More questions than answers....😕
Posted , 9 users are following.
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 mix
) 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!😢
0 likes, 28 replies
Anhaga lynda62707
Posted
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.
MKSimpson95 lynda62707
Posted
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!
lynda62707 MKSimpson95
Posted
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.
MKSimpson95 lynda62707
Posted
Best
.mk
lynda62707 MKSimpson95
Posted
EileenH lynda62707
Posted
"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.
MKSimpson95 EileenH
Posted
Best
/mk
lynda62707 EileenH
Posted
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!
EileenH lynda62707
Posted
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.
ptolemy lynda62707
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lynda62707 ptolemy
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EileenH lynda62707
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lynda62707 EileenH
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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!😕
Anhaga lynda62707
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lynda62707 Anhaga
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Hi Anhaga, whoa, that's alot of information, most of which I confess, I'm not quite sure I understand
.
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).
lynda62707
Posted
Sposed to say 'get'. This autocorrect drive's me Nutz!!
EileenH lynda62707
Posted
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.
lynda62707 EileenH
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lynda62707 EileenH
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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!
Anhaga lynda62707
Posted
My overthinking was also a problem back in the beginning. I still ask questions and am dissatisfied when there are no answers. I feel my current doctor for the most part has handled my PMR well, but I also think once the diagnosis was made I was a pretty straightforward case so it was easy for her. I, on the other hand, worry about everything. When I bring up a concern her response is almost always "I'm not worried about that". Which isn't helpful to me. But the worst was at the beginning when I was in such awful condition she actually told me not to worry, that it was her job to do the worrying, or words like that. That also wasn't helpful. But it wasn't as bad as my previous doctor who had failed to diagnose me telling me "your tests results are all fine and you're full of arthritis" during a brief appointment which ended in a timely fashion before I was even scheduled to see her, she was rushing so much. When I went back to get a better picture of what was going on (at this point I was practically immobilized by what turned out to be PMR) she gave me the x-ray report to look at and I pointed out a couple of things (I see I have no arthritis in my hips I said, although at the time I had so much pain I thought I should be in line for hip replacements, and I also asked about my iron level as I've had trouble with that over the years) her justification for not having been more thorough before was because she thought I wouldn't understand. She also erroneously told me my iron level was fine. I pity her current patients if she thinks a bit of grey hair makes you too stupid to understand what might be happening to your own body. And, by the way, my new doctor ran the tests again on the basis of my symptoms and the results of the former tests which, she said, showed some inflammation and very low iron.
So it can be good to think about things and ask questions, and in the end we have to hope that if a doctor is giving you helpful treatment and keeping you in the picture regarding the treatment and what the tests are all about, then we should be able to trust that they are doing the best they can for us.
lynda62707 EileenH
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Hi Eileen, sorry to bother you but I've not heard anything from anyone in almost 14 hrs which is very rare! Is there something happening that I'm unaware of, or is this just a slow day? I'm really struggling today.
lynda62707 Anhaga
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Hi Anhaga, so sorry to be so late in responding to you, but I'm not getting ANY alerts or notifications! I only "stumbled" across this by accident as I'm trying to create a new post to reach out and ask for help in reconnecting with this forum!
I'm having an awful day, and could really use some support right now. I think I'm feeling somewhat abandoned
😢
If you've any ideas, please let me know and I'll try to catch up with you by "accident" again!
Good thoughts..lynda
Mrs_Hobbles lynda62707
Posted
Lynda, you should look up some meditations on YouTube, they are very relaxing and help with over thinking!! It can be very hard not to worry about everything, but by doing so can get you into a bit of a state, so you definitely need something to bring a sense of calm. In relation to your raised ESR, any inflammation anywhere in your body can raise it, so a cold, a sore throat, an infected cut, and as you've said your hands are painful, so even likely from that, any and all of the above could raise your ESR, so try not over think it or worry because "Worrying is a waste of your imagination"!! 😉😊
lynda62707 Mrs_Hobbles
Posted
Thx Mrs. Hobbles, if you've read my previous posts, you know I'm having trouble getting notifications right now. As is with the case of Anhaga, I literally stumbled across your post by "accident" as I'm trying desperately to reconnect with this forum. This is stressing me out as much as anything right now as I'm wondering if I'm floating 'round' in cyberspace by myself! I'm needing you all LOTS and can't seem to rectify this. If you can, please help! Will wait for now.
lynda62707 Mrs_Hobbles
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Thx Mrs hobbles, I "think" maybe they've got the glitches worked out on this forum, at least it seems so as I was able to catch up on some posts!
As far as the medication for anxiety, prior to all my paralyzed lung situation, I was on daily valium which worked perfectly fine. Since my paralyzed diaphragm has come into play. my doc won't prescribe this till I go through a sleep study (which I'm scheduled for a consultation about in a few weeks), as he's concerned about my breathing (or lack there of) through the night.
He doesn't want to be partially responsible for me going into respiratory failure!😕 I've tried to explain to him my sleep is SO erratic...only an hour or so at a time...EVEN when I was taking valium...but he's still reluctant. It's so crummy how our individual bodies seem to react to various medications....I seem to be super steroid sensitive, but very immune to anti-anxiety meds!
What ya gonna do??
Like I've said, just keep swimming, swimming, swimming!
Good to be back with my cyber friends!😁
peggy_56092 lynda62707
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lynda62707 peggy_56092
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ME TOO peggy! I had no idea how much I relyed on this forum til I didn't seem to have access to it!
So glad it seems to be back up and running right again.
You all have become important to me on this crazy, brutal journey!
lynda62707
Posted
In case I forgot to mention, I also have a major anxiety/panic disorder condition, hence the aforementioned daily valium. It's been quite a struggle the past few months going w/o til I can get this sleep study done and hopefully get back on my regular regimen.
Been doing LOTS of deep breathing!😲