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Medical Forum / Diseases and Disorders / Arthritis / May 2006Polymyalgia Rheumatica
Without any serious health problems apart from high cholesterol (250) and an immune system of 3.5 and below) white blood cells (for almost ten years) a seventy-two-year-old female makes up on Feb 3,2006 with stiff legs, neck, arms, etc. and pains all over her body, which she interprets as the onset of fluor the sideeffect of AKTONEL she makes use of for osteoporosis for the first time. She discontinues intake of AKTONEL and expects the pains to recede. However, in about a month's time, she is totally incapacitated by stiffness, acute pains in the legs, arms, fingers, back, head, neck, vertebrae at waist level, fever (around 38 C), swollen knees and ankles. Doctors diagnose acute POLYMYALGIA RHEUMATICA and prescribe a treatment with PREZOLON. The patient's response to the drug is gradual with relapsing in a less acute way every time the cortisone dose is decreased. At present (May 30,2006) almost 3 months after the attack with cortisone (for the last 20 days alternating pill to a ½ pill - 5 mg - each pill every other day) the situation has improved very much apart from the neck, nape, shoulders, the underpart of arms, forearms, fingers, palms (burning sensation) which are still painfull, as well as partly swollen tonsils, ankles and knees. Onset of Disease : February 3, 2006 Medication : PREZOLON 5 mg - pills / LOPROC pills before Prezolone intake Treatment period : March 13 - May 30, 2006 Initial blood tests : April 3, 2006 - Abnormally high rates of WBC = 7.5 (usually around 3.5) - CRP : 7.70 - RA-TEST : 10.0 Latest blood tests (May 5, 2006) - everything normal, CRP : 2.70 - RA-TEST : 10.0 Ultra sound : Upper and lower abdominal region normal Thorax X-Rays : normal Thorax Scanner : normal The patient has been told that the cause of the above disease is UNKNOWN. I would be grateful to you if you could give me your opinion as to : The diagnosis The origin The treatment The recovery period The after-effects (sequelae) involved Thanking you in advance See http://www.arthritis.ca/programs%20and%20resources/news%20magazine/1990/matica/d efault.asp?s=1 for one article about PMR. Mine started in late 2001. My PMR is apparently gone, but I can't get off predisone without significant pain and stiffness in places other than the hips and shoulders of PMR. You should expect PMR to last for one to two years, and tapering of predisone to be in one mg increments when less than 10 mg. I am now on 4 mg. > Without any serious health problems apart from high cholesterol (250) and an > immune system of 3.5 and below) white blood cells (for almost ten years) a [quoted text clipped - 51 lines] > > Thanking you in advance The drug she would have been given is prednisone and this sounds like a similiar diagnosis and treatment to many people who have written in here. It takes time to slowly come off the prednisone and each drop in dose does sometimes bring back the symptoms for a bit until the body gets used to it again. Sounds like a good doctor and sounds like she is getting better. This does seem to be a problem that occurs to an older population - must look that up. We don't seem to often have younger people complaining about it. It does seem to slowly (although it can take a year from what people say) go away with the help of the prednisone and the prednisone does seem to be able to be weaned off. Good luck, Kelly > Without any serious health problems apart from high cholesterol (250) and > an immune system of 3.5 and below) white blood cells (for almost ten [quoted text clipped - 51 lines] > > Thanking you in advance > Without any serious health problems apart from high cholesterol (250) and an > immune system of 3.5 and below) white blood cells (for almost ten years) a [quoted text clipped - 5 lines] > stiffness, acute pains in the legs, arms, fingers, back, head, neck, > vertebrae at waist level, fever (around 38 C), swollen knees and ankles. > Doctors diagnose acute POLYMYALGIA RHEUMATICA and prescribe a treatment with > PREZOLON. The patient's response to the drug is gradual with relapsing in a > less acute way every time the cortisone dose is decreased. When I had polymyalgia rheumatica my response to prednisolone was immediate, i.e., within a few hours all pain and stiffness would be gone. My rheumatologist wanted me to decrease dosage faster than was possible for me without relapse, which he took as a sign that I should stay on it forever at 10mg/day. I read up on PMR in medical textbooks and research papers and disagreed. I devised my own tapering off programme. I regarded any kind of relapse, i.e. resurgence of pain and stiffness, as a sign of damaging inflammation, and did not allow it to happen. At the slightest sign of increasing stiffness I would take a 2mg booster and move back to the previous dose and wait another month before trying for a dose decrease again. It took me years to stop the pred. First I reduced the dose every other day by 1mg decrements, only if I could do so without *any* relapse, until I got from 6mg/day to 6mg every other day. Then I started reducing that. By the time I got down to 2mg every other day I was going down in 1/2mg decrements. After I stopped it would sometimes start creeping back on me. My shoulders would start stiffening up. When that happened I would take a one off 2mg dose. Over about a year the need for these occasional supplements reduced in frequency until they ceased. > At present (May 30,2006) almost 3 months after the attack with cortisone > (for the last 20 days alternating pill to a ? pill - 5 mg - each pill every > other day) the situation has improved very much apart from the neck, nape, > shoulders, the underpart of arms, forearms, fingers, palms (burning > sensation) which are still painfull, as well as partly swollen tonsils, > ankles and knees. I would have regarded the slightest shoulder stiffness as a sign of damaging inflammation which indicated that the dosage needed to be increased. Don't forget the dangers of giant cell arteritis if inflammation is not controlled. > Onset of Disease : February 3, 2006 > Medication : PREZOLON 5 mg - pills / LOPROC pills before Prezolone intake > Treatment period : March 13 - May 30, 2006 > Initial blood tests : April 3, 2006 - Abnormally high rates of WBC = 7.5 > (usually around 3.5) - CRP : 7.70 - RA-TEST : 10.0 > Latest blood tests (May 5, 2006) - everything normal, CRP : 2.70 - RA-TEST : > 10.0 > Ultra sound : Upper and lower abdominal region normal > Thorax X-Rays : normal > Thorax Scanner : normal > The patient has been told that the cause of the above disease is UNKNOWN. AFAIK the cause of PMR is unknown. > I would be grateful to you if you could give me your opinion as to : > The diagnosis Not a doctor, just once a sufferer, but it sounds like what happened to me. Before I was diagnosed I had become so stiff and painful I couldn't brush my hair, I couldn't put on my socks, and it would take me about half an hour to devise the least painful way of getting out of bed and onto my feet. The diagnosis AFAIK is one of exclusion, i.e. we can't find anything else wrong and it responds like magic to pred in the 15mg range so it must be PMR. > The origin > The treatment > The recovery period If it's PMR then recovery can take a few years. It's a mistake to try and hurry it. It goes away by itself, and AFAIK the only treatment is to control the inflammation to stop damaging developments until it goes away by itself. > The after-effects (sequelae) involved IMHO there shouldn't be any, unless slowness in diagnosis or trying to be too hasty with cutting down on inflammation control has led to damage. Patience is required.  SignatureChris Malcolm cam@infirmatics.ed.ac.uk +44 (0)131 651 3445 DoD #205 IPAB, Informatics, JCMB, King's Buildings, Edinburgh, EH9 3JZ, UK [http://www.dai.ed.ac.uk/homes/cam/] Music 'can reduce chronic Pain' Research has confirmed listening to music can have a significant positive impact on perception of chronic pain. US researchers tested the effect of music on 60 patients who had endured years of chronic pain. Those who listened to music reported a cut in pain levels of up to 21%, and in associated depression of up to 25%, compared to those who did not listen. For complete detail:- http://epsdrugstore.com/5-29eps6.htm > > Without any serious health problems apart from high cholesterol (250) and an > > immune system of 3.5 and below) white blood cells (for almost ten years) a [quoted text clipped - 102 lines] > IPAB, Informatics, JCMB, King's Buildings, Edinburgh, EH9 3JZ, UK > [http://www.dai.ed.ac.uk/homes/cam/] > Music 'can reduce chronic Pain' > [quoted text clipped - 7 lines] > and in associated depression of up to 25%, compared to those who did > not listen. Heck, I could have told them that without costing them one red cent! LOL They never could have gotten me to volunteer for the "no music" group, music is to vital to daily survival in our house. SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare I am so happy to have seen your message. I am a healthy 66 year old woman who, one year ago, got PMR out of the blue after taking two doses of Fosamax. I believed that it was not a coincidence and did find some info on the net about persons getting inflammatory diseases after taking biphosphonates. I am now on 3.5 mg of prednisone with an ESR of 6 which is g ood but I can't go down any more now because I have so many symptoms. Please let me know if I am not writing into the right thread or person. I am a home health nurse in CT and really wanted to find some people who would give me feedback on PMR, > > Music 'can reduce chronic Pain' > > [quoted text clipped - 15 lines] > remove the Gator cheer to email me > Simply the thing I am shall make me live --- William Shakespeare Thank you Cris,,,,, that was the best telling of a persons dealing with PMR that I have ever read. The way you cut back on prednisone was what was needed in your case. Someday when they fully understand what is taking place with inflam.arth. and PMR what people have to do to live with them will just be a bad memory but until that time comes,,,, it is people like you that will help us to live with what we have. thanks Harv >> Without any serious health problems apart from high cholesterol (250) and >> an [quoted text clipped - 105 lines] > be too hasty with cutting down on inflammation control has led to > damage. Patience is required. My mom's story has been similar to Chris's, except no doc tried to keep her on higher doses of pred longer than she wanted. She had to stay at 15 mg/day for about 2 years, then was finally able to very slowly taper. She is now on (I think) 2 mg/day and can't seem to drop below that. Her doc still worries about it, but she is 78, has the bone density of a healthy 30 year old and has already had cataracts removed and figures she might as well feel decent for the years she has left! Her doc hasn't been able to counter that argument. Meanwhile, a neighbor of ours has been battling the PMR for about a year now. She's been able to taper off prednisone more rapidly, but has pushed that partly because she's suffered more side effects from it. She has also had some signs of giant cell arteritis and is being referred to a vascular surgeon. It's important to be followed by a doctor who knows a fair amount about PMR. SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare >> Without any serious health problems apart from high cholesterol (250) and >> an [quoted text clipped - 103 lines] > be too hasty with cutting down on inflammation control has led to > damage. Patience is required. >When I had polymyalgia rheumatica my response to prednisolone was >immediate, i.e., within a few hours all pain and stiffness would be [quoted text clipped - 7 lines] >2mg booster and move back to the previous dose and wait another month >before trying for a dose decrease again. ... Very nice post, Chris. I've heard some similar stories, that it takes a huge amount of effort to get off the prednisone after its use for PMR, that it can be done, but a lot of doctors just keep their patients, especially older ones, on the prednisone forever, instead. Anyone here dealing with PMR or prednisone reduction generally ever tried pantethine? A recent thread on the psoriasis newsgroup: http://groups.google.com/group/alt.support.skin-diseases.psoriasis/browse_frm/th read/5298f291f6a78fab/fa44a4106792b205 J. > Without any serious health problems apart from high cholesterol (250) and an > immune system of 3.5 and below) white blood cells What's the differential on this? In other words, what are the percentages of the different white blood cells (WBCs) that make up this white cell count (WCC)? > (for almost ten years) a > seventy-two-year-old female makes up on Feb 3,2006 with stiff legs, neck, > arms, etc. and pains all over her body, which she interprets as the onset of > fluor the sideeffect of AKTONEL she makes use of for osteoporosis for the > first time. She discontinues intake of AKTONEL Actonel? She shouldn't be taking that at night and then going to bed. It should be taken first thing in the morning, half an hour before food, and two hours before other medications. Do not lay down after taking this drug: remain upright or in an upright seated position. > and expects the pains to > recede. However, in about a month's time, she is totally incapacitated by [quoted text clipped - 3 lines] > Doctors diagnose acute POLYMYALGIA RHEUMATICA and prescribe a treatment with > PREZOLON. prednisolone? > The patient's response to the drug is gradual with relapsing in a > less acute way every time the cortisone dose is decreased. [quoted text clipped - 5 lines] > sensation) which are still painfull, as well as partly swollen tonsils, > ankles and knees. Have the doctors looked for markers of viral infection? Some people can have a good response to tetracycline type antibiotics if used shortly after their first episode if the episode was caused by a reaction to a minor or relatively minor chronic baterial infection. > Onset of Disease : February 3, 2006 > [quoted text clipped - 3 lines] > > Initial blood tests : April 3, 2006 - Abnormally high rates of WBC = 7.5 This is one of those markers of infection that I was wondering about! > (usually around 3.5) - CRP : 7.70 - RA-TEST : 10.0 > [quoted text clipped - 8 lines] > > The patient has been told that the cause of the above disease is UNKNOWN. I'd seriously look at infection as a trigger. > I would be grateful to you if you could give me your opinion as to : > > The diagnosis > > The origin see above > The treatment see above > The recovery period > > The after-effects (sequelae) involved > > Thanking you in advance Signaturespammage trappage: remove the underscores to reply I'm going to die rather sooner than I'd like. I tried to protect my neighbours from crime, and became the victim of it. Complications in hospital following this resulted in a serious illness. I now need a bone marrow transplant. Many people around the world are waiting for a marrow transplant, too. Please volunteer to be a marrow donor: http://www.abmdr.org.au/ http://www.marrow.org/
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