More questions than answers....😕

Bones, joints and muscles
1

Hi all, I apologize for yet one more question, but it seems that's how it's goin' these days...quite literally, a new question (or concern) everyday.

Before I get in to the medical issue just let me state.....although this isn't a political forum, I've always preferred to interact with folks as a complete whole....I will NOT be defined by this (or any other) disease! With that being said....

I had a doc's appt. this am. Results from my blood work showed Increased inflammation, even with being on prednisone, 90-sed. rate...I didn't understand what this meant and was told norms were around 32. At my last blood work, mine was apprx 42, and so it has increased significantly. Doctor was a bit confused by my exam as I'm Realitivly pain free! That would say to me that the pred. IS working cuz when I started to taper last week, I WAS in great pain after only 2 days!😕

She recommended I go on methotrexate to start a taper.I respectfully declined due to all the info I've acquired from this forum and the fact that I'm not wanting to add yet another medication to the mix! Much to my surprise, she said she understood (and EVEN agreed) with my decision and wants me to stay on 15mg for the next 3 weeks.

She has also referred me to a hemotologist. THAT makes me nervous. I asked what she was looking for and she Really played it down and told me I shouldn't worry! Yeah...easy for HER to say!

Next, got my results from bone density test. Apparently, I've got osteopenia (let's throw that into the mixsad ) and she wants me to start on a 'fusion' of some type of med. to help combat this.

We discussed a few other things, but I've probably bent your ears way to long. But suffice it to say, I'm going to be going back to my original doctor (the one who left unexpectedly due to her pregnancy for anyone who can remember my posts of what seems like forever ago), cuz her case load is bursting at the seams! I LOVE this doc and feel so comfortable w/her....I'm going to see her at Least one more time in 6 weeks and we'll revisit it at that time. Hopefully we can work something out!

So, enough of my complaints for now...my question to you all is where do I go from here, should I be Even more concerned, and did I make the correct call on the methotrexate?? Can't wait to hear from you as I'm feeling quite overwhelmed at the moment!😢

2

I think you are wise not to add another medication at this point especially as you have more than one serious med to deal with already.  Fifteen mg is a reasonable dose for a little while and then time for a very slow taper.  Your doctor is being smart, checking that nothing else is going on.  Some illnesses present as PMR initially and respond to pred but ultimately are better treated with something else and it's really good that she's ruling out other things.  

3

Lynda sounds like good news from the pain side.  So important to have a Dr you are comfortable with and trust.  Is 15 mg the dose you started on?  

I had the double biopsies yesterday am anxiously waiting my appt with GP on Friday, opthamologist on Monday, Rhuemy Wed, bone density following Wed.  All pain gone except the headache which I am no longer sure if it is GCA or Prednisone at this point.  

Wishing you well!

4

Yes, I initially started on 15mg--tapered to 12.5 WAY to quickly, messed everything up due to my desire to get off prednisone as quickly as possible---bumped back up to 16.5, and now am back to original dosage of 15!! Wfewww!

YIKES, it sounds like your plate is quite full right now.

Sending best wishes and good thoughts everything will turn out well for you.

What are the biopsies for?? Forgive me if that sounds naive, I just really don't know.

5

"INfusion" - medication adminstered into a vein in your arms from a drip. 

What were the FIGURES of your bone scan? The t-score is what you need to look at. t-scores are used to categorise the degree of bone density loss. Better than -1 is normal. Down to -2.5 is osteopenia, below -2.5 is osteoporosis.

I have a t-score of about -1.3 - that is osteopenia but DOESN'T require any intervention except calcium and vit D supplementation which has maintained my bone density at about the same level for over 7 years. Anhaga had a reading of -2.1, also osteopenia, but she used natural methods to improve the reading in a year to -1.6, also a level not felt to require intervention.

However - your doctor is being very sensible - there must be a reason for the ESR to still be very high. Saying 32 is "normal" is a bit old-fashioned, these days it is usually accepted that if it is above 20 it is raised. For some people, even 20 is raised (it would be for me). So it is right of her to to get other checks done.

Because she is referring you to another specialist I would ask to leave adding ANY extra medication until after those investigations have been done. The less there is floating around the simpler it may be. There is no desperate hurry to start bisphosphonates even if you do decide to.

MKSimpson's biopsies will be of the temporal artery to look for signs of GCA - I'm sure you've seen us discuss them before.

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Hi Lynda- biopsies we’re temporal arteries for GCA.  Should have results Friday if not sooner.

Best

.mk

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Eileen , yes, she was 95% sure but still wanted to biopsy due to my age.  Good info on the bone density- I go fo that on the 18th...

Best

/mk

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Omgosh Eileen, you say 20 is the norm, then it's even worse than I thought! What in the world could be going on? Now I'm more anxious than ever!

As far as the bone scan, I'm not clear on the numbers. I'll have to whip those papers out in the a.m. and get back to you. I did forget to say she told me I had several compression fractures on my spine which she assumed I was aware of. I WASN'T! No one's ever said a word to me!

9

No point panicking - if there is long standing inflammation it can lead to a high reading without it being particularly serious.

But existing compression fractures do suggest you need something - but I'd still wait until other investigations are done.

10

Sending good thoughts...please let me know of your results.

11

The printout I get has 35 as the maximum normal level for ESR now. I think it may vary due to age too. My ESR has never been as low as 35 let alone 20!  I notice the notes from my doctor say “raised - ongoing”!!

12

At the risk of sounding ignorant, ESR is sed rate??

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Erythrocyte Sedimentation Rate - erythrocytes are red blood cells.

14

Thank you Eileen. So, if my ESR is elevated, that means my red blood cells are increased? Aonc what does that mean? Sorry for all the questions, I'm very anxious right now as when I just looked at my referral papers, the hematologist is an ononcologist! I'm getting more and more anxious as the day goes on, not to mention my hands are cramping up and painful as I type this!😕

15

Piqued my curiosity so I looked it up.  Inflammation causes red blood cells to clump together and this more dense clump descends the test tube more quickly than individual cells.  The more inflammation, the more clumping and the higher the sed rate.  But I believe this test has to be done within a very few hours of the blood having been drawn or the results will be inaccurate.

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Hi Anhaga, whoa, that's alot of information, most of which I confess, I'm not quite sure I understandsad .

In any case, it doesn't sound good--one way or another! I couldn't mont this new hematology appt till 10/31!! It's gonna be a LONG month!! (Happy Halloween).

17

Sposed to say 'get'. This autocorrect drive's me Nutz!!

18

No - not the red cells. Various proteins in the clear part of the blood stick onto the outside of the red cells and that tends to make them stick together more easily. As Anhaga says, when they stick together they become bigger "lumps", are heavier and fall faster.

To measure sed rate a sample of whole blood is put into a tube which is set up vertically and left for a set time before measuring how far the top of the column of red cells has settled towards the bottom. That figure is the sed rate. Inflammation changes the proteins made by the liver - CRP, c-reactive protein, is one of them - and that makes them stick together more.

Doctors who are haematologists are almost always oncologists - because they deal with certain sorts of blood cancers and have to know how to diagnose and treat them. It is unlikely though that a haematologist would treat prostate cancer. It's just like someone can have a car driving licence - and also a bus licence and a truck licence. Someone who can drive a truck can also drive a car - but the other way round isn't always true. 

Try to stop overthinking everything and cross bridges when you come to them. I know it is hard - but you seem to have a thorough doctor who is going about this the way they should: ruling out all the other options first before accepting that PMR as we talk about it is the most likely cause of your symptoms. ESR will shoot up with all sorts of things - even a cold. It is very non-specific, it just suggests there may be something going on. If pred doesn't suppress it it is probably something else - and that is what she is looking for. But it could be all sorts of things.

19

Tha

20

Ughhh...my phone's driving me crazy right now....Thanks so much for all of the information. It's very helpful.

I am trying to not over think things (not in my nature( but having a tough time doing so.

The ONE thing I am holding on to is that since the prednisone did have such a quick (almost miraculous) response to my symptoms, I'm hoping that was indeed the correct diagnosis...I think anyway😕.

The whole mess is pretty lousy no matter how you look at it!