PMR Need help,Advice and Support | Arthritis Information

 

I am a mess, which I will detail shortly. Background. I am a 55 year old woman.  My husband passed away 2 years ago suddenly. This is only relevant I guess, because along with losing him, I lost my health insurance, his income, and his emotional support. 

Last August, (2007) after a strenuous day of yard work, I awoke the next morning with horrible muscle pain. Initially, it was in the back of my thighs, buttocks, and shoulders. I chalked it up to over activity.  Problem was…it never got better…. and progressively got worse…affecting more and more areas of my body. It felt like I had participated in a triathlon, with no prior training or conditioning. Pure misery. Shoulders, thighs, calves, Biceps were particularly bad, forearms, the front and back area muscles surrounding my rib cage. It hurt everywhere constantly…whether moving, sitting, or laying still. The stiffness made me feel 90 years old. A trip to the GP got me a 0.00 worth of some liquid medicine that I don’t even recall what it was, and a script for Vicodin. No diagnosis, No labs. Not that I could afford them anyway. My employer at the time did not offer insurance, and so my $$ resources were very limited. The vicodin helped. I can’t say the pain was gone, but at least I could function on a limited basis.  Two months later, I was desperate to find out what was going on. On recommendation, I visited a different GP. This netted me a course of Prednisone (no diagnosis) that I took for 4 weeks. Almost like magic, within a couple of days,  I was back to my old self. I did not need, nor take the Vicodin.  Around the time I finished the course of Pred., tapering down, the symptoms began re-occurring with a vengeance. .  I was devastated, as I had just accepted a position in my County with a  PPO insurance benefit package that I so direly needed.  By this time, I was desperate, as the position entailed logging about 6-8 miles a day of walking. I have always been healthy, fit, and a sun up to sun down kind of worker, but now I felt whipped.  Understanding my state of mind may help you understand what I did next.   My doctor refused to prescribe more prednisone without lab tests.  I was broke, hurting and desperate, and in my mind, all I needed to do, was get through the next 3 months till my insurance became effective. So I began doing my own research.  Almost immediately, I suspected PMR.  So what did I do?  I went to an online pharmacy, told them I had it…and believe it or not, they let me buy it.  No prescription. Halleluiah. I put myself on 20 mg, and took it up to the end of this past February, then began tapering off so I would be ready for labs when my insurance kicked it.  Since I was no longer taking Pred. the symptoms all returned again.  I was miserable due to the all encompassing pain, horrible fatigue, depression, not up to par at my new job, sleep deprived. And totally baffled.  Friends and family were sick and tired of my constant bemoaning. “Poor me... What’s wrong with me?”   In March, I was finally able to go to a Rheumatologist and I at last got labs drawn, (a whole slew of them,…RA, Lupus, Sed, EVERYTHING!) and Wal-Lah !! All within normal range. Since I am not a total ninny, I knew that no doubt the reason for the normal labs was because of my 3 months of self prescribed Pred. while waiting for my insurance. I confessed this to the Rheum Dr. and told her how effective the Pred.  had been, yet she prescribed Mobic, and said I really was too young for PMR. (Not from what I’ve read). She told me to come back in 6 weeks…that Mobic takes….3 weeks to work…and sent me on my way. I had no choice but to tough it out since March without Prednisone, so hopefully I could get proper lab results to get a diagnosis.   Result?   Dependence on Vicodin, as the Mobic did absolutely NOTHING for me. 4 weeks after being put on Mobic, I’d had enough.  I called the Dr. and demanded to have my C-R Protein and ESR redone.  This brings me to 2 weeks ago, when I finally showed an elevated ESR (31). The CRP was within normal range.  Dr. prescribed 10 mg. a day of Pred.  I was so relieved, although I must admit, I was apprehensive, as from research, and self-prescribed experience, and I knew this was a conservative dose.  But it did help….somewhat.  The all over…all encompassing pain  disappeared within 2 days, however after 2 weeks, there are areas that still hurt….particularly my arms/biceps,  shoulders, and I can feel it creeping back everywhere, gaining momentum.  So this past week, I called the Dr. and informed her of this, suggesting that perhaps the dosage was too conservative.  I was told that 10 mg. “should” be all I need.    SHOULD???  That was just not definitive enough for me. I started taking 15mg.  The pain is STILL getting progressively worse. Frankly, I am so scared I just want to cry. I need to work. I still have two daughters I am trying to get through college. I am continuing to take theVicodin (which my GP prescribes) to mask the pain. Whereas I was taking 1000 mg 2 x a day when not on Pred. (and it was a struggle to keep it curtailed to that dose) I am tapering that off and am just taking 500 2 x a day.   Earlier….I said I was a mess.  I think it is because of my guilt over the Vicodin, and my urge to up my Pred. dosage myself. I am in constant battle with myself over what to do.  Family and friends just don’t understand the physical pain.  They suggest I am numbing myself and my emotional pain.  I even took up smoking again after having quit for 5 years.  

My apologies for the long drawn out explanation of my mess.  Like I said…I need help, advice, and support…and am hoping I came to the right place…and did not bore anyone.  I have educated myself extensively on PMR. I know what to expect in the long haul. The tapering to find the right dosage, the CalciumD, the pred side effects. I can do this. I think what I am struggling with, is upping my own dose, (as I know I can always buy more on the internet) and then tapering by myself to find the dosage where I can function. I thought of going to another Rheum, as my current one just does not seem to be hearing/responding to me. However, I live in a rural area, and the only other one around is about 70 miles from me.  Am I crazy? I think, Yes. 10 months of pain will do it to you. I guess I am just hoping that some of you caring people out there are able to steer me right. Or re-assure me. Or something.  I have questions.  But first, I think I need to get a grip. You see my user name. I used to laugh all the time.   I’m so obviously depressed right now.

 

 

Dear She who laughs,

Thank you for sharing your story..this is indeed a wonderful place to be. I am so sorry you dont have a good doctor who understands this.. for me, i was prescribed 15mgs at the begining..and yes, it hurt still afterwards..not as much, of course..but i was not pain free..and i dont think most of us here are either.. through the months (have had it since february) i have felt all sorts of pains, and it has seemed to move to other parts.. i dont think that the vicodin is a real good thing to ad with this..you might want to consider looking into the antiinflamation diet..which is good for you..and will decrease the stress on your body. with the vicodin and the pain..you are putting alot of stress on yourself. the goal is to help the body uninflame..so we have to be a bit more gentle with ourselves these days. excersizing too hard, having too much stress and even eating poorly really does affect this disease. i am 53 and have polymyalgia..so no you are not too young..in fact many of us are your age. welcome...and i know you will get loads of support and good advise.. there is hope cathi Dear She,

Thanks Bob and Cathy. Looking back on my long post last night, (sorry again), I realize, that I just need to take a deep breath, and relax.  I have just felt so alone in this for so long. It was comforting to read from you both, that the pain just does not go away completely overnite. I guess this is what I was hoping to try to accomplish by trying to get on a higher dose of Pred. I am going to focus on not taking Vicoden, and also read up and try to implement the anti-inflamatory diet. And...I will try not to such a cry-baby.

I have some questions though for members, but have to get off to work. I will post them later.  And thanks to everyone who read my post.

Christa

Hi She...You have come to the right place for support.  I can only imagine what you are going through and my heart goes out to you.  I think the stress of all of this is causing you to suffer more than you need to.  PMR is hard enough to deal with without the medical community making it worse.  I know about that one as I also had a Dr. who could not believe I was sick and it made things a lot harder to deal with.  They should spend a day in our shoes.  I eventually had an Internist diagnose me and since then, with the help of my new GP, I have been in charge of my dosage.  I think the dosage of 10 mgs prescribed to you is quite low.  The average starting dose is 20 mgs, that is what I started on last July and I just now managed to reach 7.5 mgs with great difficulty.  Unfortunately now my Dr. thinks I have the starting of RA so will hopefully see a rheumy next week.

Hello She and sorry to hear what you have gone through. I too had a GP that didn't get it right and had me on so much Vicodin that I was maxing out on the levels of tylenal that your body can take. I went to a rheumy that did the blood work, saw that my sed and crp were high and still wanted me to go see a neurologist and have a neck work up done to see if the pain was coming from my neck. I couldn't believe that my whole body would hurt from my neck and that it would come on over the course of one night. I was at the point that I could hardly get out of bed, I thought that I was dieing and no one would get to the bottom of the problem.
Then I found a new doctor, one that would listen and he didn't have his hand on the door knob of the room before 3 minutes into the exsam. He felt I had PMR from the start and within 12 hours had me on Prednisone.

I am one of the few on this form that it took a higher than normal dose to stop the pain. I had to take 60 mg for a few days before I got total relief

I have tapered over the last 6 weeks to 25mg in the AM and 5mg around dinner. I am currently pain free and plan to taper by 5mg every 10 days and when I get to 15mg I will slow it down some more. I have found that for a few days when I start a new taper I take an Ibuprofen and it really helps.

Also my doc put me on Actonel to stop the bone loss from the prednisone. I take calicum supplement OS Cal which you can buy at the drug store. I am telling you all this because it sound like your doc has not had any experince with PMR and Prednisone.

Also, so you know, after you have been on prednisone for a while, your natural body production of Prednisone stops and it takes a long and slow adjustment to get it kick started again. That is why the lower levels around 5mg are so hard to taper very fast.

Good luck and don't feel all alone, this form has been the key to me learning the right combination to keep my PMR in check and hopefully gone some day.

Hang it there

Craig

See your not the only one that is long winded.

Hi Pat....and thanks for writing. You too, have been very encouraging. I like your line..."I have been in charge of my dosage"  DOes this mean that you ...yourself....are regulating how much you take...and/or taper?  I think alot of my obsessing over this disorder, is that I had relief when I was dosing myself, and am now reluctant to follow the doctors reccomendation of 10 mg.  I HATE being limited, (by pain) and want to blast this thing with all I've got.  But I now am realizing that I have to be accepting, that it is not going to be a quick fix.  I am going to continue reading through the thousands of posts.  Meanwhile, I have a question about posting on the forum.  I was just wondering the best way to do it, as I have never contributed to one before.  Let's say I have a specific question.  For instance...I have become paranoid over developing Giant Cell Artaritis.  Do I start a new post/message for each question. Is this the best way to reach the most people?  I don't want to become a pest.   There is so much to go through.  Looking at all the different forums and message boards...It's just great.  I just hope that somehow...in the future....I can be a positive contributor. 

Once again...thanks for the encouragement to all.

Dear She:  Your story touched my heart.  I was dx with PMR July 2007 then after a week of taking 50mg Pred and the pain I had been suffering for 8 months disappeared we knew it was PMR.  I then started on 25mg/daily.  I tried tapering a couple of months ago and got down to 17 mg.  At that dosage I started getting terrible pains in my kness and thighs starting about 3-4 in the morning.  They were so painful I went back up to 20mg and now even go up to 25mg.  So far I have just seen my GP for treatment, but I have an appointment with a Rhemy on July 8th.  We have a wonderful health care plan in Canada but the downside it that seeing a specialist takes a long time.  I have gained 30 lbs since starting the Pred and I am only 5'2", one of the many side affects of Pred.  I also have watery eyes.  For these reasons I am hoping that the Rhemy will give me something else and get me off Pre or at least a very low dose.  However, that being said, it is a miracle drug when you are in so much pain.  I really think you need to be on at least 20mg/daily and have a better quality of life.  I also take Percocet for the pain.  I am 69 years old, but before this was very young and active and I want to be able to continue with some of my old lifestyle.  I think you should really consider the quality of life and take the dosage that is going to give you some of your old activities.  We would all like to be off Pred, but it is the one drug that can do the job.  I will be thinking about you and remember you in my prayers.  I am glad you foung this forum, these people are the best for advise and support and understanding.

Thank you Craig and Sheila...You all are making me cry !! Hi Christa:

So sorry to hear about your predicament, but, as you can tell from the great support in this forum, you are no longer alone!

My symptoms started in March, 2008, and got progressively worse through early April. I did a Google search on bi-lateral shoulder pain and the first entry was a link to PMR. After exhaustive internet research on PMR, I was convinced that this is what I had. I went to my GP and gave him my diagnosis, but of course he did a battery of tests before referring me to a rheumatologist. Like many doctors who treat PMR, the rheumatologist was aware of the basic statistics regarding PMR, which led her to believe because of my age (59) and gender (male) it might be something else. She did put me on Prednisone at 20 mg and instructed me to take it in one dose in the AM. That worked for a short time, but within a few days I found that it would take several hours to fully kick in, and would wear off overnight to the point that I would be quite stiff and in a fair amount of pain by 4-5 AM. At my next appointment she felt that because 20 mg of Prednisone was not completely alleviating my symptoms that I probably did not have PMR and felt I might have Polymyositis, for which she ordered some new blood tests, which turned about to be negative for Polymyositis, surprise, surprise. Also, the primary symptom of Polymyositis is not stiffness/pain, but muscle weakness, which I do not have, although the pain/stiffness does affect my ability to use my arms. I asked her about splitting the dose of Prednisone to deal with the AM problems, but she advised against it, saying that it would increase the likelihood of side effects. On my own, I tried taking 15 mg AM, 5 mg PM, but that did not help too much, so about 10 days ago I switched to 10 mg AM, 10 mg PM, and the change has been dramatic. Given that I will probably be on Prednisone for quite some time, I will take my chances with this regimen possibly increasing my chances of side effects as a trade-off to the relief of my symptoms. I hope to start tapering off within the next few weeks.

The reality is that most doctors, even specialists in rheumatology who you would think would know better, go by the overall statistics regarding PMR and Prednisone, without consideration for variability among individuals. The belief that PMR is a disease of primarily women over 65-70 and that a single shot of Prednisone in the AM should alleviate 100% of the symptoms clouds their judgment. For example, while Prednisone gets absorbed very quickly from the stomach, it is not the active chemical -- the liver metabolizes it to Prednisolone, which is the real actor. Clearly, not everyone will convert Prednisone to Prednisolone at the same rate, nor will its half-life in the body be the same for everyone. Also, the dosage is given as an absolute amount regardless of body weight. I wonder if 20 mg given to a 195 pound man would have the same effect as 20 mg given to a 125 pound women.

Given that Prednisone is not a cure for PMR, but simply provides symptomatic relief, my feeling is that the dosage and timing need to be adjusted for each patient so that they receive maximum relief. The amazing variety of case histories you see in this forum bear witness to that fact. As others have said, you are the best judge of how you feel and react to treatment, and the one size fits all treatment protocol clearly does not address each individual.

Best of luck to you!!

She,  Elliot makes several very good points, the gist of which is that you alone are the only one who can tell what works and what doesn't.  Rheumys are nice people but in general are useful primarily for blood testing and pred prescriptions.  Self treatment is accomplished by using the anecdotal experiences of folks on this forum as food for thought in determining what course to follow.  A couple of guidelines I've derived from all these good folks is to work constantly on reducing the pred, but not to go overboard.  The second one is that a split dose will often help get the discomfort to a manageable level, and when it does, start reducing the evening dose so that your own adrenals can feel the need to start functioning during the night.

    All of this requires your personal decisions, because only you know how you feel.  I haven't heard yet of a rheumy that has experienced PMR.  Remember that this process will take time, so don't set any arbitrary deadlines to get off pred.  Some of us have been on it several years and some have been able to leave the good ship Prednisone around a year, more or less.  We're all in this boat together, so use us for a sounding board and pass on what you learn for our use.  Hang in there, and keep rowing.

I cannot imagine having this horrible disease and having responsibilities like a job and children also. The best advice I can give is to do things now for your body so when you come off the meds your body will have a fighting chance. Look at all the research and supplement and diet advice here and choose what is right for you and your present health and other meds you may be taking. But start now to give your body what it needs to heal itself. Remember that the meds do not cure the disease - it just helps you live with it. Thanks for writing Kirby.  You provided alot of insight regarding dosage amount, and this is my main issue right now.   I have begun taking 20 mg. in the am, and I feel comfortable doing it.  This morning ws my second day of 20mg,  and as of the moment, I do see a slight improvement already.  As I said earlier, it seemed that on the 10, it was beginning to overtake me....gaining momentum. So I am hoping this increased dosage stops it in its tracks. I just want to be stabalized, and am not going for a total disappearance of symptoms.  I do notice a definite reappearance of the pain in the morning. Thats what usually wakes me up...not the alarm, so perhaps I will try the split dosage down the road. Thanks for the encouragement Bob.  Good analogy..the ship. Whereas a week ago, I was in the middle of the sea....my sails were ripped and torn, and I could not even catch a glimpse of the shoreline, I now feel as if I  am now calmly bobbing my way to the shoreline. In the right direction, and there are people there waving me in.    Smartie.  Thanks for the show of empathy.  Oh gosh, that feels good. Everyone has been great about it. Of course, since we are all in the same boat, it is much easier for you all to understand.  To the few people in my daily life, that I have confessed my medical problems to, I find a total lack of understanding or comprehension as to what I am faced with. A couple of gals at work made a reference to fibromyalgia, and that they have it too. I have just stopped talking about it, so I've been alone in my misery for quite awhile.  For my family, I just put up a brave front.  I have learned to prioritize on whats really important. I don't care about housework...have lowered my standards. I'd much rather save my energy for my grandson.  I don't care anymore if the car needs washed. I need rest. Laundry?  I'll wear it twice.  For a while, I felt horribly guilty letting things go, but it is getting easier.  Illiness makes you see what is really important.  I am also trying to keep in mind that it could be worse. This appears that it will be managable.  Unlike some other things...that could threaten my life, and not just my lifestyle. Welcome She,