PMR | Arthritis Information

 

I have been reading messages to this Forum for the past year.  I am resident in the UK but haven’t managed to find anything similar to this Forum here.  I thought that it was about time that I put my experiences down in the hope that it may help some of you out there.  For the record, I am female and aged 62.

 

I was very lucky in that I was diagnosed immediately with PMR.  I had been feeling unwell for about a month, I was very sore and thought that I had overdone the DIY and the gym!!  I then went to Egypt on holiday and had difficulty in getting out of bed.  I was in so much pain that when I got back to the UK I went to see my doctor and she took one look at me and asked me what on earth was the matter.  When I explained she said that she thought it was PMR and sent me for blood tests.  My ESR (sed rate) at that stage was 102 and my CRP was 57.  She started me on 30 mg of Prednisolone on 5 April 05 and then gradually over the next year I came down to 0 by May 2006.  Unfortunately my symptoms started to come back and on 9 June I was put back on to 30 mg but then came down very rapidly to 3 ½ mg. by 14 September.  My symptoms started to come back and I began to feel depressed (I am not normally depressed but I believe that this is one of the symptoms of the illness).  I have just put myself back to 7 ½ mg for 5 days and am now on 6 mg.  I will stay on this for 5 days and then get back to 5 mg.  I am kind of self prescribing but I feel that I have been on Prednisolone for so long that I am able to do this.  I personally feel that 5 mg is probably the right dose for me for the present.

 

I have been very anti steroids as my father suffered from Rheum. Arth. Back in the 50’s and I saw the devastation that they could cause (they were not able to control the dosage as well as they can now).  I have also been diagnosed with osteopenia and am convinced that the steroids have caused this,  However, I have now decided that quality of life is more important than the dosage of steroids. 

Hi. This PMR can be the pits, can't it? I'm glad you
got diagnosed so quickly. My present rheumy asked why I
went for so long without medication, and I told him it
was because no one knew what I had, and when a
wonderful nurse practitioner suggested PMR and put me
on a trial dose of prednisone (after which I felt
normal again), I was then referred to a rheumy who I
refuse to see again. He was not at all sympathetic.
With insurance changing a couple of times, and having
to change primary care doctors, I felt like I was
getting the run-around (isn't managed medicine
wonderful -- at times certainly NOT!!). I've seen 3
other rheumatologists since the first bad one, and
really like the one I have now (I liked all the other
ones; it's just that one went into research and quit
her practice, and I had to leave the other when our
insurance changed). Has your doctor put you on Fosamax
or something similar to help prevent bone loss, or are
you not able to take it? The prednisone is bad for
causing bone loss, especially for those of us
postmenopausal women. I've had minimally low bone
density since at least age 51 when I asked for a DEXA
scan. Haven't had a DEXA since, but may push for one
again soon, as I will have to go on prednisone again
soon. Are you making sure you get enough calcium and
vitamin D? I have heard that the current recommended
daily allowances for these are on the low side. One of
my doctors told me I should be taking 800 mg of vitamin
D (since I live in Oregon, we don't get a lot of
sunshine in the winter time), and 1200-1500 mg calcium
a day.
The first time I was on prednisone, I started to hurt
again when I tapered to about 8mg. Since being off of
it for over a year - I did take plaquenil for a while,
but it didn't seem to help much - I am relapsing, and
pretty achy and stiff most of the time. SED rate has
been climbing over the past 6 months, so the dr. wants
me back on prednisone. I'm looking forward to it this
time, despite the side effects, because I'm tired of
hurting. I hope you are able to wean yourself from the
prednisone without any more problems. Let me know how
it goes. Take care.

Thanks for your message.  We are lucky in the UK as we have the National Health so no problems with insurance etc.  I had the same doctor for 18 months but then I moved home and my new doctor doesn't send me for blood tests so no idea what my Sed rate is.  Presumably it is OK as I am not hurting too much.  I do take Calcium supplements and Vit D as my current doctor recommended doing so.  Funnily enough the doctor who diagnosed the PMR said it was better to get the calcium from natural sources rather than supplements.  But the current one recommended supplemtns.  I had a bone scan in October 2005 and I am waiting for another one now.  One disadvantage of our National Health is that it can take a while to get certain tests done.  In Emergencies it is brilliant, other than than it can be quite tiresome.  Take care.

Elizabeth

HI, Elizabeth!

Nice to hear back from you.'' It's always best when
we can get our vitamins and minerals from natural
sources, but that doesn't always work out. I have been
keeping track of my intake, and find that I don't get
near enough calcium from what I eat, so I take a
supplement. I hope I get to have another DEXA soon.
I've been walking a lot more lately, though not doing
too much of the weights like I used to before all this,
and would like to see if that has helped the bone
density any. My present rheumy has been checking my sed
rate every 3 months. He seems to be pretty thorough.

May I ask where you are from in the UK? My dad was in
the Air Force, stationed at Lakenheath in 1963, and we
lived in Newmarket for 6 months before getting
transferred to Germany. I loved it there, despite the
very cold winter (coming from Texas at the time, we
weren't used to snow, so it was a fun time for my
brothers and me). The people were so nice, the scenery
was beautiful, and I love the accents!!

Hopeyour bone density test shows good results. Take
care.

Reni

Hi Elizabeth and Knitwit!

I have been surprised before that nobody has mentioned calcium supplements as I was prescribed to take Calcichew already from the start of taking Prednisone. We have also national health service and in my case it has worked well even if I have been unfortunate to have had about 5 doctors since 06/05. I cannot say anything negative about any of these - it is just that I have to repeat my background story each time even if they follow on the computer screen. I was also prescribed to take Opremazol (Losec-like) to prevent stomache problems. During the summer, I got a red face in the sun and was told I could discontinue if I didn´t have any stomache problems - and I haven´t.

RD Swede

Hi, RD Swede,

Guess we kind of take some things for granted; yes, I
was told to take calcium and vitamin D at the start of
prednisone, too, but also was started on Fosamax in
addition to the vitamin supplements, because of my low
bone density and being in post-menopause (and not
taking hormone replacement therapy). You're right; it
is important to be increasing one's calcium intake, if
not on something like Fosamax too, when starting
prednisone.

I am happy to report that I have been feeling pretty
good for the past couple of days. Aside from waking up
a few times at night now, and suffering several times
during the day from worse hot flashes than before
(still a mystery to me why they should all of a sudden
be getting worse), I am doing quite well without any
medications. I trust it will last, and that this is the
beginning of the end of PMR for me, as I've had it for
over 4 years now. I'll keep you posted.

Reni


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