Contributors' Brief Histories

I was diagnosed with PMR in March, 2010. For three or four weeks prior to that I had been dealing with severe muscle and joint pain in my shoulders, arms, hips, quads and buttocks. The pain was so bad in the morning that I could hardly get out of bed. Then I couldn't shower or wash my hair until late in the afternoon when I had loosened up some. Even then I could only get one arm above my head — using the other arm to help lift the one arm. Dressing was difficult and had to give up wearing T-shirts.

Two months earlier I injured my right shoulder when lifting my mom from the seat of my car to a wheel chair. X-ray and MRI showed extreme tendinitis and bursitis in three areas of my RT shoulder – but no tear. I was doing physical therapy 3x per week as treatment of this when all of a sudden things started to get worse. It seemed that the tendinitis had spread to my other shoulder. This made no sense! Then I noticed pain in my hip joints when getting in and out of the car. One morning after struggling to get out of bed, I couldn't even reach the faucet to turn on the water to brush my teeth. I thought I was going crazy!!

My Physical therapist suggested I should see a Rheumatologist as she was pretty sure something else had to be going on. The following week I saw a Rheumy. After a pelvic X-ray [i:47f142bffa](showed normal) [/i:47f142bffa]and a physical exam, he said he needed to run some blood tests but was pretty sure I had PMR. He said I had classic symptoms for PMR. He suggested I start on 20mg pf Prednisone (10mg after breakfast and 10mg after dinner). He said if I started to feel better it would help confirm his diagnosis of PMR. In just 24 hours I felt about 30% better... after two days I was 50% better, and after one week of 20 mg per day I was at what I'd consider to be 80% better!

At my Dr's followup the next week, he said he was 98% confident in the PMR diagnosis. My blood work showed CRP high @ 6.4; ERC or Sed rate was 85 (showing inflammation). He also said the CBC (complete blood count) test showed I was borderline anemic. My TSH (Thyroid function) and RA (Rheumatoid factor) both showed normal (2.35 and 6 respectively).

I asked the Rheumy how long PMR usually lasts. He said between 6 mos. and 6 years. Yikes! If only it could have been 6 month. It' now 16 months and I'm on 9.5 mg still.

I was diagnosed in August 2008 at the age of 52, following dramatic weight loss and pain in my shoulders,arms legs and then total seizing up of all my muscles. Started on pred at 15 mgs and have been on a rollercoaster ever since!!!

I suffer from PMR, Osteoporosis,Pernicious Anemia, IBS, Underactive Thyroid, Anemia and Bursitis in my right hip.

Pat.

I was finally diagnosed just before xmas last year 2010, after many months of feeling really ill.

Have P.M.R.& G.C.A.

Was started on 50mg prednisolone, which helped enormously, no more headaches, blurry vision or loss of vision temporarily.

The P.M.R side of things still playing up, but not as bad since reaching 20mg.

Weak legs , achy back sometimes low near hips, sometimes higher just underneath shoulder blade to be accurate.

Have had bad mood swings, tears & generally very low & depressed on times.

swelling of ankles face neck etc.

Which as I lower my dose have been told this will disappear.

As I said things starting to improve, so hopefully getting there at last!

Good luck

Amycakes.

Very ill for three days in Spain in May 2009.

No problems then until August 2009 when I suddenly couldn't straighten up after getting out of the car.

Went to the Doctor's in September 2009 when shoulders seized up. Blood tests normal.

Woke up a few days later totally unable to lift my shoulders off the pillow. Dreadful pain. Couldn't move for several hours.

Doctor suspected PMR but bloods didn't support that diagnosis.

Was due to go on a cruise in three days!

So ill I phoned the Private Hospital, spoke to a Rheumy Consultant. She said 'forget the bloods' faxed a prescription for Prednisolone and used 15mgs as a diagnostic tool. Almost instant relief.

Went on my cruise!!

Months of weeping, confusion, intermitent pain and mild depression then - as though someone flicked a switch (May 2010) and I felt a lot better.

Got down to 2.5mgs (April 2011) until a family trauma caused huge stress, back up to 5mgs for a few months and now on my way back down, albeit slowly. Would say I've been luckier than most.

Lizzie Ellen

I was diagnosed last December as well (aged 55 at the time), but no raised bloods so rheumy still doubts I have PMR. Pain and stiffness suddenly much better after about 5 days on 10 mg pred.

The trouble is, after two good weeks, I began to feel really exhausted, shakey and weird. This got worse when the rheumy increased the dosage to 15 mg and I had to stop working as I couldn't concentrate or stand up for more than 10 mins. Dose reduced to 12.5 mg and I stopped getting worse but had 2 weeks of pain back in hips.

I also have a fat face, neck and body, painful teeth, acne, muscle cramps, jumping and tingling, backache in various places and shoulder pain (but no where near as bad as it was before pred).

The rheumy doesn't think it is all down to the pred but can't offer an explanation.

I also have autoimune thyroid disease and took a steady dose of thyroxine for over 20 years until all this started. My thyroxine levels have been too high, then too low and now within the normal range again.

I am trying to reduce the pred (hope I soon stop shaking and am less exhausted!) and am now alternating 8 & 9 mg.

Hard to think I will ever feel better and be able to do things again, but this website helps me believe I will.

Many thanks all. :lol:

Cathy G

Had PMR 3 years in September. April 2008 Had really bad chest infection which would not clear and felt really ill for aquite a long time. Went to Italy in June climbed Vasoovius (spelt wrong) two week later pains in thighs quite bad went to GP x ray said ok. thought it was the climb and would get better but did not. Pains increased into hips and shoulders and went back to gp who checked my bloods slightly raised esr but did not think it was anything. Pain depression and general feeling of being unwell con tinues until the September when could not lift my arms up to brush my hair shaky and depressed and in constant pain and was self medicating on diclofencic which helped slightly but upset my tummy. Friends kept saying you are probably depressed, I said yes I am depressed and worried because I feel so ill. Went back to GP ina state burst into tears and said could not cope with pain put me on 20mg steroid MIRACLE i felt so much better within twenty four hours after 2 weeks gp put me on 10mg where I have been on and off since. Last august got down to 3mg then had a relapse back to 7mg. This AUgust back to 3.5 and reducing very slowly. My journey sounds simple when I write it down but for the first 18 months I was really ill steroids gave me panic attacks, which I have never had before shaky legs fat face and never the same two days running. I have and still am working although now part time I help look after my 82 year old mum and my Grand children. I will be 61 in december and cannot see me being off steroids for probably another year if I am lucky. But I feel well now and if I never get any lower than 3.5 it does not matter. My GP is managing me and I have no complaints.

Linda

Just to correct I have been on steroids for almost 3 years PMR for longer until diagnosed.

My symptoms ( but only a lot of pain in my swollen left knee) started in early December 2009, following sitting on an aicraft for 10 hours. I was 70 years old at the time. Needless to say this was thought to be solely a knee problem and I was referred for X-rays and physiotherapy (which did not help at all). Then - later that month - I started getting bilateral pain in shoulders, upper arms, hips - the knee became excruciatingly painful and it all got worse and worse (you all know what it's like). The fact that it was Christmas and New Year surgery hours didn't help but when I then saw my GP on Jan 4th she immediately suspected PMR, arranged a blood test (ESR was 65) and within 1 day I was on 15mg of Prednisolone - which was like a miracle cure.

It was another 5 weeks before I was able to see a rheumatologist who confirmed the diagnosis and started me on a slow reduction programme. Somewhere along the line I realised I had problems with the sight in my left eye (loss of some colour vision and a reduced field of vision) but I felt that these eye problems had probably started before the PMR. Anyway - this resulted in a referral to a consultant opthalmologist /neurologist who did lots of tests (including a CTC scan) to try to ascertain the cause of the changes in vision. Nothing was found and so it was decided - by the opthalmologist and rheumy together - that it was too much of a coincidence for it not to have been caused by Temporal Arteritis - almost by default if you like.

I did have a 5 day period on 45 mg earlier when I had a persistent mild headache (but this did not respond to the higher dose and basically I also had a bad cold at that time). So I went back to 15 mg and the reduction programme.

This is going OK ( I am now on 5mg but so far haven't been able to get below that). My eyesight is no worse (though the partial loss of vision is permanent). It doesn't bother me - I can still read a number plate at however many yards with that eye!

The other tablets I take are calcium/Vit D and HRT (half dose). My bone scan was normal.

I realise I am very lucky compared with some of you and I have had excellent service from the NHS - don't let the government mess it up!

Sorry to have been a bit long winded, but the symptom frre Temporal Arteritis complicated matters.

Best wishes - Hilary.

Some people wake up one morning and find they are stricken with PMR. For me it was more gradual, developing over a period of about a year.

In early 2009, it started with my feet. I have had plantar fasciitis for many years, but it always responded quickly to proper orthotics, etc. This time it continued to be a problem and just seemed \"different\".

Next thing I knew, my lower legs were stiff . I tried to take a walk but my legs were not working right--so strange! I used to be able to walk all day, what was going on? By June 2009, I was having trouble getting into and out of my car--I had to hoist my left leg in after I was seated!

By July, my knees started to hurt. If I tried to shift sleeping positions in the night, my knees would lock and I would get an electrical shock wave in the inner leg area by the knee. If I tried to sit up in bed I would get the same electrical shock in my mid to lower back. I had pain in my right arm (bicep) that felt like a knife stabbing me.

All I did was go to doctors from Feb. to Dec. 2009. I went to a biomechanist specialist for the feet; a podiatrist; an osteopath; physical therapy (therapist told me it was MCL damage and tight back muscles); a chiropractor; a neurologist; a spinal orthopedist. No one could tell me what was wrong.

By January 2010 it was getting worse. If I even thought about getting out of bed during the night, my back and leg muscles would tighten up as if I was paralyzed. Ibuprofen put a slight dent in the pain but didn't help very much. If I stood up for too long, my legs would start to hurt and feel all compressed and cramped--even just half an hour after arising in the morning!

In January 2010, my primary care doctor recognized the leg symptoms--she sent me for blood tests and they came back with elevated SED rate and CRP, low hemoglobin, and I'd lost weight without trying (the one bright light in this whole mess!). My doctor diagnosed me with polymyalgia rheumatica on Jan. 22, 2010.

I started on 12.5 mg prednisone for 2 days, reduced to 10 mg after that. I noticed a difference overnight.

So now I've been on prednisone for a little over 18 months. I've tried methotrexate, but it didn't work. I've had one bad flare. I'm down to 6 mg pred, and I guess I am functioning. I have to take Nexium and Zantac because the pred has aggravated my GERD. It still takes hours for the prednisone to \"kick in\", so I am sore and stiff for awhile every day.

A month ago, I fell and bruised my left tibia--I have torn menisci and strained ligaments in my left knee; my kneecap was temporarily dislocated. This has complicated matters. I know it could be worse but I am even more tired now!

Hope I'm not boring you with details of \"the long and winding road\" to diagnosis, but I figure maybe someone else will recognize their symptoms! I know I saw my symptoms in other people's posts and it's reassuring. We're all in the same boat, too bad it's not a luxury cruise we'd all want to be on!

:lol:

Best wishes to everyone,

freesia

I forgot to mention, I was diagnosed at age 62, and I'm now 64.

freesia

Hi everyone Sparklin here.

I was diagnosed very quickly with PMR Nov 2010 a month before my 65th birthday.

I was so scared when I first got the the dreaded PMR and have to admit that sometimes now I still feel a little scared, but because of the forums and the great friends I have made I no longer feel so alone.

I started out on 15mg pred and am now on 7 1/2 meg.

As a result of PMR some friends have gone by the wayside, but sure that is the way it goes, you loose one and gain 10 online friends who are worth their weight in gold. :D

Hi Everyone--Im diane and Im 50 years old--my experience...at least 2 years ago I started getting electric shock pains in my feet and knees--but it only hurt when they were touched--not when walking.

Over time the aches and pains spread through my back,legs and more recently my arms,neck etc. Been to docs over past 2 years with no joy-except advice to lose weight etc.

Anyway past 2 months has been awful--sooooo stiff all the time,couldnt move in bed-when I did I woke my hubby, as I shouted with pain.I couldnt get up and down stairs/drive the car for the pain in my knees..nothing helped.

Went to docs 4 weeks ago she gave me some Naprosyn 500--within hours I developed Tinnitus-- which is still with me :cry:so stopped those--only took 4 tablets over 2 days.... went back and saw another doc who did blood tests which showed the inflamation markers were up so ruled out fibro which I thought it was maybe..

She said the tablet she would give me would work really quickly if it was poly as she thought (prednisolone 5ml) 20 ml a day. By this time everything bloody hurt--even my finger nails and hair!

Anyway-sure enough the tablets have worked really well -started them on the Saturday morning and bt NMonday I was shampooing the carpets!

And after just 10 days Im completly pain free..its like a miracle to be honest , the tinnitus is driving me up the wall now--imagine 6 whistling kettles ringing in your right ear and everything sounding like its under water in the left one and thats what its been like :cry: Dont know if its permanent or not but is a known side effect of the naprosyn and it can be. Fingers crossed it goes away.

Ive a few questions--is it inevitable that I will get the moon face that can happen with steroids--and is it true that it can burn itself out--havent had chance to read up on everyone here yet...Fressia's story rang a bell with me and the electric shock feelings!

Anyway--Ive gone on long enough--you seem a friendly ,knowledgeable lot on here and I will look forward to chatting with you all.

I have split dianetheartists questions at the end of the post above to a new thread which includes Mrs O's replies. It is at http://experience.patient.co.uk/discussion.php?t=45995

Emis Moderator.

I was diagnosed in April 2010 aged 58, started on 20 mg's per day,I saw my Doctor a few times in the early stages, then he said as my ESR had gone down to 4, it was high at beginning, the Doctor said I could get a repeat Prescription each Month.

I have a Programme to follow from the Rheumatologist which I have done, the Rheumatologist said that my Doctor could manage my PMR & I could go back to see him if I had any problems, the Rheumatologist told me to have a blood test every 8 Weeks, but my Doctor never leaves a blood test out for me when I order my repeat tabets, so after eight Months no blood test I asked the Surgery for a blood test, it came back as 4 again, then I asked for another blood test 3 Months later & that came back as 4 again, I still have pain in my upper arms and in the legs from tights to knee's underneath the bottom area, I have good & bad Day's some Day's are painful I seem to ache with the pain it does not go away, my Doctor told me last September a Year ago I have not seen him since, he as not asked to see me, that if the ESR is normal then I was & have to go down on the Programme.

I feel very let down, I have manged to get down to 2mg I am finding it very hard the lower I get, getting down to 7mgs was very hard, I feel very alone with this & scared when I get down to no mg's per day.

Annie V - hello and welcome but so sorry to hear it is your suffering that has brought you here. This thread where you've posted is only for a brief history so if you have any questions you can post under another heading and you'll get lots of welcome and replies. MrsO