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I could not remember when the stiffness around my shoulders and hips started. I got used to the difficult task to put my socks on without being able to bend at the hips, to wash my hair by lifting one arm with the other and change my golf swing to something very short and stiff. Picking a ball from the hole was also a different job. And then it got slowly so bad that I could not turn over in bed or get out of bed, while I was every morning drenched with night sweat. I called my GP and told the symptoms to the nurse. I had to get to the lab to provide blood etc before I met with him. When I met he suspected PMR even though ESR was 27, but CRP was 90. I had all the textbook PMR symptoms. My reaction to Prednisolone was miraculous. I took 12mg at 2PM and was playing golf with a fuller swing than in years at 4:30! Total freedom all at once. I really thought this was great! My GP sent me to the Rheumatologist, but also immediately put me on 10mg Prednisone. Since I felt good perhaps I did too much, but a week later I got stabbing pain in my left chest when breathing in. To the ER and diagnosed with Pleurisy. After 2 weeks on 10mg and extensive tests to try to find an alternative for the PMR, my dose of pred was increased to 15mg. After 2 more weeks still with fever, nightsweats, headache and stabbing pleurisy, but no stiffness or pain in my shoulders I was increased to 20mg. Pleurisy disappeared and slowly (now 4 weeks on 20mg) also the fever and nightsweats are improving. Went back to work and found out the stress does indeed set things off again. So every other day now I still have the low fever, nightsweats and headache. I am now asked to lower to 17.5mg and am not sure if that is the right thing to do.
Has anyone else seen the Pleurisy?
0 likes, 30 replies
mark9992 koen1
Posted
No, I had a flare up of Epstein Barr, and was directed to get off of pred. two months of a very painful process later, and I'm back on at 10mg. Their direction to lower to 17.5 isn't based on anything but the desire to find a lower level that will control the pain and let you live your life because pred at high levels for an extended period of time can do real damage.
koen1 mark9992
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I will likely try lowering to 17.5mg next week, just to see what happens!
EileenH koen1
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Why does your title now say "possibly GCA"? If there is a possibility of GCA I don't think a reduction below 20mg is a very good idea.
koen1 EileenH
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My rheum is suggesting to try to go down to 17.5mg after 5 weeks on 20mg. I am willing to try. If things are no good, I can always go back to 20mg. Or does it not work like this?
Anhaga koen1
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I know that a drop of 2.5 isn't unusual from 20, but considering you've been quite ill with other things it might be harder on your system than a slower reduction. Could you consider doing it the dead slow way, rather than all in one go from one day to the next? Or perhaps one mg per week? What you suggest sounds like you might almost be expecting to yo-yo somewhat and from all accounts that's not a good idea. Makes it harder, I think, to get to a more stable lower dose and may well result in a higher lifetime consumption of pred which for some reason is also considered a significant concern.
koen1 Anhaga
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EileenH koen1
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You wouldn't be the first person to struggle with 2.5mg after a flare of this sort. It was a lady who couldn't get under 20mg without struggling who made me think about the slow reduction at higher doses as well - we were already telling people to slow right down below 10, and it was originally thought about for getting below 5mg.
I could well be wrong - but I've always been under the impression that an ordinary MRI doesn't show much for GCA. If it did they'd use it more as it is non-invasive and non-ionising radiation. You can use PET/CT or PET/MRI to see inflamed arteries - but not in the head as the brain takes up such a massive amount of contrast that the arteries just fade into relative insignificance.
What concerns me though is that your rheumy is suspecting GCA but encouraging you to reduce very quickly to a very low dose in the context of GCA. The normal starting dose for GCA without visual symptoms is 40mg and a study a couple of years ago showed that in GCA and in other vasculitides there is evidence of remaining inflammation even after 6 months at high dose pred - i.e. above 20mg. As Anhaga says - once you get into a yoyo pattern with doses you are heading for trouble.
koen1 EileenH
Posted
Dear Eileen and Anhaga, thanks for taking the effort to keep me complete stranger safe! I will discuss your comments with my rheum. I am motivated, since I did not have a good night. Woke up at 5 with 38C and more headache and sensitivity of skin this morning. I believe that every day that I had a night sweat, my fever is down in the morning. But this morning at 5 I had no sweat at all (yet). I was in sweat when I got up at 6, temp down to 37.7C, but after shower back to 38C...
I should explain, that my headaches don't meet the real GCA expectation of severe and sharp. I have in general a dull consistent low pain, a little like a slight hangover on both temples and forehead, but it is tied to my fever. When I have the headache, I almost always also have an elevated temp around 37.5C. More headache, higher fever...
Anyway, I will let you know how things go.
Thanks again!
EileenH koen1
Posted
Most symptoms experienced by real GCA patients don't meet expectations! If I had £100 for every patient who told me their rheumy/GP says they have atypical symptoms I'd do quite well and could spend all my life on holiday...
Anhaga koen1
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Koen, one of the many things I've learned from this site is that we are none of us strangers to each other. Even if it's just in the context of our illness we are supportive friends, students, guides, role models. And we all care about each other. Good luck! ?
EileenH koen1
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I also meant to say - why do you think we're here?
koen1 EileenH
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koen1
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EileenH koen1
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I wouldn't accept that - you need medical advice not promises of a discussion without you being present.
koen1 EileenH
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Any advice for the best way to take the 60mg is welcome!
EileenH koen1
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We're aren't doctors on here - and a 60mg dose is one you really should discuss with your doctor. I have to say - I'm surprised you have access to enough pred to be able to take that sort of dose for more than a day or two - and you really must not get into a habit of yoyoing the dose because that will make things much more difficult later.
Jaw pain alone is not usually seen as a reason for taking that high a dose - it is reserved for patients who are having visual symptoms and where there is a risk they may lose vision so a very quick reduction in inflammation is desired. 40mg is a much more usual starting dose in this sort of situation - and obviously that makes the subsequent reduction shorter.
However - the advice of taking higher doses is the same as lower doses: all at once in the morning. Some people react badly to high doses, all people have side effects at that level - which is why you really do need to keep the dose at the lowest that works.
Sorry this is probably far too late - but I'm in Europe and we are way ahead of you so I was in bed by the time you posted!
koen1 EileenH
Posted
I did have 2 occurrences of visual symptoms. Perhaps in combination with the continuously worsening headache and the new jaw pain, which passed after an hour or so, they reconsidered those as related. I only took 40mg yesterday, since I only had 15mg in the morning and don't want to take more than 10mg before I go to bed. So I took 15mg with lunch yesterday.
Today I took 30mg before breakfast, plan to take 20mg before lunch and 10mg tonight.
I am rapidly going through the 5mg pills that I still have, but they called in to the pharmacy and there will be a month supply of 10mg pills there.
I hope I don't have to be on this for too long.
EileenH koen1
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However - what works for you...
koen1 EileenH
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Anhaga koen1
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How much elemental calcium is in your "monster" tablet? The body actually can't effectively absorb a large amount at one time. The maximum for a single dose shouldn't be more than about 500 mg.
koen1 Anhaga
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I have not discussed with my rheumy. Will do so next time. My brother (med prof) recommended strongly to add calcium to diet.
I also am strong on taking active culture yoghurt.
EileenH koen1
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You would be better taking 2 halves a few hours apart - as Anhaga says, the body can't absorb more than a certain amount at a time and the rest is lost in the urine or - if you are really unlucky it can form stones/grit in urine. You also need some fat at the same time - to transport the calcium and vit D from gut to blood.
EileenH koen1
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koen1 EileenH
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Dear Eileen and Anhaga, thank you both for taking so much time to keep me doing the right thing on this journey through PMR and GCA to hopefully a happy ending. I think that I will stop taking these large (over 1 inch long) pills and make sure I get enough Calcium from yoghurt and milk. The pills are liquid gels, so splitting them may not be a good idea
The good thing about taking the higher dose is that for the first time in at least 8 weeks, my whole days are without fever and my headache is also gone. At least it seems to working very well. Next Tuesday they will take a biopsy, but the surgeon fears that there may already be enough curing because of the pred that he will have difficulty finding giant cells. We will see.
In general I believe that I have been lucky not to have any of the very painful symptoms. My PMR was mostly just stiffness and limited range of motion. My nightsweats I have learned to see as positive, because every morning after nightsweats my fever would be gone. It would come back in the day,but seldom as bad as when I start the day with fever. Even now with high dose pred I do still have nightsweats, but no fever all day. My headaches were also never very painful and stabbing, but low dull pain. So I see myself still as lucky compared to so many that really suffer under this disease.
Thanks again!
Anhaga koen1
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koen1 Anhaga
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This is my 4th day on the high dose of pred. What a difference! I have not had any fever or the dull headache since I started, but today was also the first day without nightsweat and still no fever. I have had no trouble with taking 60mg in one shot in the morning before breakfast. Let's hope this will continue when I start to take less, hopefully soon.
I have much more energy, mowed the lawn, edges, weeds etc. Worked myself in a good sweat, but had no problems afterwards.
Yay, for prednisone!
EileenH koen1
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You're still suffering from a very serious illness koen! I know you feel you can take on the world when you are on 60mg pred but you do need to rest too to give your body a chance to heal!
But this is great news - long may it last!
koen1 EileenH
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Of course you are right! I am in terrible shape compared to before this all happened. I take more breaks and don't push myself as I used to, but the difference between being on 20mg, which was not enough (just seemed to slow down the process of getting worse) and now is amazing. I will still get the temporal artery biopsy Tuesday. I am not sure if they will find anything, since my symptoms were always much less painful than other people describe here.
EileenH koen1
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Pain isn't the primary criterion though - though after a week at 60mg I doubt there will be a great deal to see. As long as they remember that a negative biopsy only means they didn't find what they were looking for! Your response to pred is fairly unequivocal - there was somehting nasty going on and the best bet is GCA!
Anhaga koen1
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Glad you're feeling so much better. Have a look at the Bristol paper which you'll find a link to here; it gives a reasonable taper for GCA, bearing in mind as always that we're all different.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
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