I was feeling so good. Then... WHAM!: I was struck... - PMRGCAuk


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I was feeling so good. Then... WHAM!

Purple-Owl profile image
26 Replies

I was struck with PMR last September. Couldn't even turn over in bed. My theory is that PMR was triggered by an inflamed insect bite that became a blister on my leg the size of a golf ball. I was doubly worried as my mother had lost her eyesight with GCA. Anyway I started on 15 mg pred. After a slight flare I went up to 20 mg and have been tapering since.

At first the prednisalone gave me a feeling of disorientation and slight dizziness. This has now gone. I've even lost weight, though I do have a puffy jaw and swollen ankles and legs. On the whole I've been feeling a lot better, though tired. However, at start of Spring I went in the garden to pull a few weeds and got about 10 more insect bites on my legs and thighs, even through thick socks and trousers. This time no blisters but my legs broke out in a scarlet rash of inflammation. Doctor put me on a course of antibiotics. Naturally I finished the course, but I did wonder later if the exaggerated inflammation might not have been caused by the PMR rather than an infection.

Nevertheless I continued to feel good and to taper slowly 1mg a month and had reached 9mg. Then. The day before yesterday, my left hip started to ache. Gradually this spread and got worse. Yesterday my left wrist joined the party. Last night it was so painful that I could hardly sleep. Today I can't use my left hand, it aches all the time and so do my hips. Yesterday and today I've increased the daily pred from 9mg back to 10mg. Thought anyone?

26 Replies
Rosbud profile image

Welcome , I'm certain that more experienced help will be on the way very soon but in the mean time , I hope you feel more comfortable soon x

HeronNS profile image

Is it possible to be allergic to insect bites? I know people can be severely allergic to stings. Would an antihistamine have helped the rash? Just thinking out loud here, but I think your reactions to the bites need some investigation.

Purple-Owl profile image
Purple-Owl in reply to HeronNS

Yes HeronNS at the time I thought the inflammation was very like an allergic reaction I had to Metronidazole (antibiotic), when my arms and legs went hot and scarlet. At the moment though i'm more concerned with this weak aching wrist, and hoping I don't have to increase my pred once again.

PMRpro profile image

I think that you have probably reduced a tad too far - and you are now on a dose that is too low to manage the daily new dose of inflammation produced by the underlying autoimmune disorder that causes the symptoms we call PMR.

To have got from 20mg to 9mg since last September is pretty good - PMR has a median duration of 5.9 years, it isn't a one-off course of pred you take that "cures" it, this is a long haul journey. You aren't reducing relentlessly to zero, you are looking for the lowest dose that manages the symptoms as well as the starting dose did. And for the moment you have probably got there with 10mg. It doesn't mean you won't get lower, just not yet.

If you don't go back - you run the risk of the inflammation building up to the level it was last September and being back where you started.

Purple-Owl profile image
Purple-Owl in reply to PMRpro

Thanks PMRpro. I'm so grateful for your help on a Bank Holiday Sunday! I have taken 10mg yesterday and today, and will see how things go.

PMRpro profile image
PMRproAmbassador in reply to Purple-Owl

Not a BH here. There's an Italian holiday next Saturday I believe - and half of Europe is having their Whitsun holiday. A lot of them here...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer


Think you you’ve probably got a couple of things going on. The effect of the insect bites, and I agree with HeronNS about the anti-histamine, will have troubled your PMR, plus you may well have just gone below the level of Pred you actually need. So a bit of a double whammy.

Really at that time you should have stayed at 10mg until things had cleared, and not reduced until everything had settled. I know you said you felt okay, but sometimes you just have to stop and think “is it sensible to reduce whilst I have another problem?” The answer’s usually no!

You may find that going up to 10mg is enough, but if you don’t feel better after a couple of days at it, then you may need to go up to say 12mg, and then after a week come back down to 10 mg.

Whether the initial 10mg is enough, or whether you need to go up and down again, don’t be in too much of a rush to taper to 9mg.

Purple-Owl profile image
Purple-Owl in reply to DorsetLady

Thanks so much for your advice DorsetLady. I was really worried with this - and of course these things always happen on a Bank Holiday Sunday!! Your suggestions are just what I hoped might be good. I'm on my second day of 10mg and will go up to 12 for a week or so if this aching doesn't subside.

piglette profile image

I have swollen legs and feet due to the pred. I had a blister on my leg after a hip op, the size of three golf balls! Last week the same thing happened after a bad bruise on my leg. I have been told it is made worse by the pred. Probably insect bites may have the same problem too.

Purple-Owl profile image
Purple-Owl in reply to piglette

Very interesting Piglette that you too had/have swollen legs and feet. It's somewhat reassuring to know that at least in part it's due to taking the pred. Of course I wasn't taking pred when I got the first blister, but it may have helped to trigger PMR. Likewise it's possible the inflamed bites may have triggered this flare I'm having. (Typing with one hand as left wrist is so weak and painful I can't use it!)

piglette profile image
piglette in reply to Purple-Owl

Whenever I ask about the swollen legs and feet the doctors just shrug and say it is the steroids! They would not give me water reducing drugs as they are apparently counter indicative with pred.

Purple-Owl profile image
Purple-Owl in reply to piglette

I was given a diuretic. Quickly stopped as it reduced magnesium and potassium in blood. No noticeable reduction in leg swelling, but interestingly I lost several pounds AFTER stopping the diuretic. Legs still puffy now but arms skinny.

SheffieldJane profile image

Just a left field thought. The rash doesn’t initially look like a bullseye does it? It’s just that your description begins to sound like Lyme Disease with the swelling and joint pain etc.

HeronNS profile image
HeronNS in reply to SheffieldJane

I was wondering that, too. And apparently Lyme doesn't always start with a bullseye so even it's absence wouldn't confirm it's not Lyme.


Purple-Owl profile image
Purple-Owl in reply to HeronNS

Hmmm. Thanks for the link HeronNS. It struck me how very similar the symptoms of Lyme disease are to PMR symptoms. In answer to SheffieldJane - no, the initial bites were little pinpricks of red. The large bite that caused a blister last year was also unlike a bullseye. I'll bear Lyme in mind though.

HeronNS profile image
HeronNS in reply to Purple-Owl

We here in Nova Scotia are getting a bit paranoid about ticks as apparently we are at the epicentre of the tick infestation in Canada, although Ontario and one or two other parts of the country are catching up fast. We are even being given advice on how to maintain our yards and gardens in the city to discourage ticks from setting up residence so it's no longer just a question of tick patrol when camping in the wilderness. 😱

LarryLeek profile image
LarryLeek in reply to SheffieldJane

Yep I wondered the same & had myself tested for it which came bk. negative. It definitely wouldn’t hurt to get tested though.

yogabonnie profile image

what kind of antibiotics were you given? Cipro doesn't agree with prednisone.......it's always something!...

Purple-Owl profile image
Purple-Owl in reply to yogabonnie

I was given (hope I have the name right) Flucloxacillin. I didn't want to take antibiotics as I thought the inflammation was not infection caused, but the inflammation was so bad I went along with the doctor.

PMRpro profile image
PMRproAmbassador in reply to Purple-Owl

That's OK - at least it wasn't a quinolone (their names end in -oxacin), a class of antibiotics that should never be mixed with corticosteroids.

Tonylynn profile image

Antibiotics are for bacterial infections !!! And I see no indication that your insect bites were infected. (This is why there is so much antibiotic resistance and doctors being advised to only give when necessary).

But,yes, you must ask for a test for Lyme disease. It is a great mimic.

Purple-Owl profile image
Purple-Owl in reply to Tonylynn

I didn't want to take antibiotics as I thought the inflammation was not infection caused, but the inflammation was so bad I went along with the doctor.

You might want to rest your wrist or at least try not to do repeat moves for a few days. I have neoprene wrist wraps or if it feels like my wrists and thumbs need support I will tape them up for a few hours (allowing for blood flow!).

I have diabetes (18yrs) and all insects not only make a beeline for me...pun not intended...but leave inflamed wounds. I am not a wakeful scratcher. The wounds also lasted a long time. Weeks and weeks. Pred made these much worse at 10 to 15mg. I had fucidin cream for a boil on my ear a while back and had lots left and used that on all my bites etc and have healed much quicker. It was the first time in years I didn't get infected wounds. I had over 60 midge bites while in the Netherlands about 10yrs ago and would have been in real trouble if they had swelled like yours! It sounds like a severe reaction. I always have antihistamines too since "The Dutch incident". The family said I looked like a cow rubbing my arms on flat surfaces so I didn't break the skin. Horrid.

Purple-Owl profile image
Purple-Owl in reply to

Fucidin sounds like a good thing to get Poopadoop. Is it on prescription? Very interested to know your experience. Sounds just like mine. Insects find me very tasty too.

in reply to Purple-Owl

No it was on prescription. It can be used really sparingly. If I get a wound- boil etc I will ask for more.

They say it's a pheromone thing. When I used to be part of a walking group years ago I was always travelling with a group of flying insects above my head. Sometimes there were more than 20 people in the walking group and I was carrying the insects for everyone. These days I think they just like the sweet blood - high calorie drink for them.

LarryLeek profile image

I agree w/ PMRpro & Dorsettlady, You just just can’t EVER go wrong with advice from those 2 but It definitely sounds like you are trimming down on your dosage too fast. How often do you trim bk? Also it sounds like something else could be going on. As far as your hands/wrist go. Even when I was on 20 mg they still gave me issues even though I really wasn’t in any pain elsewhere. Right now I’m bk. down to 12.5 mg a day & I have to cut bk. To 10 beginning tomorrow. My rheumatologist also started me on meloxicam (Mobic) one tablet a day @ night mainly for my hands & wrists which has helped SOME. So far each time I’ve cut bk. On prednisone by 2.5 mg each time & so far I haven’t experienced any bad flares BUT I have begun to have some pain in my shoulders & left hip & of course my hands @ night while sleeping so I could be entering the too low a dosage stage again. To be continued....

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