Thank God for you guys!!!

Bones, joints and muscles
1

I am so delighted to have found a site that I can follow other patients with PMR, like myself, and to be able to follow your diets and comments. I am 68 yrs old, and diagnosed with PMR just recently

in August 2013. My symptoms started overnight - so weird that I just did not know what happened. Went to bed feeling fine,and woke up that I could barely get out of bed with pain in my whole body and my legs. I thought I must have slept wrong.... but as the days went by, it continued day after

day for almost 2 weeks (taking Advil with not much help), went to see doctor. Explaining to him my symptoms, he saw that I had eczema in my elbows and asked me "how long" have I had this condition. I have had eczema issues since I was a child - and had NO IDEA that PMR is related to this, as you get older. He told me, "he was almost sure he knew what my condition was", ran a lot of blood work and 2 days later told me I had contracted PMR. I never heard of this illness before

(and I am in the medical field). He put me on 20 mg Prednisone and for the past 4 months have been weaned down to 10mg, (however 3 weeks ago, my symptoms returned so now I am back to 20 mg again). He says maybe we went down too quickly.

Reading your stories about stress related to PMR, let me tell you: Over a year ago, out of the blue, I started a series of "panic attacks" where I had to be put on B/P medicine and experienced some anxiety - all stress related to my job.... Now looking back, I do think definitely Stress issues in your body must wreck havoc and must have started my PMR condition.

I am so glad to have found you all - and to read your way of improving ourselves to get better. We are all in the same situation and I thank you for your suggestions. I do try to eat a lot of vegetables and fruits, oranges seem to agree with me -I take one in the mornings. Also I happen to love tomatoes, I did not know they were bad.I will go in the website and see what foods are anti-inflammatory

Thank You all so much....

2

Hello bluemoon and welcome to the 'club' of reluctant members!

I'm so sorry to hear that your pains have resurfaced necessitating an increase back to your starting dose. If you can manage to slowly reduce back down this time to around 12.5mg successfully, then it may help if from that point you only reduce by a maximum of 1mg at a time. In this way you should be able to tell at which point the inflammation may be resurfacing so that you can quickly return to the previous dose at which you felt comfortable and stay there a little longer.

I haven't heard that "PMR is related to eczema as you get older". However, there is a condition called psoriatic arthritis where people who suffer/have suffered with psoriasis can be at risk of contracting this form of arthritis. This is something I learned at the outset of my illness when a consultant in trying to diagnose me asked if I'd ever suffered from psoriasis.

I suffer from eczema in my ears for which I am prescribed steroid cream. There was an article in the press some time ago about keeping eczema at bay and one section recommended Elidel cream and Protopic ointment as a newer class of medicines for reducing the inflammation of eczema. Apparently they can be used in combination with steroids to get the best effect, and don't cause thinning of the skin, so can be applied to delicate areas such as the face. The article went on to say that aqueous cream should not be used for eczema - not even to wash with, adding that it is incredibly damaging to skin because it contains sodium lauryl sulphate, which is the harshest possible detergent. As a consequence , it breaks the skin down, making eczema worse. I just thought I'd pass this on in case it might help you.

Yes, like you, many sufferers of PMR have referred to a period of stress in their lives pre-diagnosis; others have blamed it on a flu virus (or even the vaccine); whilst others have said it started after commencing statins. Unfortunately there is, as yet, no known cause or cure. One thing that is certain from those of us who have experienced PMR is that stress of any form (physical or emotional) is certainly best avoided if at all possible during the course of our treatment.

Good luck with your reductions this time round.

MrsO

3

No - I haven't come across anything to suggest PMR and eczema are associated - signs of skin problems actually are sought to make a differential diagnosis between PMR and psoriatic arthritis as MrsO says. Not that it makes that much difference - the treatment is still pred.

I think she is also right in feeling you maybe reduced a bit fast - and hallelujah for a GP who is aware of that! It isn't just a case of staying on a dose for several weeks it is also a case of needing VERY small drops, 1mg max. at a time for many people. I also take several weeks to reduce by 1mg/day: new dose for one day, old for 6, new dose for one day, old dose for 5, and so on reducing the number of days between new doses by one each time to alternate days and then increasing the number of days on the low dose in the same way up to new lower dose for 6 days, one day old dose and only then going to new dose every day.

You may also be interested in these links to other places to find out PMR and another forum:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

Eileen

4

Oh - forgot to say - I removed tomatoes and peppers etc from my diet for quite a long time - it made no difference except to make my diet boring! Nor does removing gluten - I was eating gluten-free when my PMR started as that is the only option in the UK to eat any bakery when you are allergic to wheat!

A very very strict vegan diet helps about half of patients with RA but adding any dairy/meat even in tiny amounts stops the benefits. It is very extreme so is difficult to stick to and puts you at risk of a lot of deficiencies if you don't know what you are doing.

Eileen

5

I've interpreted the advice read in this forum and set my alarm for 6 o'clock and take my preds with yogurt and water and then see if I can get back to sleep. I explained this to my GP this morning and he thought I was clever to have worked that out ( I hadn't seen him since picking up the script so he hadn't given me the lecture). Of course I didn't put him right, I took the glory for myself.

Things are a lot better now, I only ache until mid morning then I'm fairly pain free ish.

Has anybody come up with a cure for the bit where I'm wired up enough to knit chainmail all night?

6

Steve

You might have to carry on night-knitting for a while longer as I doubt anyone has come up with an answer to that one yet! lol I started on 40mg and was almost climbing the walls. The good news is that it does get better as you reduce the dose. Glad things are improving on the pain front.

MrsO

7

Hi everyone,

introducing myself. I'm a 58 years old female, born in Brasil with 100% Portuguese blood ..living in the USA for 30 years.

Develoved PMR overnight.. this past August, swimming on Sunday and sick on Monday..weird feeling, just like Humpy Dumpty..( I was being treated since March for a lower spinal herniated disk-stenosis).

Within two weeks I was diagnosed with PMR confirmed by the blood work.

I started with 10mg, then 20mg ,then 30mg of preds..

Right now I'm on 12.5mg for the past three weeks, taking at 2AM ..saw my rheumy yesterday and he suggested that I go down to 10mg...

I'm scared...very scared..

need your support, thank you

8

Hi zanausa and welcome!

First of all - why are you scared? Neither PMR nor pred are the end of the world and your rheumy does appear to be pretty on the ball since a study has shown that taking your pred at 2am is the optimal time for morning stiffness! It is easier to use a form of pred called Lodotra but I'm not sure if it is approved in the US yet and is relatively expensive. You take it at 10pm and it releases 4 hours later at 2am - I've been on it for well over a year now and find it is great with no side effects I can identify - all the ones due to medrol have gone (that was awful).

PMR can't be cured - I know some people find that scary - but it can be managed well with pred in the vast majority of cases. Using pred allows you to manage the symptoms until the underlying autoimmune disease goes into remission itself - in the meantime it is drug-induced remission but it does allow you a fairly normal life. With care and watching what you eat very strictly you do not necessarily put on a lot of weight (since being on Lodotra I've LOST nearly 30lbs).

The only thing I would ask is why he started you at 10 - which is universally seen as far too low - and then felt he needed to go up to 30mg. The usual starting dose is 15-20mg and that works for nearly all patients, 12.5mg works for more than three quarters of patients. If it was because 20mg didn't work there may be a query as to whether you have pure and simple PMR. And in our experience dropping 2.5mg at a time is sometimes a problem and 1mg at a time gets better results. I couldn't get much below 10mg until I started reducing 1mg at a time and that not overnight, I take 5 weeks to get from every day of one dose to every day of the new dose. Now I have got to 6mg/day. The long standing advice from top experts (in the USA at that) is not to drop more than 10% of your current dose at any one time - so 1mg is well within that and simple if you have 1mg tablets.

cheers for now - come back and ask any time and anything you need to know and we'll try to answer you. Not much defeats us.

Eileen

9

Hi all.

I've been taking 20mg of preds for 10 days now and have found the change remarkable. I set my alarm for 6am and take them with some yogurt. Now having just read that the optimum time for taking is around 2am what I 'm asking is should I take them at 2am (bearing in mind I might well disturb my wife, who, I'm sure would not mind one bit) , should I stick to 6am or, should I take them as early as is practical, I am awake at odd times throughout the night ?. Is regularity essential ?.

10

"bearing in mind I might well disturb my wife, who, I'm sure would not mind one bit"

As a wife - is that said with tongue firmly in cheek?

You've seen that taking them early works better than later. The study I referred to was done on hospital patients with rheumatoid arthritis to find out at what time various things happen. It was established that taking the ordinary pred (white uncoated tablets) at 2am achieved the highest pred level in blood at 4am and that cytokines, the substances that cause the inflammation and hence the pain and stiffness appeared in the blood about 4.30am so the pred was there, ready and waiting so to say. However - how many patients want to wake up in the middle of the night to take tablets if they don't have to? This led a German company to develop a delayed release form to be taken at 10pm within 3 hours of food, released at 2am, etc etc. I'm not sure offhand whether the study was done and the company took up the idea or the rheumys/company had the idea and did the study. Whatever - Lodotra was the result, the stuff I'm on).

Regularity to the minute isn't "essential" - sometimes I take mine at 9.30, sometimes it is 10.30, mostly it is about 10pm and I can't say I feel a great deal of difference from day to day. There are drugs that must be taken regularly, for us pred isn't - although there are patients who have alarm reminders on their phone because their pred is essential to life (congenital adrenal dysplasia).

If 6am works well for you - carry on. Technically it should allow you longer at the other end, some people find the effect beginning to wear off a bit by evening anyway, taking it 4 hours earlier might make your evening or night's sleep less comfortable. Taking it later might leave you stiff when you want to be getting going for the day. Everyone is different and a bit of experimentation is OK - just don't try a day without and then take a double dose as a one-off! Taking it all in one dose has the biggest effect - but some people find it works better for them taking 2/3 in the morning and the rest later in the day because they need a good evening and the effect is wearing off. The anti-inflammatory effect lasts from 12 to 36 hours or so depending on the person. I used to take my ordinary pred as a double dose on alternate days, so 48 hours between doses and it worked fine (it is an approved way of using pred once you are below 10mg/day but you should transfer from 10/10 to 20/0 over several days to avoid problems). I certainly had few side-effects as a result which is the idea.

Delighted to hear you feel so much better - I'm not sure you believed us did you ;-)

Eileen

11

I too would like to experiment with taking my prednisone earlier in the morning as my stiffness is usually the worst when I get up in the morning - and then is gets better throughout the day and stays away in the evening too. You frequently mention taking the pills with yogurt, but I cannot eat dairy or gluten. Would it be ok to take my 5 mg dose with a glass of grape juice?

12

Hi all,

and thank you Eileen for your prompt reply (I thought you would smile )

The reason I started with only 10mg was because my GP was the one who first diagnosed as PMR and perhaps she was not too familiar with the treatment until I could see the Rheumy, 10 days later.

I have to say that I'm taking the meds at 2AM not from my doctor's suggestions but from reading your blogs and the difference I felt was unbelievable, like waking up as a new person. It is awesome!

The only draw back is that sometimes I can't go back to sleep normally, but hey it's a trade off..

We have here " Rayos", slow release preds approved by the FDA but my medical insurance does not cover it and it's very costly.. so I'm sticking with the old fashioned one for the time being.

I am always scared every time I have to drop the dose, I get the fear of all the symptoms coming back roaring like lions..

As I mentioned I'm on 12.5mg for the past three weeks and I think it's too soon to drop to 10mg as the rheumy wants. I wanna wait another week for that and I will try 11.25mg (to try to break that pill will be fun).

2014 here I come ! I keep you posted..

Have a great weekend..

Zana

13

MrsCJ - the reason we suggest live yoghurt is because of the benefits of the cultures in it as well as the efficient coating it forms on the gut. It doesn't really matter what you take it with - what is important is having something to "line the gut" and reduce the effect of the acid production in response to "food" since pred is a gastric irritant anyway. Many doctors hand out omeprazole or the like (PPIs) - but they lead to poor absorption of calcium and can cause osteoporosis, exactly what they want to avoid in association with pred. PPIs also have their own side-effects which can be really unpleasant. Yoghurt isn't a problem for most people. You can take a sandwich of some sort or anything you would use as a snack that will sit by your bed without being in a frig overnight - it's only something to save you having to get out of bed and go to the kitchen as stupid o'clock! I wouldn't use grape juice - it's just a rush of sugar and not really solid if you see what I mean. I do appreciate the problems of finding something lactose and gluten-free! How about a banana?

Zana - a group in Bristol England recommends 6 weeks on 15, 6 weeks on 12.5 and then a year on 10mg. This seems to cut the rate of relapses to about 20% rather than 60%. I reduce by 1mg at a time - and over weeks. This is the scheme I posted on another forum earlier today:

I take the new dose for one day then the old dose for 6 days, followed by

new dose for one day, old dose 5 days (e.g. 5mg for 1 day, 6mg for 5)

new dose one day, old dose 4 days

new dose one day, old dose 3 days

new dose one day, old dose 2 days

new dose one day, old dose 1 day (e.g. 5mg for 1 day, 6mg for 1 day

This takes you to an effective reduction of 0.5mg.

Then it is old dose 1 day, new dose 2 days (6mg for 1 day, 5mg for 2 days)

old dose 1 day, new dose 3 days (e.g. 6mg 1 day, 5mg for 3 days)

old dose 1 day, new dose 4 days

old dose 1 day, new dose 5 days

old dose 1 day, new dose 6 days

By that stage I feel taking the new lower dose every day is fine. I have found reductions VERY difficult and that is why I do it so slowly. If you are not so sensitive starting with new dose 1 day, old dose 4 days is probably perfectly OK.

You could try that as well as cutting your tablets. If you go to a pharmacy they should be able to sell you a pill cutter which makes it a bit simpler - you can certainly get them on the internet.

If you keep the reduction as small as is reasonable and stay on the new dose for a few weeks before trying again you don't need to worry about the symptoms coming "roaring" back. It is big reductions done too fast that cause the problems - done slowly you have time to notice that you are starting to feel stiffer or have pain again and know not to reduce further and even go back to the last dose you were good at. Something else that often helps is to clear the decks and make sure you have a minimum of stress in the couple of weeks after starting a reduction, learn to say "NO" - at least, "not this week". You have to become a self-preservationist - you come first. It is unlikely someone will die because you postpone something - and if that IS a real risk you need help, you are no longer fit enough to take that sort of responsibility. If you get worse you will be unable to do anything - learn to pace yourself.

Have a good New Year!

Eileen

14

Any body out there got any thoughts or tips about taking Alendronic acid and /or Omeprazole.?

My doctor, who I trust implicitly, has prescribed them for me. Taking the Alendronic acid seems to involve a lot of don't do's for early morning medication.This is where experience and therefore. fora come into their best light.

15

Hi Steve, the best advice regarding Alendronic Acid is to have a DEXA scan first. If your bones show no sign of thinning, then you don't need to risk the possible side effects of taking this drug. The latest advice to GPs is that any patients on Alendronic Acid should be taken off it after a maximum of five years due to the discovery that it cam cause necrosis of the jaw and hip bones in some people. I didn't take it and in spite of being on steroids for 5+ years following a high starting dose of 40mg, my bones remained fine. I ensured that my diet contained plenty of calcium-rich foods and walked daily, as far as my pain allowed. Walking is excellent weight-bearing exercise for our bones. Have you had a Vit D blood test? If not, then it would be a good idea to ask for one as if you are found to be deficient a course of Vit D3 will help to restore levels to normal and have the added effect of allowing more calcium from your diet to be absorbed into your bones.

With regard to Omeprazole, I was prescribed this by my GP at the outset of steroid treatment but it had a bad effect on my stomach - strange considering it's supposed to protect the stomach! I also tried Lansoprazole but that caused pain. My rheumy advised me not to take any of them and reassured me that I would be fine without it. I relied on a daily 'live' yoghurt with my breakfast before taking the steroids and my stomach was fine throughout.

I wish you a very happy New Year - there are fireworks going off all around us at the moment!

16

MrsO has said most of what I'd have said.

Unless you have a dexa scan they cannot know whether you need it - it is assumed that any woman over 65 needs it but we know at least 2 ladies of about 80 who have above average bone density - one has a very heavy smoker all her life! I have been on pred for four and a half years, almost the entire time on well over 10mg and occasionally much more. I had a dexa 3 months in and another last spring and they were to all intents and purposes identical. The best time is about 3 or 4 months into the pred, most bone density loss is felt to be in that time. The higher the dose the greater the risk but PMR doses are relatively low and in any case less than half of patients on pred lose bone density.

If you have been given AA you should have had your blood calcium and vit D levels checked first because they MUST be normal or the AA doesn't work. You need calcium and vit D supplements as well. Omeprazole also causes loss of bone density - I've never taken it. Yogs and taking pred always with food has been fine for many of us. If you are going to take AA you need to have any dental work done BEFORE you start it - many dentists are very wary of touching patients on AA as the jaw problems they have experienced are not simple.

Ask again if you want any more details - and try the search function for "alendronic acid and teeth" on here where we discussed AA and its history and downsides at length.

17

Hello everyone. I was gone for a couple of weeks, (was scheduled for surgery) and was not able to read anyone's responses. I love this website and all your help. I had no idea, that the Pred gives you a better result if you take it early in the morning!!!! I am going to try it tomorrow. I thank you ALL so much!!!

Had a hemorrhoidectomy (the most painful surgery I have had), it was a nightmare for almost 2 weeks. Between the surgical pain, and the PMR - I was a mess. My doctor checked my blood work, and the Sed Rate went up a little now. Crap!!!!! He says it probably is a reaction to the surgery, to stay in my current 20mg.

Also have anemia, so have to take iron. Regardless I am feeling better, little by little, and I am glad I can log in again.

Once thing Mrs O said, that is SO TRUE!!!! I have noticed any emotional reactions and stress does affect me, I did not realize that. Thank You.

18

Welcome back bluemoon - that surgery sounds bad enough at the best of times let alone when suffering from PMR. Glad that's all behind you now (excuse the pun!), and glad to see you've still got your sense of humour too in spite of everything.

The ESR no doubt increased due to the stress of surgery on your body so staying at 20mg is a must for now - no decreasing until the next blood test shows an improvement and that you also feel better.

I was also anaemic at diagnosis but that resolved itself as the inflammation improved.

All good wishes.

MrsO

19

Yes - not a surgery I fancy from all I've heard!

Anaemia is often found in patients with PMR - common in autoimmune diseases generally. I hope you have nice iron tablets - some really go for your gut!

Glad to hear you are on the mend though - and MrsO is so right to say wait until you feel rather less stressed before reducing.

Eileen