After blood results, so many new things. - PMRGCAuk

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After blood results, so many new things.

Missus835 profile image
51 Replies

Just had the phone appointment with the Rheumy ~ finally.

Blood glucose 7.7 (which indicates diabetes). Last month was normal. CRP 4. Cholesterol is high, so she wants me on a pill, although I don't know what marker it's at. Yet another pill. :(

Physio therapy for the low back issues, x-rays of hips.

Continue tapering Pred at 5 mg. bi-weekly until I'm down to 10 mg and then 1 mg. every 4 weeks.

I'm so discouraged. I've cut the carbs, cut the sugar, cut the salt. No wonder people develop eating disorders while on Prednisone.

We're "keeping an eye on the head pain" which usually starts after a taper and then settles back down, although I don't have GCA according to biopsy, ophthamology and the powers that be.

A slight rant.

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Missus835
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PMRpro profile image
PMRproAmbassador

Was that just a straight blood sugar check? If so I'd dispute the BG being 7.7 signifies diabetes - pred makes the body release random spikes of glucose from the body stores in liver and muscle. If the blood test was taken close to one of these spikes, it will be raised more than if the blood was taken later. No need to panic yet. Was the Hba1c checked? That reflects the average blood glucose over the past 3 months and a rising trend is a cause for concern and means some action is needed.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Agree -had similar reading early days -GP was quite laid back .. in those day 8 was considered to be diabetic.

His comment was -a reading of 7.9 is considered okay, but at 8 every goes into a panic -we’ll just monitor it and see. As I reduced Pred it returned to normal ….

Missus835 profile image
Missus835 in reply to DorsetLady

That is my hope DL. Also being put on a statin for high cholesterol has me bummed out and I'm also weighing the pros and cons of it.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Missus835

I took statins for a number of years before and during GCA - although I had to try 3 different types before finding one that was okay. No brilliant, but okay.

I stopped them after GCA as cholesterol dropped… but in the fullness of time it crept back up, so I tried the one I was on previously- body didn’t like it.. so stopped again. Last year, new keen young GP ‘insisted’ I try again, with another brand. No go, usual aches and pains and dizziness so spoke to original GP and she amended my records to state I’m intolerant to them.

Not really sure whether it’s the passing of time, or post GCA/Pred or what but my body certainly doesn’t like them any more.

Missus835 profile image
Missus835 in reply to DorsetLady

Thank you DL. I'm going to try a statin. I have horrid anxiety over any new drugs as a result of being overdosed on Demerol a long time ago. It has stuck with me every since and I have anxiety anyway. Better to get it under control as is quite high according to the pharmacist. I just had to get another opinion as I only hear from rheumy every once in awhile. Pharmacist says it was elevated on the previous bloodwork at end of March.

Gossiplady profile image
Gossiplady in reply to Missus835

oh dear! Poor you . Personally, I would forget statins. Three friends on statins for a very short time, all said memory was badly affected. , also weakness in their arms. They decided to buy plant sterols supplement on line and everything improved. After reading the side effects given with their medications, ooooooh forget it. But that is just my opinion and I am nobody.

Joseph14612 profile image
Joseph14612 in reply to DorsetLady

I too have trouble with statins , tried a bunch of them and no go....but I am in the US and my GP got me on a monthly self injection called Rapatha....don't know if it is available there in UK, but seems to work and no problems with it...

Missus835 profile image
Missus835 in reply to Joseph14612

I am in Canada so perhaps it is. I'll kerp it mind and thanks for the info.

whitefishbay profile image
whitefishbay in reply to Missus835

I had high cholesterol (8) and the best GP in the practice said I had to go on statins so I did and it's fine (Atavastatin) and it has halved my cholesterol so that is good. I have to say every GP in the practice told me different things about statins - some no I don't need them, some well okay you can take 10 but then I saw the 'best' GP in the practice and she was adamant that I needed 10. No wonder we get confused.

Best of luck.

Missus835 profile image
Missus835 in reply to whitefishbay

Thank you whitefishbay. Am going to try the statin. Did you feel better after taking it for awhile or you didn't know you needed it at the jump off?

whitefishbay profile image
whitefishbay in reply to Missus835

You know how they tell you there are side effects sometimes? Aches and pains....well I have had aches and pains long before I 'got' PMR so I don't know. I get stiff if I sit too long. There are different statins so maybe if one doesn't work then try another. PMR Pro tried lots and has an interesting story (as always). Good luck.

Missus835 profile image
Missus835 in reply to PMRpro

Not sure what you mean by "straight blood sugar", but it was a fasting one and done at 7:30 in the morning. I had not eaten since 9:30 p.m. the night before. Requisition just had Blood Glucose ticked off. I did have the Hba1c checked about 3 months ago, which must have been normal. Rheumy did indicate it was to be done only once (at the bottom of the req.). She also felt it might be from the Pred.

Also, Pro, I don't want to go on a statin. Never had high cholesterol in my life and that might be the Pred also. Trying to taper as fast as is possible. I have not gained that much weight since Jan. 2022, but it is definitely redistributed.

PMRpro profile image
PMRproAmbassador in reply to Missus835

Just a fasting blood sugar level, not the Hba1c level which is an average over 3 months - not a one-off image of what happened in the last hour or so.

The cholesterol is also a consequence of the pred - but like the blood sugar, a raised level is a raised level, whatever the underlying cause.

Missus835 profile image
Missus835 in reply to PMRpro

How do you feel about statins? I'm more of the "let's change the diet" type of person. From what I see, they can cause weight gain, muscle weakness and such and I would have to take them for the rest of my life.

PMRpro profile image
PMRproAmbassador in reply to Missus835

Diet rarely achieves a lowering of cholesterol without an unsustainable regimen - Kendrew wrote about it recently. Most of your cholesterol is made in the liver and that is where the pred effect acts.

Personally I don't "do" statins as they make me ill so I am on ezetimibe which has lowered it significantly and doesn't seem to cause too much in the way of adverse effects.

Missus835 profile image
Missus835 in reply to PMRpro

Thanks! I was just searching around and saw a post about ezetimibe. I'll try to call the pharmacist to see if she can head the Rheumy off on the statins. LOL.

Kendrew profile image
Kendrew in reply to Missus835

Hi Missus835,

Just sending transcript of my statin post to another member. Hope it helps.

"If you read my bio and some of my posts, you'll see that I too avoid taking any medication without evidence to support the need for it, so over the years I did much research on statins and my own cholesterol issues.

I discovered that everyone has their own normal, natural level of body cholesterol that is very difficult to alter....although not entirely impossible to achieve.

When first diagnosed, I changed my diet and exercised more, and within 3mths my cholesterol reading had reduced from 6.7 to 4.3. However!.....I was incredibly disciplined and after 3mths of such a regime I realised it was completely unsustainable as I was not socialising anywhere that involved eating or drinking for fear of jeopardising or compromising my 'special' diet and exercise ws takin up all of my free time.

Most people would probably not choose to be so disciplined and it can take an awful long time for the necessary changes to emerge when just cutting out or adding food items to address the problem.

For the majority of people, a faster and more immediate resolution is usually required.

I'm pleased you've experienced success with your husband but I do feel you're in a fortunate minority.

Most others will find it very difficult and challenging to affect a significant change and maintain it without having to eventually take statins."

I've been on & off statins for much of my adult life and have not experienced any problems I haven't been able to resolve.

Might just help you make your decision.

Missus835 profile image
Missus835 in reply to Kendrew

Thanks for this info. I will see how the pharmacist makes out with the blood work results and the Rheumy. Not sure about the "husband" comment though. LOL.

Kendrew profile image
Kendrew in reply to Missus835

Haha!.... well it was of course originally a response for someone else so I probably should have edited that bit out.

Missus835 profile image
Missus835 in reply to Kendrew

Of course it was, I'm sorry. I'm very weary about taking ANY new medications, but it's better than the alternative and Pharmacist after checking my bloodwork, is recommending the statin.

Kendrew profile image
Kendrew in reply to Missus835

I understand completely how you feel. It's yet another medication to add on to all the others.

I've learnt that sometimes, when you weigh up the risks for & against taking a medication, you can't always follow your preferred choice though.

Unfortunately I felt I had no other sensible choice but to take Alendronic Acid when advised by my rheumatologist at the beginning of my PMR diagnosis. My DEXA scan showed there was a very real requirement and so very reluctantly I took it, knowing it too was not without some potentially unpleasant side effects.

I supplemented the AA with some other strategies to combat the osteoporosis and was successful to the point of being able to come off AA 3yrs later. (I didn't experience any problems or consequences from taking AA either!)

I may reach a point in the future when I require it again, but I'll cross that bridge if I come to it!

I've also realised (the hard way!) that there is no quick way to taper down off steroids...as much as I was determined to do this as speedily as possible myself too.

It can only be successfully executed if managed slowly, steadily & sensibly, and there's not one person on here who will advise you otherwise.

I would always encourage people to learn as much as possible about both their condition & medications and carefully weigh up all the risks involved in any decisions they may make too.

Knowledge facilitates the ability to make the choices that are right for you.

Your choices won't necessarily be the same as other people's because your circumstances are unique to you & you alone.

Good luck with your decision making.

Missus835 profile image
Missus835 in reply to Kendrew

You are absolutely right and I do try to gain as much knowledge as possible and that's why a just spoke with my pharmacist, who checked my bloodwork and said yes, a statin is recommended as cholesterol at "medium risk for a cardio-vascular event". So there you have it. However, back in February my now defunct GP said my cholesterol was a bit high but he wasn't worried. Pharmacist says it was elevated last month as well. There is just no one for me to touch base with. Can't get hold of Rheumy but once in a very blue moon and I have no GP. Rock and a hard place situation here in Nova Scotia.

Kendrew profile image
Kendrew in reply to Missus835

That must be quite frustrating for you but it sounds like you're doing everything you can and hopefully by asking lots of questions here, you're receiving answers that help you feel a bit more reassured that whatever decisions you have to make they'll be the right ones for you.

You probably feel a bit alone in managing your condition right now, but I can say from my own personal experience that you'll always receive reliable and trustworthy advice here, and one or more of the experienced & knowledgeable people here will always respond to anything you ask.

I know its not easy but try not to worry..... there are things you can do to help manage most side effects. Some may indeed involve medication but many will frequently respond to other interventions too.

Things will eventually settle down but sometimes it feels relentless doesn't it.

Missus835 profile image
Missus835 in reply to Kendrew

Relentless lately yes. Such is the PMR life, which I've come to accept, as is. It's all the add-ons. LOL. thanks Kendrew for your support and knowledge. I appreciate you very much.

PMRpro profile image
PMRproAmbassador in reply to Missus835

It isn't as effective as a statin. And probably more expensive ...

Missus835 profile image
Missus835 in reply to PMRpro

I have a great pharmacist who is checking my bloodwork done Friday gone by. She is going to reach out to the rheumy to see if ezetimibe would be a better alternative than a statin. I'm probably covered for most of either with a co-pay. I do have Senior Pharmacare, thanks be to the gods. My problem here is I never hear back from the Rheumy about any bloodwork. Today was just my yearly follow-up. So I don't know if it's a 3-month average on the HbA1c, or the cholesterol or anything else. Hopefully my pharmacist will be able to shed some light on it.

Missus835 profile image
Missus835 in reply to PMRpro

Pharmacist recommending take the statin because my cholesterol is 6.62, LDL 4.3. She says it puts me at "medium risk for a cardiovascular" event. The thing is, she says it was elevated in March as well and gawd knows how long before that. So I said, "fill the statin please".

Missus835 profile image
Missus835 in reply to PMRpro

Pharmacist says the HbA1C level is 5.6. The 7.7 was the fasting blood glucose. Thanks once again Pro for your quick reply to my posts. I'm so appreciate of all of you.

PMRCanada profile image
PMRCanada in reply to Missus835

5.6 is a good (normal) result.

Missus835 profile image
Missus835 in reply to PMRCanada

After eating a bran muffin the other morning on my way to ER, the triage nurse says 9 is high. It was the finger prick. I told her I had just eaten. She says "9 is high and it doesn't matter if you just ate." I'm happy with the HbA1c being 5.6

micpenn222 profile image
micpenn222 in reply to Missus835

Missus835 I am also in Canada ( southern Ontario ) and here they call it a " random glucose test " which measures the average of your glucose for the last three months. Prednisone does tend to cause spikes in blood glucose, and I had the same problem and was put on Metformin which has a very low side effect profile. In fact as for side effects taking prednisone makes metformin look like taking a throat lozenge! I wouldn't be too worried about metformin, and once you are off prednisone you'll probably be able to get off it, but the statins are another matter, and possible it may only be a case of prednisone induced high cholesterol, in which you may be able to talk your doctor off them until you're off prednisone and see if it's a true case of high cholesterol.

PMRpro profile image
PMRproAmbassador in reply to micpenn222

A random glucose test is usually a blood sugar level taken just anytime and is a one-off picture, as is a fasting glucose test except that is taken after not having eaten for several hours before the sample is taken. The Hba1c test is the test that measures the average level over 3 months, a different thing altogether,

agappe.com/swiss_en/blog-de....

micpenn222 profile image
micpenn222 in reply to PMRpro

All along they gave me the impression that the random glucose test was the one that took the average over three months. I was defiantly misinformed!

PMRpro profile image
PMRproAmbassador in reply to micpenn222

Lord - hope they DO know better!!!

piglette profile image
piglette

You can get 7.7 reading even if you are not diabetic. You really need an HbA1c reading and it is a good idea to have more than one reading if they want you on diabetic pills.

Missus835 profile image
Missus835 in reply to piglette

Pharmacist is checking with the Rheumy and also Pharm is going to access my last blood work results.

Bcol profile image
Bcol

Hi there, sorry to read of your problems. Regarding the Statins, I have been on them now for many years, low dose, only 5mg. However, like DL the first two if not three really disagreed with my joints and gave me more pain than my OA. The last one I tried Rosuvastatin has been absolutely OK and has also been no problem with Pred. An Hba1c of 5.6 is fine and would count as normal.

Missus835 profile image
Missus835 in reply to Bcol

Thanks Bcol. I'm not sure which one was prescribed as yet, but I do know there are few available if it doesn't agree with me. We sure don't need more pain. I'm more concerned about the cholesterol at this point, but wouldn't want diabetes to go along with all the rest of the mess. Thanks again. Take care.

Missus835 profile image
Missus835 in reply to Bcol

Rheumy prescribed Rosuvastatin 20 mg. Will start this tonight (May 5). Thanks for your info on this. I appreciate it.

Broseley profile image
Broseley

Hi, sorry to hear of your problems, but like others have advised, don't panic! Consider yourself lucky to have such a thorough rheumy. Mine never checks my blood sugar, he says that any diabetes is only temporary while you're on pred for 2 years. Mmm. He also dismisses my complaints about aches and pains saying it's nothing to do with him, though he did suggest I could have a PET scan once I've got down to around 2mg. I had to harangue my GP surgery into giving me a HbA1c test after a year on pred. Luckily it was OK.

I was on statins before pred, atorvastatin, and my cholesterol has not gone up. I have had no issues with taking it.

PMRpro profile image
PMRproAmbassador in reply to Broseley

It is only temporary but it does depend on how severe - high blood sugars that are too persistent will cause tissue damage, whatever the cause.

Missus835 profile image
Missus835 in reply to Broseley

Thank you Borseley. I appreciate your help. I've decided to try a statin on advice of Pharmacist after she review my bloodwork. The Rheumy had not checked last month's (March) bloodwork or she would have seen the elevated levels at that time.

Missus835 profile image
Missus835 in reply to Missus835

Thank you Pro for your support. It is only temporary.

Broseley profile image
Broseley in reply to Missus835

That's good. If you get any issues ask them to change it or reduce the dose. Before my PMR diagnosis I was looking for am explanation for my pains and stiffness and queried the stayin I'm on. The GP agreed to halve my dose. My cholesterol is still the same!

Plains profile image
Plains

hi, I feel your pain. I too have had my sugar creep up while on prednisone. My AC -1 was 7.1 so my GP put me on metformin. It seems to be working as I am now at 6.1. As for the cholesterol medication, I have been on satins for many years. I did have some issues finding one that did not give me leg cramps. Since I am on Actmera it is important that I stay on them. The only way you will know is if you try. Best of luck.

Missus835 profile image
Missus835 in reply to Plains

Thank you. I'm going to try. If one doesn't agree, maybe the next one will.

nuigini profile image
nuigini

I'm in the same situation based on recent bloodwork in Panama. I will await my return to Canada for further testing. Based on the approach taken by our GP with my husband, if the readings are still high, the tests will be repeated in 3 months before discussing medication. Personally, I will do everything I can through diet and exercise to avoid medication, particularly anything for cholesterol.

Missus835 profile image
Missus835 in reply to nuigini

That would be my goal as well. But I also have high blood sugar, bp is high, cholesterol is high. Believe these will settle down as I get the Pred lower, but they need to be controlled for the time being.

Doraflora profile image
Doraflora

hi Missus835. Don’t despair!

We usually eat pretty healthy, but then just after Christmas (why didn’t I reschedule the app) my cholesterol had gone up to 6! Not surprising with all the Christmas goodies.

I desisted going on statins & said I would exercise more and watch what I was eating. At my last test it had dropped to 5.1 - so the doc is happy.

What was your cholesterol reading, Missus835?

Missus835 profile image
Missus835 in reply to Doraflora

6.42 I believe.

Doraflora profile image
Doraflora

hmm, a tad high🤔

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