TO YOUNG FOR PMR

[snoopy29]

had my first rhumatology app today with mixed results, I do not have RA as my joints in my hands etc are ok and although i show all the signs for pmr I am too young but he has called it inflamatory arthritis and has given me a steroid injection which should last for 3-6 months and is going to start me on methotrexate once i have had a xray of my lungs , so still feel a bit in limbo but its a start.

[PMRpro Ambassador]

Well he is wrong - you are not too young for PMR. No-one told PMR that it has to wait for your 50th birthday to turn up to play and anyway - NICE agrees with the patients that there are plenty of patients these days in their 40s. Quite how anyone can classify potential PMR as being inflammatory arthritis is beyond me since PMR is due to a vasculitis that affects muscles and soft tissues around the joints while inflammatory arthritis affects the joints themselves. When something looks like a duck, quacks like a duck and walks like PMR it most likely is PMR As I said before - they can present looking very similar and it isn't easy to tell them apart but he did say it looks like PMR, if his only criterion is age that is a bit weak.

The steroid injection MAY work anyway as it is possible to manage PMR using depotmedrone injections - but they sure as eggs is eggs don't last for 3-6 months in PMR and I would be surprised if they work that long in inflammatory arthritis. So I suppose we have to wait and see.

[snoopy29 in reply to PMRpro]

its so disappointing when you wait for months to be seen, so time will tell , big needle as well

[tangocharlie in reply to PMRpro]

In my experience, if it's depo medrone injection it will last for about a month to 6 weeks, max. Though my previous rhematologist must have had the same dream as yours as he said 6 months too. If you're a rheumatologist you don't need to look up facts, just make it up as you go along. I had the same battle with another idiot rheumatologist who said I was too young to get PMR at 51.

[Jackoh in reply to tangocharlie]

😘😘x

[snoopy29 in reply to tangocharlie]

Hi yes it was depo medrone unfortunately but now that I know it may not last that length of time hopefully my gp may prescribed more or something else 🤞 can you be on prednisone and methotrexate at the same time ?

[PMRpro Ambassador in reply to snoopy29]

In PMR one is generally on methotrexate to try to reduce the dose of pred so you would always take both together.

[snoopy29 in reply to PMRpro]

thank you

[tangocharlie in reply to snoopy29]

It's a wonderful option, I much prefer the injections to the oral Pred as much fewer side efects and I have so much more energyand stamina. But my rheumatologist wrongly said they last 6 months which caused me major problems, whereas the the manufacturers leaflet that comes with it says an average of 2 weeks and my own experience was about 6 weeks max for the first one. I wrote a long detailed post on Depo-medrone injections recently where you will find links to all the research. I now have injections every 3-4 weeks and they're great. If you go to my profile and search posts you will find it

[snoopy29 in reply to tangocharlie]

Thank you I will do 🙂

[PMRpro Ambassador in reply to tangocharlie]

Have things settled down again?

[tangocharlie in reply to PMRpro]

Not sure tbh, thanks for asking. I asked if we could start again from the beginning as per Dasgupta schedule and have them every 3 weeks for the first 2 then go on to 4 week intervals. I've just had a booster after 3 weeks and it is definitely better than waiting 4 weeks so far. I've been able to walk a lot more and the chest pains and swollen feet and ankles have gone. But this time last year, before all the messing around with longer intervals between injections and being forced to reduce the dose, I was really fantasically active and agile, yomping and yodelling around Austria. Getting the dose wrong for a few months really mucked things up somehow, it's like the inflammation accumulated and now the injections aren't quite enough to shift it anymore, if that's possible. The doctors are labelling me steroid dependent, a bit like the theory of pain-killers or heroin I guess of your body needing more and more. I dispute that. The other option I've been offered is Kenalog injections but I'm a bit nervous to try anything new as I have reactions to all sorts of meds. We'll see what next month brings.

[Hidden]

Rejoice! One off the list. I really appreciate your post as it confirms my thoughts that many of us have symptoms which are very similar but have slightly different causes.

I suffer(ed) with a further autoimmune response knows as Reiters syndrome, started 1973, diagnosed 1979. Some very similar symptoms to GCA and as I had acute iritis, I was treated with prednisilone - little is known about it other than the treatment hasn’t really moved on. I have not had an acute episode since 1979, but have had a couple of flairs. Having been diagnosed now with a second, possibly unrelated auto-immune condition has made me think “are they connected”. My consultant does not think so.

For what it is worth, I think that these diseases are so complex, they are generated by us as individuals and on that basis, it is why the health professionals are sometimes confused. You are in the system, you are recognised as “unwell” and I suspect that your treatments will follow similar pathways to ours.

Keep positive. Be reassured. You are definitely not alone.

[snoopy29 in reply to Hidden]

Thanks for that , yes like you say i am unwell and they will hopefully between the gp and the hospital get me on the correct track , i will keep positive (maybe hard at 3 in the morning when i cant turn over ) and its a great place to be when you have this for getting information, he threw that much info at me i was dizzy, take care

[Hidden in reply to snoopy29]

Likewise and if you are not on high doses of prednisilone, take comfort in the fact that in my case it is manifesting a significant side effect of insomnia! Just glad to be alive, relatively pain free and not alone.

[PMRpro Ambassador in reply to Hidden]

Reiter's is now called reactive arthritis and it is usually a reaction to an infections somewhere in the body but not the areas affected. It is thought to be autoimmune - so although that may have resolved at some point, your immune system remains predisposed to developing something else if kicked. Once you have one autoimmune disorder, you are more likely to collect another than someone who doesn't. I'd think of it as having Theoldch syndrome - your own personalised a/i disorder

[Hidden in reply to PMRpro]

Appropriately so! I have alluded before to the fact that we seem to present the same but there the similarity ends - all I know is that I am not as well as I mainly feel. Long journey to recovery, but feeling treated and latterly supported. Perhaps I will change the ringtone me my phone to Michael Jackson’s - Not alone 😀

[Hidden]

Hi, since first being diagnosed at just before my 22nd birthday, I was a mystery to my doctors. I was a Corporal in the Army, mainly extremely fit and was struck down, initially with skeletal pain, but ultimately with a severe iritis, which threatened my sight. Both topical and systemic steroids, a period of rest and I resumed my career and rose through the ranks etc etc etc.

Whilst having worked in health and having an interest in my own wellbeing, I rarely investigate further than the first 10 lines of Wikipedia unless I have to. Your response is very informative, but as someone. who has not had any symptoms (my left eye is my sentinel) since 2001, I have ignored it.I do have osteoarthritis in both knees, but years of training carrying loads and after leaving the Army comes as no surprise. I continued an extremely vigorous training regime as I enjoy it, up until 4 weeks ago.

On that basis, I discounted my pain over a long period as ageing, over exercising and stoicism. I would rise from bed like an old man, but in 10 minutes would be dressed, out with our dog and then back home to train. In that I might be a bit stiff rising from the table after a meal, but as the condition seemed to be slow and incremental, I simply was oblivious to the decline. Ultimately, I may have had a number of precursory warnings, but the end result was a sudden and acute episode of GCA, for which I am grateful for being treated.

On that particular issue, I really do appreciate the time that you have taken to enlighten me. Ultimately my declaration when asked what is wrong with me is “I am ill”! The more that I read here, the more diverse these groupings with similar symptoms appear. It is in that regard I feel for us sufferers and keep my sympathy for the clinicians, many of whom must scratch their heads and secretly wish they knew.

[Hidden]

Stand still the front rank! More in common. Thankfully i have been well for a long time.

[Duddy999]

I feel your pain. ( no pun intended). I was 43 when my PMR started. It took numerous appointments and rhumys before i was finally told yes it was infact PMR. This was after being told by one very unpleasant consultant, to go home and start Yoga or Pilates as i was very stiff! I hadnt even sat down in the consultation room, before she proclaimed you havent got PMR, your too young.

After many appointments I eventually met a lovely Dr who took the time to listen, read my notes and examined me. He concluded that yes it was PMR.

Since then 2 more consultants, 2 more opinions. The last appointment was like deja vue. "Your too young" I actually knew more about PMR than she did, thanks to being on here.

Keep positive, if you get any relief from the injection, push for pred.

Good Luck!

[snoopy29 in reply to Duddy999]

Thank you , well I actually slept well last night and found it easier to move around in bed so that's a start , here's to the start of an interesting journey , hope you are better now 🙂

[Hidden]

I was originally told the same that I was too young, they went done the route of AS but none of the medication. worked.. finally went back to PMR and now on prednisolone which is reducing the pain levels

[snoopy29 in reply to Hidden]

Maybe I should show the rheumatologist all the replies on here, they really should all be better informed in this day , glad your getting relief now 🙂

[PMRpro Ambassador in reply to Hidden]

The second rheumy wanted mine to be AS when he couldn't pin psoriatic arthritis on me. When everybit of imaging and tests he did ruled things out he came up with another idea. PMR never figured despite a miraculous response to 15mg in under 6 hours. He just didn't want to hear ...

[Hidden in reply to PMRpro]

Sounds very similar to me.. the GP suggested PMR ... the first Rhuemy pushed AS.... the second followed their lead but nothing he prescribed worked.. then went back to PMR because Pred worked in the past. Funny that MRI and blood tests showed no signs of any real inflammation though!

[PMRpro Ambassador in reply to Hidden]

My markers were never out of normal range - but they were raised for me. Don't think MRI shows much with PMR unless there are "hot spots" in the muscle fascia but that isn't what they are looking for so probably don't notice them.

[Hidden]

65 and otherwise very well. The only other part of our jigsaw that would establish how closely we align, is whether you have any Northern or Eastern European heritage? My father is Polish and some limited (first 10 lines) reading indicates that conditions like ours are more prevalent in people from Northern/Eastern Europe.

[Hidden]

Similar genetic makeup apart from the obvious father. I will pm when I get a minute as the scenario of the enteric condition are remarkably similar to what I encountered as a young soldier, however, I was treated inappropriately for another condition which I definitely didn’t have. A mystery, but one too sensitive to share in the domain. Shock and awe if I did!

Really pleased to have made a link with you.

[Dcctrains]

Dear Snoopy, although I started with PMR when I was 50 (I am now 70), my Rheumy was adamant that it could only be PMR and not RA or any other nasty. He made sure by doing extensive tests before concluding that it was PMR. I objected to the diagnosis, because I was only 50. He assured me that age did not come into the equation, it can even occur in children, although more usually seen later in life. Depomedrone injections don’t appear to last more than 6 weeks and I have to back this up with Prednisolone Tablets, to extend the suppression of PMR to 3 months.

I would like to hear how you get on, but I would be ready to challenge your GP.

[snoopy29]

thank you for the information, it seems it can be a battle when it shouldnt be, you are already dealing with your own daily battle just living without this going on as well, my next gp app is via telephone and i am not good with conflict but may be ok doing it when its not face to face, although my gp initially thought it was all muscular and prescribed me paracetamol

[Amkoffee]

It's cases like yours that make me feel so lucky that I was diagnosed the first time I saw my PCP. But my PMR was classic. I was over 50 and both of my inflammation markers were elevated.