Using my phone right now. Home internet is out so slow typing.
CRC 12.3 last 10.9
ESR 14 last 7
WBC 12.7
RDW 15.8
Nothing showed up unusual on previous CBC test. The ESR is still within normal but has risen. On diagnosis it was 37. CRC has also risen & is high. On diagnosis it was 17.2. Any ideas on what's going on? Does this mean the PMR is not under control? Or should other things be checked out?
Well guess it's no big thing! Rheumatologist office called & said so. The elevated levels of the red & white blood count doesn't really mean anything. It's expected "at my age". Ha! The fact that the levels have raised from last time on the others doesn't mean anything either? I know I'm going to hear it tomorrow! At least I was asked how I was doing this time. I told her that the dose I was at wasn't cutting it. I asked if I could go to 12.5 mg for a few weeks or less & oh boy! You know the speech about being on pred for long term & all those side effects. I'm so tired of hearing that. I said I really don't understand why they are so worried about it when I'm not having any issues. It's only a delay & not a long one. I don't know what to tell them. Thinking about saying what they want to hear & doing what I know I need. I would appreciate some input please? I really don't want to have another relapse!
It may be no big thing to the rheumatologist but it is to you! She is being very blasé about your concerns. Is she unable to make the connection between your worsening symptoms and raised inflammatory markers? Can she account for this? My advice would be to stick to your instincts and knowledge of your own body and push for sufficient Pred to manage the inflammation. If you are not responding to treatment your dose needs to be adjusted. Maybe ask her politely (through gritted teeth) if she will accept responsibility if you have a full-blown flare.
Have a look here:
webmd.com/drug-medication/p...
Good luck!
It was actually the nurse that called. I won't get to talk to the rheumatologist until my next appoinment in September but the sentiment is there through out. The girl said she would relay the message but I expect I'm going to get the same from the rheumy. She's always pushing the "other" drugs to help me get off of pred. The push? Well August is the dreaded 2 year anniversary that I have been on pred! She has been so concerned about getting me off the pred and not looking for the lowest dose! Thanks for you input.
If you also have symptoms - which is the impression I get from the comment above, then it needs checking again in a week or so because it is looking as if the current dose isn't quite enough to manage the daily dose of inflammation and it is starting to build up again. If left, that will continue until you are back where you started.
PMRpro thank you! Yes the neck and shoulders have been feeling achy, sore and "out", sneaking up on me over the last few days. Same with the hips but yesterday my hips were much worse. I also noticed that walking my right hip joint would twinge in pain. I feel "ok" this morning. Part of me wants to just keep going with the taper, part of me is saying absolutely not! I know exactly where that leads. I have been spending a bit of time on the computer sitting perhaps a lot more than I should. So thinking it could be my fault I feel that way? I thought about trying some tylenol, acetaminophen, if it helps then it's not from the PMR? Then I looked at the blood tests, I've never had the WBC or RDW show up high before. Scared me thinking there was something else going on. I looked it up and found it means that yes there is inflammation sooooo.....when the girl said "it's typical for your age." I about blew up. So to me it just confirms exactly what I was thinking & you both also confirmed that the inflammation IS building. I'm wondering if there is anything you can advise on what to say when they call back today? FYI, I was starting the taper to 10 mg but with the taper plan I've been using, I have been on the 11 mg for the last 4 days, today I'm supposed to go to 10 mg for 2 days. I would also like to know what you suggest for how long to go back to 12.5 mg for?
I found this on the Cleveland Clinic website, interesting says nothing about typical of age! I also thought it might be of interest to others.
Conditions
An RDW blood test, along with other RBC indices, may be used to help diagnose what’s causing anemia. Conditions associated with anemia include:
Cancer.
Cardiovascular disease.
Kidney disease.
Liver disease.
Thalassemia.
Chronic illnesses (Crohn’s disease, diabetes and HIV). HELLO!
Vitamin and mineral deficiencies (iron, vitamin B12, folate). ?
Having a long-lasting infection or losing a lot of blood during an accident or medical procedure may also cause anemia. HELLO!
And this on the Medical News Today website, also interesting and nothing about age!
Causes WBC
An increase in white blood cells is known as leukocytosis. It typically occurs in response to the following conditions:
infection
immunosuppression HELLO!
medications, such as corticosteroids HELLO!
a bone marrow or immune disorder
certain types of cancer, such as acute or chronic lymphocytic leukemia
inflammation HELLO!
injury or surgery
emotional stress or trauma
genetic or hereditary conditions
labor
pregnancy
smoking
obesity
allergic reactions
excessive exercise
Certain respiratory conditions, such as a whooping cough or tuberculosis, may cause the levels of white blood cells to increase.
Some of the things listed are pretty serious but I'm certain that in my case it only confirms that inflammation is amuck!
Until the symptoms have settled - and it might be better to have a few days at dose plus 5mg before going back to the dose you want to stick at.
There are doctors who think certain blood markers rise automatically with age - others realise the idea is more that as you age you are more likely to develop disorders that add to inflammation - and they aren't good!
Just to clarify, I am working towards tapering to 7.5 mg by Sept 15th per rheumy's insistance. Before my last appointment, June 15, I went back to 15 mg from 4 mg and was there for about a week before starting the taper. I am currently at 11 mg and started to taper to 10 mg and now this. So going to 5 mg above 11 mg would put me at 16 mg? I felt good at 12.5 mg and I still want to continue the taper. I guess my question is do I go to 5 mg above current dose or dose I last felt good at? Then how long before I start the taper again? Sorry, don't mean to be a pain!
Thank you for that. I am waiting to see what she has to say and will try not to get angry because I know she is doing what she feels is right. I'm certain it is not what my rheumy wants to hear but I wasn't talking about going back and staying at a higher dose, only to get the inflammtion under control and begin the taper again. I totally agree there are some nasty side effects but so far I've been fortunate not to have anything to serious and they have gone or I am improving on the ones that I did have. Believe me, I do not want to go back to a higher dose for long but I also do not want to have a relapse again. Nor do I want to take any other meds if I can help it.
I want to work with her on this but I also want to be realistic. The blood tests confirmed what I am feeling and I agree with PMRpro that "the current dose isn't quite enough to manage the daily dose of inflammation and it is starting to build up again. If left it will continue until you are back where you started."
I appreciate that you can give both perspectives. I wonder if she would place an order to allow for a provision to have the inflammatory markers checked whenever I feel I need? It certainly would help me as a guide and her to know that I was trying to continue to taper as soon as my body would allow. I guess it wouldn't hurt to ask!
123-go, PMRpro & Dad2Cue Wow! Just got the call back from my rheumy. She said to go back on the 12.5 mg for 2 weeks! Then start the taper again! I asked if at the end of the 2 weeks we could check the inflammation markers again, they said they would ask. I still would like your oppinion on the dose and how long.
Sorry you had so much trouble getting through all the health issues. I'm glad you were able to taper off pred completely. Hopefully I will be successful in my taper and not need to add the extra but if I do I know who to turn to! I'm just happy knowing that my rheumy does care and is working with me instead of jumping on the other meds as I was sure she was going to. Thank you!
I'm coming back to this rather late as I was off-line for the best part of yesterday. I'm so pleased to hear that your rheumy is working with you and involving you in decisions.I wish you all the best in going forward with confidence. 🙂
Blood test results
blood test results 
Blood test results 
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