Newbie hear to pick your brains

Hi all, I have found this group by browsing the communities here as I have Polymyalgia Rheumatica and on their group.

After going to the docs for a few years I was finally diagnosed with PMR at the end of June.

However I have tremendous pain in one hand and fingers and now my knees are hurting. I went to a Rheumy a couple of years ago and they did a scan and found nothing even though my CRP was at 27.

After being on Prednisolone for 2 months now for the PMR my CRP is down to 14 but the pain in my fingers is still there.

I have now been re-referred back to the rheumy as my GP thinks I have Seronegative Rheumatoid Arthritis and I was negative for the rheumatoid factor.

I am not really sure how they diagnose this is my bloods were negative.

I assumed it was tendonitis resulting from the PMR so any advice or info will be most welcome.

20 Replies

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  • Why haven't you seen a rheumy since then, ou should have been seen more regurarly than that. When you do get your appt be prepared. Write down all your pains and how it affets you. It will help you and them when you see them. Also tell them how you feel as well.. sylvi.xx

  • He just sent me back to doc to manage pain with ibruprofen. My appointment is at the end of October so will write it all down thanks.

    With the PMR I am on long term steroids and a lot of meds for the side effects. I am also a diabetic so am on tabs for that as well as hypertension. Oh and as if all that wasn't enough I have IBS also.

  • It never ends does it,i have fibromyalgia as well. there are other problems as well. Today i am very fed up with it all. xx

  • It was Fibro that I kept asking the doc about, I was convinced it was me. One doc who has now retired even told me to go home and look up CFS. Yes that fit me too but I get the burning on my legs and irratable legs at night etc so fibro fit me better. But now the diagnosis of PMR.

    The thing is I have always been a very busy person, running my newsagents and raising a large family I never had time to be ill.

    I no longer have the newsagents, I closed it down when my hubby had cancer as I couldn't cope alone. He is fine and a surviver and now works damn hard so I don't have to. I do however home educate our 2 youngest at almost 7 and 13yrs.

  • God your so busy and to cope with a disease as well,well done you. sylvi.xx

  • Gp's really let me down sooo badly.For years I kept going in to see a DR hoping for some help with pain and swelling. I was going with swollen thumbs,feet,feet and feet,knee,neck ,allsorts and I was fobbed off time after time.Bad marriage,stress at work, working too hard ,not getting enough sleep...loada rubbish!.I struggled on and on I remember dropping my daughter on her christening day as when I stood up I had so much pain I lost balance.Thats in 1999.She survived to be a stroppy teenager! All normal there then.

    Its only 2 months ago that I finally got to see the Rheumy.Its so obvious now that I should have been referred much earlier.You need to get to see the Rhumy I have a changed my GP after being with them for 16 years.I don't think GP's are suitably qualified to deal with our complexities.

    The difference is amazing at my new GP Practice..I now feel listened to and supported No longer the dreaded patient its so important to get to the rhumy Gp's are like general practitioners.Their knowledge is more general ,we all need specific advice.That has to be the Rheumy,I wish someone had told me all of this a few years ago.And the pred(steroids) aahelp with pain and swelling but they can do a lot of damage.Its a possibility that you need DMARD s this i have now found out 20 odd years later Grrrrr !

    I'm finding you have to keep fighting.They don't want to spend money on treating people if they can help it so you have to be on the ball.

    hope you feel better soon.

  • What is DMARD ???

    I am on naproxen for anti-inflam, lansoprazole to protect my stomach. Alendronic acid to prevent osteoporosis and calcium supp. Then the pred, metformin for my diabetes and lisinopril for BP

    My GP is actually fantastic, the first one I saw who said he thought I had PMR was unwilling to treat me for it cos of the diabetes but had a really bad flare and saw a locum who gave me a reducing dose pred for 10 days saying if it works then deffo PMR. It did and went back to the first doc who then put me on long term pred. He then tried to reduce to quick and I flared again. I spoke to another doc on the phone who is new to our practice but boy he knew his stuff. He was the one that put me on all the other meds to counteract the side effects of pred. I now see him and speak to him weekly. I am still on 20mg pred but then he referred me to rheumy cos of my hand. I told him I had tested neg for rheumatoid factor then he told me that he thought it was seronegative RA. I am still confused by this cos it either is RA or it isn't surely.

  • DMARD = Disease Modifying Antirheumatic drug. There are quite a few - if you want to learn more I suggest you browse this NRAS site more fully as all is explained here. RA, like many autoimmune diseases is hard to diagnose for many unless you have positive indicators such as visible swelling with hot pink joints, high inflammatory markers (ESR and CRP), positive Rheumatoid Factor and or anti CCP, Even if you are negative for all of these it is still possible to have RA so no GP should really just stick you on painkillers and keep you on these for years. If you have a lot of pain in your joints and it isn't getting any better they should refer you to a rheumatologist who is the expert on the many rheumatic diseases including fibro and Lupus and many others besides. If you have diabetes type 1 then there is quite a high chance you will get other autoimmune diseases but the same does not apply to diabetes type 2.

    With RA it's often a case of elimination and instinct re getting a diagnosis

    The reason it was your sore, swollen hands that persuaded your GP to refer you is because RA often starts in the hands/ fingers and feet and if your knuckles are red and swollen it is more likely that this is RA. I hope this helps. Tilda

  • Thanks, no not red but yes swollen a little. He squoze the sides of my hand and I about hit him. I only take the naproxen when my PMR flares as on steroids for it. I am type 2 diabetic and was only diagnosed with that back in March.

    I will look on the site now. Thank s

  • Sue8,

    if you have young children, can I ask how old you are? I'm just asking because its very rare to have PMR under age 50, and it usually hits around age 70. If it was your GP who diagnosed and started treatment with steroids (particularly as steroids can cause a lot of problems with insulin levels, so may have actually triggered your diabetes) then I think you should really question why you were diagnosed with this and not referred to a rheumatologist straight away. PMR does respond well to steroids, but because you have to take a reasonably high dose and long term, its really not responsible to start treatment for it unless they are absolutely sure its that, and you fit all the diagnostic criteria (including being over 50 years old).

  • I was diabetic before the diagnosis of PMR. I am 49 and yes it says everywhere that it is rare under 50 but I am on a support group and there are loads of people my age and younger.

    I do fit all the criteria apart from age but age alone is not enough NOT to diagnose. My CRP has come down to near normal now so the steroids are working.

    I have been to rheumy before with my hands and aches and pains but a scan on hands showed nothing so he discharged me.

  • another thing - the fact that a course of steroids worked definitely DOES NOT prove that its PMR - it just suggests that it is some kind of inflammatory process - which could have been any of the inflammatory arthritis conditions (RA, spondyloarthritis, etc).

    I am actually rather horrified that a GP could even consider putting you on long term steroids for PMR without referring you to a rheumatologist immediately.

  • I absolutely agree When I finally got to the rheumy at hospital I felt like i'd come home.I was so used to my Gp and lots of other folk looking at me as if I was a bit daft.It was the most wonderful feeling in the world find humans who a) believed me b)didn't put on a false smile over gritted teeth c)who accepted what I was saying as making perfect sense d) are well versed in this mysterious world and to have found someone who understands exactly what I am talking about e) and who has knowledge to share.

    GP'S make terrible mistakes,there are over 170 different types of arthritis.The Rheumy has the specialised knowledge.

  • My appointment is in 6 weeks so will see what they say. I don't really want PMR not do I want RA to be honest I just want to be pain free which prob is never going to happen. My eldest son is 29 and is an Ankylosing Spodilitis sufferer, he is also a specialist ICU nurse so I turn to him when in need of info and advice.

    Yes I agree a rheumy is a specialist but there are NO tests to diagnose PMR only history of pain etc. While I prefer not to be on long term steroids, for now they are working. Without them I would not be able to get out of bed let alone home educate my kids. So whatever it is PMR or RA or anything else I am not in pain. :)

  • Hi Sue8, sorry you are having trouble with getting diagnosed. I have had RA for almost 20 years and was lucky to be diagnosed quickly as bloods showed positive.

    I had PMR some years back, I was something like 56 years old so the theory of having to be in your 70's frankly is hog wash. There's always the exception to the rule of course.. Prednisolone worked for me within 4 hours of starting them for the PMR which is how mine was confirmed by a younng GP at our surgery - he'd just done a course on it in his training.(And what a relief when the steroids worked!). I was already on Diclofenac, Leflunamide and Methotrexate for the rheumatoid arthritis so I guess that made diagnosis easier because my bloods were already being monitored.

    It took me about 2 years staggering coming off of the steroids but I got there in the end and only get the odd twinge in the top muscles of my arms now and again - hang on in there, dont loose heart it gets better. Search me on the other site as I have posted on there, I wont bore everyone here with my story.

    Best of luck

    Judi xxxxxxx

  • Thank you Judi, I know I am not alone in the under 50's catergory and I to agree it is hog wash. I was a little upset at the leaflets that Artharitis UK sent me on PMR with a seemingly old couple on the front page.

    Yes the pred worked quickly for me also, I started on 20mg but then after a week one doc dropped me to 15mg and boy did I flare. Spoke to a diff doc and he put me up to 30mg. I am now still on 20mg but this doc I see now is fab. He is young also but seems to know his stuff I was well impressed with him so I only see him now.

  • hi sue welcome to the site

    im seronegative RA and i dont know what ive got thats the trouble with some docs they dont know whate this means

    mine came and whent twice before just left me with knee clunks now in april came back with a vengance.

    my docs been stabbing in the dark since april and ive seen a rumi and he said patelor tendonitis so i wonder why thast didnt show up on the mri scan

  • Thank you for the welcome. I think the docs have been a bit baffled by me also for a few years and prob cos of my age. Now apart from my fingers and hands and sometimes knees.

  • yes they think its in you head and anxiety and all that dont they

    and this is for 100000 pound s per year.

    what if i wass on that ide find out by hook or crook what ya had id be more interested in that than someone with a hurt finger.

    would be more interesting to find out

  • Hi Sue8

    RA can be a tricky diagnosis to make as the blood tests are not a definitive way of making a diagnosis. You can read more about this on the following link: nras.org.uk/about_rheumatoi...

    It is likely that the rheumatology consultant will discuss the symptoms you've been having and do an examination of your joints, they may also wish to take some more X-rays or scans.

    We also have an article on what to expect when you see the rheumatologist for the first time so this might be useful to read before your appointment: nras.org.uk/about_rheumatoi...

    We have another article 'Making a diagnosis of RA' that may be of interest: nras.org.uk/about_rheumatoi...

    As the others have mentioned, steroids are often used when trying to make decisions about a diagnosis, but in RA this would usually be a short-term 'bridging' therapy while they are getting you started on an appropriate disease modifying drug (DMARD).

    Please do feel free to contact the NRAS helpline if you'd like to talk things through further (on 0800 298 7650 or helpline@nras.org.uk), and I hope your appointment in October goes well.

    Kind regards

    Sarah Kate

    NRAS

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