DIagnosis PMR, Pleurisy??? and now possibly GCA.

Hi Mark, sorry to hear that. I was lucky that the treatment of pleurisy, inflammation of the outside of the lung, is also Prednisone. I was glad it finally passed when I was on 20mg. Pleurisy is truly breath-taking!

I will likely try lowering to 17.5mg next week, just to see what happens!

Hallo Eileen, initially my PMR was well controlled with 10mg prednisone. Then one week in the pleurisy started and pred was increased over 4 weeks to 20mg to deal with it. While that happened the nighsweats, low fever, headache and sensitive skin on my head started. After 2 weeks on 20mg a head MRI was done to check for TA. The arteries looked OK. It is then that my rheum said that perhaps the GCA started while I was on pred. The treatment from then on would be the same PMR or GCA. Now I have been more than 4 weeks on 20mg and the earlier symptoms seems to improve, even though it is day by day. I started work (half days) since I felt OK at home, but I did not expect that stress would cause symptoms to set me back somewhat.

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?

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.

Thanks, Anhaga. I will be talking to my rheum tomorrow and will suggest some form of slower change. 1 mg per week would still get me to 15mg in 5 weeks and that still seems pretty fast. I would need to get a lot of 1mg pills though! Right now I only have 5mg.

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.

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!

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...

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!  ?

I also meant to say - why do you think we're here?

A short update: no change today. My rheum, the ANP, wants me to meet with the MD first tomorrow to discuss the next steps. This was after I reported from my keeping a daily log of temp and symptoms over the past 36 days, which shows actually no improvement in the past 11 days.

Still have not met or talked on the phone with my rheum. ANP wants to talk to MD first, before talking to me about reduction. In the mean time, I got pain in my left jaw and pain in my chest this morning and I am having another bad day today, with headache and fever. Hope to get some answers today. I can only get through to their admin, which is friendly, but not very helpful.

I wouldn't accept that - you need medical advice not promises of a discussion without you being present.

Since I had also jaw pain this morning I am not going down with my Pred, but up. 60mg per day per immediately. Does anyone have advice on how to take this? I took the 20mg as 15mg before breakfast, 5mg in the evening, half hour before bed. I take one Famotidine (Pepcid AC) just before bed. Also take 2000 IU vit D3 per day and a large 1200mg Calcium with also 1000 IU D3 at lunch. And that has caused no trouble, but 60mg?

Any advice for the best way to take the 60mg is welcome!

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!

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.

Taking pred 3 times a day is particularly discouraged - it increases the potential for side effects quite a lot and hitting the inflammation with a high dose is preferred to reduce the swelling. The anti-inflammatory effect of pred lasts for 12-36 hours, it remains in the body for far less time and so a single dose leaves your body pred-free for longer.

However - what works for you...

Thank you for the insight. I seem at least so far not to have any trouble with pred. I will try 60mg before breakfast with a large glass of water, then yoghurt with acitve culture and then my one slice of home made whole wheat bread with chocolate sprinkles! If that works it is easier to find a meal to take the monster Calcium pill with. And then at night just the Famotidine for the stomach.

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.

My wife got me these with 1200mg in each and 1000 IU vit D3. First I took one every other day, but now that am on 60mg pred I thought to take one daily.

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.

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.

A pharmacist suggested taking the pred in the middle of meal - line the stomach first, take your tablets, eat the rest of your breakfast.

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!

 

Making sure you take magnesium and Vitamin K2 also helps with proper calcium absorption into the bones.  K2 is not same as K1 and almost certianly will need to be supplemented.  Good info now available online about this relatively little known vitamin.

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!

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!

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. 

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!

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