Prednisolone and sleep deprivation

Hi val 

when end you did take he biopsy were you already taking pred....

 

sorry my text went all haywire..

when you did did your biopsy were you already taking pred. ..?

Yes .....for 6 days before biopsy ......I know a waste team of money and time really.

It's such a difficult thing to diagnose once Prednisone is in the blood stream. 

Hope you are feeling better.  

I'm going to a neurologist today as I have a lot of pains in my head. My GP will not diagnose GCA until I have spoken with a neurologist.  😩

6 days of pred before the biopsy shouldn't make much difference - the signs of the inflammation remain in a different form anyway.

However - the primary reason for them not finding the evidence is that the GCA is not actually affecting the bit of artery they took. The temporal artery is used because it is easy to get at and you can manage without it not because it is the most likely artery to be affected. Even within a piece of artery that is affected they are what are called skip lesions - small affected areas alternating with bigger areas that are not. Having taken the bit of tissue they only look at randomly chosen slides - and perhaps 20 out of hundreds. Also, the surgenon has to be good and so does the histopathologist - unfortunately a lot of places don't have specialist vascular surgeons to do such a "menial" op. 

Medicated sleep will not give you the kind of sleep which is needed anyway.

Thanks; really helpful & - with deference to my other correspondents - actually relevant to myinitial question which concerned sleep!

Has anyone out there experienced terrible stomach aches? Not nausea, although that's bothering me too, but full fledged stomach aches! Now, in full disclosure, I also have Crohn's disease, but that's been under control w/med for several years! Any input would be greatly appreciated!

Tramadol. Really!!!!!!!

Many, many thanks - really helpful advice

Crohns affects lower g/i tract - is that what is painful or is it your stomach? Pred usually calms down Crohns flares. If you have pain it would be a good idea to check it out with your doctor.

It seems to alternate btw lower abdomen and upper stomach. I sorta think gas is involved, but not certain. Sooo many different symptoms! Ughhh

What other medication are you on?

 

Yep, Tramadol. At times, a year or more ago, when the pain for me was at its worst, and I couldn't get my GP to diagnose PMR, I asked for a pain med. Initially, he prescribed Vicodin, but it was largely ineffective for me. So he changed it to Percodan, which hammered the pain (and my consciousness!), but was too short-acting. In addition, the whole debacle about opiate abuse was at its peak, so he changed it again to Tramadol. And I'm good with it. When I've got access to Prednisone, I don't need the Tramadol, and on those days when I do need it, I only take 1 (50mg) tablet, but yes, its a god-send for me. Unlike the others, it seems to act in time-released fashion, with steady, low-grade effects that last 20-24 hours. Its a fantastic med when needed! ;-)

For Crohns I'm on mesalamine and omeprazole daily and loperamide as needed. Also, cymbalta daily and hydrochlorothiazid as needed for my paralyzed diaphragm in order to not retain water in my lung! Wfewww! That's alot for a young 67yr. old former drum majorette! LOLOL...seriously, I hate taking meds, makes me feel like such the stereotypical elderly folk...oh yeah, I guess I am one! Lol..

So now there's prednisone thrown into the whole mix! In the words of Dory, "just keep swimming, just keep swimming". That's what I'm trying to do!

Hi Regulator, if Tramadol works are you sure it is working on the suspected PMR? Tramadol really is pretty useless for it. You could have something else that also reacts to Tramadol of course and also may react to steroids.

I tried it for a month and it was not for me and that was only 10mg. The hospital was well impressed I stopped as they don't like it, 

PS. Forgot to say it was for RA not PMR

PTO -

You are essentially asking me whether I know with confidence that PMR is what I have (?), and I'm afraid I can't answer that. I wish I could. I certainly suspect that it is in-fact what I have, because through medical visits and personal research, I simply haven't been able to identify anything else with the same set of symptoms or reaction to treatment. However, the fact is that yes, its entirely possible that at least in theory, it 'could' be something else. I simply don't know.

As for Tramadol and its entry into my personal equation, I believe that it's initial prescription for me was for earlier (unrelated) back pain, and that it simply found its way into the later PMR picture almost by association or 'carry-over'. Is it "ineffective" for pain that stems specifically from PMR, as you've suggested here? My answer to that would be a resounding "no"! I'm no pharmacologist, so I can't speak to its technical 'mechanism of action', or whether its only effective on certain types of pain; I can only tell you that it works marvelously on most 'any' form of pain that I generally experience, including the bilateral pains in my upper arms, shoulders and neck that have led me to assume PMR.

That said however, after considerable pressure, I was finally able to get my local GP to provide me with a short-term (30-day/30-tablet) supply of Prednisone here yesterday, to help last me through an upcoming visit with a rheumatology specialist. Yay!!

So, I will now be able to try (for the first time), daily doses of Prednisone alone (without Tramadol) for the next several weeks to see if the pain relief from Prednisone alone is comparable to or better than Tramadol alone, and I suspect that it will be. If so, will that be the definitive evidence of PMR that I and others seek? No, probably not, and I don't know that there ever will be such evidence.

10 mg? Yikes! I'm told the standard daily dosaee is anywhere from 100-150 mg. In fact, there are numerous postings by folks out there who take as much as 300 mg of Tramadol daily for other ailments. That makes me wonder whether the effects of a 10 mg dose would even be discernable?

Your quantity for Prednisone is incorrect. 

Rheumatologists usually start at 25mg per day ...tapering down slowly.  ( that also depends of the body weight of the said person )

Your doctor should be checking your levels of CRP which is a good indicator for PMR  if you have symptoms...

"Two blood tests – erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) – can be used to check the levels of inflammation in your body. ... As inflammation is a feature of many conditions, high levels don't automatically mean you have polymyalgia rheumatica., 

Yes - I wondered if you were on omeprazole or the like. It has a reputation for causing abdominal problems. You could ask to try another PPI or you could try ranitidine, sold as Zantac, which does the same thing almost as well but with different side effects.

Hmmmm - in that case, maybe the GPs are correct in their scepticism. Most people don't get relief from PMR with Tramadol.

Do you have back pain? Is at night and then relieved by movement in the morning? If so - when at night? Soon after midnight, waking you, or early morning, say 4am?

No - despite what many people believe and assert on the forums, just because the pain responds to pred DOES NOT mean it is definitively PMR. It just adds to the overall jigsaw.

Nor do normal levels mean you don't have PMR/GCA - 20% of patients have levels "in normal range", i.e. probably below about 25 for ESR. Doesn;t mean it is normal for them mind!

I'm sorry? What "incorrect" quantity of prednisone are you referring to here?

As for the balance of your comment, yes, I'm aware of the various symptoms, treatment regimens (including tapers), blood test monitors, etc. Please see this link for my original posting entitled "No Access to a Rheumatologist, But Could These Be The Signs of PMR"? . . .

https://patient.info/forums/discuss/no-access-to-a-rheumatologist-but-could-these-be-the-signs-of-pmr--674002

Low-grade (chronic) and at-times severe (or acute) back pain have been a fixture in my life for well over 30-years, from minor incident-based injuries or abuse to routine stiffness with age, and x-ray after x-ray, MRI after MRI have detected nothing abnormal or notable other than  . . . "the usual arthritic conditions typical of a 66-year old male" (quote/unquote). Its restricted to the lumbar area (L4/L5) for the most part and it does tend to improve with movement or exercise, but again, its been around for decades before any of these upper-body PMR symptoms and by all indications is completely unrelated. And, as you've pointed out, unlike PMR, it responds quite well to opiates or tramadol.

Also, like I said here earlier, now that I have a short-term 30-day supply of prednisone to work with, I can take it and it alone (without tramadol) for the upper-body PMR (or PMR-like?) symptoms, to see whether it alone offers the relief (including pain relief) that tramadol seemed to offer. And I strongly suspect that it will. But I'll stand by what I said earlier about tramadol . . . tramadol (even at a fairly low dose), did in-fact 'seem' to relieve some of the neck, shoulder and upper arm pain. Not all, and not even most of it mind you, but it sure seemed to lessen it. However, now that I have prednisone, and now that I've been made aware that tramadol and related opiates purportedly do NOT relieve PMR symptoms, it will be VERY interesting to see just what happens to my symptoms when I take the prednisone alone.      

A spondyloarthropathy can present almost identically to PMR and will also respond well to pred intitially - but will also respond to other pain relief though usually better to NSAIDs. I'd think the MRIs would have identified signs - but not necessarily. It is worth a thought though.

How much has you doctor given you for the 30 day trial?

30-days, 30-tablets, 10-mg each, enough to quiet things down a bit until the rheumy can make a formal diagnosis one way or the other on October 10th.

I have a preexisting back problem which sometimes causes me a great deal of pain and I find Tramadol a very effective painkiller.  However when I started getting what I now know as PMR pain Tramadol didn't touch it. I was taking 2x 50mg 4 times a day ( the maximum dose) and I was certainly a bit woozy - but still in pain! When, at last I was diagnosed 30mg of Prednisolone worked like magic in less than 12 hours.

Eileen,

Nope, never heard of this 'spondyloarthropathy'. I'll have to look into that one. So thank you for that. But I should probably take a minute here to try and make one or two things perfectly clear. I don't care for drugs, and I don't want to take drugs, of any kind really, unless I absolutely have to, and that includes prednisone. The same applies to the diagnosis itself. I don't much care if its PMR, fibro, run-of-the-mill arthritis, or brain cancer! Honey-badger don't care!! All I care about is long-term relief from the debilitating shoulder and upper arm stiffness and pain, and I'll take whatever diagnosis or whatever drug treatment is required to achieve that end. Does tramadol work for the pain? Yes, it does seem to. But who knows? It could be some odd sort of placebo effect. I won't know for sure until I avoid it completely, while taking prednisone alone. Do NSAIDs work on it? No, not by the bucket-load! Not aspirin, ibuprofen, naproxen or tylenol. None of 'em, not even in 'gram' quantities.

Kate,

In summary, I think this is essentially what has been happening to me over time. The dates and periods of time between visits and scripts for prednisone and tramadol, and the few instances where I had temporary access to prednisone (via the family veterinarian and ER visits, etc.), have muddied my ability to make much of a reliable analysis of things. There were times when I'd take prednisone and tramadol together, and I'd rightly or wrongly attribute the apparent benefits to tramadol, when perhaps it was the prednisone. And, there were times when I'd take either one alone. Given the nicely long-lasting effects of a single 20-mg dose of prednisone, its just impossible for me to say whether I noticed a difference back then. Who knows? There is certainly such a thing as "placebo" effect. But now that I have a decent (30-tablet) supply of pred, I think I'll be able to resolve that question in a matter of days, by taking the pred alone, and I will certainly post my findings at that time. Thanks again.

Hi everyone...at the risk of sounding like a Big Buzz Kill...is it just me or does anyone else feel some folks are kinda playing around with different meds and different dosages?? Prednisone, tramadol, etc. I don't know, but I'm trying to really follow all doc's instructions. Again, I'm certainly not perfect but it just seems these are some pretty potent drugs to be fooling around with. I know I sometimes have a difficult time keeping track of my symptoms as my regulated dosages increase or decrease!! Please don't take my observation the wrong way, I'm just a concerned pmr'er! Btw... Please , enough already on the ins/outs of coated prednisone! More info than I need!

Yup, yup, yup, I knew this was comin' - that train is never late!

You're quite obviously talking about me here, Lynda, and no, nobody is "playing around" with anything. If the doctors cannot diagnose it after almost 2-years, and you're left to going it alone, then that's just what you do - you try to address and identify things yourself. The consumption of "veterinary" supplies of prednisone should have been a clue. But there's no need to agitate things by posting an unneecessarily lofty and purposefully accusatory comment like this. How bout you just stick to your treatment and I'll stick to mine. Are we good?

Hope things go well with the rheumie. In U.K. we can only get 5mg tablets max. size. That is why I asked my question, as the normal starting point is 15mg, although some people find 10mg works.

Yeah we ARE good, never were bad! I was just concerned, not "lofty". If you knew me, you'd know I'm one if the least judgemental people around!! My statement was strictly out of concern and nothing else!! And it's true, the amount of times my dosage has been changed over the past 6 weeks has been terribly confusing, so much so that it's hard 2 keep up on a daily basis! So to be clear, there was NO judging on my part. Whatever floats your boat and keeps you out of pain! I wish you well!

.....don't know why, but my feelings are hurt and I'm feeling the need to elaborate right now re; my "judgy attitude". Full disclosure, I'm a retired kindergarten teacher of 30+years who (through a crummy set of. circumstances) ended up living out of my car for 7months! My favorite niece is "hooked" on pain pills with no end in sight, and my dear mom recently passed after a long battle with Alzheimer's. So, please DON'T put me in a holier than thou box! We've all got our stories, but most people Truly Care!!

Oh fully understand that - none of us WANTS to be on any drugs. But the right differential diagnosis is fairly important in this case because some drugs have worse long term adverse effects than others and some diseases cause more damage than others. PMR itself doesn't lead to joint damge as a result of the disease process - other reasons for the symptoms, which also respond to pred, can do. And letting that damage continue may result in needing stronger medication or even joint replacement surgery,   The fact that some pain killers work and others don't is also a brick in the wall of diagnosis

My sister who had two hip replacements was never on such a high dose as that and she was in so much pain, no wonder people have problems getting off it

I hope you get this sorted out soon. It is very difficult to be in pain and not be confidant about how to treat it or have no certainty about what is causing it.

Good luck with you appointment at the rheumatologists.

I have been prescribed Tramadol for 15 years for the very serious bouts of pain I get from nerve damage caused by an injury and a lot of surgery to my spine.  When this flares up I need large doses of Tramadol to get some relief.  I can go months at a time when I don't need any at all, and therefore don't take any. I think the problems arise when people take these drugs to alter their moods rather than to ease pain. I think this is what leads to dependency.

The real problem with Tramadol is that it is an opiate and is addictive. People take it for pain and then just get hooked on it, in fact after time it does not work so well, so they take more.  You are doing the right thing by only taking it when you need it.

PTO - Thank you! I hope so too. In fact, I'll be disappointed if they rule that its not PMR, but that's beyond my control. At least I'll finally have access to an actual 'specialist'. And, if they decide that its not PMR, hopefully, they'll have some idea of just what it is!

As for the dosage, I can safely say that it takes more than 10-mg per day to have much of an effect on my symptoms. It helps, and I'm glad to now have it, but its not really enough. I'm a relatively large fellow (6'3", 275 lbs.), and ideally, given my limited experimentation with it so far, I will likely need a minimum daily dose of 20-25 mg to start the treatment process.

Kate,

Thank you very much, and I too hope that the rheumatology appointment goes well. I'll be traveling over 500-miles to see them, so its a relatively important visit. Will they conclude that its positively PMR? Who knows? Will I be disappointed if they conclude that its not PMR? Yes, I think so. But if that's the way it goes, then hopefully they'll have some answers about just what it might be. Otherwise, I'm back to square-one all over again.

Lynda,

I understand and appreciate your confusion. That same confusion is precisely what led me to do the 'experimentation' with these two meds that you were so critical of. I can also sympathize with (and will convey my condolences over) your difficult personal circumstances, including the recent loss of your mother. I too lost my beloved biological mother to Alzheimers in July of 2016, and my only grandchild (a 3-month old granddaughter) to SIDS, last November. Life is not always easy and I wish you the very best as well.

Thank you sooo much for responding to my post. I can't tell you how much it meant to me. When I typed it, I was feeling sad and defensive and had an overwhelming need to explain where I was coming from. Like I said. we all have our "stories"! But with that being said, we're all in this together....just trying to figure it all out and live a good quality of life!

I first started seeing my GP at the end of last year with a flare up of my usual back problem.  He prescribed Pregabalin.  The pain and stiffness in my hips and groins got steadily worse and I developed shoulder and upper arm pain which really got me down. None of this was typical of the nerve pain I usually experienced. The GP get upping the dose of Pregabalin until, I suppose luckily, my hands became very inflamed and my fingers seized up. He then took a blood test which showed inflammation levels so he said he would contact a rheumatologist but in the meantime I was to take 30mg Prednisole for 6 days and then stop.  As I said before, it worked like magic but within hours of stopping all the pain returned.

He then told me to take 6x5mg tablets (we only get them in 5mg and 1mgs)for 5 days, decreasing by 1x5mg tablet every 5 days which would last me until my appointment with the rheumatologist. 

I am wondering if you would be better to use your supply at 30mg per day for 6 days.  You will be in pain when you stop but at least you would know.  10mgs is a good dose to be on when reducing but I am not sure if it is enough to deal with the initial inflammation and give you a conclusive result.

Please ignore me if this is a dreadful idea - I have no medical training whatsoever but having scoured this site I think I probably now know more about PMR than My GP!!

Above all - getting into this sort of yoyo use of pred is bad - a lower but steady dose of pred is far less likely to cause problems. But how you get doctors to stop playing like this defeats me.

Thank you, Kate!

Other than the Pregabalin, your experience is very similar to what I myself have gone through this past year or two. Early-on, I went to my local ER with relatively severe PMR (or PMR-like?) pains, and the ER doc simply gave me the standard packet of tapered-dosage Prednisone tablets (just as you've described), which he probably received as a free sample from his Big Pharma sales rep. A total of perhaps 24-tablets of unknown strength, to be taken 4-5 each day for a day or two, then 3-4 for a couple of days, etc., etc., until all were consumed. And just as you've said here, after those 7-10 days went by, I had 'miraculous' symptom/pain relief that quickly returned in full-force within 24-hours of cessation or abstinence, with no available refills, and no other way to replenish the supply. Some months later, I went and did the very same thing again (i.e., visited the ER and got another sample pack of Prednisone). In part, this is why I have said . . . "follow the money", because I firmly believe that the overall business plan for the current U.S.-based health care industry is to continue accessing your wallet and/or your insurance, and that goal can best be accomplished by requiring further visits. End of story!

However, I don't believe this "profit at all costs" approach applies so much to VA Health (Veterans Administration Health). In fact, despite the bad rap that the VA seems to routinely get almost nationwide, my experience with them has been quite the opposite - my experience with them has generally been 'superior' to privately insured health care in my area.

Anyway, I greatly appreciate and completely follow your logic (and the related suggestion) regarding the daily dosing (i.e., stepping it up from 10-mg to 30-mg daily for as long as my current supply holds-out), and I'm confident that you're right - I would indeed be absolutely pain free for those first 8-10 days or so. I know this from past episodes, when (by virtue of these ER visits and the free sample packets), I've been fortunate enough to have sufficient supply to actually take the stronger doses. But unfortunately, my GP has only given me 30-tablets this time around (silly rabbit, I probably should have asked for more!), so that approach would leave me none at all for the remaining 2-3 weeks before the rheumy appointment on 10/10/18.

However, the more I think about it, despite the added period of pain that would likely be involved with that approach, that revised plan just might prove to be a good one for another key reason . . . if I take the stepped-up dose (30-mg each day) until I exhaust the supply, and I just suck-it-up and endure the pain for the remaining couple of weeks, that 2-3 week period of abstinence might allow my ESR and CRP blood markers to climb back up to elevated levels again, just in time for the blood draw that the rheumy will likely require. And that's not a bad thought at all, because I've been harboring some concern that if I stay on the daily low-dose (10-mg) approach all the way up until that appointment, those same diagnostic bio-markers might be depressed enough (towards normal ranges) to convince the rheumy that I 'don't' have PMR (when I actually do)! And that would be soul-crushing for me at this point.

Anyway, thanks again for this thoughtful suggestion. I'll give that some further consideration here today (and tonight), but I might just take that approach starting tomorrow morning. Why not? Other than a couple of weeks of added pain, it can't hurt any!!  

Eileen,

I know, right? Its crazy! But hopefully, now that I have a referral to a rheumy in a reasonable timeframe, this tail-chasing journey will come to an end for me on 10/10/18.

Kate -

I just completed and posted a rather lengthy reply (and thank you message) to this recnt postings of yours, but the moderators (for whatever reason), have declined to post it as yet, saying that its awaiting moderation. That was over 10-minutes ago. Very strange. I've not seen them do that before. Anyway, to summarize, your suggestion about stepping-up the daily dosage from 10-mg to 30-mg was a very good and sound one. Hopefully, the moderators will soon realease my detailed posting that said so in far more detail.

Kate -

[Regulator] ?2 Regulator kate50809 15 minutes ago

This reply is waiting to be moderated

We sometimes need to review content before it’s published to make sure it meets the requirements in our Terms & Conditions.

The posts go through a filter.  Some posts are flagged to be reviewed by the human moderator.  This will, of course, take time.  The machine has no brain so often flags things which are perfectly fine.  

500 miles??!! Wow! I truly commend your tenaciousness! I guess we all do what we have to do. But that's one hell of a trek! Best of luck and keep us posted!

Righto! This one was fairly lengthy too, so that might have been a trigger as well, but its all good! I certainly don't have any issues with moderators regulating the content of their own domain. 

Yup, about 515 to be exact. Crazy what a guy will do for pain relief, right?

Hi all!! Well tomorrow's the big day! Can't believe it's already here as I feel I've been waiting 4ever! Uber's picking me up @4:15am (Ughhh) to depart for the airport. I'm so Excited,(needles to say) seeing my youngest daughter and meeting my grandson 4 the 1st time! However, I'm also a nervous wreck! Haven't flown in over a decade...haven't even had a vacation in that long either! And to be sure, my health was vastly better than now! I'll have my service dog and a portable oxygen concentrator, so my hands will.be full. Please fellow pmr'er folks send me good vibes....I need them!

To add to Anhaga's comment - this site is based in the UK and the moderators work a normal day shift, Mon-Fri. So things taken for moderation when posted in the USA at weekends and overnight in the UK take longer.

A recommended starting dose is the lowest effective dose in the range 12.5 to 25mg (2015 Recommendations) and normally most rheumies would start with 15 or 20mg, reserving the option of going up to 25 if unsuccessful.  If 15mg is enough it does leave you the option of longer.

https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf

I am in England and don't know much about your healthcare system.  That you should be sent home from hospital with a packet of tablets of unknown strength and no follow up appointment sounds appalling.

Whatever you decide to do now I hope goes well with you.  Good luck with the Rheumatologist. Fingers crossed that you get the diagnosis and treatment you need.

I SECOND THAT###

Good luck Lynda

Have a really great time with your family. 

You'll be OK dear. Flying today gives a lot of help to the handicapped and those who are finding flying difficult. 

Wishing you a safe journey and a return trip home without any problems. 

I fly often and I always find that staff are most helpful. 

Bon voyage

Di. 

If it's the long post above I had a post deleted once because I was rude about the pharmaceutical industry, using the common term we all use and which you used in the post.  I think that was enough to delete my post at that time, but they aren't as strict now as they used to be.  

Kate -

Thanks again to you and all others here for the well-wishes, and yes, whether its PMR, back pain, prolonged dizziness or just a simple ear infection, having an ER physician toss a sample pack of medication to you and send you packing here in the U.S. is almost routine anymore, with the expectation that you'll need to make another (billable) follow-up visit to your primary care doc soon thereafter. Sad, but its been happening for years.

Thank you as-well, Lynda! And I join the others here in wishing you safe, enjoyable travels with all of the positive outcome(s) that you're hoping for.

Yup, I was thinking the very same thing. That 'moderated' posting from yesterday has since been approved and successfully posted, and it doesn't appear to have been edited in any way, which is great, but you're spot-on about the "pharmaceutical industry" term, because I had done just that! In addition to being an exceptionally long post, I had used the term "Big Pharma". Hence, it appears that I dodged a bullet of sorts.

There you go - that post got moderated too!

Has anyone out there experienced weight gain (not #'s gain on scale) but kinda redistribution of weight? In my case, I've gained about 3-6 lbs. which fluctuates on any given day. But it looks like I've put on 36lbs im my arms (upper and lower) and my stomach/abdomen area! I'M NOT KIDDING either!! My eating habits haven't changed well, maybe they're less so) due 2 stomach aches/ upset stomachs. Please, if this resonates with any of you, please let me know. I'm in Texas right now (vacationing with my daughter) and it's 110o today and all I want to do is wear a long sleeve shirt to cover my chubby little arms! I'm dying people!

Most people on pred experience weight gain - especially if they don't change their eating habits and cut out processed carbs.The weight gain with pred can be due to both fluid retention (cuttig salt in your diet will hep that) or fat - pred changes the way your body processes carbs, especially "white" ones and excess insulin turns the glucose into fat which deposits in particular places: around your mid riff, on the back of the neck and around your face which is what causes the "moon face" look.

I gained weight all over with PMR due to lack of activity but when I finally started pred it moved to the places I mentioned. When I learned the secret of carbs and cut them drastically - it melted away from first my mid-riff and then my face. Many others on the forums have put on weight in a similar way - and many have lost weight in the same way.

Thanks Eileen...the only thing I've not come across yet is weight in your arms. For whatever reason, that seems to be a big problem right now just about as bad as my midriff! Is that normal? Unfortunately at this time sleeveless tops are a thing of the past for me! Hard to do in 100+ heat!

Nothing is "normal" with this journey - everyone is different. Bingo wings arms are probably fairly common amongst patients on pred.

I wear vests - with a lightweight shirt. We also have temperatures around the upper 90s - it's fine.

"Bingo wings"? Lol...I'm not exactly sure what that means unless you're referring to lose skin under arms. In my case, it's that my whole arms (all the way around) are getting "hideously" larger and doing so quickly! I'm even noticing some of my t-shirts are snug in the arms!

Yes - that's what I mean. But yes - I also found my arms seemed to gain size all the way down. I bought a new watch at one point when I was losing weight and it fastened nearly half an inch looser then than now - and I'd needed it because my old watch had a wrap around strap that was now so loose that it almost fell off. I had to stop wearing a couple of shirts because the sleeves were really tight on my biceps - and now I wear them again with space for a lot more arm!

Cut carbs - and it will probably go slowly. I did notice it disappearing.

Does anyone out there know if it's ok to have a local steroid injection in a painful shoulder/upper arm while also taking Prednisolone 15 or 20 mg for PMR?  NBThe shoulder injury is a muscle strain or pull from playng golf;  I am pretty sure it is unrelated to the PMR, which is so far greatly improved after 3 weeks on Prednisolone - in fact, no pain or discomfort anywhere.  The practitioner, who has twice before given me steroid injections in other areas of the body (my wrist and foot) - very successfully - will inject with Kenalog or depomedrone and typically only 0.5ml dose for a shoulder. He is Chairman of the UK Association for Chartered Physiotherapists with a special interest in Orthopaedic Medicine and Injection Therapy.

 

I think quite a lot of people with PMR have steroid injections in various parts of their body. I had one in my shoulder recently which was incredibly painful and did not work. I suspect the rheumatologist, who was pretty pompous, just missed the spot. 

About one month before diagnosed with PMR, an ortho surgeon shot me with Kenalog to my torn rotator cuff three years ago. I don't know what the dosage was.  It started as knot below my shoulder blade.  I had no more trouble with it until just recently.  I started on 15 mgs Pred after PMR diagnose which I was on and/or reducing when he gave shots in both knees and one hip--not all at the same time  He eventually replaced one knee last year. I was on 6mgs pred at the time. I have been on Prednisone for 2 1/2 years, currently on 9 mgs.  ( I recently had a flare and had to up to 15 from 7).   

I recently had a particularly painful shoulder that was keeping me awake at night, and my rheumy and I discussed giving me a steroid injection, but he was reluctant and preferred that I ‘put up with it’, which I did. I was on 9mg Prednisolone at the time. I was glad that I didn’t have the injection, as the shoulder pain has improved. 

No problem at all - it is a much more local and concentrated effect. It will almost certainly improve the effect of your oral dose as well so you MAY be able to reduce a bit while the depot injection is active. Don't get too enthusiastic about reducing though - or you may have a nasty shock when the depot injections wears off after a few weeks!

The rheumie was private and I think he boosted is paycheck by offering injections as well. He was very keen I should go back and have my left shoulder done at another visit.

Hi Eileen,

I am interested in your post about eating habits with PMR and Pred in particular learning the secret of carbs and cutting them drastically...do you have anything that you can send me please

Sorry, nothing I can send you. It's fairly basic physiology: pred changes the way the body processes carbs and also causes the liver to release random spikes of glucose into the blood. This triggers insulin - the BS level tumbles and the result is hunger to get the BS back up. By cutting processed and simple carbs and eating predominantly above ground veg (lower in carbs) rather than roots and fruits and moderate amounts of fat and protein you can moderate the high BS levels due to pred, reduce the amount of inslin released - and it is insulin that makes excess sugar into fat deposits. It also contributes to keeping the Hba1c lower - and avoids the development of pred-induced Type 2 diabetes,

A really good exposition of lowering carbs put simply is to be found on the dietdoctor site:

https://www.dietdoctor.com/

You don't HAVE to go keto - everyone will lose weight at different amounts of carb so starting at a moderate level makes any dietary change easier to get used to. If you gain/don't lose weight - cut the carbs further. You will have a far healthier diet - no processed carbs is not a bad start!