I had some painful swelling in my foot behind the toes for about 2 weeks and then it faded away. I saw the specialist rheumatoid nurse today and as she was checking me over, she spotted the remains of the swelling and thinks that I might have rheumatoid arthritis as well as PMR. Has anyone else got both?
She also told me that the rheumatologist had left and there is no sign of a replacement!
It can happen. It wouldn’t have been my first conclusion with your foot though. My husband’s Morton’s Neuroma sounds similar. I would be on the hunt for a Rheumatologist.
I was surprised to say the least. She was basing it on the fact that I tend to have stiffness in my left knee and right wrist in the mornings. I had thought that was to do with the PMR.
"I would be on the hunt for a Rheumatologist."
What calibre of gun would you recommend? 👍👍👍
Not one that you jump certainly. See PMRPro’s post.
You just made me chortle 😃😃😃😃😃
Typical - but I really think that saying it is RA from a single problem is rather jumping the gun ...
Just hoping she’s wrong. Had a look at a rheumatoid arthritis site when I got home and didn’t think it was that! Don’t get stressed she said!! Huh!!🤬
One criterion (I think) is a number of joints must be affected. Not just one bit of your foot. Though I suppose it has to start somewhere ...
But there is no point worrying until there is something concrete to worry about.
One of the things is that there need to be symptoms on both sides of the body, both hands or both knees, so am just hoping she’s wrong. Will just have to wait and see I suppose. But you’re quite right, no point in worrying for the sake of it.
Morning Mayzeyq, I have swelling and pain right across the joints below my toes on my right foot but this is part of my OA. As far as I know I've never had an RF blood test.
Do you have that all the time Bcol or does it come and go? I feel such an old crock!
Hi, Yup all the time. I've already had bones/joints screwed/fused together on my left foot.. I get extra wide fitting shoes to accommodate the increased width and instep. It doesn't really impact too much on what I do, just part of my managing the OA.
On her standard, I have RA! I stubbed my little toe ages ago - and it takes very little to wake it up and make the adjacent metatarsals very uncomfortable if I walk on it too much. Driving me nuts at present!!!
Ouch poor you. And to think I took my feet or granted, just want to go for a really long walk!
Thats exactly right ,it is on mine !
Thanks for the info Dad2Cue. The only thing keeping me sane is knowing others are in the same boat and in many cases worse off than me.
For me...that is the blessing of this forum....never alone and tons of caring people, smart ones too. Way to go, Mazeyq~!! 💖
I have always been told that RF doesn't have to be +ve in RA - patients without have seronegative RA
"Rheumatoid factor (RF) is used in the diagnosis of rheumatoid arthritis (RA). RF results are positive in approximately 75% of patients with RA, although RF is not etiologically related to RA. High RF titers indicate a poorer prognosis, as patients with higher RF levels tend to have more severe disease"
Yes-ish! Ve had my first ‘episode’ of inflammatory arthritis, but my osteoarthritis in hands & feet have got a lot worse. I’ve been told that pred masks arthritis, as it does help the condition somewhat, which is why as I reduce the pred my arthritis gets worse (is more obvious)! My toes are particularly bad this feet...I nipped (LOL) to the toilet at 5am, but when I laid down again, they throbbed for hours. Just one of life’s little joys! I know have hospital custom built orthotics for my shoes & limitations on what footwear to use, & thumb splints (& full wrist night splints, but that’s mainly for the carpal tunnel syndrome that started as well)! I have exercises for the hands & another hospital visit next Monday. You’re not alone! Keep on keeping on! S x
Thanks for your encouragement Pixix. Don’t know what I’d do without you guys. I can’t manage to talk to friends about it unless it’s so obvious I can’t avoid it!
I understand...it’s hard! Since my diagnosis we have kept the news of PMR & arthritis from my widowed elderly Aunty who would worry about me needlessly! As I have fibromyalgia & lung weaknesses she thought I would be classed as very vulnerable anyway, so that’s been easy. You know, sometimes it’s easier not to tell everybody, I find, otherwise they seem to say ‘oh,you look well’, when you’re feeling dreadful, or ‘how are you’ on a day you really don’t have the energy to explain!! Hugs, Sx
You’ve got it spot on! Thankyou x
I have RA plus problems with my spine, RA is just not just normally in one joint ,its in different parts of your body. PMR on top of all the rest is very hard to cope with . Hope it eases soon.
Thanks Viv54. I really hope she was wrong but I don’t have as much to cope with as you do. All the best x
I have beeb diagnosed with Rheumatoid Arthritis, ,Osteoarthritis as well as PMR
Oh yikes! Poor you, how do you cope with all that?
Good grief. The wonders of that to look forward to. Here's me thinking GCA and PMR are quite enough with a life on blood thinners. Sorry to hear this. I guess you'll find your way with help here. It's reassuring to have somewhere to let off our frustration when it gets too much.
But is there an effective treatment for PMR and RA??
Depends on the underlying cause of the inflammation - there is a range of biologics but they are very specific in their biochemical effect. If they are able to match the drug to your RA, it can be well managed. One potential mechanism involves an inflammatory substance called IL-6 - and that is the one that underlies PMR. If your RA is also the same mechanism then that single biologic, tocilizumab/Actemra will deal with both. Otherwise you may be lucky enough that there is a DMARD that works for your RA (methotrexate, leflunomide etc) when the IL-6 antagonist doesn't but it is available to use for PMR (not the case in the UK). You can't use 2 biologics at the same time.
That's interesting - I was not aware of any of that. I am in U K 🙄
Hi PMR pro … u are so helpful and so knowledgeable on this ! Got off the phone with my dr and heHad said last 2 appointments I should get on methotrexate so I can get off the pred … I was at 10 prednisone and going down by 1 every 3 weeks … and I as on 25 about 3 month ago … I have been on per for 10 months now … and it has never had cured me .. so the dr is not sure it’s PMR and said today probably inflammatory arthritis and not leaning on PMR … my crp is 25% over and the esr and ra are fine … it’s been really tough cause my pain in my neck shoulders and all me back and chest and a constant for 1 year now .. constant … it’s kept at Bay but it’s always that’s level 7 pain all the time … but I still try to workout out very lightly
And ride my bike every day Pretty week .. it’s Killing me this constant pain…. No problem sleeping for the most part .. but if I try to lay down on my back on the floor just to see how the muscles are doing I can hardly do that … i squirm on the floor trying to massage my back but it does nothing really but give me pain… if I cough or take a deep breath or sneeze it’s hurts my centre off my chest so much … as I take a deep breath I feel it in my upper back
As well Lots of pain … as I read my elbows on this surface typing the pain
Is deadly … if i shift my shoulders backwards and straighten up it leave my arms at my side I can’t never do that without pain.. .. I’m
60 years old perfect weight and in shape but this pain is so bad and constant …it’s getting very hard to handle … so the dr thinking I should go with merhytex so I can taper off pred I’m not sure I don’t want to take extra drugs and more side affects … I have been a very regular drinker over the year
… regular 4 drinks after high pressure daily job but I don’t get wasted … I’m a social drinker … never abuse it in r does it change my mood to the negative… just some beer and wine to chill but don’t know if this has caused all this or not
Letting me heal … I stop for 30
Days and do paleo diet and supplements and new things … but it does not change things one bit .. .. just had my bone density report Come
Back today and I was surprised the dr said the test shows minor risk for low back and hip issues re the test … sorry to bug you but I’m hoping u help me PMRpro…. Sincerely, Nick
, Toronto …
Just a suggestion but why don’t you post this as a new thread? I think you’d get the help you need that way. Putting it into this post means a lot of people who could help won’t see it. Good luck x
"I have been on per for 10 months now … and it has never had cured me .. so the dr is not sure it’s PMR"
If I understand you rightly - someone doesn't understand what pred does: pred doesn't cure PMR, it only manages the inflammation. You need enough pred to do that - so how did you do with the original starting dose? That is crucial to understanding what's going on.
However - being on pred doesn't mean you can go back to normal activity. The pred mops up the inflammation caused by an underlying autoimmune disorder and THAT continues unabated until it burns out and goes into remission, attacking the muscles and soft tissues around the joints and making them intolerant of acute exercise. That means they are unable totolerate the same level of exercise you did pre-PMR and that must be managed by pacing, in the same way as fatigue in a/i disease must be managed. You are NOT "in shape" - I trust you reduce your exercise when you have flu - or would do so if you did get it? Even professional athletes do that and it is actually detrimental to exercise when sick. Having an a/i disorder is like having permanent flu.
What you describe sounds very likely to be myofascial pain syndrome affecting all your back muscles, making them tight and hard and painful when touched. You probably need to moderate your exercise routine and get some physio and/or therapeutic/sports massage to release the spasms in the muscles. Until that is done, they will continue to protest and spasm to try to protect themselves from further injury. I recognise what you describe - when mine is managed with non-pharmaceutical treatment approaches, I need less oral pred.
Your alcohol intake is also high by current advice - not saying that less would solve your problems but it probably isn't helping since alcohol reduces the production of anti-inflammatory substances in the body and ethanol actually triggers an inflammatory response in the body. Alcoholic drinks also contain a lot of sugar - and carbs, especially sugars, also contribute to inflammation. Do you also eat a lot of carbs?
Hey pro thanks for your reply right away but here at work I'm pretty busy doing mortgages getting stressed out by my clients takes me a while to get back sometimes.Back in the day when this struck me I went to every kind of massage you can think of acupuncture physiotherapist chiropractors everything ...it would not affect or help my muscle pain in anyway it doesn't really feel like a tightness or do I get spasms. its more of a stiffness and a feeing more like a sore bruising type of feeling ...to press on my upper body muscles / shoulders near clavicles / my upper and mid back ...especially my chest area even if I cough or sneeze, it kills me in the chest so my rheumatologist is really pushing to get on Methlytrexate but I'm very hesitant ..not sure and worried about the Side effects. I have had no side effects really from the pred though...I was on 20 mg down to 10 and now eight ..I find the last couple drops of Pred has been more painful ...the doctor the other day indicated he feels I have zero negative rheumatoid arthritis and my CRP is about 16 instead of being 8 and my ESR is fine. I just had a bone mineral density done came back low risk for issues with low back and medium risk with density issues in the hips.... I am not overweight and I do consume decent calcium I wondered if the Pred has reduced my bone density in the last 10 months ,not sure...I don't have any bone pain. I Have had every test scan xray a person can get,
It is very difficult time very difficult to lay on my back on a hard surface and move my arms above my shoulders , its difficult to move my neck and my head left or right without feeling restricted and fell pain...and if I sneeze or cough I get a lot of muscle pain in my chest and the reverse side of my back- the same feelings if I take a deep breath. .... So I'm not sure if I should go to the Methytrexate.. I've been on the Pred for 10 months now ....my diet is decent maybe 7.5 overall... I don't eat a ton of carbs I do eat sugar . I have a hiatus hernia and Raynoids very cold hands at all time.
So does this sound like these conditions would be closer to PMR or closer to zero negative rheumatoid arthritis ?...I have this muscle pain mainly on the all the upper body 24/7.... definitely gets better through the day as the Pred kicks in....I would say an eight out of 10 in the morning in about 6 out of 10 every other hour of the day ..IS this how these conditions are supposed to feel.... Everything I read about rheumatoid arthritis indicates it's joint related where I find my joints overall are OK it's more the muscles around my body in the main areas of my body /back /shoulders /neck /chest and a bit in the hips and my forearms have always been sore and tight for many years I think from working on the computer . Any suggestions or help me much appreciated Thanks ..Nick
What you describe sounds very like I was with unmanaged PMR - and I, too, had no joint pain as such, just stiff joints.
Why does the rheumy think it is sero-negative RA rather than PMR? How did you drop from 20 to 10? And did you then go directly from 10 to 8mg?
PMRpro... Thank you again for your quick attention as always I appreciate your feedback and knowledge in this field. I'm not sure why he thinks why he thinks its sero negative or a maybe because the prednisone never really took care of the issues it just helped a little bit .I was at 10 then down to nine for three weeks and now eight for three weeks and then in a couple weeks I have to talk to the Rheumatologist The rheumatologist has always felt it's not exactly PMR and then just last week came out and said he feels it's the zero negative, I wish I knew exactly what this is.... this started about a year ago...Are you in total pain all the time like me and your major muscles?
You started at 15mg - that may well never have been enough. Yes, you get a dramatic response in most cases with PMR but ONLY if that was enough and while 15mg was claimed to be enough the last lot of recommendations say the lowest effective dose in the range 12.5-25mg. The lower doses may well be enough for smaller patients, especially women, but 15mg is quite low. And I get the impression you have tried to continue to be pretty active?
In my opinion, he should have tried 20mg after the 50% improvement - not immediately reduced the dose to do his other tests. And while I see why he did it - he was playing with fire. As we said before many people who start on pred and then are allowed to flare find getting things under control harder. And there was no need at all to take 2 months to get off the pred, had he got on with things it could have been done much faster from 2 weeks of 15mg, in fact you could have just stopped.
The rheumy I saw did something similar and within 6 hours of 15mg I had a minor miracle, within 6 hours of missing the first 5mg dose I was worse than before. And it was a major struggle to get things under control then and I have struggled ever since.
The Keele group have identified a few different responses to pred - and they consider some who are slow to respond are still PMR, just a different sort.
Thanks-- so you can go from 15 to zero pretty quick-- interesting- i didnt know that- I was most comfortable at 25 but still can get by in 10 - so all the spooky stuff I hear about Pred I feel I should go as low as possible and still function and suffer a bit..but maybe thats not the way to look at it. So its so important to get it correct right off the hop I see. What is the Keele Group?
There is a research group in Keele UK who do population studies using medical record data. Interesting mixture of members - medical professors down to GPs and statisticians of course.
My daughter gets pred for asthma/chest infections and it can be 7-10 days of 40mg and stop. You haven't been on it long enough for adrenal supression to be severe.
Yes, go as low as possible but not if you are going to suffer. That shows there is some inflammation left over and if you leave it it will mount up, like a dripping tap will eventually fill a bucket however slowly it drips. And you might be back where you started.
If you were good at 25, then you should have been kept there for up to a month and then started the process of tapering the dose, also called titration, to find the lowest dose that works for you to give the same result as the starting dose did. It will be higher in the early stages and over time will fall. Everyone is different in every way so there is no fixed dose that works for everyone but too many doctors don't realise that. They ignore the bit in the recommendations that the tapering schedule should be adjusted for the individual patient - they just bash on regardless!
PMRpro-- I see why you are called that-- you explain things so well and very thorough--no Rheumy would ever do that..thanks again-- so what do I do go back to him and say- get be back up to 25mg-- and typically just since I increased my pred back to 25 ( 3 x *mg im on now) doe not increase all the problems I can get from pred...so maybe just a slight increase of complications-- I really don't want to go on Methyl and i'm in pain all day everyday....my Dr is discouraging pre cause he thinks its not PMR- but I think it is.
Do you know what the lowest dose is where you feel as good as at 25mg? That is something of an indicator because typically a PMR diagnosis for someone is made when the controlling dose is 15-20mg AT THE START. Patients who need more and/or then struggle to get to a lower dose must be investigated for other possible diagnoses. Sometimes it is the case, sometimes the patient is just an outlier. But a typical approach is methotrexate - if it isn't PMR, they assume it will be an inflammatory arthritis that is presenting with polymyalgic symptoms and methotrexate is the gold standard for several types of inflammatory arthritis. And it is difficult for experts to tell the difference - never mind us.
nickmits, everything PMRpro says follow and give us info on dosing and regime so far. Read my story sometime. I totally understand BUT you need to STOP. Take it from me until you do and review the situation you won't progress past pain. It may not be just PMR. Try a hot shower 2-3 times a day first thing and last thing. Helps relieve muscle tension.
okay nickmits..just been back and seen your profile 5 months ago when you gave all the detail and PMRpro responded. Before I joined here and was diagnosed. It looks to me that your brokering is too stressful and if one thing more than any other exacerbates this disease it's stress. Without your health you have nothing. It's the realisation of that which helps make the shift. Everything else is secondary. You are at the cusp and you need to listen to your body. You are not in good shape, you were. We are with you on this journey.
Hi yes PMR pro is very helpful don't think I can stop working at 61 and I've tried every type of heat modality Physio Chiro massage,acupuncture supplements...nothing helps. I need to keep moving and being active too...
Okay. I hear you and understand. I don't know your situation. PM me on chat and we'll talk it over if you like. Meantime I'll say this. You are at the point I was2 months before CRUNCH it sounds from your post. You WANT to stay active and keep moving. We all do/did. I can promise you this if you continue to push through this like we all did you may hurt in a way that you really don't wish to experience. You know your body and are used to managing pain but it is destructive. Be careful. Good luck
Yes, PMR for two years and then my left hand became very sore and swollen and GP says rheumatoid arthritis, going to change to keto diet as that is suppose to help greatly with inflammation
Don't get your hopes up - plenty of us here who have been very close to keto and hasn't got rid of anything. Though I think that some of us would say we've lived better in general on it than if we'd eaten more carbs. Lots of people find they feel very rough if they eat more carbs than usual.
OMG! I wish I felt rough when I ate more carbs than usual. I find I just want more. I love em all and so hard to stay off.
It is easiest to almost stop carbs - that also stops the craving for the sugar rush ...
Just been eating too many beautiful yellow plums. That’s bad too I know but at least it’s only a once a year pig out🐷
The fewer you have, the less you want them! If you substitute 'healthy' things , like walnuts, for snacking, you even get used to that too!
I do try but I have the willpower of a maggot and after a couple of days find myself weakening and usually giving in. Would help if my other half could change his eating habits!!
Golden rule Mazeya. You can't change by virtue of what other do. It's hard I know but it's all about you especially now. Changing patterns is sometimes easier with a mechanism. I have stopped eating bread for example and don't miss it. Try this for three weeks. It is a hard thing to do but will reward you many fold. Place a half pint to three quarter pint glass/bottle of water by your bed. First thing when getting up drink it all in one go. Do so again with another mid-morning and then again mid afternoon. Just that, no change in anything you fancy eating. Just plain still water. In three weeks it will modify the way your gut behaves partially and stop some of the cravings. You will also lose weight regardless. You'll have to challenge that maggot of yours though. For snacks I buy a fresh coconut each week. Drain off the milk and split in two. I break out the fresh coconut inside as chunks and store in the fridge. When you want a chocolate or a biscuit or crisps just take a small piece with the thin skin and flesh and chew. Stops any more need and is good for you fiber, juice and much healthy chewing. You can fill the empty coconut shells with fat and peanuts to solidify. Hang them in the garden in winter for the birds. upside down. The shells protect the food and the birds, especially song birds and tits love them. Happy slimming. By the way, you will then find your body more receptive to different foods and with less of a craving for some you fancy now I hope. Good luck.
Thanks for the advice cycli, I’ll try the water thing you suggest as although I’m not overweight I am prediabetic since being on pred. I can keep off the biscuits but bread is my undoing! Restricted diets have always seemed rather spartan and miserable to me but I guess I’m going to have to reprogramme my brain and my stomach😟
good for you. Bear in mind I'm a nerdy cyclist who needs to(needed to) stay at a sensible weight to cycle 11 miles continuous climbing at 6-10% average like Mt Ventoux. I was 65 when I did this and 69 when I cycled the Dolomites in Italy. The water discipline is an essential component for anyone wanting to lose weight or reprogram their system prior to going on any diet or regime in my opinion. However, like all things you can have too much. The volume of 2-3 pints IS safe and good for you. The intervals are specifically timed to interrupt your pre-meal tempting periods and help in the reprograming. Excessive water consumption is NOT. Tea, coffee, juice are not substitutes for water. They are liquid and they contain water but it is not the same as drinking plain water for this. The volume must also be consumed at one session not eked out over a period. Good luck and do report back please. Always interested in others perceptions. I hope you'll thank me.🙏🙏🙏
You are really rather terrifying😃😃😃😂
I'd dispute the "coffee and tea are not substitutes for water" - they are, the only difference is you may pee them out a bit faster than plain water but the difference isn't enormous. Juice is not - we agree there. It is just liquid sugar ...
I'll accept that technically, but not many people will drink a hot beverage straight down and in that volume. It's the discipline which makes the difference. Water is by far the most suitable medium to achieve this.
That's a different factor though isn't it.
agreed. To be successful you need to adhere strictly to this regime. It's simple and free. It is also extremely hard to do. 3 weeks is usually sufficient to reset. We are all different in how we react so nothing can be guaranteed. You can't do a day on and a day off for example. It's the full course.
There is certainly nothing spartan or miserable about my low carb diet! Indeed - I feel justified in eating things that previously I would have regarded as treats! And it allows me things like mascarpone and other fine cheeses 
I've got one like that. He even piles the carbs on to my plate, to 'build me up', I think!
I too have the willpower of a maggot...love that euphemism !!! I can't handle the stairs well at the moment between body and sight...so all the goodies go downstairs in the basement. I occasionally ask for a cookie..but I know my positive thinking and good motivation would dissolve at the sight of a chocolate cookie or cinnamon raisin bread if it were within reach.
Do you have Wendy's fast food over there? We will buy their shakes and freeze them. When the desire will not be defeated.....eating a frozen shake is almost as good.
💖
No Wendy's fast food here that I know of! I've been pretty good since I discovered that a cup of cocoa made with semi skimmed milk works wonders for my cravings and must surely be better than a biscuit or slice of toast. Most of the time I just try to stay focused on something else, I read a lot!
Can't do walnuts, just don't like them, but almonds, hazelnuts and a few cashews
It sounds more like arthritis to me!
Plums here aren't anything like as good.
PMR? Rheumatoid Arthritis? Sciatica? What is this? 
PMR vs. Rheumatoid or something else
Polymyalgia and Rheumatoid arthritis 
PMR....RA??
PMR or ARTHRITIS
