Re: Polymyalgia Rheumatica

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.

--
Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare


On Mon, 29 May 2006 2:14:15 -0400, Chris Malcolm wrote
(in message <4dvhpnF1bsqpkU1@xxxxxxxxxxxxxx>):

daher <catherine@xxxxxxxxxxxxxxx> wrote:

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.

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.




.

Relevant Pages

  • Re: Polymyalgia Rheumatica
    ... She discontinues intake of AKTONEL and expects the pains to ... less acute way every time the cortisone dose is decreased. ... immediate, i.e., within a few hours all pain and stiffness would be ... stiffness, as a sign of damaging inflammation, and did not allow it to ...
    (alt.support.arthritis)
  • Re: Polymyalgia Rheumatica
    ... Thank you Cris,,,,, that was the best telling of a persons dealing with PMR ... less acute way every time the cortisone dose is decreased. ... immediate, i.e., within a few hours all pain and stiffness would be ... stiffness, as a sign of damaging inflammation, and did not allow it to ...
    (alt.support.arthritis)
  • Re: Polymyalgia Rheumatica
    ... Music 'can reduce chronic Pain' ... less acute way every time the cortisone dose is decreased. ... immediate, i.e., within a few hours all pain and stiffness would be ... stiffness, as a sign of damaging inflammation, and did not allow it to ...
    (alt.support.arthritis)