Hello everyone. I've just been diagnosed 2 days ago and being just 48 I think I'm the baby of the group. I developed symptoms after a chest infection at Christmas. One of my sons asked me 'how did you get so old so fast' as I was hobbling to the kitchen one afternoon. I have always been very active, training gundogs, walking, sailing, Rugby mum, etc. So not being able to walk up the hill on a normal walking route was the final straw for me. It took several weeks and several blood tests to figure it out but after only 2 days of 20mg preds I can touch my toes again (almost). As last week I couldn't touch my knees I'm quite happy about that, I can do up my bra again and no headache!
I'm only just beginning my PMR experience but reading through some of the chats has really helped.
What's the thinking on seeing a Rheumatologist? I know I'm early days but all my GP has said is that we will have a phone consult after 10 days on the preds. Everything else I now know about PMR is what I researched myself, I only got the diagnosis from the GP. Should I ask for a referal? Any advice would be greatly received.
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Libra-girl
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If you have a good GP and there is no question of other possible diagnoses then I'd stay with them unless you develop problems. You are obviously in the UK (rugby at this time of year???) so you may have a long wait for a rheumy anyway. There are people who feel young patients should see a rheumy "just in case" but it sounds as if your GP has done plenty of bloods to rule out other options.
I was only 51 when PMR first appeared - not so much older than you. The GP wasn't as bright as yours though and it was 5 years before I got pred.
I had to wait 2 weeks to see the 'good' dr at my surgery. She is in high demand but worth the wait. As soon as I told her what had been going on she said it sounded like PMR but I was far to young but tested crp just in case. I must ask her what my result was she just said very high. I also have very low Vit D. I wonder if they are related? Doc thought not. I also have prescription vit D to get that back up to normal.
Low vit D is common in most autoimmune disorders but it isn't clear if it is cause or effect. A study in Finland found that giving newborns vit D supplements reduced the later incidence of Type 1 diabetes being diagnosed in their teens - which suggests it could well be implicated. Very low vit D levels can cause very PMR-like pains which resolve as the vit D level is brought back to adequate levels.
Yes - I saw the "wrong" doctor, lovely though he is as a person he could be a bit dim! The PMR-lady was only part-time and had been on maty leave repeatedly so I had never bothered!
You mention headache? Any other GCA-type problems?
No, just really strong dull ache. no jaw pain or vision problems. I do get the odd migraine but these were quite different. Like I was wearing a much too small hat. I put it down to the neck and back pain, like a tension headache.
I’m overseen by my lovely GP. My only 3 appointments with a rheummy were awful so I stopped seeing her. I’ll continue with my GP unless I develop GCA symptoms or am not able to lower/taper my pred dose (both of which my GP said warrants a visit to a rheumatologist as it is out of his wheelhouse).
Welcome, and hope you get on ok. I find the forum very helpful especially in the early months.
OH was more or less driven to see GP having all the classic symptoms which made her suspect PMR/GCA and she sent of bloods; result was that the next day he was told to drive to the Rapid Assessment Unit as fast as he could without breaking the speed limit.
Discharged 2.5 days later with diagnosis, preds , appt for biopsy in a week and instructions to follow up in 3-4 weeks.
Unfortunately Rheumatologist had a fatal accident and there was no follow-up.
GP, therefore, has been monitoring Preds for 7 months following a fairly common course.
I've been on pred for 2 years, clinical diagnosis by my GP, now retired. New GP is letting me manage my reduction. I have a telephone appointment after every 2 reductions, takes 4 weeks to get a good appointment. He refered me to a Rheumatologist before Christmas and ams still waiting!
Coming here I discovers much better tapers and have been using them and ever since.
Wow. I’m in the US and I just saw this. I was just diagnosed PMR/GCA by my GP after my second response to a Pred taper. I’m 44, took 4 years and 2 months to get someone to really look at what was happening to me. I’m sorry for your recent diagnosis seeing this just makes me wonder when the rheumatologists are going to realize >50 years old is not justifiable criteria to dismiss a diagnosis. Hope your able to get all the answers you need soon and are feeling better.
You win the ‘you’re too young to have pmr’ race. Not that it’s a race anyone wants to win.😉
How did you cope for 4 years? Glad you finally got treatment. I think it really helped the fact that I have known my gp for almost 20 years. A lot to be said for a good relationship with your doctor.
Yes, no winners here. It's just re-affirming whenever I hear a story about someone under 50. It was a huge roadblock for me. Your GP relationship will help you so much. It was part of the problem for me, remote area and docs that don't stick around. I have a really good one now and I'm doing well. It was not easy, I was homebound for the last year, dependent on my boyfriend and constantly trying to get anyone to listen to what was happening to me. It's ok now though, I'm better and getting little bits of life back. Best wishes with everything
That sounds terrible for you. I've actually had it fairly easy so far. Still very early days for me but at least I was taken seriously and given an answer quickly. I can't imagine suffering for that long. Each day brings its new challenges. You are very lucky to have the support of your boyfriend.
Unbelievable, that is an exact example of why this site is so meaningful and important. We have to be our own advocates in todays healthcare system wherever we are. It seems to be a trend that the rheumatologists should be the most informed yet are often the least informed. I hope you are being treated now and doing better.
Hi, diagnosed in December, in depth conversation at beginning by telephone with my usual doctor after initially being seen and diagnosed by young registrar. Only one follow up appointment since again with registrar who just dismissed me off with good the steroids are working carry on your life as normal and follow the plan taper your doctor gave you. If it wasn't for this group and Kate's book I would still be clueless about this strange ailment of ours. Currently on 10mg and fingers crossed coped so far with gradual taper. The overwhelming fatigue has been main problem. This week have felt more human...sunshine effect maybe? Good luck, shame so young for it to strike I am 60 and hated how I suddenly felt decrepit!
Rotten luck to get this so young but every hope for remission, and thank goodness you responded to Pred. You’ll have clocked the necessity of pacing, even if you feel better, and that the Pred deals with symptoms only while the inflammation continues behind the scenes. As you are young and active you may be tempted to push yourself too far! I suppose my view about a rheumatologist is that it depends on how good he/she is. As specialists they are often at the cutting edge of knowledge about new therapies and drugs which can be useful. Why don’t you see how it goes as you are happy with your GP and ask for a referral if your condition becomes more complex? Either way good luck and enjoy this friendly Forum. 😀
Welcome Libra-girl,you certainly are younger than most of us here,l cannot add much to the previous posts,except to say that my GP has managed my PMR which l have had since June 2016.There are always those here who will give you help and good advice when needed,you are not alone x.
Nope. 46years young !!!!going on 2 years in June !! Down to 2mil. Some days 2 1/5. Trying veggie life style and no sugar. Expect wine. Not giving that up 🍷 I have learned more on this site then the 12 doctors I have seeN Good luck
You were 44 when it started? I was just diagnosed PMR/ GCA at 44, I have been sick for over two years now but it really went down hill August 2018. Did you have the elevated CRP or ESR? I went whole food plant based vegan over a year ago to help also. Your story sounds a lot like mine I lost count of doctors but finally have a wonderful GP. Are you in US?
Hi there! Another Baby here! I’m 52 (51 when diagnosed) . And diagnosed is a stretch because my Rheumatologist is not 100% sure PMR is what I have. I have elevated C protein and ESR. Both criteria for diagnosis. And, like you, basically all I know is from my own research. You should definitely see a Rheumatologist, since there’s actual inflammation in your body and that is something that could lead to other problems. Wishing all the best! 🌹
My wife began the symptoms in January, 2016. Her GP tried various pain meds, then referred her to her orthopedic surgeon, who did xrays and an MRI and gave her cortisone injections, all to no avail. In April, between the ortho and GP they had her do lab work for ESR and CRP, and they concluded that she might have PMR. She was referred to a Rheumy. He turned out to be a nightmare. Once he started her on 15mg, he was more interested in having her taper to almost nothing within7 months just because the markers looked a lot better.
It took me a close to 2 years to get to 2 mil. I still hAve stiffness in the am. I tried actemra 162 mil once shot a week. I stop myself after reading the side affects and I felt no difference the rummy was not happy. But it’s my body !! I have anemia. Which is a side affect from Pmr. But I don’t hear many people talking about it. It’s a crazy journey hope mine burns out. Just went veggie 5 days ago. Will see
I struggled with my GP for a year and a half and finally managed to see a Rheumatologist. I think it just depends on the person, I have been on a roller coaster with prednisone for almost two years now, my Rheumatologist has me dropping one milligram of prednisone a month, I'm now on 9 mgs. Wish me luck. I am 85 years old and feel that stress brought this on.
I would definitely see a Rheumatologist. He/she is the expert, and I want the best to monitor my health. I see a Rheumatologist every 3 months and my gerontologist every 4-6 months. Also, have eye checks for TCA. I was diagnosed PMR, then a few months later with GCA. Afterward a couple of months, I was diagnosed with Fibromyalgia. Hopefully, that will not be your journey, but the Rheumatologist has been vital in diagnosing these other diseases.
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I lost count of doctors but finally have a wonderful GP. Are you in US? 
does PMR eventually go away
The Lighter Side of PMR - Feeling strangely GOOD.. urgent advice please?! ;-)
I'm new here... this much I know, PMR under 50 is not the norm but NOT impossible!
