhhh...sunshine!!!
I'm sorry that the 9 mg/day are not working for you...I hope you feel better.
That is interesting what your rheumy told you about weather and its affect on pmr. I guess that means that places like Arizona and maybe Palm Springs would be the best!
Take care, and have a wonderful time,
freesia
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