Hi everyone from the US. First of all I really want to thank all of you for your posts. I have learned so much about PMR/GCA that I could never have learned by myself or from my Dr.. Keep it up. My heart goes out to you all struggling with this very frustrating disease.
I am a 62yo female that was diagnosed this last Feb with PMR. I am very active, working full time (1 hour commute in a car each way) and a Cross Fit student (was) and also live on a farm with a lot of chores to do. Stared with 20mg. and have been going up and down since. Today I am on 12mg after going up from 11mg two days ago. I had been on 11mgs for about 4 or 5 weeks but started to experience really bad pain in all the usual places about 2 weeks ago. So today is day 2 of 11mg. I feel better in my arms , shoulders and neck however my pelvic girdle and lower back is killing me. Having difficulity getting up and walking, lifting my legs. Maybe it will take a few days on 12mg to feel better?.
Plus my MD Rhumatologist wants to put me on Methytrexate and so far I have refused that treatment. I do not want to do that. He is pretty insistant and is not used to anyone refusing...so I think...
I have also gone to a Naturopath who has given me suppliments that have really lowered my inflammation. I was feeling quite well until a few weeks ago. I would have a flare one day and the next I would feel fine. Then this week I had a flare and then another and another and and... I read a few days ago about increasing Pred just 1 mg could be the answer. So to sum it up I have increased from 11mg to 12mg and am on day two.
Any and all suggestions would be welcome.
Do I just stay the course with 12mg for a bit to see how I do?
Has anyone else experienced this business of feeling good one day and feeling awful the next? Maybe that is normal?
Should I be pain free when I am doing well? (I am NEVER pain free.)
Thanks.
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gailmax1
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Hi Gail, you seem to be doing very well. I think we all have good days and bad days, the aim is to have more good days than bad days! When I was first diagnosed I had a miracle reaction, but never really was pain free and that has been true all along. On the other hand I am a million times better than before diagnosis. Good old pred!
Hi Piglette, thanks for your kind words. I do have to agree that I do feel so much better than before diagnosis except when I have a flare, then it's like I am starting all over again.
It does sound like you may be having rather a lot of flares which is not good. It is also not really a good idea to go up and down on the doses of pred. Reducing very slowly is a better option. The number of flares may be why you have been offered Methotrexate. I must admit today I have been really bad I could hardly walk, I went to a meeting and someone suggested I got a Bath chair!
Thanks again! I have been doing the slo mo method and I had thought pretty successfuly until a few days ago. I am eating right, no sugar, dairy or gluten, taking anti inflammatory products and thinking I'm on top of the world!!! Hmmmm.
What anti-inflammatory products work for you, if I may ask?
Hi Jonnypup! My Naturopath said the really effective ones are Tumeric, Rosemary, and Ginger. She also said Pineapple. I am taking Tumeric capsules and I drink Ginger tea: Take about 2-2 1/2 inches of Ginger, peel it then slice thin and add to 4 Cups of water and boil for 20 minutes. It is kinda spicy but really good. I add sugar subsitute ( a whole bunch) and it is pretty delish hot or cold. I'm at work right now and I don't have all the suppliments written down but those were the major ones.
Curcumin is a better source of Tumeric. I take 500mgs 3 x's a day plus (2) 500 mg Ginger caps. Best Vite has the most comprehensive Curcumin I have, found.
How good it would be to have PMR people to communicate with and compare notes here in the US. It would also be nice to know if individuals are interested in email exchanges or actual phone contact. I suppose that would depend on each individual's preference.
If anyone in the USA is interested and would like the email address of both Mary and Audrey whom I have put in contact with each other. They would love to hear from other people form over that big pond.
Just send me a pm with your email address and name and I will send you both email addresses.
You never know the outcome of contacts.
The National Medical Foundation located in Arizona used to be run for PMR & GCA people and did a lot of good work, we have made enquires and find they are no longer in existence which is sad.
That does not mean you give up coming to this site either.
First of all - stop yoyoing your dose of pred. Once you get into that pattern it becomes increasingly difficult to reduce again. It is difficult to say a lot without more details of the times you spend at a dose but at the start you need at least 6 weeks before even thinking of reducing. Then how much you can reduce by depends a lot on you - maybe your body can't cope with a 2.5mg reduction which is what many doctors suggest, some even say 5mg because that is how they are used to reducing pred in other illnesses where it is used. Chronic use in PMR is a different thing - and your body has had a lot longer to get used to its daily fix of pred. Then you need about 6 weeks at that new dose before trying again. If you reduce 1mg at a time then you probably will be OK with a 4 week trial at each new dose. If the dose reduction is too big at one time then you are likely to suffer steroid withdrawal symptoms - which often feel just like the illness you are taking the pred for. This will improve over a week or so, a flare will get worse over a similar period. Even using the Dead Slow approach I feel strange for the first few single days of the new dose before it stops as my body gets use to the new lower dose.
Just because you have increased pain one day does NOT mean it is a flare - it is far more likely to mean that because you felt well yesterday you did too much and today you are paying for that. In PMR your muscles are intolerant of acute exercise - do a bit too much and you will feel as if you did the marathon yesterday! If you are still working full time AND there are heavy chores to do at home you are almost certainly overdoing it for the state your muscles are in. Pred doesn't cure PMR - it manages the SYMPTOMS so you can have a reasonable quality of life while you wait for the underlying autoimmune cause of the disease to burn out and go into remission. That doesn't mean you are cured - overdo it again and it may return.
There are also other things that often occur alongside PMR - myofascial pain syndrome being one that can cause symptoms like the ones you describe and which are easy to confuse with PMR. They respond to higher doses of pred too, but then reappear as the dose is lowered. It takes the form of concentrations of cytokines, the inflammatory substances that cause the symptoms in PMR, at trigger points: a pair in the shoulders, a pair just about rib height on either side of the spine and a pair in the lower back, about where the baby's dimples are. Each of them can trap and irritate nerves which in turn leads to referred pain and the low back ones cause pain across the lower back and into the thighs. The muscles go into spasm to try to protect the body from further damage and that in itself causes pain. MPS responds well to local cortisone injections (doctor) and manual mobilisation of the trigger points (physiotherapist or sports massage therapist) and a lot of people on the forums have benefited from Bowen therapy. In both the manual therapies it is likely you may feel worse for a day or two before you really feel better as they release cytokines into the blood stream and it may feel like a flare of PMR.
It is very unusual to be totally pain free - a 70% improvement in the symptoms you had is acceptable to make a diagnosis of PMR. But it is also possible that there are other things besides the PMR going on - such as the MPS I mentioned above or bursitis or tendonitis/synovitis. All of them can be symptoms of PMR and all take much longer to fade on the moderate dose of oral pred - they respond much better and faster to targeted therapy. And the autoimmune disorder probably waxes and wanes so at one time you can get away with a lower dose than at others.
Personally I would not want methotrexate - the very slow and steady reduction often achieves success without. You've only had PMR for 6 months - many people struggle in the first year to get to 10mg, it took me over 5 years to be able to get below 9mg. MTX may change the way your body metabolises the pred and allow you to get the same effect from a lower dose. Or it may not - there is no guarantee as several on the forums will tell you. Some took it, got to a lower dose and then were hit by a major flare, one developed full blown GCA. It comes with its own side effects which for some people are as bad or even worse than pred - but to find that out you have to try it. It does nothing for the PMR itself - but if you also have early late onset RA then it may well help.
But above all - you have to play your part in management of your illness. You have to accept that you may not be able to do all the things you did before and look for ways round the problem. This isn't giving in, it is acceptance and it will leave you more energy to do those things if you aren't wasting it on fighting the disease.
Read The spoon Theory by Christina Miseriando - does it apply to you and your situation?
Thank you thank you for all this information. I am printing it and will carry with me and no doubt I will refer to this often. On another note I didn't realize I was yo yo ing that much. I was on 12.5 for at least a month or 2 months and did the slow method. One day on lower, 11mg, then 5 days on higher 12.5mg, then 2 days on lower, etc. I really felt well enough after being at 11 for a good 4 weeks and was thinking of going slo mo to 10mg. Then I felt like I had been bashed with a brick. This is so frustrating.
Thanks again for all this information. I WILL GO SLOW!
Why use 12.5/11 for a drop? I would just do 12.5/12 - the smaller the step the less your body notices. Being able to drop 1/2mg every 3 or 4 weeks steadily is fair enough although there are doubtless doctors who wouldn't agree!
But are you sure you aren't developing an infection or something - that can also make a difference.
And here are the details of the "Dead Slow and Nearly Stop" approach:
I occasionally have a good day and then a bad one. Currently on 9 1/2 mg of prednisone and my rheumatologist also wants me on methotrexate and I'm refusing. I took one dose orally with bad side effects so now he wants me to do injections of this drug. After following the UK forum, most everyone says to taper a 1/2 mg. per month and am trying that right now. I am 65 and was diagnosed almost 2 yrs. ago. I am never pain free totally and assume never will be, but if I can function and get around freely, I consider that a real plus. Other than weight gain, tiredness, and all the other side effects of taking prednisone, I am hopeful this awful disease will (and is) going into remission). Hope you soon feel well and keep resisting your rheumatologist; I'm not in favor of putting another poison into our systems!
Sounds like you are in the US? As my Dr is really pushing me to do Methotrexate too and I am saying no, and will continue to fight it. I also don't want any more drugs in my system..I am proud to day at 62 I'm not on anything and I watch my health very carefully. I am going to try the really slow method and if the Dr doesn't agree, well too bad!
I appreciate you response. I know now that I will experience ups and downs a lot and won't be pain free. (I was really hoping that wasn't true.) A little mental adjustment for me and I will do fine!
Hi gailmax1....I'm also in the US....the mental adjustment has been the hardest for me. I was always on the go and fiercely independent. I have discovered that the 'payback' part of this disease is a demon. When I feel good I do too much and then WHOA flat for however long it takes. So after 3 months I'm still mentally adjusting.....hang in there!
Thanks so much for the encouragement. I too do too much when I feel good and then pay for it the next few days. After 9 months I am still not accustomed to this. My family and friends are not accustomed to it either!!!!
I understand your experience so well I thought once on the steriod I would not have any more 'episodes' but wrong. I am supposing that the pain will recur no matter what dosage you are on from time to time. Pain killers help you through. Louisa
Hey Louisa. Thanks for your reply. I guess it makes me feel better when people are in the same boat I am in. I haven't taken any pain killers....I don't want to get on that merry go round! I'm getting a lot of sleep and am trying to do moderate exercise. I still hurt like crazy. But I think that is the road I have to go down!! Take care. Gail
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