Today, I had a smile and a chuckle, after my visit to my regular GP. It was the first time to see him, after my Neuro. discharged me from his clinic, and put me in the hands of my GP.My appt. was actually, about my lower spine pain, and my upper arm pain.He wanted to discuss GCA first. His words' YOU must come off the steroids now. What dosage are you on?'I told him I was on 3mg, tapering to 2mg, ON THE DEAD SLOW, NEARLY STOP method.He said nothing, and stared at me.I told him I was on a health forum for patients with PMR/GCA. I forgot to take the list which I had taken to the Neuro., explaining the tapering.He started saying that the Neuro. had organised a Synacthen test, and before he could continue, I said that I knew it was to see how my adrenals are doing. We DID , eventually, get onto the reasons why I was there, and it wasn't the usual 8-10 min appt.I think he sees me in a different light now.
Oh..his face.. a picture!
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karools16
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Yesterday I saw my GP. He wants me on a statin. Three years ago an X-ray of my abdominal aorta showed some plaque. I was told by my previous MD that it is very common at my age to see that. But my current MD wants me on a statin even though my numbers are all wnl ( total cholesterol 208,, tri 74, HDL 58, LDL 135) thanks to the low carb, low sugar diet I went on when I started the Pred.
I asked what kind of numbers would he expect to see if I took a statin. I was trying to gauge how much reward I'd get for my risks. His answer, "the numbers aren't important". I was a bit flabbergasted at that reply. My reply, " but I thought the numbers were what was driving the recommendation". His answer, "well on the statin, there won't be more plaque buildup or breaking off". I replied,"Oh so the statin changes something but the thing it changes isn't reflected in the numbers. I really was trying hard to play nice at this point. But I was thinking to myself,"That may be but how would we know if it's working if the numbers aren't a measure of the statin's effectiveness." I should have asked what would be a measure of whether the statin is working? I just let it go. I told him I'd find out what statin my brother is on, since my maternal aunt and female cousin had horrible muscle problems on statins.
I also asked hi how I would be able to differentiate muscle aches from the statin from those from PMR. He said usually the big muscles in the thighs ar affcted by statins. Iirc my aunt and cousin both had problems with their arms, plus general weakness.
They have established that, in women with a history of a cardiovascular event and men with and without a history, taking statins reduces the risk of an event, either first for men or a repeat. It isn't due to reducing the cholesterol - the lower cholesterol figures are a visible effect but not the reason for the improvement, they don't know WHAT the statin is doing, but it is obviously doing something.
I'm really not sure about "taking a statin will stop plaque breaking off" - that is a new one on me!
And as someone who suffered after less than a week of taking a statin - I felt ill all over! I had been in hospital, that was where they decided to give me a statin (not the cardiologist by the way). I left hospital feeling fine despite but in the context of PMR. A week later I could barely walk from the car into the hospital up a gentle short slope. I stopped taking the statin, the cardiologist wasn't in the least bothered, and I felt better in a week or two but it took months to get to the state I'd been in before the statin. Never again! I think it is the simvastatin data sheet which actually mentions PMR as an adverse event!
To my knowledge I have had no cardiac events. I am 75. I am loathe to start the statin.
Do we know if the negative effect of Pred on cholesterol levels includes an increase in stroke/cardiac events?
Interesting that they measure cholesterol to gauge whether to rx statins but lowering the cholesterol isn't the cause of the improvement in outcomes. It's something else that the statins do.
though the second one does admit it is unclear!!! They also say
"use of corticosteroids in patients with polymyalgia rheumatica may actually decrease vascular risk by controlling inflammation"
which I think is a fair assessment.
They do comment the population studied was seen in hospital care so may be those with a poorer health status than the majority who are looked after by GPs. Also, if you have PMR you are probably looked at a lot more in the younger age group they talk about who show a greater increase in risk.
They seem to me to be a bit ambivalent about PMR being a vasculitis - having a vasculitis that isn't managed is going to potentially cause problems and the higher risk is in young patients - who we know often struggle to get a diagnosis and pred.
Which was a longwinded way to say - pred reduces some risk, potentially increases others. And I don't think they REALLY know...
Yesterday I saw my GP and asked if he would prescribe 1mg gastro-resistant pred to take at night as I'm splitting my dose. He said that 1mg don't come in the coated form, to which I was able to respond (thanks to you on this forum) that they do now. He checked on his computer and found them and said "Well, you've told me something I didn't know." I showed him the DSNS regime a while ago and he thought it was a great idea. He's a treasure and I'm very lucky!
I love my rheumy but I think we may be heading for a few hiccups. My markers were esr/15 & crp/0.2 at 16mg IR Pred. On 2/24/17. That was the lowest for me since PMR onset.
I was tapering at the rate of .5 mg a week until that point . When I was 3 days into 15 mg, feeling pretty good except for still feeling the cytokines dumping in the early morning, she switched me, at my request to DR Pred. This took care of the problem with the cytokines dumping and I felt better in the mornings. We continued there another 10 days and dropped to 14mg DR on 3/21. On 3/31 my esr was up to 36 and my crp was up to 1.0. No other symptoms to speak of. Maybe a bit more tenderness in my right bicep after straining it. She said to hold steady for another week and retest. On 4/7 my esr went up to 40 and my crp was up to 2.5. Still no real pain, no stiffness, no fever, no fatigue to speak of. Only some GI irritability, queezy and bloats. But then I had chosen to reduce my omeprazole from 20mg bid to only once a day when I started the DR Pred. I didn't want it to interfere with the nighttime DR Pred. I did better on this reduction of omeprazole than I'd ever done before, so a bit of GI irritability seemed worth the trade off of sleeping through the night.
My Rheumy asked me if I had any other potential sources of inflammation. I told her that it had been a hard few weeks. But she doubted that the three styes I had treated between 3/17 and 3/21 and that had all but resolved by 4/7 would have caused the rise. She also doubted that the tragic and sudden death of a client on 3/28 would have done it. She also didn't think the sudden mole that needed a biopsy on 3/31 would have caused a rise in my markers. She did say that no so much with esr, but with crp, the numbers tend to go up before a flare.
So it seems I've had a flare without physical symptoms. I was put back up to 20mg DR Pred. For two weeks and we'll test again. I'm a week back at 20 and yes, my bicep is less tender, but that seems to be the only physical improvement. The queeziness and bloat are a bit worse.
A few questions for whoever has had some experience with this:
1. When we talk about a flare, do we mean numbers or symptoms? I've read here that the markers don't always follow the disease. My markers were very high when I was diagnosed . My physical symptoms resolved fasted than the markers.
2. Has anyone run into this? Negligible symptoms with markers going in the wrong direction?
3. Is it usual to treat the numbers or wait for symptoms? I guess the real concern with waiting for symptoms would be GCA. I haven't had a biopsy for GCA, but since the only thing available to me is a TAB and false negatives are quite likely at this stage, I don't think a TAB would inform treatment decisions, unless it surprises me and turns up a positive.
4. If the markers are back down, what is the usual treatment strategy ? What kind of taper?
5. If they are not back down, what then?
Happy Easter everyone.Enjoy family and friends, and let them cater to YOU this year.
Raised markers without symptoms is almost always due to something else - really! You should really wait for symptoms.
Depends on how long you were at a higher dose - if it was just a week or so you could go back to where you were. But on the other hand, was that a dose that was low enough to cause a flare? You don't really know.
What about trying ranitidine/Zantac instead of the omeprazole? Different/fewer side effects and does almost the same job. Whatever the drug reps claim!
If I follow my rheumy's suggestion I'll have been back on 20mgs for two week and then test.
Your advice re zantac are words out of my mouth an hour ago. Do I take it a half hour before dinner or a half hour before the DR Pred? I take the DR at @ 10 pm but stay up until midnight usually, not horizontal, to minimize esophageal irritation.
Thanks for the info re markers up without symptoms....That is a bit worrisome to me. I do not like the choices among the "something else". I think I'll slip in early for the ESR/CRP testing, ten days instead of two weeks. Have to be in the clinic anyway for smtg else. If the markers are going down I'll petition to start returning to a lower dose of Pred. I was really strong at 16. Would that be a reasonable target right away or too big a drop after being at 20 for ten days?
Don't know about when to take the ranitidine - I can't see it makes much difference when you take it - the effect lasts for hours so it doesn't have to be immediately before the tablets.
After just 10 days there is no need to taper back to the former dose unless the previous dose was no longer enough to manage symptoms - then you need to find out what dose IS enough now.
A chest infection can raise CRP dramatically - more than PMR does!
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Confused with Dr. Tapering meds
Saecond time round with PMR & ?GCA
