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Hiya
I thought I'd come and ask you wise ladies for some advice ...........
I was wondering if anybody has or knows anyone who suffers from Polymyalgia rheumatica. A lady in my family seems to have developed all of the syptoms (very rapidly over a couple of months). She was visiting an osteopath for severe hip and shoulder pain when he suggested that she consulted her GP for blood tests. The tests have shown low levels (apparently they don't always show even when syptoms are full blown) but the decline in her health since then has been shocking - I can't believe she is the same person and she is in so much pain. Until she sees the consultant there is very little she can do except take painkillers and even then they aren't much help. I was wondering if anyone knows of anything she can do in the meantime (alternative therapies,which type of painkillers are most effective or just common sense?) that will help make her more comfortable and perhaps ease the symptons.
I'd be really grateful if anyone has any advice.
Thanks :hug:
Posts: 8,574http://www.nlm.nih.gov/medlineplus/poly … matica.htm
http://www.arthritis.ca/types%20of%20ar … lt.asp?s=1
http://www.medicinenet.com/polymyalgia_ … rticle.htm
Best wishes....I am sorry she is hurting so.
gollyhugs
dilu
Thank you Dilu :hug:
I'd never heard of this complaint before - I can't believe how it has affected her. I'll go an have a look at those sites now.
Thanks again.
Posts: 8,574What are symptoms of polymyalgia rheumatica?
The onset of the illness can be sudden. A patient may have a healthy history until awakening one morning with stiffness and pain of muscles and joints throughout the body. These symptoms persist and are often accompanied by an intense sensation of fatigue. Some patients notice a gradual loss of appetite, weight, and energy. Depression can occur.
The doctor frequently notes muscle tenderness and that the motion of the shoulders is limited by pain. The joints are usually not swollen. However, swelling of the small joints of the hands, wrists, and/or knees can occur. Blood testing for inflammation is generally abnormal, as indicated by a significant elevation in the erythrocyte sedimentation rate (ESR) and/or C-reactive protein. There are no specific tests, however, for polymyalgia rheumatica and x-rays are normal. The diagnosis is based on the characteristic history of persisting muscle and joint pain and stiffness associated with elevated blood tests for inflammation, such as the ESR. It is also not unusual for patients to have slight elevations of liver blood tests.
How is polymyalgia rheumatica treated?
The treatment of polymyalgia rheumatica is directed toward reducing inflammation. While some patients with mild symptoms can improve with nonsteroid antiinflammatory drugs, such as aspirin or ibuprofen (Motrin, Advil), most patients respond best to low doses of cortisone medications, such as prednisone or prednisolone. Not infrequently, a single day's cortisone medication eases many of the symptoms! In fact, the rapid, gratifying results with low dose cortisone medications is characteristic of polymyalgia rheumatica.
The dose of prednisone is gradually reduced while the doctor monitors the symptoms and normalization of the blood ESR. Reactivation of symptoms can require periodic adjustments in the prednisone dosage. Most patients are able to completely wean from prednisone within several years. Some patients require longer term treatment. Occasionally, patients have a recurrence years after the symptoms have resolved. The ideal prednisone dosing regimen continues to be sought by researchers.
What is the prognosis for patients with polymyalgia rheumatica?
The prognosis for patients with isolated polymyalgia rheumatica is ultimately very good. Polymyalgia rheumatica can occur in association with giant cell arteritis (see below). One of the keys to successful treatment is gradual, and not rapid, tapering of the medications. This can avoid unwanted flare-ups of the disease.
Because the medications prednisone and prednisolone are associated with potential bone toxicity, causing osteoporosis, patients should consider calcium and vitamin D supplementation. Women should have bone mineral density testing and osteoporosis medications, such as estrogen, alendronate (Fosamax), and risedronate (Actonel) are considered.
http://www.medicinenet.com/polymyalgia_ … /page3.htm
Its the reason I becaem a nurse....they said i would be on it till I died...I fooled them but it was hard work. there are a lot of tricks so that the side effects don't get the better of you.
golluhugs
dilu
Bears by JodiDilu !! Your a nurse ? I kept reading what you were saying and I thought .... Oh my she is smart !! Then you said you are a nurse. I called a friend of mine she has extreme, pain and is on 2 really strong drugs. One is a patch she changes every 2 days. But the pain she is in shuts her down at least 25 days out of 30 in a months time. Doctors just keep passing her around till she cant really afford to go any more. She is allergic to prendazone or how ever you spell it . She breaks out in blisters that seep liquid !! It is terrible. But I told her to look it up on the net . She lives , sleeps , breaths medical, and is very smart her self. Her daughter just became a nurse. Maybe this will help her also. I don't know how to help her any more other than just be there for her.
Jodi Falk
Thank you again Dilu.
I think that's one of the things worrying her - Prednisone - that's the cortisone? It's really kind of you, if that's what she's prescribed, I will come and knock on your door. I think she's quite warey of any medication so if I can give her any reassurance from some one with first hand experience that would be wonderful.
She has put her name down for a local support group but it's not up an running yet so I think she feels a little bit in limbo.
Again, thank you so much :hug:
Posts: 8,574docs get frustrated because they are narcissistic. They get really bummed by themselves when they "fail" not realizing it isn't anyones failure it is the wonder of the human being and the human body. So docs, wanting instant gratification but not knowing they could have that in other ways, will pass a patient around when they can't figure out anything.
So
your friend needs to do a few things....like diary her pain when where what , what she was doing and what she ate, breathed, drank..etc
i am sorry to hear that predinsone does this to her. Does the prednisolone do it too?
I suspect she has not found a doctor who is willing or able to take the time and research what her problems are in order to diagnose her.
I hope your friend is using her internet to do research herself.
Here's the deal:
No one cares about our health more than we do....therefore WE must figure things out.
The doctor is only as good as the patient is in giving him information. Medicine isn't a science perse....but it is al lot of educated guessing.....and the more clearly concisely and coherently she can give her information the more likely she is to get somewhere. ergo the diary.
i know doctor shopping is hard....but if she isn't getting anywhere with one doctor she needs to push for referrals....From the tiny bit you mention it sounds like rheumatologist would be the way to go, and one who will give her the time she needs....
I am so sorry her life is so bleak. It is hard to have hope when things are this bleak but she must. without hope there is nothing.
hugs
dilu
Bears by JodiDilu, the last doctor we went to the other day ( I always take her on my day off ) saw her diary of pain and every thing like you said to do and she told her that she could not help her because she thought she was manic !! Well I thought my friend would explode when we got out to the car because like I said she is no dummy. She always picks the best doctors in the area but....... It is really crazy !!!! Now they just have her marked as a crazy !!!! It is soooooooooo sad !!! I would like to give you her e mail and if you feel so moved please see if you can talk to her . She can communicate on your level . Just tell her Jodi sent you !!! I will e mail it to you. But if you don't want to get in the middle I will surely understand. It is a pretty heavy discussion.
Posts: 8,574she should tell the doctor....a "nurse friend" said to outline the problems and bring in the pain diary....place the blame on a "medical" person, then itis harder to label the patient.
I always take to the doctors a typed list of medications and dosages, an outline of what I want to cover and a list of questions. It is all on one page...and i have a copy and give the doctor a copy....it makes things easier for both of us... that is simply de rigueur for me and I have yet to meet a doc who didn't appreciate it cuz it really is easier. don't give it to the little medical aide who takes the blood pressure....it will get put into the chart and the doc will never see it.give it to the doc when he she walks in....
Short concise typed....they will have more time to listen...
But for some people it is the only thing that will work. There are many ways to off set the side effects so they aren't so severe....and the docs really have gotten smarter. It used to be thought that the dosages had to be large....like 160mg and working down to 10mg. They don't do that nearly as much as they used to. And it used to take 2 - 3 weeks to work down and now they will do it in days. The anti inflammatory properties are so potent and so good that we can use smaller doses and still have great results.
good luck!
dilu
Dilu
You're an angel - I'll print of your advice and links and let her have them all tomorrow.
I'm going to say it again .........
Jellybelly BearsI'm on pred...have been for ages for my arthritis, plus a host of other pain meds. any info on living with it I'm here to help also...
There are two types of steroid, hydro and pred...I can't take hydro, so even tho the docs say there is no difference, there is!! Its worth trying both..
Dilu...yep, Docs do get frustrated and I've only started to realise that it must be hard for them too...things should work theroetically and I've only now found terrific docs who are actually sad when they can't help me...that made me realise that it does affect them too...
Also agree that we need to be the doctors now and research research research....geez with all the medical probs in my family I think we could all pass medical school lol...but you need to do it...you need to be in charge of your health otherwise you get nowhere nowadays....sad...
Vicky, my daughter was diagnosed with rheumatoid arthritis about a year ago. Before her diagnosis, she couldn't even walk downstairs properly, had to slide down a step at a time on her bum. She's 23 and was a competitive swimmer for years but the RA reduced her to being unable to get out of bed in the mornings without extreme pain. It was so hard to watch. I don't know if this is a similar thing at all, but all I would say is tell your friend not to give up hope. The meds can be intimidating with regard to side effects, but Fay's attitude to them was 'anything has to be better than the pain'. She has been medicated for some time now and only has occasional flare-ups. She's back swimming again and dances every Saturday night!
Thank you Paula - your poor daughter - at such a young age ,that must have been terribly hard for both of you. The doctors seem to be terribly slow when it comes to diagnosing these conditions - but I suppose there do seem to be an awful lot of variations. I'm glad the medication has worked so well for her and I do hope her better health continues. I'll pass your message on to my friend. When I told her I'd posted on TT she was so pleased and grateful for the responses - she has asked me to print copies and thank everyone for their advice. She has a folder where she's keeping all the information she finds.
Thank you again. :hug:
Posts: 8,574You are so right.
Hope is the glue that holds us together when things hurt too much to continue on....somehow we do and I think it is hope that helps keep us going......
could you give your daughter a gentle hug from all of us who know what crummy pain is....and tell her if all else fails a sense of humor and hope....hang on to those.
dilu sat down in the middle of vacumming this morning...thinking she would have a little pity party. And then it hit me! I said; "You nidget! You're already 54 years old, that means you don't have enough time left to get everything you want done, even if you live to be a hundred (not bloody likely) so you simply don't have time for a pity party. Get off your butt and finish vacuuming and then you can rest on your laurels....."
When I was young and I would hear that phrase,
,
OK, I did cry....just a little while I vacuumed.....but I got it done!
Nova Scotia,CanadaOh Dilu 
gentle hugs to you my dear beloved friend!! :hug: :hug: :hug: :hug: :hug: :hug:
Dilu, you are worth your weight in gold! Great advice, good humour, life experiences shared ... what would we do without you?
Posts: 8,574:crackup: :crackup: :crackup:
