pmr

Very tired and very depressed.  i was going to try to do this with hollistic technolgy.  Not a good idea?

Thnaks for the great info.  I am so new at this and kind of freaked out.  Have you changed your diet because of this.  I have cut out all sugar wheat and dairy. since those do  cause inflmmations. is this  a terrible

thing to have or can we  live a normal life.   what scares  me  the  most is being on steroids for so long and the damage they can do. thanks again

Karen, if there was a natural way to treat this condition, then we all would opt for them. The fact is steriods are the only way to control the inflammation. Many of us are on low carb diets, or anti inflammatory diets but these by themselves will not work.  Feeling tired and depressed are both symptoms of PMR and side effect of preds. These feelings will improve.

many of us also take vit d, calcium, magnesium and vit k2 supplements, these supplements help with loss of bone density which unfortunately can be one of preds side effects. Also daily weight bearing exercise will help too. Regards, tina

are you still on steroids?  for how long?  what mg?  You are really a big help. thx   hope you dont mind all the questions.  Just trying to come to terms with this.

Karen, I hope you've read my last post. PMR is classed as a chronic medical condition, and it is no surprise to me that you are feeling freaked out. We all were when diagnosed. When I was diagnosed I cried and cried and cried, then after a couple of months of feeling very anxious I woke up one morning and I was so fed up of feeling scared that I just said to myself, right you've got this rubbish condition and you're having to take these rubbish drugs to control it, but things could be worse, this condition won't kill me nor will the drugs, so hold on tight and even if I don't like the ride I reach the end at some point.

i put on a whole 3 stone so I adopted a low carb diet and have lost 1 stone so far. I was diagnosed 2.7 years ago and after suffering 1 flare I've reached 5mgs. Another side effect of preds and PMR is muscle weakness so from that point of view, yes, my life has changed. I was a very fit 52 year old when diagnosed, played tennis, horse rode, Zumba, jogged. The muscle weakness I experience doesn't mean that I can no longer do any of these things it simply means that after doing them, and not even to the same level, I am more fatigued and my muscles hurt more and it takes my muscles longer to recover.

as I said research this condition, knowledge is power, and it helps you understand why you are, or are not feeling the way you feel. Also research the medications you have been prescribed. Eg, unless you've had a dexa scan I wouldn't take Alendronic acid. 

You are now on this forum, read others queries or suggestions or experience and knowledge it all helps. All the best, tina

I think we all freak out.   I've been on pred for about 3 years.

I got down to 4mg a day and had a sciatica bout and back

up to 20mg and been trying to reduce ever since.  After you

get some info from this site you will come to a place of

acceptance and learn how to deal with what we all have.

I keep telling myself it's not terminal, I can live with this.

At my age 79 I expect to be on some dose of pred for

the rest of my life.....

Thanks Faye and to all who are educating me on this.  It's alot to take in but I will do my best.  Have a wonderful weekend.  so glad I found this chatroom.  I get real answers from real people.

Hi Tina I've just come upon this forum by pure luck!! I was looking up Dr Google of my symptoms and am convinced I have PMR. I have seen three different doctors at my GP clinic only because I couldn't get an appointment with the same dr and not one has been able to diagnose my problem based on my symptoms, except last week the gp finally prescribed prednisolone and palexia for the pain I did some bloods esr/Crp etc which all came back normal. I've had right hip pain for years and ultrasound revealed a probable bursitis/tendonitis. This area is now stiff and flares up after cortisone injections wear off( usually within a couple of weeks). However I have recently developed terrible pain and deep aching in my left hip area and you guess ultrasound revealed tendonitis and possible bursitis in the trochanter and iliac crest area. I had another cortisone injection but pain returned within a few weeks. I also suffer deep pain in my thigh muscles at night. I have also just developed a tendonitis in my left elbow. Last year I felt like I'd been hit by a truck every morning when I got out of bed. Ive started the pred today but I guess too soon to feel any relief yet.

It depends - some of us felt a massive difference just in a few hours! That was in muscle pain and stiffness - if you have widespread tendonitis and bursitis it will take much longer to fade away. I'd had PMR for 5 years before I was offered pred to try - within 6 hours I could walk downstairs normally! The hip pain took the best part of 6 months to go away though so don't be disappointed if that is slow.

Looking forward to hearing how you get on.

thank you, for making me feel a bit better.  It is just some of the things i read sound so bad that I start to freak out.  Started on 15mg 3 weeks ago.  Just hard to imagaine being on steroids for do long.  Guess i have to take it one day at a time. I have changed my whole diet and will go get magnesium and k2.  I have calcium with D and taking the osteoporisis pill once a week and going swimming as much as I can  Also going for massages along with my physical therapy which mt dr. recommened. And starting Yoga next week.  its a class for people with inflammation. What am I missing here?  any help is so appreciated for those who been doing this for a while  Thx

what do these badges mean?

At least you got a heads up that the journey would last a whle.  I thought I'd be on steroids for a month, to be "cured", then wean off over the next few weeks, to be finished in three months.  I didn't know I wouldn't be cured, just that the inflammation would be held in check by the medication. It was finding this site which helped me learn otherwise.

Karin, if this osteoporosis pill is called Alendronic acid, think very hard about taking it. Look up this drugs side effects. This drug can only be taken for 5 years maximum because it hardens the bones SO much that they in turn become brittle. Always tell your dentist that you are taking this drug, as there are certain procedures they will NOT perform as this drug affects your jaw bones. Research has shown that once this drug is in your system it will stay there for up to 10 years and they don't know yet if it stays there for longer yet because the research work has only lasted 10 years. There are concerns it could stay in the system forever.

ask your GP for a dexa scan, this scan will determine if your bones are thin and therefore if you require this medication, which if you do is fair enough. But if like me you are given this drug as if it were a sweet, following research work on this drug I requested that I stop taking it after 11 months. I have just had a dexa scan and my bones were perfect! So there was no need for me to take this drug. However, my dentist has warned me that she will send me to a specialist for certain procedures not because she cannot do them but because I suppose she doesn't want the responsibility of doing these procedures because I've taken AA.

vit d, calcium, magnesium and vit k2 at RDA levels should suffice, plus daily exercise.

regards, tina

karen, the badges we we are all wonderful special people!!!! Seriously? I haven't a clue. Regards, tina

Karen, just to add that the gold star treatment plan is 15mgs for 6 weeks, 12.5ngs for 6 weeks then 10mgs for anything up to a year, I was on 10mgs for 6 months. Then many of us follow what's known as the dead slow and nearly stop method that was actually created by a sufferer. I use it but only ever reduce by .5mgs, then I stay on the new dose for 6 weeks then start the next reduction. Regards, tina

 

Tell me more about this osteoporosis pill you are on.  I sincerely hope you were sent for a DXA scan before being prescribed anything as the potential bone thinning side effect of pred does not affect everyone, and even so can probably be managed by the dietary and nutritional supplements plus exercise you are already doing.

I am on  Aledronate 70mg once a week.  My Dr. did not do a osteo test becasue my  insurance will not allow me to have one until October. We can only have them every2  years (US)  My last teat showed I had osteopinia. She is concerned about my bones,  is this bad to take?  I go back in a few weeks and will ask her. what do you suggest for dietarty and supplemment.  Thanks for you help.

You already said you were taking things like K2  so I assume you are quite well informed about the various nutrients you need for bone health.  I think Tina outlined some of the possible problems with aa in her recent post.  We are just concerned you may be taking a medication you don't need.  Please make sure you get the scan as soon as you are able.  Is it very expensive if you have to cover the cost yourself?  The problem with all the OP meds is that they stop normal bone remodelling, so that any new bone is built up on old bone, and that's what makes the bones potentially more brittle, completely defeating the reason for taking the meds in the first place.  I'm afraid we ar all rather in the thrall of the drug companies, and the doctors don't always have time to become better informed.Why not also look in on the osteoporosis forum?

No I am not tkaing K2 or magnesium. Still working on the hthngs i need. Can you tell how much of each I should take.  I am taking calcium with d 600mg.  Is that enough. I allso do b12, vit E, daily vitamin, biotin(for my hair) and flaxoil.  is this all good?

Those all sound good.  Do you have access to a registered dietitian (sometimes supermarkets have them on staff, not to be confused with people who are just glorified clerks, their qualifications should be available).  I don't presume to know what level of supplements you should take, but there is quite a lot of info online.  I will private message you a little essay I've written for myself, and have shared with others.  Always with the caveat that it is ONLY my experience, I have no medical training.  However I've recently learned that my vitamin D level is nearing a toxic level, despite still being within current guidlines, and I think it's because of a long ago diagnosis of sarcoidosis, which as it had never caused symptoms I thought was now irrelevant.  So nothing is ever straightforward, and we are all different.

In fact I read somewhere that doctors who specialize in the aged do so because they find geriatric patients so interesting.  Our lives have made us each unique.  Not that you're "aged" yet, but you are bound to be much more interesting medically than an average baby or tot!

You know what Karen, it's only 4 months till October, I would be inclined to take the supplements (vit d, magnesium, calcium and vit k2) and do a little weight bearing exercise daily. Then in October see if  your osteopenia diagniosis has worsened. I believe osteopenia means you are borderline, so you may have to take AA. But as you are borderline I am not surprised that you are a bit worried. Regards, tina

My results classify me as osteopenia - but they are well within acceptable range. There is quite a broad range and it depends where you are on it. 

I agree with Tina.

karen, the magnesium and the vit k2 helps with the absorption of the calcium and vit d. I take the RDA amount for all my supplements, however, I do know that some patients do take higher amounts.

in relation to other supplements whether it be other minerals or even camomile tea, always research that taking them is ok for people taking steriods. Eg, I think liquorice is not good for us. Regards, tina

I took my last one this morning.  Wish I had asked this yesterday.  But I only did it for 3 weeks. thx

Better than me Karen, I took them for 11 months, then quite by chance joined this forum and what were they all discussing, AA! I researched the drug and stopped immediately. As I said I recently had a Dexa scan and I'm fine. I should never have been handed this drug as if they were sweets. Regards, tina

 

A bone specialist was on US public tv recently and said (among many other things) that there were five key ingredients for bone health five things we must get enough of - Calcium, Vitamin D, Magnesium, Vitamin K2 and Potassium.  Some of our needs can be met through our food, and that is always best.

Also exercise is really important.  Weight bearing - as simple as a good walk - tai chi, maybe Nordic walking.

so thankful for this site. 

You have to be careful with calcium.   Too much can cause

some serious problems.   You don't throw off excess like

with Vitamin C...it stays around....everyone check with

their doctors or someone that is up to date.

Faye, that's why K2 and magnesium are so important as they make sure the calcium goes to the bones, not the blood vessels and organs.  I've given up my bone supplements for a few weeks to allow my near toxic level of Vitamin D to come down.  It's kind of good, actually, because now it's easier to find windows of time to take a much-needed iron supplement.  Sigh, will this never end?

Calcium is one of the blood tests that should be done every 6 months or so when you are on calcium supplements - and various other medications. Electrolytes are also important.

Morning Eileen, I understand that too much calcium is as bad as not enough but what reading of a blood test result should I be looking at to see the position of my calcium level.

under my bone profile there is, serum calcium, and serum adjusted calcium conc. Or are these two readings not the ones I should be looking at? Regards, tina

Serum calcium - is there not a range in brackets after the level? That will show your local lab's reference level, they vary a bit.

This is aimed at professionals so may be a bit complex to understand:

https://patient.info/doctor/hypercalcaemia

which also includes a lot about what the various levels might suggest. It says the "corrected calcium level will, by definition, be raised".

 

Hello Eileen, thanks for the clarification. My serum calcium is raised by a few points so I think I'll lay off the calcium supplements for a bit. Thanks, tina

It can be raised for other reasons - so do get it checked again to see if stopping the calcium supplement makes a difference. If it doesn't - discuss it with your doctor.

Will do Eileen, I've just read your link so will definately keep a look out. Regards, tina