Swelling is it pmr?
Posted , 4 users are following.
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
pat38625 angelcake61
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EileenH angelcake61
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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
Posted
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 angelcake61
Posted
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
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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 angelcake61
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angelcake61 Angela345
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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 angelcake61
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EileenH angelcake61
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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 angelcake61
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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 panamabob
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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
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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 angelcake61
Posted
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
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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 angelcake61
Posted