Have to increase dose again!

Hi beev---

You got my name right, thanks!

My rheumy tests the ESR and CRP, but for some reason she only mentions the CRP when I go for apptmts. So I don't know what my ESR is. My CRP was 8.2 or so for about four months running, so it had kind of stabilized. Then I changed insurance plans and they have a contract with a different lab company so I had to switch . If I went to the old lab, I would have to pay for the tests. Anyway the new lab measures CRP differently from the old lab but I think it is still stable approximately. It's very confusing. When I go on medicare in a few months, I think I will switch back to the old lab, just for simplicity's sake. I wish my doctors would automatically give me copies of the blood test results, then I'd know what my ESR is. My sister is lucky; she can actually go online and get her test results.

Anyway, sorry for that lengthy explanation--but I'm surprised your doc doesn't use the CRP, although I've heard that it isn't always a good indicator for all people. For me, it accurately reflects how I am feeling.

Take care! : )

freesia

Freesia wrote... "I wish my doctors would automatically give me copies of the blood test results, then I'd know what my ESR is."

I always ask my Dr for a copy of the blood tests. In the USA they're supposed to give you a copy. Be sure to ask him or her for that. It's your right.

Thanks, RickF. I feel like I am imposing on them when I ask for copies. I'm glad to know it's my right to have the blood test results.

freesia

Hi freesia

You live in the USA do you? The ESR seems to be a good guide for me - early teens and I am feeling fine. Does your sister have PMR too?

Beev

Heavens freesia - your insurance and copays pay them well enough in the US to spare you a bit of paper surely! You have to fight for them in the UK even though you are entitled to know what is in your notes but here in Italy I'm automatically handed the results! I can fetch them myself from the hospital lab and they are sent to the doc on the computer system so they can print them off it they want to.

Eileen

Hi beev,

Yes--I'm in the USA. Now I can't see your post so I hope I answer your questions!

My sister doesn't have PMR--lucky her. She's 63 ( 18 months younger than me) and doing great. No big health problems. : )

freesia

Just a note, beev: I did the math wrong, my sister is 62, she will be 63 this year!

Eileen, that's weird that you have to fight the docs in the UK to get a copy of your test results ! Is it the extra work of making a copy that throws them off? Italy sounds much better in that regard. You are right about my copay and insurance costs....they surely do cover a piece of paper in addition to medical treatments! LOL : )

freesia

Re blood test results in UK; If you go with a piece of papaer and pen and ask and write them down yourself you are hardly imposing. I have always asked what everything is whether doctor or nurse and there has never been any problem.

I think we are very fortunate with the general attitude in our surgery from what I read elsewhere.

BettyE, My blood tests are done in the US, but all I would have to do is remember to bring a pen and paper and write down the CRP and ESR values. That would be difficult with complete blood count(cbc)tests, though, where there might be 3 pages or so of values!

I was glad I had collected a few years' worth of those cbc test results, though, and took them with me to the hematologist's office--she was very interested in seeing them, and my primary care doctor had only sent her the test results from December.( For a few years, the lab was sending my doctor multiple copies and then she would give me the extras; after that, I didn't ask for a copy of test results, which is my fault, of course.)

Anyway, the point is, it's a good thing to get copies of the cbc tests--you never know when you might need them!

freesia

lupe,

Regarding your pred reduction: do you feel fairly normal --no stiffness or soreness? In other words, do you feel like the PMR is not active now?

I'm just wondering because I started this year determined to reduce prednisone. My CRP had been stable for several months so my rheumy said to try reducing. However, I'm now down to 4.5 mg/day and I don't think it's controlling the PMR. I'm still really stiff and sore. My legs feel almost as bad as they did before I was diagnosed, or at least that is how it seems. I'm probably going to have to increase the dose but I dread doing this since I think that yo-yo'ing around can be more damaging than staying on one dose all the time (?).

I think I am dreaming that I can get off prednisone completely and then if I still have PMR, I can pursue some naturopathic or homeopathic treatment...but I know it won't work. Gaaaaaaahhhhhhhhhh!!!

I see my rheumy tomorrow. She will have some blood test results --which I will write down! I just wonder what she will say about the stiffness and soreness.

freesia

Hi Freesia

Like the others, I ring in for my ESR results and when the receptionist says"normal" I ask her for the actual number and then i can see exactly how I am doing and I keep a record of all of them so i can see a pattern.

If you are achey on 4.5mg, you might have to go up to 5mg again if you were ok on that. Then wait until you are feeling ok again anf then do Ragnar's method of reduction. This would be e.g. 6 days of 5 then 1 day of 4.5. Do this for at least 2 weeks or maybe 4 weeks. Then try 5 days of 5mg and 1 day of 4.5 and reduce very slowly in this way.

My father has been on steroids for PMR for years and has always got pains back with a vengeance once he hits 3.5mg. However, he has recently agreed to follow my suggestion and to reduce much more slowly in the way I describe above. So far it is going much better for him that way. I think he is on either 3mg or 3.5mg now.

Good luck

Beev

Goodness - what next! My latest reply to Freesia has jumped in some odd way so that it comes after my original post at the start of this thread!

Beev :-( :-{:-# :-< ( trying to look angry and perplexed but can't find the right symbols!!!) (="" trying="" to="" look="" angry="" and="" perplexed="" but="" can't="" find="" the="" right="">

Hi beev--

In this new forum I think that each page of the discussion repeats the very first post at the top of each page--that's why you are seeing your new post (which is on a new page, page 3) after your original post.

I like your "emoticons" !! : )

Thanks for the inspiration regarding dosage. It's nice that you have also been able to help your father with his prednisone reduction using Ragnar's method.

I wasn't really pain-free at 5 mg but it was nothing like this! Eeeek, I'm sort of staggering around all day, my legs get tired pretty quickly, and my knees bother me. I wonder if part of the problem is that I fell down (again!) about 3 weeks ago. This time, luckily I didn't hear any cracking noises and my knee didn't go out of place--I managed to break the fall somewhat with my arms, so it wasn't such a bad fall. I tripped over some cords that were in my way--it won't happen again because I immediately rearranged them so they aren't crossing a path.

Who knows what this pain is about. Maybe my osteoarthritis has become worse over the past 2 years and the pain was being masked by the prednisone. I just don't know!

Thanks for your help.

freesia

Hi Freesia

Did you say your CRP was normal at the moment?? maybe it is your fall or osteo causing the pain then? If not you might need to take the Pred up to a level where you are free of pain and then do the very slow reductions. As I understand it, you have to start reducing at a dose where there is no inflammation otherwise the inflammation will just get worse. Eileen will tell you why.

Beev

Hi beev,

Thanks so much for your kind help! : )

My last CRP test was in mid January and it was about the same as it had been since October--so that's four months. I don't know if the values here in the US are the same as they are in the UK, but it was around 8.2 using one lab's scale of measurement, where a value of 1 or 2 would be normal, if I'm not mistaken. The other lab showed me at 1.5, and I'm not sure what they consider normal, but my doctors told me that these values are approximately equal to the same amount of inflammation. Hope I am making sense! At first I didn't realize that the two labs measured the value differently, and when I first got the new lab's results, I thought I was back to normal. I was so disappointed when I found out this was not so!

However, I don't know what my inflammation is right now. I will find out tomorrow!

Thanks to your idea, I decided to take 5 mg today instead of 4.5. (Lately I had been trying to do a Ragnar-style reduction from 4.5 to 4, but that only lasted about 4 days!) I also took one tylenol and a naturopathic (or homeopathic) medication called "Re-Lev-It" that is made of curcumin, the active ingredient in turmeric spice, which can relieve inflammation. I also took a little nap and lo and behold, I feel better! In fact the pain is hardly noticeable!

I agree with you about not reducing unless the inflammation was either gone, or way down, which is why I questioned my rheumy trying to get me to reduce when my inflammation was still present, and I just didn't feel ready. I just didn't understand her reasoning. However I'm not blaming her now, because I really want to reduce the pred and I felt ready even though I knew I still had some inflammation.

So maybe the answer was to just increase back to 5 mg. Of course, there are so many ups and downs with this disease, I'll just enjoy feeling better and hope it lasts. : ) I can't help but get sort of excited when I feel better. Suffering is not good.

I hope you are doing okay. How are you today?

freesia