Creatine
Posted , 6 users are following.
I just read in a doctor's column of possible help with muscles by taking creatine. The doctor said it is safe. Does anyone know of its use and if so, do you recommend it? Thanks!
0 likes, 50 replies
Posted , 6 users are following.
I just read in a doctor's column of possible help with muscles by taking creatine. The doctor said it is safe. Does anyone know of its use and if so, do you recommend it? Thanks!
0 likes, 50 replies
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raybocop donna60512
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Can you attached the doctors colum. .don't load the creatine and make sure you drink plenty of water. .
donna60512 raybocop
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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.
Anhaga donna60512
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donna60512 Anhaga
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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.
ptolemy donna60512
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Personally I would prefer to spend my money on a decent diet. Have you got PMR? If so are you taking steroids? Creatinine tends to cause fluid retention and weight gain and so does prednisone, so I don't think I would want to take the two together.
donna60512 ptolemy
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ptolemy donna60512
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donna60512 ptolemy
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FlipDover_Aust donna60512
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You are doing remarkably well Donna!
If it ain't broke, don't fix it!
donna60512 FlipDover_Aust
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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.
FlipDover_Aust donna60512
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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.
donna60512 FlipDover_Aust
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FlipDover_Aust donna60512
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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!
donna60512 FlipDover_Aust
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Anhaga donna60512
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Responding to the little discussion yesterday about activity. I find that as my dose gets lower the fatigue has really kicked in. It's not that I can't do things, I'm still having my daily walk, for example, but I have to be really sure to get good rest during the day or I am completely wiped the next day. Pacing, balancing activity with rest, has been pretty important ever since I realized that pred wasn't a cure, but now it's essential. It's the only way the body will be able to heal.
It's also perhaps worth noting that ALL kinds of activity count. Even a fun morning having coffee and a walk with friends can be exhausting and needs to be balanced with quiet time, with a book perhaps, or the computer, before doing chores. It's a lot more difficult for people who have to work as well as look after a household. Have you read the Spoon Theory? Google it. It's great!
donna60512 Anhaga
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ptolemy donna60512
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donna60512 ptolemy
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Anhaga donna60512
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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.
donna60512 Anhaga
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Anhaga donna60512
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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!
????
donna60512 Anhaga
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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
Anhaga donna60512
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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.
donna60512 Anhaga
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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
Anhaga donna60512
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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.
donna60512 Anhaga
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Anhaga donna60512
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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.
donna60512 Anhaga
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ptolemy donna60512
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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.
donna60512 ptolemy
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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
ptolemy donna60512
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In fact I imagine most people do not have the adrenal test, only if they have adrenal symptom problems.
Anhaga ptolemy
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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.
ptolemy Anhaga
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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!
Anhaga ptolemy
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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.
denisep911 donna60512
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Wow pain free . Thats Wonderful
Im on a higher dose of 25mg and new to PMR
Trying to taper down. Love this site!!
donna60512 denisep911
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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!!
denisep911 donna60512
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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
??
donna60512 denisep911
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FlipDover_Aust Anhaga
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denisep911 donna60512
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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
Anhaga FlipDover_Aust
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Anhaga donna60512
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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!
donna60512 denisep911
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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
FlipDover_Aust donna60512
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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!
donna60512 FlipDover_Aust
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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
FlipDover_Aust donna60512
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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.
donna60512 FlipDover_Aust
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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.
donna60512
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denisep911 donna60512
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donna60512 denisep911
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