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Swelling is it pmr?

Posted , 4 users are following.

angelcake61
angelcake61

Hello I was diagnosed with pmr 6 weeks after onset of aches and massive dwellings eventually I had blood tests, esr and crp rates of 95 and 97, you can imagine the pain I was in, not being able to move, sleep, wash or eat much.

I was put on 20mg steriods which worked immediately I tried to reduce slowly but getting to 10mg it came back in wrist and elbow areas so it was upped again. That was in February, I have now got down to 7mg but have some sack like swelling on my foot just below my toes.

I wondered if anyone has experience of this due to pmr, previously for me this area has not been affected.I am going to the doctors tonight but I am a little wary of them just upping my steriods.

My esr levels were down to 8 then crept up to 10 and 2 weeks ago they were 18, my doctor said it wasn't a sign of the pmr but maybe something else is happening.

Any advice for me please, this is my first time posting, but this forum has helped me to come to terms with this condition and handle the reduction of steriods in a sensible way. Thank you

1 like, 17 replies

17 Replies

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  • pat38625
    pat38625 angelcake61

    Posted

    Hi, sorry to hear about PMR there are quite a few people who are more qualified than I am with this condition.  I was diagnosed just last month.  Somebody will reply to you soon.  Welcome and all the very best.  You will get lots of help and support and good information here.  Hang on in there.
  • EileenH
    EileenH angelcake61

    Posted

    I don't know how your GP can say so firmly that the ESR creeping up isn't the PMR resurfacing - because he cannot tell. Yes, ESR will go up if you have a cold or other infection/inflammation but in someone whose blood tests indicate inflammation (mine never have) then monitoring the ESR is a good way to predict a possible flare. The fact yours have continued to creep up would be accepted by most experts as a sign the pred dose may not be quite high enough. A single raised reading is meaningless, yes, but consistent creep like that isn't.

    If you have been following the forum for a while you must have seen my posts with links to a paper about managing PMR from the rhematology group at Bristol. They keep patients at 10mg for a year - and this reduces the rate of flares to 1 in 5 instead of the 3 in 5 found with reductions more like what you have been using. 

    Swelling of feet and ankles is fairly common in PMR - I went up a shoe size! The new shoes I bought then are now too big without thick socks so be comforted, it does go away! Something I found very helpful in later stages was manual lymph drainage. Some of the swelling can be simply due to fluid settling around inflamed areas and lymph drainage may help persuade that to disperse. 

    I certainly wouldn't continue to reduce further at present - 7mg is a common sticking point as the adrenal glands start to wake up and produce their own cortisol. I thought at first you meant you were diagnosed in Feb and was going to say getting to 7mg by now is pretty speedy - but no, you mean you had your flare in February? Whether you need to go back to 10 is another matter. Has another ESR been done? Is the CRP also raised?

  • angelcake61
    angelcake61

    Posted

    Thanks for you replies, I will ask for another esr to be done tonight.

    10mg was when it kicked before so I think I need to take things even slower, I have been alternating the days 9/10 for a month then 9 for 2weeks before dropping to 8/9 mg.

    I haven't seen the study from Bristol, could you direct me please.

    Should I be under a rheumatologist, advice greatly received

    Regards

    • EileenH
      EileenH angelcake61

      Posted

      This a link to the thread where the first post includes links to other info sites and forums. The last link in the post is to a paper by the Bristol group with advice for GPs in managing pred dose reductions in PMR.

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

      It may be returning not because you are going too fast but because the underlying autoimmune disorder that causes the symptoms is still active. The idea of the reduction is to find the lowest dose that controls the symptoms - at present that may be about 9 or 10mg for you. You may get lower using the very slow reduction pattern in the 4th and 5th posts of the thread - but equally you might not and there is no advantage in trying to force a reduction. You need as much pred as you need and until the underlying autoimmune disorder burns out you will need pred. I have had PMR for 10 years, I have been taking pred for over 5 years and for a long time I too got stuck at 10mg. Using the reduction plan in posts 4/5 of that thread I have got to 4mg but when I tried 3mg I got bicep pain again so I went back to 4mg. My friend with a very similar story has got to 1mg for the first time. We are all different, our bodies react differently to PMR, to pred and to reducing that pred. There is no one size fits all - however much doctors try to make out there is.

      You don't need to be under a rheumy if your GP is being helpful and there are no real problems. That you cannot currently get below 10mg isn't a problem, it may resolve by going even slower, it may resolve next summer - cold and damp isn't good for PMR, nor are the excesses of Christmas and New Year preparations! The Bristol paper is a good blueprint but many of us believe the reduction they suggest below 10mg is still a bit gung-ho. many patients cannot cope with doing 1mg drops in one bite and spreading it as you did is always a good idea. But I think you need to stay at a dose for at least a month before changing it again otherwise you have no idea at what dose things started to go pear-shaped. If you are on a dose that is just controlling the inflammation (which is what you are looking for) then when you go just below it it will take a few weeks for theinflammation to build up enough to cause problems - but if you have continued reducing in the meantime you don't know whether there were already symptoms reappearing at 9.5mg, or was it 9... Half a mg can make a massive difference - give your body time. 

  • angelcake61
    angelcake61

    Posted

    Thank you again for your replies, I have just seen the new dentistry thread to which I have replied and wondered if you might feel this has something to do with the reoccurance of symptoms?

    My tooth extraction was on 19th of Dec and the foot swelling g shortly after.

    I am finding that it's becoming increasing difficult to work ad for a while now I've had dull aches all over, I do hope I'm not bombarding you with to many questions.

    Kind Regards

    AC

    • Angela345
      Angela345 angelcake61

      Posted

      Hi AC.  It could be that your tooth extraction has triggered a PMR flare. The same thing happened to me in September when I had my flu jab. I had the 'aches all over' thing which didn't go away until I had a steroid injection in November to knock it on the head. I've seen it recommended to increase the Pred dose briefly when undergoing surgery or dental treatment. I have had PMR for just over a year, am at 5mgs since August, but felt best at 7mgs. I also take Methotrexate for Rheumatoid Arthritis. 
    • angelcake61
      angelcake61 Angela345

      Posted

      Hi Angela, I've just remembered my pmr started after I had the Flu Jab in Oct 2013, I thought it was the cause, but my doctor assures me it was just coincidence.

      Maybe it was an underlying thing that got triggered by the Flu jab, I was diagnosed with an underactive thyriod.

      So from being fit and healthy without any medication I've gone to taking levothyroxine, prendisalone, omeprozole, accretive D3 and Alendronic Acid.

      Any advice welcome and thanks again.

    • Angela345
      Angela345 angelcake61

      Posted

      It's definitely not a coincidence. My rheumatologist told me that 'sometimes this happens'. I developed PMR just after having my first ever flu jab followed by the one for pneumonia which I was advised to have because taking methotrexate lowers your immune system. I had my PMR flare just days after having my second flu jab. I don't regret having the jabs though as both flu and pneumonia can be nasty, or worse, with a lower immunity.  Angela. 
    • EileenH
      EileenH angelcake61

      Posted

      i wouldn't be surprised if the whole thing hadn't had an effect - work, Christmas, winter, dentist. It's all stress and stress and PMR don't mix. 

      It is not thought that one particular thing triggers PMR but there will be one thing that is the straw that breaks the camel's back. I developed PMR and had never had a flu jab. I've had 2 or 3 now and I don't even get a sore arm. 

      It might be coincidence - but it might not be. If you already have an autoimmune problem - like hypothyroidism - then you are more likely to develop another. Anything that upsets a finely balanced immune system can topple it - be it the dentist and the stress, the flu jab or even an infection or accident. I always say that if somehting happens within a short time of something "different" suspect it had something to do with it until proven otherwise. There are even some drugs (including some statins) where the manufacturers admit "it may cause PMR" - but the GPs will deny it for all they're worth.

  • panamabob
    panamabob angelcake61

    Posted

    Angelcake,

    For what its worth I too suffer from swollen feet and it does go away.Then again I have so many issues that it is just one more.However,I am relieved ti hear Eileen say it is common.I thought maybe I had cardiovascular complications.

    Its interesting that the bulk of the problems on this forum seem to concern incompetent doctors,who really should do more to 'bull up' on this condition and seek a standardised approach.The second most popular concern seems to be the difficulties of commg off Pred.With this problem the difficulties seem to be how each individual reacts to a reducing dosage.Trial and error really.In my experience you have to get a ;feel' for how your body will react.Just my opinion.

    • EileenH
      EileenH panamabob

      Posted

      Can be heart things too - I ended up with a double dose. But even with that, medication didn't improve the swelling significantly. Manual lymph drainage did, in days. No side effects!

      As for "trial and error" and "getting a feel for your body" - absolutely Bob. Learning to listen to your body and knowing when it is saying "NO" is essential. Tailormade therapy...

  • angelcake61
    angelcake61

    Posted

    Went to see a different doc last night, he says he doesn't think it's the PMR, he says other things present the same and its not usual for the PMR to be in this area with no other signs.

    I told him about the forum and said others had swellings in their feet, he advised I take Naproxen, which I did last night 500grm, but I've just tried to get up and I'm in pain around both hips making me double over.

    I'm going to take some more Naproxen now and see what happens.

    With my first ever bout and before being diagnosed I was almost eating Naproxen and they didn't do a thing, was just told to carry on taking them and to look after myself.When I said I though I was looking after myself by coming to the doctors she said 'No you have a disabled husband and you must put him into care!) Luckily that doctor has left now, we have one doctor that is brilliant and works with you but unfortunately it's over a month's wait to be able to get an appointment with her.

    Then they will be closed tomorrow, I'm tempted to just up my steriod intake if the Naproxen doesn't kick In by teatime, had to call in a carer for my husband hey ho.

    Regards Angelcake.

    • EileenH
      EileenH angelcake61

      Posted

      Be VERY careful using Naproxen alongside pred. It is a NSAID (non-steroidal antiinflammatory) and it is recommended they should NOT be taken alongside pred as both can cause stomach bleeding. I despair sometimes - I think the marketing line is that Naproxen is LESS irritant to the stomach - that does not mean it is NOT irritant. Make sure you take your tablets with food, preferably in the middle of a meal.

      If you have pain in your hips you may have developed trochanteric bursitis or you may have myofascial pain syndrome which often causes spasmed muscles in the back and then that causes referred pain to radiate into the upper thighs. Both respond well to cortisone injections - but of course you have to persuade someone to try giving you them. And both often happen alongside PMR. 

      I hope you reported that doctor - that is an appalling thing to say to a patient and she has no business being a GP. No doubt she thinks that you can snap your fingers and there is a suitable place for your husband - that won't cost you anything, is just round the corner from where you live and there is no emotional cost to doing such a thing. 

      Grrrrrrrr!!!!!

  • angelcake61
    angelcake61

    Posted

    Eileen thank you so much, you are so knowledgeable and have great insight 're the care home. It was to cost over a £1000 p/w and I wasn't well enough to visit.

    I had actually told this doctor 2 weeks into being I'll that I thought I had PMR, my friend has a cousin with it and she could see I was the same, the doctor just said' That just means many muscle pain, do you want me to treat your Thyriod or not'. Weeks later she told me I had a bad back, I couldn't even move my neck and arms, eventually I sat in Accident and Emergency for the morning, they gave me a high dose of steriod for 6 days which bought my levels down from in the 90's to 53.

    Of course after finishing fishing these it all kicked in again but managed to see the 'good' doctor.

    Yes your right again, I questioned taking naproxen and steriods and he said they are less irritant on the stomach than ibuprofen.

    Feeling a little better than when I woke, we'll see what tomorrow brings, I will look up the other things you mentioned as I don't know what they are, I do suffer from sciatica too.

    Thanks again for your responses and knowledge sharing.

    • EileenH
      EileenH angelcake61

      Posted

      "Less irritant" doesn't mean "non-irritant". But now see the other post I've written to your latest post!
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