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Polymyalgia Rheumatica

Hi,

I am 49 years old and have just been diagnosed with Polymyalgia Rheumatica.  I was wondering if anyone else has dealt with this and if once treated with Prednisone if they had Polymyalgia come back.  Was the Prednisone successful in treating this and for how long.  I had never even heard of Polymyalgia Rheumatica until I was diagnosed with it.  Are there any helpful hints one can offer to help keep this under control?

Thanks so much.

JMBR-I just found your message and decided to join the message board. I was diagnosed with PMR in July 2004. I am 52, female. I too had never heard of it before that. I was prescribed 20mg of prednisone and (as of this writing) am down to 2 mg a day. I am now also taking methotrexate 10mg one day a week for about 1 1/2 months. I still have symptoms but not nearly as bad as when I was first diagnosed. I would wake up and not even be able to get out of bed without great difficulty. The prednisone (20 MG) made me feel 'normal' again. I am achy and stiff on 2 mg with the worst being in the morning. Walking and keeping busy seems to ease the symptoms. Doing nothing makes thems worse. I've been reading the literature and hearing the number '2 years' and hoping that happens for me. It took several tests before anyone could decide what was wrong.

I hope you write again because it meant a lot to hear from someone else with PMR.

Hi PATMARCE,

I sent you a personal message, hope it worked.  I have not been a member of this Arthritis forum long myself.  I hope we can keep in contact.  I started with 60mg of Prednisone and have worked down from there.  I am hoping that when I go to the doctor on Thursday that he will lower my dosage of 20mg.  Every once in awhile my neck or arm will hurt and I get nervous because I don't know with the decrease in the dosage if I am feeling the PMR or if I just happen to have a normal ache or pain.  Did you go in on a regular basis for blood workups?  Did those tests help show the level of inflammation you were still experiencing?  Have you been having side effects from the prednisone and the dosage amount that you are on?

Hope to hear from you again.

I was just wondering if either one of you who is suffering from RMR had your ankles swell up, and what your doctor prescribed for pain, My e-mail address is csmith3866@aol.com.

                            Thanks, Charles

Charles - I have never had RMR or swollen ankles. Is that what your diagnosis was?

 

Pat

Pat, I was diagnoised with PMR in Feb 2004 and I had never heard of it before. In Aug. 2003 my husband and I painted our front porch. The next morning when I woke up I could not get myself out of bed. I thought I had just worked too hard and what I had was just sore muscles. I tried all kinds of otc pain medicines and rubs nothing helped. After several weeks of pain, when I got up in the morning, that didn't let up until late afternoon, I finally went to my PCP. He tested me for RA and was very happy when the test showed I did not have it. However, he gave me steroid injections in my hips and shoulders that helped for a few weeks. Finally he ordered an MRI and sent me to a Neurosurgeon. The Neuro. recommended PT. Finally in Feb. 2004 I went to my PCP for my annual physical and I explained to him that I felt like I was wrapped in a sheet like a mummie when I wake up in the morning and it took all my strength to move and the pain was so bad I could hardly stand it. My PCP sent me to a Rheumatologist. After he examined me and did extensive blood work he told me he was 99% sure he knew what I had. He put me on 10 mg of Prednisone. The next morning I could put my shoes on. It was like a miracle. The doctor then started tapering the dosage done to 6 mg. I had some bad days but most days were good. Then in March 2005 my left hip began to really hurt. The doctor ordered an MRI and put me on pain medicine. On April 1, 2005 I fell and tore my ACL and MCL in my right knee. The doctor raised the Prednisone to 20 mg. I had to walk with a cane. In July the doctor injected both of my hips with steroids. It helped my right hip but did nothing for the left hip. Last week I had an MRI done on the left hip and it showed I had a stress fracture in the upper part of my left femur bone. The Orthopedic Surgeon has put my on a walker and will wait three weeks to see if the stress fracture begins to heal. If it does not he will do surgery. I have taken Fosmax for my bones since I have been on the Prednisone, however, the Orthopedic Surgeon feels my bones have been weakened. My advice, from experience, would be careful and don't fall.

Ineca

My husband was recently referred to a rheumatologist by his primary doc.   Lab tests came back with a positive ANA.. Lupus was suspected.   Well, after more testing, Lupus was ruled out.  But...... the specialist "thinks" PMR is my husband's problem.....  He may have some RA, but not much....  He was started on Pred. 20 mg. per day and has been taking it for about 3 weeks now... pretty good results with muscle pain, but still has some joint pain.  Plaquinil has been recommended by the R. doc..... but, after looking into the side effects, I think my husband is reluctant to use the medication (he has heart disease with 8 stents placed 2 years ago). 

The problem I'm having is this....  'Why is it so difficult for the doc. to come up with a diagnosis?'...   We were told he could not give a definate diagnosis for 3 or 4 months............... ?????  What's up with that?  I feel sort of like we're getting the run-around here.  Any comments????

Also... since starting the pred., he has developed 'muscle twitches' in his right cheek, jaw, and lip area...

thanks.......... janeve

 

Glad (in a sad sort of way) to hear more people talking about PMR. It took me a good two months to get the diagnosis of PMR since exhibiting the symptoms and I believe that this is a short time in relation to some of the stories I read here. I was very perisistent and this may have expedited the repsonse from doctors. I had never heard of PMR previous to this and I sometimes have to explain what it is to doctors who are seeing me for unrelated reasons but taking my medical history. I think the delay in diagnosing for people in my age range -52, is that this usually presents in 70+ folks. The 'sed rate' appears to be the determining factor in going down the path to a PMR diagnosis. Other than that, I can only suggest reading what little there is on-line and educating yourself to the illness, it's prognosis and treatment methods. Prednisone is the predominant treatment with 20mg being the usual starting dose and ultimate tapering to reach the lowest amount possible to treat the pain and minimizing the potential side-effects from Prednisone - primarily bone deteriorization. I'm not a doctor and a person's full medical history determines the doctor's response. My experience has been to write down all my questions and not leave the doctor's office without answers.

Hi,

It is comfort to know that there are others out there with PMR although I do not mean that I wish this on anyone.  I am now down to 10mg of prednisone after beginning with 60mg.  The prednisone has definitely helped the PMR.  The last month has been difficult though as a simple cold with cough and been a nightmare to overcome and have had to go on antibiotics to help fight it as the Prednisone messes with your immune system so much.  I go in again on the 17th of the message and am hoping to have the dosage lowered some more.  Up until I got sick with this cold I was walking and exercising everyday to help combat the affects of the prednisone.  It is definitely a battle.  I hope each of us can overcome this and that soon there will be more answers about the PMR.  I was wondering if any of you know what your sed rate started at when diagnosed.  My sed rate was at 65 and is now holding at 10.  Take care everyone and I hope we can help each other and give each other strength.

I asked my rheumatologist (sp?) what my sed rate was when diagnosed and was told it was 90. Presently I am down to 1 mg of Prednisone and my sed rate (last time) was down to 40. I too had (still have) trouble with a cold. I went through a round of antibiotics prescribed by my primary physician, and had to discontinue taking methotrexate - the drug they are trying to switch me to from prednisone. I have a persistent cough (1 1/2 months and counting) and the rhematologist has now got me on another antibiotic - she doesn't want me to re-start with methotrexate until she's sure all bacteria is gone. Time will tell.

I joined this discussion board today. Already, I think you have eased my concern as for why I have a persistant cough.  I was diagnosed  almost immediately with PMR last July. At first, I didnt want to take prednisone because of all the awful side effects. I thought I could brave it out by taking 'Mobilis'  (an arthritis medication)to take the edge of the pain, but my rheumatoligist warned me that without the prednisone the possibility of contracting giant cell arteritis and losing my sight in one or both eyes without warning was a very real one.  I have all the classic symptoms of PMR but after taking prednisone for a couple of weeks I developed this persistent cough.  My concern was playing havoc with my imagination.  I started reading about different types of arthritis and came across Polymyositis with some of the symptoms sounding similar to mine, but one that stood out was - coughing.

When I visit my doctor next on Nov 9 I'll discuss it further with him but I'm pretty sure you have solved the mystery. I forgot that the prednisone effected my immune system.

Another problem I've had since I contracted PMR is that the soles of my feet range from very to extremely sore. I walk for at least an hour every day to keep my bones strong but I feel every step I take.  It is not as if walking is new to me because I have been following the same routine everyday for about the past 10years.  Maybe you or somebody else on the discussion may have the same problem.  I tend to think that the problem is related to the PMR because the pain is symmetrical  with both feet.  Believe me, it takes the fun out of walking. 

I am 55 and had always boasted about how healthy I was.  PMR certainly has a way of giving one a reality check.  Anyway, thankyou for solving one of my problems

Gail 

Hi gail.

I do nto have this diagnosis, as all my blood work is totally normal but i have the symptoms! especially the soles of feet. I also have a lot of pain where the thighs attach to the hips, esp in my innre thighs. do you have this as well? I was on prednisone for a month and felt so much better and now i am on azulfidine which takes months to start working. the rpes was great but i gained 7 lbs in one month! I am only 34 which seems young compared to everyone else but i am wondering if this is what is happening with me, esp after hearing your comment about the soles of feet. do your feet hurt in the morning too? Do your ankles ever hurt and feel stiff?

Also, do you have any popping and snapping?

feel well,

alison

HI

Just wanted to address some of the things you all have brought up. I have gained 50 pounds in the two years  I have been on Prednisone. I have been on 20 mg and now am on 10 mg. My face is a lot fuller. I too stay hungery all the time. However, the real problem with Prednisone is that it keeps the body from using carbohydrates correctly and you will put weight on around the middle. To make matters worse I have had to be on a cane and a walker since last April when injured my knee and then develped a stress fracture in my left femur bone. I will be so happy when I can walk again unaided. I too am having the sweating spells. I sweat so much that I steam up my glasses. I have to wipe water off my face. And although I sweat all over, I seem to sweat more on my face and chest. One problem I have been having that I have not seen addressed is my eyes are so dry I have to put eye drops in them several times a day. Have any of you had this problem?

Ineca

Hi just thought I'd jump in too. I'm 58 and in June woke up one morning with pain and stiffness. Like others just thought it was muscle soreness fom overwork or coming down with the flu. This got progressively worse - I thought it was Lyme disease but after being sent to a rheumatologist a month later by my PCP got a diagnosis of PMR once they looked at the sed rate but they're still not 100% sure and have decided for the time being it's atypical PMR but might also be an atypical form of some other type of arthritis. Prednisone at 20 mg didn't do the job so I ended up at 30 mg/day. Actually felt great but then of course started reading about all the side effects and couldn't wait to start going down in dosage. Went down at 2.5 mg per week. In the lower 20s hints of symptom recurrance began, by the mid teens got worse, by 7.5 almost started back up again but figured if I could just get off the big P the pain might be worth it. at 2.5 I gave up and had to go back up to 7.5 for a week - that didn't cut it either and was advised to go back up to 10 for a week - same thing. Just bumped myself up to 12 mg/day starting today - we shall see. Any one else encounter this seesaw when trying to get off Prednisone?

Domino38689.5782407407

Alison,Ineca & Domino

I was just reading your messages. I had been complaining in an earlier message about how I have sore feet. I saw a podiatrist last Friday and he said my problem is definitely connected to PMR. My tendons have tightened from my calf muscles to the soles of my feet and the PMR seems to have exacerbated the problem. He has given me exercises to do and sold me a pair of inserts for $150. Lucky I didnt go for the custom made, they were twice the price.

Ineca, I know exactly what you mean by prednisone, weight gain and appetite. I used to go to Weight Watchers, I became a life member and I know what I should and shouldnt eat. But thats gone out the window. Eating has become a hobby more so than a necessity. I have been living to eat rather than eating to live. And you are right about gaining around the tummy area.  Each night I promise myself that tomorrow I will really start watching what I eat. Tomorrow never comes.  I  hate to think how much I would weigh if I didnt walk for about an hour each day, sore feet or not.

Domino, it must be awful getting down so low on your prednisone only to have to increase your dosage again.  I started off on 20mgs daily. I'm currently on 12 1/2 mgs.  I had my blood tests last Friday and see my doctor on Wednesday.  If my SRE & CRP are low enough he will drop me down to 10mgs.  I've been feeling sore around the shoulders, hips and legs lately, so I wont be surprised if I stay on the same dosage or increase it.

I really want to get off this medication as soon as possible because I hate to think what its doing to my bones not to mention the rest of my body.

What I find frustrating is that PMR is not a commonly known condition, so when you're not feeling very well you have to explain what PMR is all about.  Thats why I find group therapy, such as discussion boards, are so helpful. You can have a whinge and the people on the discussion boards are so caring.

My family are very understanding., but I dont like to complain to them too much

Take care of yourselves

Gail

Gail38689.9105902778

To all

I was down to 1 mg of prednisone but have now gone back up to 2 mg and am also taking about 1200mg of ibuprofen per day. I have a constant underlying soreness but am trying to minimize the prednisone. I was prescribed methotrexate about 3-4 months ago in hopes of getting off the prednisone but I can't honestly say the methotrexate has done any good whatsoever!

I did some room painting just before Thanksgiving and the calves of my legs killed me and kept cramping so bad I had to max out on ibuprofen AND take more prednisone. I keep being told to do more exercise but when you keep getting the cramping like I had it feels like I'm facing a 'catch 22'. Very depressing. I too HAD been very active and could do so much, not any more. My feet also have that cramping feeling after just sitting a short time. As someone mentioned, it's as if my muscles have shrunk in length! Oy....

I have another appointment next week and plan to ask for another bone scan since I've been on the prednisone for over a year and a half. I need to know if there is any loss of bone density since the baseline, for my own peace of mind. 

I also have a difficult time explaining to people 'what's wrong' with me. Thank god for you guys-people who understand.

Pat  

 

 

Pat,

I have not been taking any other medications with the Prednisone but after reading about you and the Ibuprofen asked my Doc and she said sure go ahead if you want to give it a shot.

Do you feel it has helped with lowering the Prednisone significantly - if you had to guess where would you be with the Prednisone without the Ibuprofen where do you think you would be at - 3 or 4 mg or more like 10 or 15 or what?

Domino

Hi,

It is nice to hear from everyone and know that there are others out there to talk to.  I am currently at 5mg of Prednisone and have noticed I have been taking alot more advil then I used to.  I also am still suffering with a cough that I have had for 4 months.  The doctors have had me on antibiotics, inhalers, singular, and nexium.  Everytime I go in they have a theory of why the coughing but nothing has helped.  I also get a sharp pain on one side of my throat that sometimes makes it hard to swallow or talk.  I don't know if this is from the prednisone or if I have damaged something with all the coughing or what.  The sweats are more severe than they were before also.  I have been trying so hard to remember that there are others that are worse off than me and so I should not complain but between the side effects of the prednisone, the PMR, and now this constant coughing I must admit I have been feeling a little down.  I just want so badly to be healthy again.  Right now I would be happy if just one of the problems could be resolved.  Anyone else have major coughing problems?  I don't know what to do next.

 

I sweated profusely this summer when doing physical activity around the house - I sweat very little normally but I was really dripping literally with this - figured it must by the Pednisone. Luckily it only happens with more than average physiscal exertion.
I have noticed a cough develop over the summer as well - not so severe that it's troublesome all day but usually more in the mornings - like the stiffness of PMR - and several times in the afternoon.
Again prior to PMR I rarely got sick - never had a cough last more than a week - this one is going on 5 months - my Doc didn't think anything of it as it was not severe but I think it's an indicator of this whole inflamatory process.

Thanks for your response.  I guess it makes me feel better to know that someone else has been dealing with a cough.  Not that I want anyone else to have it but it is somehow comforting to know that it is something that others might be experiencing as a side effect.  I don't need to be doing anything to have a severe hotflash or sweating.  Sometimes it feels like I am burning because I get so hot.  I had never been one to sweat before all of this so this is really a stretch for me.  It can be embarrassing when it happens around others that you don't know.  With the heating costs my husband thinks it is great that I am not cold like I used to be.  He can keep the heat turned down with no complaints.

Dear Pat, I do have such problems finding my way around this forum on PMR. I saw your letter about tightening calves and sore feet and tight hamstrings to buttocks. Did you find an answer. Allthe above were so sore this am that i could hardly do my exercises. Had some Panadol applied some heat and rested on the floor awaiting 'divine intervention' and then after 1 hr commenced! It is the lower part of my body that aches and I can not work out what improves it or makes me worse. Although stairs and walking hills does make it worsen. I am on 8 mgms of Prednisone and seem to be increasing the paracetamol lately. I swim walk and am fairly fit. Did you find any answers? I feel the circulation to my lower legs is impaired although there is no oedema. My son who is an ironman triathlete and fairly in tune with his body feels the next test is food sensitivities. Any thoughts?   Peaches

Peaches

I have noticed the pain in my lower extremeties as I've decreased the Prednisone. I have gone up and down from 1 to 2 mg and the pain in my extremeties seems 'consistent'. I am concluding that this is my threshold where the prednisone is helping but not masking ALL of the pain. I think you said you too are decreasing your prednisone levels. I experienced pain at higher levels but found they either went away or I simply became accustomed to the level of discomfort before deciding to move lower in my dosage. It may have taken as much as 4 weeks or more before deciding to dcrease the dosage again. I'm resigned to some level of discomfort as a tradeoff for lowering the prednisone.

I am not as active as before my diagnosis in 2004. I should add that my diagnosis coincided with a minor torn cartilege issue in one of my knees so my diagnosis was not quick in coming as a result. I've been able to lose some of the gained weight by concentrating on decreasing my food intake - not always successfully I must add. I have yet to get back into the regimen of using my treadmill or just plain walking. Going up and down stairs is the commonality in my increased leg and foot pain. I up my ibuprofen when this occurs rather than increasing prednisone. This was NOT the case the one time I REALLY overdid it and was experiencing Charlie Horse symptoms almost constantly - I had to add more prednisone for this instance - I had been painting (up and down ladder too much) as well as up and down stairs. It's been a case of re-learning my bodie's limits.

Hope this helps, but doubt it will.

Pat

 

Peaches and Pat

You have both just restored my confidence in mankind.  For months I have been complaining to my rheumatologist and doctor about my painful feet and very sore calf muscles.  They indicated to me that it was probably a separate problem from PMR, but it seemed too coincidental that it happened at the same time that my PMR started.  I saw a podiatrist and he said that it was connected with the PMR.  He sold me inserts for my shoes and that seemed to solve the problem for a while.  I am now back to square 1.  My feet hurt always when I walk ( I do letter-boxing), my calf muscles give me hell, especially when walking up and down stairs and hills. I cannot walk now without a limp. 

I am on 15 mgs prednisone and am very reluctant to take any other pain killers.  I feel sorry for you having the same foot and calf problems that I have,  but at least it confirms the fact that I'm not going mad.

Take care

Gail

PS Peaches, if its not too personal a question, where abouts in Australia do you live.  I live in Mollymook NSW

Ok you Aussies-no fair starting a new club. I'm way up in Syracuse New York and could never be allowed to join. Gail - what is letter boxing? I too walk with a limp but only for about a minute or so after sitting for a spell. Since I work in an office, at a desk, I limp a lot at work. But I refuse to up the prednisone level again. It's snowing here by the way. It's winter....

Pat

I saw on the news last night how much snow you're getting.  Is Syracuse up the top of New York state?  I went to a wedding in late December where my nephew married a girl from the top end of New York. A lot of her relatives came over and they were truly wonderful people.  Unfortunately, I cannot remember the name of the town where they live.  My sister is currently feeling the cold like you.  She lives in Minnesota.

Letter-boxing is where you are contracted to deliver junk mail in an allocated area.  I do 4 deliveries each week to approximately 250 homes.  The pay is miserable, but it gives me the insentive to get out and exercise.  Each delivery session takes about 1 1/2 hours.  On mild, sunny, painfree days doing it isnt so bad.  When the weather is wet and I'm not feeling well, then I really have to force myself.  It started out as my daughter's job.  I made the mistake of offering to help one day.  Now I do the lot.

My rheumatologist put my prednisone dosage back up to 15mgs.  He wants to reduce my dosage more gradually (by 1mg at a time).  My doctor was reducing me by 2 1/2 mgs at a time and the stiffness was coming back.  In a few days I'll be dropping to 14mgs.

Dont worry Pat, there is no secret Aussie club.  I just get curious when I notice someone from Australia.  You never know, it may be my next door neighbor.

Take care

Gail 

 

Hi,

Everyone seems to mention their stiffness or pain as they are decreasing the dosage of Prednisone.  Could some of this be a side effect from the prednisone?  I am down to 1mg now but I also have been getting sore/stiff in my upper legs making it difficult to sit at times, and my left arm and shoulder have really been bothering me.  I really want off this prednisone.  I know I read somewhere that it is really difficult to get off of prednisone so I am wondering if there are withdrawl symptoms from lowering the dosage and if so what they might be.  Does anyone know?

Thanks & Happy Valentine's Day.

I have been diagnosed with PMR after about 15 months during which time I was told I was extremely healthy for my age.   I am on prednisone but I do not like the affects.   Amongst other things it has given me high blood pressure.   Has anyone heard of any natural remedies that can help

PatMarce-

You said that you are on methotrexate in one of your posts.

Have you noticed any improvement on it?  are you still on prednisone as well?  I can't seem to get below prednisone 15 mg. without symptoms recurring with a vengence. My rheumatologist wants to put me on methotrexate and I am concerned about the side effects etc.  Any advice?

Rosey

JMBR-

There is definitely the possibility of rebound symptoms when you stop the prednisone.  The adrenal glands are suppressed on prednisone and when you stop taking it there is a real stress on the adrenal glands.  If your symptoms are worse off the drug -consider that you may need to go back on it.  Use your physicians guidance of course.

I cannot get below 15 mg of prednisone without terrible symptom exacerbation.  My quandry is whether to add methotrexate to the medication mix.

Rosey

I questioned whether the methotrexate was helping and told my rheumatologist(sp) that I wasn't sure it was helping. She said to go without and see if there was any change. I took the bait - I stopped for one week (it's a once a week drug) and I noticed the difference within two days. I went back on it. I am also trying to wean off the prednisone but I have come to terms with the slow process. I am down to 1 a day but take 2 every third day. Next week I will start 1 a day period. After two weeks of that I will skip it once every 3rd or 4th day depending on how the 1 a day goes, etc. As I go down in dosage, I take more ibuprophen if I feel discomfort. So Far so good. Patience is essential. I know, easier said than done, but slow and gradual decreasing has worked for me. If I rush it I know immediately!  

 

Pat

 

dear gail and all U.S. guys and girls, I live in Sydney and love it, but Mollymook is divine and we attended many surf carnivals there. I have not looked at the forum for a while, as I really went downhill, and so did not want to believe  I was getting worse reducing prednisone. The GP said try 10mgms after 4 days no improvement then back up to 15 mgms which I started on in Dec. Now ok but what a bummer!! I at least got back on my ex bike today with diminished strength but di ok, did my physio exercises and have taken it very easy today but feel I am going to beat it again. Still have acupuncture and massage about fortnightly which helps with some pain and keeps my head together. Saw a sports dietitian this week, because I am a wannabe be active again person. We are going with increase the fish oil, continue with glucosamine and chondroiton tabs, continue womens health, and start  magnesium in the form of a powder. She is hoping the magnesium will help with the lower leg and muscle pain but I have to be watchful as it can lower blood pressure and i am on medication for high blood pressure. Also restricting dairy foods, increasing fruit and vegs.  Maybe same old same old but I just have to attack this PMR from all angles. One more short day at work was ok but i am enormously lucky that I do not work regularly as my job is a little too active for the way i am at the moment. Good luck to all andif you find some secrets to beat this let us know  Peaches

PEACHES-

I am like you -tried to taper from 15 to 12.5mg prednisone and was wiped out and achey the next day! Bummer! I get excited when I feel better for a week and thing it's time to try to taper off again but then I regress if I do.  My Rheume is wanting to put me on Methotrexate- have you ever taken that?

It's like deciding between two poisons- two very toxic drugs which can help our situations.

I have made a huge diet change lately and feel much better for it- no white flour and no sugar.  Have lost 2 " from my waist and do feel more 'level' and not hungry all the time.

My goal is to get healthy and strong and climb Half Dome before my 60th!!!

Hang in there girl!

Rosey

Dear Rosey, Yes to the no white flour with me also. In fact I have been better off Wheat products, but have been doing this for about 5 months which started before the diagnosis of PMR. I find, if i am on the 'right for the moment' dose of prednisone, I can get out of bed easily, have a hot shower to loosen me, and do my strengthening exercises with a few yoga ones thrown in for flexibility, and I have a good start to the day.  But if I get up and do not have the energy or strength to start and just lie on the floor waiting for a miracle then the prednisone is not enough. I will try to recognise this in the future, and may have a better idea of the decreasing process. That is my hope for this week but in the mean time am on 15mgm for another week says GP. Have a good start to the week all   PeachesGail , What is the Half Dome?  My aim is to do a small triathlon.  Peaches

Peaches-

I live near Yosemite,CA.  Half Dome is a giant rock formation that people can climb holding on to a cable and it is my hope and goal to improve and be able to do that someday- perhaps my 60th BD?!

Rosey

I find that since I've had PMR, since 2002, it's been debilitating.  I was an active 56-57 yr old and now just going down hill.  I should be taking 2mg, but play around with 1mg...then I get a bad bout and take 2mgs.  Now my feet affect me.  I am so discouraged.
Samo
Samo,

Hang in there !
You're doin' great getting down to 1-2 mg/day.
Just to show you how relative everything is I'd be doing a painful jig right now if I could get down that low. I''m on my 2nd attempt at lowering dosages - had to bump myself back up to 15/day for quite a while and now starting back down again. I'm down to 8 and hope to get to your level in a couple of months - we shall see !

Are you taking anything else - Ibuprofin, fish oil, anything ??????
Sometimes some combinations can get you a bit lower.
It's been such a long time and lately I'm playing with the dosages. A few months ago my doc put me on Cymbalta, along with Zoloft and the Medrol, I finally went off the Cymbalta, did not see much happening. Why use a med that I felt was not helping. All in all it's the steriods that help. I'm having a bout today and not in the mood to do much My feet are now bothering me. I feel I'm 102 years old sometimes....so unlike me. My body sometimes wants to explode.
I am actually sick of all med. so just stick to 1/2 to 14 of a 4mg tablet. I had started off with 8mgs a couple of years ago. Bloat, weight gain, etc.
Samo38779.8490046296

Samo,

It's easy to feel beat up by this disease - I know what you mean by feeling 102. Now I walk around and everyone wants to know why I'm limping so much and when people see me who haven't for sometime you can see in there eyes they know something is wrong. That being said I feel lucky to be able to limp around - when this disease first started I could barely get out of bed, to get out of a chair I had to pull myself slowly up a door molding like climbing up a rope. So I'm not happy compared to where I was before PMR but I know I'm better off than I was when this first hit. The thing that bothers me is there is supposed to be the light at the end of the tunnel and PMR is supposed to be self limiting but it seems like a lot of people have it for a very long time - so we've got to find a way out.

I was taking fish oil for a while but didn't notice any big benefit but now I'm back on it - from what I'm reading it is absolutely essential to take it to reduce inflamation which is ultimately what PMR is all about. I'm convinced that I'll be taking it from now on wether or not I feel the benefit. From a medical mechanism point of view from current data it has to have a positive effect. Try some - maybe it will help a little. Remember when you get down and discouraged re: PMR were all in the same boat with you - you're not alone. We just gotta get this ship headed in the right direction again.

Domino38779.8832407407

Just an FYI, I found a very informative site regarding weaning off prednisone, although not related to PMR.  It sounds like many of you have personal experience with the process already, but some might find this info useful.  I just started on prednisone less than 2 weeks ago, and wanted to know what I was in for!

http://www.marshallprotocol.com/forum2/1917.html

 

Hi,

I read the article that TicketyBoo posted about weaning from prednisone and have started doing half my dose in the morning and the other half in the afternoon.  I had heard of this before but forgot to try the last time we tried lowering the dosages with me.  My question is in that article it talks about taking something called Benicar. "The recommended dose of Benicar is 40mg every six to eight hours to provide this helpful inflammatory blockade. It is highly recommended to avoid all forms of ingested Vitamin D (food and supplements) and sun/lights, including wearing NoIR sunglasses (indoors and outdoors). This will help prevent symptoms caused by dysregulated Vitamin D metabolism, which could add to the discomfort. These measures should also be started at least a week before beginning to wean from prednisone."  My question is if I am NOT on Benicar does this mean I still should stay away from Vitamin D.  That had been one of the few vitamins that I take and am wondering if I should stop taking it.  Or is the article saying the comment about Vitamin D only in relationship with Benicar?  Thanks for any input. 

Because the site is discussing the weaning from Prednisone related to another condition (not PMR), it is possible that the Benicar and Vitamin D notes are specific to that other condition.

I just took a closer look at the site about the Marshall Protocol that covers weaning from prednisone, and it might be worth further investigation, perhaps asking your specialist about.  It's a protocol that's been developed to treat inflammatory immune-related diseases, and the author notes that it could be used to treat polymyalgia rheumatica, although I don't know if it has been tested yet.  The site is:

http://www.marshallprotocol.com

re twitches

yep Janavive........tell your hubby I too, when on prednisone for PMR had twitches...Had them  in my lips toes and fingers. I was so scared thinking I had developed Parkinson's!!!

Hi All,

I am really please to find this forum and noticed some common threads in previous posts:

1. The literature on PMR states the average age on onset is 70! (made me feel very old at only 58.)  Obviously the age of this group is much lower. Maybe someone needs to revisit this issue.

2. Finding a doctor knowledgable about PMR is not easy. My PCP knew immediately that my bizarre symptoms were typical of PMR and prescribed prednisone which solved the problems in 36 hours. However, he believes doses of less than 7.5 mg should not have any affect because that is the body's normal level of adrenal hormones. I need to show him your comments on the difference small adjustments make.

3. Tapering off Prednisone is everyone's dream but can be stressfull and result in exacerbations (relapses.) I had this happen recently when going from 7.5 mg to 5mg.  Your comments made me much relieved that there was a reason for the increase in symptoms.

4. I experienced lowered bone density on Prednisone but resuming Premarin seems to have reversed it.

Thanks for having a place to learn from each other about our "rare" disease.

Cherilnn in Tampa

 

 

 

I am a newbie, too, but have been lurking for a while before joining.  Like the rest of you, it sure is nice to have others who understand what is happening to me.  I had never heard of PMR either and have not had much help from the rheumy or my GP.  I think I have had it for a long time, but did not get a diagnosis until one morning in April 2006 when I woke up and honestly thought I was dying!!!  My head hurt so bad, I thought I was stroking out!  Started me off on 80 mg pred. have come down to 6 so far.  Anyway, I tried the Marshall Protocol today, dividing the dosage in half morning and afternoon doses and I feel I have really done better today.  Also what we are experiencing is in fact, withdrawal symptoms from the pred.  I thought it was not getting enough pred. to alleviate symptoms but according to the Marshall Prot. it is withdrawal so it makes sense that to divide the dosage in half would help.  Pred. only has a half life of 4 hours so if you take the other half mid afternoon, should get you through most of the day.  It is interesting reading and worth a try, it may give you some relief. 

The Marshall Protocol itself applies mainly to sarcoidosis, but some of the tips on weaning off prednisone are certainly helpful for us PMR sufferers.  However, I think in most cases, rather than being symptoms of prednisone withdrawal, the return of our aches and stiffness are more likely a flare up or relapse of PMR.  It's hard to tell, though, with the possible symptoms of prednisone withdrawal being so close to the PMR symptoms themselves.

Interesting that Marshall blames Vit. D (sunlight) for fueling what he considers a bacterial infection, rather than an auto-immune condition (sarcoidosis).  PMR patients are told to take Vit. D and calcium to prevent bone loss, not to avoid Vit D.  BTW, it seems that DHEA can also be effective in preventing bone loss caused by corticosteroids.  Although most doctors are cautious about recommending DHEA, most of what I've read shows the benefits of DHEA have more "proof" behind them than the supposed risks.  There may never be the type of clinical trials Dr's like to see, since there is no patent on DHEA and it is unlikely funding for such studies will be made available.

Yes, it is important to realize he is talking about weaning patients off or almost completely off pred. before beginning this antibiotic Benacar, plus some other drugs as needed to kill off this systemwide infection that he says is cause of many of the inflammatory diseases.  The prednisone blocks absorption of the drug so that it can't get to the infection.  If you google Marshall Protocol it will give you several websites that have info about it on there.  He does believe sunlight and Vit. D need to be avoided in the diet as well as any bright light.  I'm not saying one way or the other about it. But you need to read up on it and understand it because if you decide to try it, you are going to have to convince your rhuemy and your GP to give you the necessary drugs to get started and there are side effects of the regimen that you need to be aware of too.  I am just trying the weaning off the pred. info.  You also need to know the author of the Marshall Protocol is not an MD, he is a research scientist, but he suffered from sarciodosis and found this regimen worked for him and he has others trying it to see if it will work on other diseases as well, but they have not been on it long enough to tell if it works. 

Hi!  I am male and 69. I have had PMR for 14 months. Before the diagnosis I perspired when waking up at night-time, but have had no problems with perspiring until recently. I was weaning prednisone but when I got down to 3  mg/day I had to get up to 5 mg. Now when I am down to 3.75 (one half 5 mg pill and a half of a half) I have suddenly started to sweat at even very small physical exercise - like walking. I have just been to my doctor to-day and will await the result of the blood tests. Unfortunately I get tired very easily when walking uphill or when I have any physical exercise. When I started with 30 mg about a year ago, I walked gladly 24 blocks on a visit to the California - without any problem. and then back. But then I was on 30 mg prednisone.

 

   I am wondering if everyone is gone from here? Anyone out there?

  I have sweats something terrible and I live in the desert . I have become a nudist  .  The sweats have nothing to do with my age , been there , done that and I was having them before I was diagnosed.

 A question - Does anyone feel completely healthy while on medication?  I have been on 10 mgs and felt better almost over night but not great. Gained 5 pounds and have a round face. What fun

Hi Kashah,  I know what you are saying this board is not very active.....................but anyway talk about the sweats,  I am always sweating night time the worse............I wake up and really feel like I am going to die................This is the most terrible thing I have ever gone through...............Good luck................Georgiana 
 

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