Hi Everyone!
Since this is my first post here, I guess that makes me an official 'newbie'! (I kinda like that word!
I'm sure glad I found this site.........have been reading all the posts for the last few days and decided to get on board!
What prompted me to post was the topic of 'commonalites' back on August 23rd, '05, by bobk544. The subjects of smoking and drinking milk came up. I'm not so sure in my opinion that those two things would 'cause' PMR, but it could possibly trigger flare-ups in some people, especially smoking since it can supress your immune system somewhat and make you more vulnerable to feeling crummy.
Just a small bit about me:
I am a 48 year old white female of German descent, who has been officially diagnosed with PMR in the fall of '04 by a neuromuscular MD. I finally found someone who listened to the smallest details, and picked up on remarks I made, which other docs disregarded. How wonderful to finally find someone who cared and enjoys 'investigating' signs and symptoms we all know are real! My doctor drew about 28 vials of blood, (I thought he was Dracula in the flesh for a moment
I probably noted that I had more than the usual day to day aches and pains in the Sept of '03, about a week after I received a flu shot. I didn't feel 'virusy', but just intense pain in arms, shoulders and hips. The best way I could describe this to anyone, was it felt like I just got hit by a truck, bruised all over, or that someone just beat me up, or that I ran a marathon that I wasn't prepared for......the pain in my arms was a hot burning pain, do any of you know what it felt like when as a kid you gave each other 'snake bites'
Well, a friend of mine won a trip to Hawaii, in Jan, '04. We enjoyed oursleves in 80 degree weather, but arrived back in Minnesota to -20 below!!!!! Brrrrrrrrr!!! A sudden 100 degree adjustment for the body to make! Mine went through a very painful 3 weeks, but then one day I woke up feeling on top of the world! But since then, these episodes have grown more frequent, until lately there have been some unbearable days.
When I was diagnosed, like most of you, I was put on a Prednisone trial with a taper down goal. I, of course, gained 30 lbs, the moon face, etc. But heck, I felt great!!!!! A few months ago I was at 2.5 mgs at which time my doc said I could go off if I desired. Well, it hasn't been fun.
A few reasons I'm off, is that my dexa bone scan came back with poor remarks, and my eye pressures were on the rise. (I also have a family hx of glaucoma, and didn't want to run the risk of triggering a full blown diagnosis there).
I don't think you can get PMR back if you go off Prednisone, you just realize how much better your quality of life was when you were taking it.
Without getting into more of my history at this time, because I can see I'm getting long-winded,
I also wanted to know anyones experience with the flu shot. I know you really can't get the flu like some may think actually from the shot, but I think there could be some relation at times with something like that. Of course, each year it's a different strain, but nonetheless. And when you think about it, if PMR is an auto immune disease, why would we want to introduce this small amount of a virus into our systems in the first place??????
Okay, now what about chocolate? Or any rich downright sugary sweet? Maybe it's my imagination, but seems like I have little flare ups right about the time the wonderful stuff is hitting my hips? The last question: Weather and altitude changes? On my flight back from Hawaii, I was so miserable, and had a hard time staying seated. My legs hurt so bad! We had a nonstop 8 hour flight from Minnesota to Oahu. Well, that's it for now.........I've enjoyed reading your posts, and I hope we can all learn from each other, yet maintain a acceptable sense of humor/lightheartedness while still caring deeply
Thanks to the brave souls who have read this far! Hope you can shed some light on my questions....... Smiles,
Hopalong Hi, I enjoyed your posting very much. We already have something in common, in that we are both in Minnesota. I was diagnosed at the age of 49 with PMR. I started at 60mg, just recently got down to 1mg and felt so miserable that the doctor put me back up to 20mg. It has not completely removed all the pain like when I was at 60mg but I sure feel alot better than I did. Of course, now with this last visit to the doctor he also found that my blood pressure had gone up considerably so I am on blood pressure meds now too. The weight gain and feeling like I don't have control over what is happening bring me down at times but there isn't anything that I can really do about it. I also got my flu shot but had absolutely no side affects from it at all. Maybe it makes a difference what dosage of prednisone a person is on when you get a flu shot. I go to a weather site that I have programmed for my area of MN that tells the barometric pressure and have been checking with that when pain seems greater. Honestly, I am not sure that the pressure has made a difference. I think PMR has a mind of its own. In 2 days, I am suppose to lower my dosage from 20mg to 15mg and as badly as I want off the stuff I am really nervous to do this. If 20mg hasn't removed all the pain, burning and stiffness surely 15mg is not going to feel good. Will try though. In all fairness the doctor doesn't know that 20mg is not completely doing the trick. I have never stopped to think if different foods set off more pain but I will definitely start trying to make a mental note of this. I really wish I knew more about PMR but then I suppose the doctors do too. What is it in our bodies that sets this off and what really are the long term affects down the road from this. I now worry about the weight gain and blood pressure problem as serious health issues so it is like trading one problem for another. As soon as the weather is nicer I am out walking again because I think that will help. Thanks for your wonderful post. It was fun to read. When I first found this site I could not find anyone that had posted for Polymyalgia so I felt like alone when I did that first posting. I am so glad that there are others to talk to.
You said that you recently tapered off prednisone. I have researched and found information that when you stop prednisone you can actually have a rebound effect and the symptoms can return with a vengence. I have experienced weight gain and increased BP with prednisone. But- I have eliminated sugar and flour from my diet and am steadily and very gradually losing weight and feeling better. My B.P. is coming down with the weight loss. I am a firm believer that what we put in our mouth is a powerful force in our body- food is a drug- it has the power to heal and the power to drag us down depending on our choices. It's taken me a long time to accept that I HAD to change my diet and eat what nourishes and not what feeds my addictions and WANTS. I just had a bone density test done and will make a decision about Fosamax based on the results. As long as I am on prednisone 15 mg. I will have to do what is needed to preserve my bone integrity. Nice to have you on board. Rosey Thank you! I'm glad to be here, and just want to learn from others experiences. JMBR, do you mind telling me where you live in Minnesota and/or which Dr. you see? If not, I'll understand. I think if Dr.'s names are mentioned, you have to do it by a private message, if I'm right. I got into trouble on another message board quite a long time ago, but didn't know or remember the rules. I'm very happy with mine, and I live in St. Paul. Yes, I'm not sure if the weather affects it or not, but I'm going to pay closer attention and start logging all these things. It's weird that we are about the same age. I'll be 49 in June. Did you have symptoms much before your 49th year? I do think, as Rosey mentioned that food can play a part in how we feel. So I need to come up with a plan/strategy to work on that. That's all for now!
Hopalong Hopalong I was very interested reading your post and some of your PMR history. I understand exactly what you mean by the pain feeling like you had been hit by a truck. In answer to your question about Fosamax.- I was diagnosed last July and because I have a family history of osteoperosis my doctor advised me to take Fosamax once a week. Because I dont like taking any more medication than I absolutely have to and also because it is reasonably an expensive drug in this country (Australia), I consulted with my nephew who is a doctor and he emailed me with following advice.... "I'd advise getting the Fosamax. There are 2 types of cells that maintain bone.- Those that lay new bone down and those that reabsorb it. In healthy individuals these 2 systems are in constant use and in balance. Its the body's way of ensuring that bone remains strong. In osteoporosis the cells that reabsorb tend to be a little more active and so you get a net loss of bone and calcium. Fosamax inhibits these cells. Since you do have an inherited predisposition to osteoporosis and will be taking prednisone everything you can do to prevent it will help." Because of that advice I have been taking Fosamax for as long as I've been on prednisone. At the moment my prednisone dosage is 14mgs. My doctor was reducing my dosage by 2 1/2 mgs at a time and I got down to 10 mgs, but started feeling sore all over again. My rheumatologist put me back up to 15mgs and now I reduce by 1mg each month. I dont feel perfect but I can cope. I find the physical side of PMR is manageable to a certain extent, but the depression can be a bit harder to manage. I used to be very active and extremely healthy and then woke up one morning and everything changed. Its like ageing 20 years overnight. I try to console myself with the fact that I could have been diagnosed with something much worse, but it still takes its toll on my mental and physical state. Thank god for this discussion board, its like group therapy. I also have another thing in common with you and JMBR. My sister lives in St Paul Minnesota. She's the mother of the doctor that advised me about Fosamax. I hope you are having one of your better days Take care Gail Hi Gail,
Yes, I do think that I should be on something, and I believe my gynecologist will try Actonel and see how I fare. Then there is that new one; Boniva. However, she feels less sure about that drug even though it's just once monthly, as there are less proven cases of rebuilding bone mass than the others because it's so new. I guess if it comes down to it, I may just have to go on the Prednisone again. Maybe 2.5 mg was all I needed to keep things at bay, even though I didn't always feel great, I felt a heck of a lot better than I have lately! I just don't want to give in!!!!!
So does that Dr. work here in the 'Cities' also? Just curious
Gail, I think if I do decide to go back on the Prednisone, I will wean down s l o w e r, like you are doing at 1mg a month. My Dr. had me doing 2.5 mg at a time, and maybe that was too quick of a taper for me. I just dont' think that I should be at work when I start out on 20mg like I was last time.........I had sooooooo much energy (like I'm sure others have), I was helping the cleaning people vacuum the carpet in the lobby of the clinic
Do you have osteoperosis, or osteopenia? (I have the latter, 'pre-persosis'.) I just wish I knew for sure if Fosamax had aggravated my symptoms or was it a coincidence.............. I read many other's poor experiences with it on www.askapatient.com That's when I started to put 2 and 2 2-gether.......what do you think?
Ta ta for now.........do they have 'Outback Steakhouse's where you live........my favorite drink is a 'Wallabyedarned'!
Smiles, Hopalong Hopalong In answere to your 1st question: No, my nephew doctor does not live in St Paul near his mum. He still lives in Sydney Australia (his place of birth). I live in a fairly small coastal town in NSW and at the moment we dont even have a McDonalds let alone Outback Steakhouse. We do have KFC though. There may be some Outback Steakhouses in Sydney, but I dont go there on a regular basis to know for sure. I do know my sister (from St Paul) goes to them fairly regularly. I have been on Fosamax since last October. I started taking Prednisone regularly since last September. Because I've been taking both for about the same amount of time I find it hard to ascertain whether Fosamax is having a detramental effect on my health. When I was first diagnosed with PMR, I tried to brave it out by not taking Prednisone because of all the nasty side effects. However, when I saw the rheumatologist he explained to me that by not taking Prednisone I was more vulnerable to come down with giantcell arteritis. He said that without warning, I could wake up one morning blind. So I was given the choice of getting osteoporosis, diabeties, cataracts and all the other nasties that can come with Prednisone or possibly become blind by not taking it. I dont have osteoporosis and I'm taking every precaution I can to prevent getting it, hence the reason for taking Fosamax, vitamin d and calcium tablets. One of the side effects of Prednisone is already raising its ugly head. My skin is starting to thin and sometimes I look like I've had a frolic through blackberry bushes and I'm also starting to bruise easily. I've started rubbing vitamen e cream into my skin about 3 times a day so as to hurry the healing prossess a bit. One of the more disappointing aspects for me with coming down with PMR is that before getting it, I used to give blood every 10 weeks. Now, because I'm on Prednisone I cant give it. I'm AB negative, which is pretty rare and the blood bank is always screaming out for donors. I find it frustrating. In Australia we donate our blood, then if anyone needs a transfusion they are not charged for it in return. At the moment we are experiencing reasonably hot weather, and this morning my legs were feeling stiffer than normal. Maybe temperature plays some part in how the body feels, but I dont think it controls everything. Anyway, keep warm take care Gail I too find the postings here helpful in sorting out the whole PMR syndrome. Do many of you have exhaustion as a symptom? That is worse for me than the pain. But I have found that exercising has helped with that as long as I do not exercise when I'm exhausted
Do any of you experience headaches as well?I have to admit that losing weight has helped with BP and energy but isn't easy when taking prednisone to lose the pounds.
I also experience headaches and have a lack of energy. It is frustrating because it does make you feel older than what you are. I feel older than my mother. I always thought at 50 I would still be able to be active and do all the things that I had done before. Hopefully, soon it will subside and I can get off the prednisone and be pain free. What is the longest and shortest period of time you all have had with the PMR flareups and the longest/shortest time on Prednisone. I am just wondering how I fit in with everyone elses experiences.
I have only been diagnosed since 12/13/05. Been on prednisone since at 20 now down to 15. Had two flare ups since diagnosis. Seems related to trying to decrease prednisone and when over exert and become exhausted. I have read that this disease is self-limiting and usually lasts 1-2 years and then symptoms can resolve completely. My rheume also says that to be the case. I can't seem to get below 15 mg of prednisone without symptoms flaring. I see my rheume today and she wants to talk about methotrexate. Hmmmmmm. I do believe that with PMR we are dealing with our immune systems weakened and believe that we need to find ways to strtengthen it. Dr. Andrew Weil's site offers advice on how to strengthen the immune system- naturally.
Rosey Hi Everyone,
As far as lack of energy goes, there does not seem to be a pattern for me. Of course, when I started on Prednisone at 50mg, I was the Engergizer Bunny!
I started to note more pain when I got down to 7mg.........but it came and went..........some days better than others. Finally, when I got down to 2.5mg, it was more bothersome, but I didn't want to go back on! Today, I feel great......and have been off Pred for about 2 months........go figure.
I started Prednisone Aug 20th, '04, and stopped about the 1st week of Jan. '06. I am going to try to stay off as long as I can. Certainly strengthening our immune systems naturally makes lotsa sense! Hopalong
Copyright ArthritisInsight.com