Creatine

The recycling has already taken the paper away.  Actually it wasn't a big endorsement by the doctor.  It was an answer to someone who wrote in.  He did say it was safe.  From what I am reading, I have decided not to try it.  

I have decided not to take it.  I am actually feeling pretty well, so don't want to add something that is not needed and might cause a problem.  I am already taking lots of vitamins that have been recommended including the K2 that you recommened.  

I do eat a very healthy diet.  I eat lots of fruits and veggies.  I drink plenty of water.  Yes, I am on prednisone.  I began with 20 mg the first of May am down to 10 mg and am totally pain free.  I usually walk four to five miles a day.  I wear my Fitbit and really keep track of the activity.  My main complaint is that I have not been able to walk that far and get tired, but I have to say that this is probably due to the climate in which I live.  It hits 100 on a regular basis in the summer.  I need to get out very early to get a good walk in.  So, I guess that I would not be wanting to buy the creatine. I have had no weight gain, I am slender normally, but do not want to buy a new wardrobe, so will stay away from anything that would cause a gain.  Thanks, Donna

The fact you are not able to walk so far and get tired is due to the PMR. The steroids will reduce the inflammation thus helping with the pain, but it does nothing else for the PMR. You will still have all the symptoms of the illness. As long as you respect that and do not overdo things you should be fine. Keeping active which you obviously are, should really help though.

Thanks, I guess I am just frustrated since I am so used to being active.  I thought that it was the prednisone that was making me feel so tired.  It does not help that I live in such a hot climate too.  I appreciate your response.  I guess I need to be patient, I am not always good at that.  LOL

You are doing remarkably well Donna!

If it ain't broke, don't fix it!

I agree, so I think I won't mess with it.  I had wondered how you were doing. I was gone for a week on a road trip with my youingest daughter.  Had a great time and PMR really didn't cause me any problems on the trip.  I know you have other things besides the PMR with the facial pain and all.  I hope that you will be feeling better soon.   

I've had a strange week - really quite ill on Monday and Tuesday - ended up going home from work at lunchtime and sleeping for the next 18 hours or so! BUT, since then I've been better than I have for months! I have to wonder if it the new drugs (Plaquenil) messing with my weekly dose of Methotrexate - but who knows. I certainly don't!

I'm off on a short road trip tomorrow - just for three days over the weekend - can't wait! It's getting out of the car after a few hours that's a killer!

I'm almost certain I'm going to go back to my AIP 'lifestyle' as I know it makes a huge difference to how I feel - I'm seeing a new Dr in two weeks who specialised in nutritional medicine - not a nutritionist, but a 'real' Dr... lol  I'm almost convinced I've got some food intolerances going on, but no idea what they are.

I am not sure what the AIP lifestyle is.  I am glad that you felt better after your obviosly much needed sleep.  I hope that the road trip gives you a boost.  I really enjoyed mine.  Hope the new doctor is a great help to you.  I have a dear friend who has celiac disease.  Her symptoms were almost identical to PMR.  She lives in France and they finally got a handle on it.  She is doing well, just has to be super careful and read labels all the time.  I hope that you can find what is causing all of your varied symptoms.  Take care, Donna`

AIP stands for "autoimmune protocol"... I call it the "worse than paleo diet"....

Back from my road trip - exhausted but had a great time with my girlfriend, we laugh all the time. I wish she lived a bit closer - it's an 8 hour drive!

Thanks, little by little I am learning what these acronyms are.   Glad you had a nice trip with your girlfriend, getting away is good for us.  I sure enjoyed the road trip with my daughter last week.  I sure hope that you begin to feel much better, you have had a lot to deal with.  Donna

Thanks, I appreciate your answer.  I was begiining to think that perhaps some of it was just psychological.  I do find that if I am with firends or doing something fun like a road trip my daughter and I took that I felt better.  Sure would love a shot of energy, but guess that is not something anyone has come up with.  :-)  I go to my rheumotologist on Monday, eager to hear what he has to say.  At least I will say that I think I have been lucky to get down to 10 mg of prednisone and am still pain free.  I am thinking that, from what I read here, I will probably have a return of pain when I go below that dose.  I am not sure how soon the doctor will want me to go down.  I will Google The Spoon Theory as soon as I am done here.  Thanks, Donna

Hi Donna there is no reason at all you should get pain when going lower than 10mg if you take your reduction slowly. You may find you get a little tired when you hit around 7mg when your adrenal glands have to leap back into action though. 

Thanks, I keep reading on here that almoat everyone talks of being stiff and aching as they reduce the prednisone.  I am hoping that this does not happen, but have begun to think that it is inevitble.  I am feeling more fatigured at 10 mg.  I just reduced to that on Monday, so day 4 now.  Maybe my adrenal glands will leap back into action.  Thanks for your positive spin on this.  :-)  Donna

Increasing pain is not inevitable.  In my case I had such a brilliant response to pred that all  my aches and pains went away, including long standing ones caused probably by osteoarthritis in my spine.  That pain has come back, sadly, but even at a very low dose of pred (3 mg at present) I have none of the debilitating aches and loss of range of motion which PMR caused.  I do have a few "niggles" but if this is all I had ever felt I'd have just put it down to old age and carried on as they are not a problem.  Just enough to let me know the disease is still active and that I'll need to stay at this level a bit longer than at other points in my taper and also because my adrenal glands are really not yet up to snuff.  I'm going to talk to dr about this next week.  I've been using the dead slow nearly stop taper since 10 mg, so I can vouch for its effectiveness.

Thanks, I have been worried that I might get back to the horrible pain that I had in the begining where it was difficutl if not impossibel to get dressed within a couple of hours of arising.  The only thing that got me out of bed then was the need for my little dog to go outside.  I would cry out in pain just putting my robe on, just any movement hurt.  So, if I end up with a few aches and pains here and there, I can handlet that.  Just happy to see some positives on here.  I hope your appointment next week goes well.  As to the adrenal glands, what part of the blood work shows that?  I need to be ready with questions for my doctor on Monday.  Thanks, Donna

I haven't had a test.  I understand there is one (synacthen) but there's no point getting that until you're below the physiological dose of pred, which is 7 or below and even then only if your fatigue is persistent and debilitating.  Although I get tired easily I don't feel I need this test as I do still have energy to do most things, I'm not entirely "flat".  But I want to run this by my GP just in case she thinks otherwise.

I think most of us are prepared to put up with a few niggles.  If I wanted to be as painfree as I was at the beginning it would mean staying at 10 or above forever, and in the long run that would be a bad idea because pred for all its virtues is not safe enough.  But as Eileen and others say, there's no point taking less than you need in order to avoid the debilitating pain and "stiffness" for want of a better word PMR caused before we got treated.  That would simply mean having both the disability of PMR and the side effects of pred!  What we want is to reduce pred to the point where PMR is still controlled, but the possible side effects are also reduced as much as possible.  Learning to ride a double headed dragon!

????

I guess I just felt there should be a test as the mention of "adrenal gland insufficiency" was menitoned over and over again as a horrible thing for your body.  I took it that this could be life threatening.  In some ways, I have felt TMI in all of this and felt pretty much like I wasn't sure I wanted to know all of this.  :-)  I am really not able to do anywhere near what I did before and that really does bother me.  I have said though, I live in a very hot climate and every summer I have felt that I had less energy because of that.  I keep thinking that the heat does have something to do with it.  Thanks for all of your good words. Donna

Until your pred dose is down to about 8 or lower pred itself will be supplying the cortisol your body normally makes, which is why a test at this stage wouldn't be useful.  Certainly worth mentioning it to your doctor so when the time comes he/she is happy to send you to have it done.  The fact that we are on prednisone is why we are told to carry a card with that info or wear a bracelet with medical information, so in case of accident or other health emergency the first reponders know that you will need to be supplied with the artificial steroid as your body is currently not making its own.  I understand that it can take up to a year after weaning completely off steroids for the whole hormone thing to be back to normal balance again.  For some people that doesn't happen and they have to take a dose for years or forever, but time enough to worry about that.  Right now your concern is to keep the PMR inflammation in check so that you feel well.  

Oh, my goodness, I was not told to carry info on Prednisone with me.  I was just on a week's trip, glad nothing happened.  I will make up a card to carry with me.  Good to know this.  I am making a list of questions for my doctor on Monday.  Thanks, Donna

Where do you live?  I wouldn't have been aware of this had I not been following UK sites like this, because it's not mentioned except in fine print on the info sheet provided by my pharmacy (in Canada).  Pharmacy knew nothing about cards such as are provided in the UK.  Once I fully understood that prednisone was going to be a longterm part of my life I bought a rather pretty medical id bracelet which comes (as part of the one time initial price) with a lifetime online medical journal where you can keep all your relevant medical info updated for the use of first responders in case of accident.

I live about 45 minutes from Palm Springs, CA, thus the heat.  Yes, I think that all of this must be more prevalent in the UK as there are a lot of people on this site from there, also quite a few from Australia.  Hmm, I might look for a medical bracelet, probably a good idea.  I do like, however, that I have gotten down to 10 mg in a short three months from the onset though.  If I were doing the dead slow from 20, I would probably still be at about 16 or 17.  I am totally pain free, so do like that I was able to get this far without pain.  I finally got out and walked today.  Surprisingly, it is only 82 here right now, (I walked at about 12:30) usually it is close to 100 and, of course, that is not a temp that anyone wants to walk in.  There is even a bit of a breeze coming in from the west, so that is good too.  Thanks, Donna

Do your homework.  One of the major suppliers comes with a monthly fee.  With a longterm condition that's no good!  Look for the one which has id in the name, not the one with alert.  

Thanks, I will do that!!!  Moving away from my computer now.  I had a late breakfast, so time for a late lunch now.  It is 1:30 now.  I usually eat lunch around noon.  :-)

You can usually get from 20mg to 10mg relatively fast compared to below 10mg, when it is a good idea to start the slow reduction. My rheumie tried to get me to reduce 5mg at a time to start with, which was definitely not a good idea in my case. 

A synacthen test would not be given until you are below 7.5mg as the result would not be correct as the adrenal glands would not need to have started working. It is not just a matter of a normal simple blood test, it is usually done in a hospital, they like to do it in the morning normally. It is then done over a period of time, there is a short and a long test, but both take time. You will not be able to take any steroids before the test, but it is suggested that people take them with them so they can have them immediately after, so they are not doubled up in pain!! 

I only found out about steroid cards through reading the internet. I have bought a bracelet too, although you can also get necklaces. 

 

Thanks, the five at a time has worked for me from 20 mg.  I got the impression from the doctor's nurse that he will reduce me more slowly from now on.  As long as I am pain free, I won't complain.  I just don't like the tired feeling.  I am feeling lazy and I don't like that.  I am going to Google for the bracelet now.  I have been away from my computer for a bit.  I appreciate leaning more of the test for adrenal gland insufficiency.  not hoping to have that test now.  LOL

The tired feeling is a symptom of PMR sadly.

In fact I imagine most people do not have the adrenal test, only if they have adrenal symptom problems.

Ptolemy, I don't remember being particularly tired until I'd been on pred for about six months and getting to where the adrenals have to start playing their part again.  Now I think I'm quite wallowing in being able to say "I'm tired" when I don't want to do something.  But it's true.  

I think it is all relative. Before diagnosis when we felt like rot and then suddenly the miracle pred taking away the pain, we forget that there was the tiredness along with the awful pain.

I find that I am more tired now my adrenals are supposed to be waking up, but my friends think I can carry on as I did before PMR. The "tired" approach has failed in my case. I will have to work on it! 

 

The winter of 2014-15 (referred to here as the winter from hell) I had PMR, still undiagnosed.  I had no trouble shovelling copious amounts of snow, in fact I did more than I needed to because ice made walks impossible.  This is at the same time as I'm having trouble getting out of bed, getting in and out of the bath, trouble washing or brushing my hair, etc., etc.  I had probably had first symptoms in May and wasn't diagnosed until June of the following year.  This past winter, having started pred mid June, I found I had far more trouble doing any heavy lifting, including that shovelling.  - Thank goodness winter wasn't like the previous one!  But the point is, I think pred has caused me more muscle atrophy than PMR ever did.

Hi Donna I  live in Phoenix, Az So I understand the heat...

Wow pain free . Thats Wonderful

Im on a higher dose of 25mg and  new to PMR

Trying to taper down. Love this site!!

 

Yep, Phoenix, you do understand the heat for sure.   I have been chalking up some of my fatigue to the heat.  I also think that I am a bit bored.  When I am with people, I am able to move around a bit and get my mind off of being tired.  I have been a little concerned as I am giong with a group of people for two days to Disneyland.  That is a lot of walking, so hope I am not a party pooper.  Yes, I have been pain free for about five weeks.  I was on 20 mg from the beginning and still always took a few hours in the morning for the wrists and arms to begin working.  In deperation one day, I decided to take 10 mg with breakfast and 10 with dinner as the pain always came on about 3:00 to 4:00 in the morning.  I was figuring that perhpas the 20 was just not making it totally through the 24 hour day.  That did the trick for me.  When I reduced to 15 two weeks ago, I still split with 10 in the morning and 5 in the evening.  I am now at 10 mg and taking 5 with breakfast and 5 with dinner.  So far so good.  I go to the rheumatologist tomorrow morning.  I am thinking that he will want me to further reduce and hope that it is now by 1 mg at a time.  I will continue to split the dose as this has been a miracle for me.  I first went the the rheumatologist May 2 of this year, so feel I am doing well.  I was quite debilitated with pain prior to that.  I love this site too.  I have really learned a lot here.  I learned of the split dose on here.  I don't read much about it, but is sure has worked for me.  Good luck!!

I know I'm learning a lot on this sight

I wish we had more information here in the States and support groups

The people here have been awesome

You're an inspiration. I just started to split my dose. I'm taking 15 mg @breakfast and 10mg @ dinner

I still have stiffness and feet are swollen

I'm going to dr on Tuesday

??

I hope the split dose works for you.  I never had any swelling, just the horrible pain in my upper arms, shoulders, and legs.  My wrists hurt so bad that I really could not stand to be here at the computer.  I guess I was lucky to not have swelling.  I do have restless leg syndrome and I think that is worse.  It used to bother me a couple of times a week.  It is now a nightly event and that makes it hard to get to sleep.  I agree that I think the UK has better info on PMR, but I am actually glad that I was able to get down to 10 mg quickly.  I am sure the rest will be very slow.  I will find out tomorrow how the doctor wants to do that and how often.  I only went to the 10 mg last Monday, so hope he will allow me to settle in at that dose for a few weeks before going down.  Have a good everning.  Donna

I asked my GP about carrying a card and she looked at me like I was an idiot (she does that a lot! lol).

Donna

Keep me posted what dr says. I'm feeling better today but you're definitely doing something right. Btw I'm also going to a naturopath after going to 3 rheumatologists that said I have fibromyalia

Which I probably also have. So it sounds like you have a good dr

Take care

Denise

Canada and Australia are so much alike in so many ways, this not being one of the better ones.  Treat yourself and get yourself a pretty universal medical id bracelet.  It has an Australian site.

Have a great time on your trip.  When I travelled with my stepmother she must have known her limits because one day, instead of walking down the streets of Gdansk, she parked herself at an outdoor cafe, where I was to meet her when I was ready, and she ended up having a great time chatting with other travellers, and I was free to do the walking tour and spend time shopping.  At the time I wondered why she didn't want to walk anywhere, I thought she was missing a lot, but now I understand.  And she seemed perfectly happy! 

Saw the rheumatologist today.  My blood work was not back, I havd no idea why as I had it done six days ago.  Anyway, based upong my movement and zero pain, he wants me to continue the 10 mg for three more weeks.  He then wants me to go down to five.  I quesitoned him on that and he said the methotrexate has obvioulsy kicked in and that is why I am feeling so well.  He wants me off of the prednisone as soon as possible.  He is much more worried about side effects from the prednisone than anything.  I will give it a try.   Once I go to 5 mg, he doesn't want me splitting the dose anymore.  He said the methotrexate will take over and claims I will be fine.  Well, I guess time will tell.  If the pain returns, I will sure give him a call and go back up on the dose.  I do not want pain.   Well, I guess no one does.  LOL

my rhuemy said the same thing to me when I started on MTX....that MTX would 'take over' and get me off pred.... six months in and 5mg just wasn't cutting it so he's agreed to my suggestion of going back up to 7.5mg. It's worked a treat. So MTX isn't the be all and end all answer to getting to zero.

And just my five cents worth - dropping 5mg in one hit at this stage is asking for trouble!

I know, I am concerned about this too.  If I return to pain, I will go back up.  I will stay at the 10 mg for three more weeks, so will cross that "proverbially" bridge when I get to it.  LOL  He also feels that once I am at 5 mg that I should not be splitting the dose.  We'll see.  I did get him to send in a prescription for the 5 mg tabs.  Currently I have been cutting my 10s in half.  I need to be at 7.4, then splitting the 5 mg tabs in half and taking a 5 with it would put me at 7.5 mg.  I am tempted to do the 7.5 mg until just before I see him in October.  Then I can go down to the 5 mg just before and let him know that I just went down.  :-)  I only know that I do NOT want pain again.  Thanks for your notes on the methotrexate.  I guess these doctors feel it is the miracle drug.  He is far more concerned about prednisone side effects than he is about methotrexate side effects.  Because of my own vision problems, I would tend to agree with him on that.  Donna

sounds like you are willing and able to make your own decisions on what to do and that's a damned good thing, given only you can know how you are feeling day to day.

what we have to remember is that the goal is not to 'cure' PMR, or get off pred - it's to reduce the amount of inflammation in the body, and that's all we should be worried about.

Prior to PMR and reading all of the good advice on this site, I never would have had the nerve to buck the system so to speak.  Everyone on here has helped me to realize that it is my body and my pain, not the doctor's.  If I can go to five and not have pain, well, I am willing to do tht, but I am not willing to be in pain all the time.  I will say that he was very surpried at my mobility, and I must admit me too.  I can move all over the place and was able to push back with a great deal of strenght.  The last time I saw him, I was in agony.  Yes, the inflammation is the big deal.  

I am not sure if my reply went through..  

I guess the methotrexate is helping you. I may ask my dr tomorrow about it. I know about blood work I just check online on my latest lab and my C-reactive protein is 1.4 down from 14.4. 😍

Yes, Denise, it does seem to be working for me.  My doctor seems far more concerned about side effects of long-term use of prednisone over the use of the methotrexate.  I must admit that I am too as I have vision problems and the thought of prednisone causing vision loss trumps all else.  That is not his reasoning, but it is mine.  I have had no side effects from the methotrexate, but do feel that I have had some problems witht he prednisone on my vision. I have already been to my eye doctor and am going again today.  I want to stay on top of it.  I am still on 10 mg of prednisone, he wants me at 5 when I see him in October, hope I can do it without pain.  Lots of people that I have seen on here just refused the methotrexate from the very beginning.  Good luck.