My PMR came back 1 year ago (in lesser form but still awfull stiffness especially in AM).
(sed rate fine though) Then I was diagnosed with osteoperosis and started researching like a maniac. 3 weeks ago I started to eat an "Alkalizing" diet. (Lots of fruits veggies yochert nuts. No sugars( honey ok) salt bread
I don't know if this is coincidence or the result of this diet but my muscles don't hurt anymore nor are they stiff. They feel so relaxed (I had forgotten what "normal" was supposed to fell like. )
Just wanted to let everyone know.
marianne19522010-04-06 10:30:28Hi Marianne, I am very pleased that you are feeling so Good. Its about the same way I am. 'Normal' is such a great feeling!!!
Is it a coincidence? Maybe. Over the years I have tried eliminating sugar, bread and other foods and vitamins that others and my family have claimed had been working for them. Some also came back later to say that it was not helping anymore.
I'm sorry to say I did not feel any better or worse for that matter.
To answer a previous question I am 65. It was just before my 60th birthday that I was diagnosed after approx 6 months of pain and with many, many tests etc.
My daughter 42 has recently been diagnosed with osteoarthritis in L4 and L5. She is now Gluten and Fish Free after a visit with a homeopath and is in less pain, has a lot more energy and is less fatigued.
Our other daughter 40 has osteoarthritis in her hip. She has had it scraped and is looking at a hip replacement down the track. She has also changed her diet many times and gets good and negative results. Not sure what she is on at the moment but it is helping her. I am not adverse to trying different / alternative things but nothing so far has controlled me like Pred.
I really sincerely hope that you have all Positive Results xx
Thanks for thinking of me and please let us know your progress etc.
Gentle Hugs to all, Lyn
Thanks Lynn. I am sure it was coincidence. I do still have pain in my neck but try to control this with aleve.
As far as your daugter's hip problem. Have you heard about this new procedure?
As far as my pain vanishing. It is either the diet OR the steroid shot the doc gave me on my shoulder or coincidence.Thank you for the info for my daughter. We have heard of it but all information is good to get. I have forwarded it onto her.
and whatever has given you relief xxxx just enjoy it!!!!
Sincerely, I do hope you are onto something and if its changing/ modifying your diet and its working, go for it!
gentle hugs, Lyn
i am beginning to wonder if pmr, leaves you with osteo, when it leaves or is leaving. i now have osteo, did the pred do it or did the pmr? too many unanswered questions with this disease.
Marianne, I'm to know that you are feeling better, and interested to see your experience with an Alkalizing diet. I think this is similar to the anti-inflammatory diet which my chiropractor recommended to me. I tried it but I only lasted about 3 weeks on it, unfortunately-- I started feeling too limited in my food choices, which I know is a lame excuse, but it was frustrating. That was shortly after my diagnosis. I told my rheumy about the diet and she said it could help, but it wasn't as important as the medications (of course!).
I feel like I owe it to myself to get back "on board" with this diet because who knows, maybe it will make a difference.
I'd be curious to know if others have tried either the alkalinizing or anti-inflammatory diets, and if it helped them.
freesia
freesia2010-07-04 18:26:13I see where the question regarding osteoarthritis is an older post but I'd like to comment on it anyway. I've had osteoarthritis for many years due to a genetic disposition from my father so this probably doesn't pertain to me. PMR doesn't normally strike until after age 50 which is probably about the time that many people will start showing signs of osteoarthritis even without PMR. I know that my doctor says "As we age" alot now as I get older. Some things are just normal aging process and there is not much we can do about it. One of them is osteoarthritis which can cause some people tremendous amounts of pain depending where it settles and if it causes any nerve impingement.
My osteoarthritis showed up around 2000, age 43, in my knee and around 2002 in my spine. I also have degenerative disc disease which has allowed my disc space to narrow causing the vertebra and facet joints to rub together causing bone spurs. Those little buggers can pinch the nerves and cause me alot of pain issues.
This is just my opinion about this topic though so I'd still like to hear about others ideas on this.
Like Russellcat, I don't believe there is any connection between PMR and osteoarthritis - although you can have both at the same time; osteoarthritis is the result of wear and tear in the joints, most people as they get older will have it to some degree. Injuries too can cause osteoarthritis to develop - I have it in my knee after a skiing accident a few years ago.
Like Freesia, I find it difficult to stick to an anti-inflammatory diet! Cutting out red meat is not a problem, I eat a lot of fruit & vegetables, but find it so hard to say "no" to cheese and fresh bread. I know that wheat certainly makes me bloated and sluggish; when I stick to the diet I feel generally "sharper", but can't say for sure it made any difference to the pains. We have had house guests of late and the temptations to stray have been ever present. Like you, Freesia, I feel it's time to get "back on board" - I owe it to myself.
Good wishes to all.Marianne:
How much vit D? Do you mean 5000 I.U. (international units)? That is well above the recommended daily allowance in most countries but the US has revised its recommendations recently on the basis that , in fact, most people are deficient. I found a forum where people were discussing how their rheumy had put them on high doses (not PMR patients though) and their pain improved so I find your comment interesting.
Low vit D levels are almost always found in patients with autoimmune diseases, are also associated with osteoporosis (you need it for absorbing the calcium) and a third of a population of young healthy healthcare workers in Boston were found to be deficient. Unless you live on a level with Atlanta Georgia you can't make enough from the sun on your skin and you won't even then if you use sunscreen. You also need cholesterol to make vit D - but I won't go there with regard to our diets!
I'm about to try a higher intake of vit D once I can get it, can't buy it OTC here in Italy! Looking forward to comparing notes!
MrsE
I've been taking Vitamin D3 supplement for a couple of months now. I take a 2000iu tablet after breakfast and another 2000iu tablet after dinner (Vit D3 is fat-soluble so should be taken with food). Both my internist (GP) and Rheumy know the amount and approve. The old safe level here in the US used to be 2000iu per day. The link below says the safe level is now 10,000iu.
FEBRUARY 01, 2008 - Hot off the Press, higher intakes
of Vitamin D3 can help one reap even more health
benefits than was previously known, according to newly published Risk
Assessments.
Four nutrition experts, including two Council
for Responsible Nutrition (CRN) scientists and two of the world’s
pre-eminent vitamin D researchers, are urging the Food and Nutrition
Board (FNB) to raise the vitamin D Tolerable Upper Intake Level (UL)
five-fold, based on a safety evaluation of the latest scientific
research. This research shows that vitamin D is safe at intake levels
much higher than its current UL.
The paper, published in the American Journal of
Clinical Nutrition (AJCN) concludes the safety profile of vitamin d
should safely permit raising the UL for vitamin D to 250ug (10,000IU)
per day from the current UL of 50 ug (2,000IU) per day.
Below is a link about Vitamin D3 where it discusses the following:
- - Vitamin D3 may help lower BP and cholesterol
- - Experts call for increased dosages of Vit D3.
- - Vitamin D3: The miracle of Sunshine
- - Vitamin D3 sources
- - Side effects of Vitamin D3
Cowgirl75 - osteoporosis is one of the side-effects of taking higher doses of steroids because it interferes with the way calcium is taken into the bones so new bone formed is less dense and therefore less strong. It is believed by some that once you are down to a dose of about 7mg/day the effect is small and so there is less concern about developing osteoporosis. Using HRT while taking steroids also seems to reduce this effect but of course they now don't like to use HRT like they did 10 years ago. Fosomax makes the bones take up the calcium and form dense bone, that's why it's used alongside the steroids - pretty much as standard in the UK, don't know about the US.
Body-weight-bearing exercise is needed to form bone properly (30 min per day of brisk walking or jumping rope are both good, the bone has to have force on it that makes it bend a tiny, tiny amount so it knows it needs to make new bone!). Of course, for lots of people with PMR that sort of exercise is difficult even when they are on steroids.
You also need enough calcium and vit D - and both are often low in people with auto-immune diseases, and PMR is an autoimmune disease so you need to include more in your diet. The recommendation in the US now is 2000 IU vit D, much higher than it used to be. Be careful about too much calcium as that can cause other problems like kidney stones.
So I guess you could say it's a combination of factors - but taking steroids is a major one.
I know this is an old thread but anyway,
I haven't tried the alkalizing diet but the anti-inflammatory diet seems to help a lot.
There are differences of opinions as to what constitutes an a-i diet, so I go by a website, nutritiondata.self.com. which actually gives a positive or negative number to a given quantity of food, you can total them up at the end of the day, or have the website do it for you.
You don't have to give up any food, just make the numbers come out right. If I can't do this with food alone you can take capsules of herbs, esp. garlic, ginger or tumeric. Check out the number for onions, they are hugely anti-inflammatory and if you like them cooked with other food, as I do, you should be able to cover a "multitude of sins".
I am pretty confident that is was indeed the shot in the arm, I can get the cortizone shot in my arm, hip, or anywhere and I am great for 2 to 4 weeks. I have done this time and time again, I have had PMR for a little over 3 years. I do think I have firbro on top of this now.Hi All, and especially Tuni, who is fairly new to this site. It really helps , when you are feeling down to have someone to talk to.
Just a note on Vit D. My rheumy did not suggest the test, but my dr who practises an alternate type medicine, made me have the test about 2 1/2mts ago. I was very deficient in Vit D and am taking 5,000units, but I have to have another blood test in 2 weeks and see him after. I would not be taking this unles a blood test confirmed deficiency.
He also put me on Iodine (lugol's iodine) about 2 yrs ago , after a blood test I think.
Although I see this dr and a rheumy, I was down to 2 1/2 mgm prednisone, got virus with bacterial infection from g-kids, started to have pain and fatigue and depression again, upped prednisone to 7mgm, I still have this damn PMR. I have good days and slow starts to days and after 5 yrs , am now always starving and now putting on weight. Not coping real well.
Bit of a grizzle, sorry all , needed to chat Zali
Hi Zali - haven't seen you around for a while! Sorry to hear you feel you're not coping well at the moment - so consider you've had a virtual hug if it helps.
After I posted the last time about vit D on this thread I went away and did a lot of library research and put together a sort of review of what I'd found. It wasn't done properly and I meant to go back and sort it out - however, I mentioned it to MrsUK and she asked to read it. She also showed it to some of the medics involved with the UK PMR/GCA support groups. It was dismissed by pretty much all. A bit later she sent me a link to a presentation made by a GP in Oxfordshire which I looked at and read around and added to - and as a result she went to her doctor and asked for her vit D level to be checked. She had had awful muscle pain all over for several months and was sure it had more to do with low vit D than PMR appearing (she had GCA, no sign of PMR ever).
The last time I had my level done it was about 20 (whatever the units are in the UK, nmol/l??) and was told that was OK - it was much lower than that when the PMR was really bad nearly 2 years ago and I was given the usual calcium/vit D supplements which give you 400 IU a day. MrsUK's also came out about 20 and, in the meantime, her local health care group has decided that there is a difference between normal (the range found in the normal population that is seen as what people normally have, about 20 to 40 in the UK) and optimal and they now quote a range of somewhere in the region of 44 - 144. She was put on a loading dose of 40,000 IU a day (2x20,000) for 10 days. After 5 days the pain had reduced by about 50% and after the 10 days the pain was gone except in a bicep and leg. She's awaiting the vit D check result.
The guideline was only changed from allowing high dose vit D on the consultant's say so to the GP being able to do it a few months ago and she was the first to benefit. I would have checked with my GP in the adjacent healthcare area when I was back in the UK a few weeks ago but the chatty, "I'm not going to chuck you out after one question" guy was on holiday and I had to see the "I'm seriously efficient and aim to get you out asap" one but who supports my getting months worth of medication at a time so I only have to actually see her 3 or 4 times a year. So I stocked up on 1000 IU tablets and am taking about 100,000 IU per week. This was an alternate strategy suggested in the Oxford GP's paper - he wanted to do a study but couldn't get clearance from his primary care trust to have the comparitively very expensive very high dose stuff (imported from Germany where it is made). Trouble is that all tablets are full of "carriers " so the more single tablets you have to take the more of the inert stuff gets taken too and some people get upset stomachs - I think Rick who posts on here had issues with it.
It's been mentioned by jill (I think) that our daily requirement is in the thousands. There is very little in our diet unless we eat large amounts of oily fish (half a pound at least every day) - and who does that? Farmed fish has far less and cold water fish are better. The body evolved to get it from sun exposure and conversion of cholesterol in the skin but the "slip, slap, slop" mantra has reduced the amount we get from the sun to a negligible level. The sun's rays must hit the skin at an angle approaching vertical so we need to be out in the middle of the day which is warned against, clothing also stops the effect. The further away from the equator you live the less you get even in summer and virtually none in winter. A 70-year old makes about a 1/4 of what a 20 year old does in their skin and this is reduced even further by the fact older people don't go out in the sum in skimpy clothing. We are encouraged to reduce our cholesterol intake and hence blood levels, taking statins increases this effect. And even factor 8 sun cream reduces the effect by more than 90%, above factor 15 it's nearly 100%! There is no wonder if we are vit D deficient. Until recently you were only regarded as deficient if your blood level was under 20 but the latest recommendations are now for levels above at least 70 to 120, depending on the country. But despite studies having shown that the majority of the population is well below these levels doctors are still telling us "plenty of vit D comes from the sun and diet" and that 800 IU a day supplement is enough.
Does anyone have any suggestions as to how we can change this belief?
MrsE
And Zali - why apologise???? If you can't have a whinge to us who know all about it who can you go to? If you want to spread your moan come on over to the PMR forum at patient experience uk - someone thanked the group this week for the posts that make him smile, think or both! So something right is going on! There are so few support groups where you can go in person that these forums have a very important role to play. They are the good side of social networking sites.
MrsE
Just when we thought that more Vitamin–D could be safe, it's in today's national news here in the USA. According to a two year national study, there is more health risk than earlier thought.
Quote...
"Vitamin D and calcium go hand in hand, and you need a lifetime of
both to build and maintain strong bones. But the two-year study by the
Institute of Medicine's panel of experts concluded research into
vitamin's D possible roles in other diseases is conflicting. Some
studies show no effect, or even signs of harm.
A National Cancer Institute study last summer was the
latest to report no cancer protection from vitamin D and the
possibility of an increased risk of pancreatic cancer in people with the
very highest D levels. Super-high doses — above 10,000 IUs a day — are
known to cause kidney damage, and Tuesday's report sets 4,000 IUs as an
upper daily limit — but not the amount people should strive for."
Read full report here:
http://news.yahoo.com/s/ap/20101130/ap_on_he_me/us_med_healthbeat_vitamin_d
Rick - I think the idea of the high doses that are used short-term are to "load" the body and get it to a state that the scientists describe as "replete". The guy in Oxford wanted to do something like what MrsUK's doctors prescribed where you just take the very high dose over a very short period which is short enough not to compromise the kidneys. The optimum is felt to be a very high dose either taken orally or as an injection as that single dose is unlikely to have a kidney effect and also improves compliance: most of these patients are elderly and taking loads of different pills which have to be taken at different times so often just don't bother. However, these single dose regimens are perceived as being very expensive (they aren't in fact when you look at an annual overall cost) so in the UK it is difficult to get them approved by the local health care group. Once this loading has been achieved and the tissue levels are up to where they should be, you would not continue taking such high doses and would revert to a maximum of about 4,000 IU total intake which is in line with these new recommendations and should be enough to cover your daily needs. That is where the problem lies - it's like trying to fill up a lake with a bucket whilst a stream is flowing in the top and a river is flowing out the bottom! Due to all the "don't do that"s which we've been given over the last 20 years which affect the production of vit D we are deplete - you shouldn't need to take massive doses of the stuff.
However - MrsUK has had a super result with regard to her muscle pain having had a load of vit D, it will be interesting to see what her blood level is now.
cheers from snowy Italy - not much chance of sun-sourced vit D at present,
MrsE
Hi Mrs.E,
Thanks for that. Yeah, here I've been on 50,000 iu — but only taken once per week for eight weeks. I was at the Rheumy last week for follow-up blood tests. Haven't gotten the results back yet though.
I was up in Raleigh, NC for Thanksgiving to see both my son's family and our seven grandchildren. Great to see everyone. Ate too much of course.
Glad you had a good Thanksgiving Rick - been reading since my last post. No wonder you feel tight and sore after that drive - not just round the corner is it?
The article your link gives seems to me to be a bit "unbased"! The original review article makes it clear that the thing they were looking at was "does vit D prevent cancer" and the answer appears to be no. The high levels they refer to are above 100 whatevers (nmol/l?) in the blood and the warning applies to taking high levels of supplements over many months or years which could lead to very high blood levels. If you are taking it under the doctor's supervision with blood monitoring you will see where you are going. It takes months to get to these very high blood levels if you started at deficiency levels of below 20.
There is apparently a slight increase in the risk of a few uncommon cancers if the blood vit D level is high - however, it's like many other things. I have a chronic debilitating disease which might improve if my vit D status was better. Compare that to the fact I MIGHT develop a very uncommon cancer as a result. I think trying the "bolus" taking of vit D (i.e. taking a high dose over up to 2 months) to see if you feel better is not unreasonable providing you have a baseline to look at. If your vit D was above 40 you can feel assured that you are not too badly off and just take maybe 4000 IU to maintain that over the winter whereas if, like me, it was 20, taking a bit extra would not harm. I will be asking for a vit D status in a week or two to see. Of course - if you are really lucky you have a doc who will experiment with you!
Enjoy the recovery from Thanksgiving - somebody did suggest turkey was soporific!
EileenH
Hi Eileen,
Yeah, the driving home is always the pits on the Sunday after Thanksgiving. I've read that it's the worst day of the year for driving here in the USA. Everyone is trying to get back home to go to work and get their kids back in school on Monday. After driving 10 mins... stopped for 10 mins over and over again for about 2 hours... and never getting up to the speed limit, we gave up and checked into a hotel. We figured Monday would have much less traffic. This was a smart move as we had clear sailing for the remaining 440 miles.
My Dr. (Rheumy) called me this afternoon with blood tests results. Said my Vit-D level came up from 27 to 55 in the six weeks I was taking the 50,000 iu per week. He said I could go back to taking just the 4000 iu each day like I had been doing.
I was surprised that my SED rate (ESR) came down from 20 to 13 on the reduced Pred of 8.75 (10 one day / 7.5 the other day). This was really unexpected because I haven't felt as good as I had been on the 10 mg of Pred. The Dr. said once I start feeling better to try lowering the Pred to 7.5 each day. So here's hoping.
Hope and pray everyone will feel some better with each passing day.
We have always done our best to travel the day after the bad days - we have regular weekends all through the summer and then again during the ski season when school holidays in a given region start or end when it is a good idea not to go anywhere! And here where we live it isn't worth trying to go out - even into town - on Saturday mornings in the winter as the local ski resorts have their change-over. On the other hand, Saturday morning is less crowded up the mountain although people now come for the weekend so the benefit of the change-over day for the locals isn't as good as it was.
Delighted to hear the improvement - wonder how much is due to the improved vit D status?
MrsE
Rick,
Do I understand that you're saying that despite the lowering of your SED, CRP rates, you still don't feel as well as you did when you were on 10 mg.? Wow, sometimes I am fuzzy-minded with all of this. I know that I have been unable to go below 10 mg., despite good test results. Mrs. E has said that those results don't always coincide with how we are feeling. Anyway, I had to go back up to 11 mg/day a few weeks ago. That 10 mg. point is much harder for me to get past. 11 mg. has been better for me. Waiting a bit to reduce again.
Best of luck recovering from Thanksgiving. I overdid it as well, although I didn't have to drive. I just cooked way too much food and was on my feet for a ridiculous amount of time. Next year, I think I will try harder to simplify!
Gentle Hugs,
JannieHi Jannie,
Yes, even though my ESR blood test was better and my CRP was normal, I didn't feel as good as when I was on 10 mg. Not real bad, just more achy muscles (back of arms, and hamstrings in legs). I know I've read that some with PMR have normal ESR and CRP even from the very beginning, which makes diagnosis and treatment difficult. I'm glad the Dr. didn't push me to reduce right away but is allowing me time to feel more normal before trying to drop the dosage.
Thanks for the well wishes. Same to you.
Hi Jannie and Rick - you Americans are gluttons for punishment aren't you! Fancy having two major festivals within a month of each other!
Not that I believe in them, but this week I have seen 2 horoscopes for me and my husband - we are both Leos - both of which were so apt it was unbelievable. The first warned of big stress and keeping calm when being accused of something wrongly followed by an apology - the dates coincided with my having had my English criticised (I translate and correct professionally) by a Slovenian and with our recent car accident when an elderly man drove out in front of me at a junction (my right of way, he tried to say I was going too fast). The other was that Leos should aim for a "lazy Xmas" - we have been invited to a colleague in the south of Italy, we had expected a few days but the dates he is suggesting are 19th Dec to 5th Jan, the entire Italian holiday period. His wife is a wonderful cook - lazy Xmas it is!!!!!
I'm one of the people who has never had a raised ESR or CRP and was not diagnosed for about 5 years. I'm also interested in your comment about the difference in how you feel between two doses so close together - I take my steroids on alternate days and there has been a massive difference between 17 and 17.5mg per 2 days over the summer after having to go back up from 13.5mg/2 days because of a flare. I'm really struggling to go down again.
hope the results of your excessive Thanksgiving
MrsE
Hi Jannie and Rick
Tried Ragnar's method for reducing.
Full details on www.pmr-gca-northeast.org.uk under People's stories.
Quite a few have tried this method and it worked - but it did not work for others, which is normal for the course as we are all different.
Also it can sometimes be difficult distinguishing between withdrawal symptoms and pmr aches and pains. The trick as others have said, try and choose a week when you are doing as little as possible, then take a drop, wait five days and if the pain does not go away - go back up and try later.
And as Eileen would say, do the math, the lower the dose you are on, the higher the percentage drop. So slowly slowly but always remember, PMR has a mind of its own, it comes when it wants and goes when it wants.
We all wish it would just go and take a long walk of a short pier.
Here's the link to Ragnar's regime:
http://www.pmr-gca-northeast.org.uk/stories.php?id=12
Where Ragnar shares in part...
- "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, 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. I have done some travelling this
summer – we were for instance a week in Scotland (Glasgow, Edinburgh and
a short trip to the Highlands). I just take it easy when we walk and
when we visit a museum I just sit down to have rest while my wife does
it more thoroughly. I have just had my 72nd birthday, so I guess age
also makes me a bit tired. Taking care of a friend´s Golden retriever
keeps me busy and also makes me walk a bit more than I would otherwise
do."
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