So the GP upped me to 20 mg

[sidra1968]

for 3 weeks and then we'll see how I feel. He just said my ESR rising was"odd", seemed more concerned with the 11 lb weight gain in 6.5 weeks..as of today I am going o really cut back to like 1100 calories (low carb) and see how that goes. I still feel they don't understand how debilitating this can be when you look fine.

Now just wondering f I should break it up into 10 mg at 5 am and 10 at 5 pm? I suppose I could try it and see if helps with what I feel is the afternoon setback - when my pains seem to come back.

Also, 3rd day of walking..up to 15 minutes. I could go farther but trying to do what was suggested and added 1 minute or so per day so I don't have a setback. I feel more pain now than say 2 weeks ago (started Pred Feb 19th). Makes sense with the higher ESR, I suppose

Thanks for listening!

[SheffieldJane]

I think that you are getting the hang of it all, good luck! I never found a split dose helped that much, except maybe a 1 mg to stretch out the evening dose.

[DorsetLady PMRGCAuk volunteer]

I would stick with the single dose for the time being…and give the extra a chance to work. Don’t change too many things at once… or you won’t know what’s working.

If it doesn’t then maybe consider splitting - but recommendation is usually 2/3rd am; 1/3rd evening.

[sidra1968 in reply to DorsetLady]

ok, thanks. How long is the "chance to work", he said 20 mg for 3 weeks..does that sound reasonable or will I know sooner at least in MY mind and body? Or can it take that long?

[DorsetLady PMRGCAuk volunteer in reply to sidra1968]

That’s another how “long is a piece of string” question . From anything from a few hours to a few weeks…but 3 weeks at 20mg should give a good idea.

[sidra1968 in reply to DorsetLady]

ok thank you, might be coincidence, but my neck feels less acute pain-ish already..like it diffused and is definitely less painful to the massage type of pressure. Fingers crossed

[SnazzyD]

Regards weight gain, what had you been eating? I would be wary of going hard on calories because there is the danger that you won’t get the nutritional input you need with Pred. Most of us can attest to simply going very low carb. I started on 60mg but stuffed my face but only if it was veg or protein and I didn’t put on weight and kept my blood sugars stable.

Another quick weight gain source is salt because Pred makes you retain sodium. We’re all different but at had to have a severely low salt diet to avoid massive fluid retention. This meant to sauces, condiments, processed foods or gravy and it was mighty boring. I reintroduced salt a bit more at under 10mg Pred.

Regards your sed rate, how many readings have you had that are showing a rise?

[sidra1968 in reply to SnazzyD]

That was my third reading, BUT the first one was when I was on a Medrol pack and wasn't diagnosed yet. So it has gone from 6 on Jan 6th -to 24 on Feb 16th- now 33 on March 29th. I think that is correct for the first one, but may have to double check. I eat really well, all home cooked and no processed foods really..haven't been in a restaurant in years because I like cooking and to save money..and I don't eat any salty foods, just never did eats chips. My problem is higher volume of good foods than the average person I think, the calories add up I guess.

[PMRpro Ambassador]

I think 15mins after only 3 days is pushing it a bit - since you say you still have pain. You MUST get things under control first. And maybe instead of 1x 15min do 2x 7.5min - sounds crazy perhaps but it achieves the same and may be easier.

Don't split yet, get things under control as well as you can first, never change 2 things at once. When you do, 2/3 of the dose early in the morning and the rest later enough in the day to extend the effect to 24 hours.

And don't cut calories drastically AND cut carbs at the same time. The idea of low carb is that calories don't count in the same way - you cut the carbs enough to lose weight but you need the other foods to not be hungry.

Not sure what is "odd" about ESR rising if you aren't on enough pred!!!

[sidra1968 in reply to PMRpro]

Thanks, my honest guess is I am not sure he really believes I have it because the ESR is 33..he said for PMR it usually much, much higher.. but am 75% better and quite literally ruled everything else out over the last 14 months with MRI's, xray's blood tests, PT, different muscle meds, you name it. So he acquiesced with the Pred to begin with.

[DorsetLady PMRGCAuk volunteer in reply to sidra1968]

Thanks, my honest guess is I am not sure he really believes I have it because the ESR is 33..he said for PMR it usually much, much higher..

Not always -depending on what study you read, between 6 and 20% of patients with PMR don’t have raised ESR levels.

[sidra1968 in reply to DorsetLady]

Yes, I was happy he admitted that when I said it!

[PMRpro Ambassador in reply to sidra1968]

Not true at all - would usually be much much higher in someone hatching GCA but even that isn't always the case. Snazzy sat in A&E with her sight shutting down and perfectly normal range markers.

[sidra1968 in reply to PMRpro]

Holy Moly!

[SnazzyD in reply to sidra1968]

Indeed! I will add that they were raised above my usual normals but still within the official normal range.

[PMRpro Ambassador in reply to SnazzyD]

Same here, normal ESR is 4-ish, it bumbled along at 16-18 during a flare when I could hardly move!

[sidra1968 in reply to PMRpro]

Also, a big question for you..I am eventually going to need another cervical epidural steroid injection at C-7, my spinal fusion has caused new osteophytes to form and compress my nerves, it is an 11 pain when it happens. Do you happen to know how they do this when on Pred? You aren't supposed to take any anti-inflammatories for 5 days before a cervical injection (lumbar is ok). I have the question in to my GP. Before I started Pred I asked this and he said they generally still do them, but there must be some protocol. I HAVE to get them, so they are gonna have to figure something out

[PMRpro Ambassador in reply to sidra1968]

The "don't take antiinflammatories" is almost certainly because of the increased risk of bleeding with them which is greater than with pred. The mechanism of action is different with pred,

As I suspected - it is the increased risk of bleeding in the cervical area:

hospital.uillinois.edu/prim...

only mentions ibuprofen and aspirin as absolute contraindications and other NSAIDs vary how long they are to be discontinued for.

Other leaflets say "take all medications except blood thinners on the day of the procedure". I imagine it is a question only the neurosurgeon can answer 100%.

[sidra1968 in reply to PMRpro]

Yes, also I also saw (and kind of knew from experience, since this will be my 4th one), that the risk of bleeding is the reason that they say no anti-inflammatories..but did NOT see that pred acts differently. Yay!! Thanks! Ironically, that University is my alma mater! I live very close to it still and attend sporting events!

[sidra1968 in reply to PMRpro]

Hey, just so you know you were correct..he said it is for "NON-steroidal" anti-inflammatories that it can be an issue (i.e. NSAIDS). So I am good to go!

[PMRpro Ambassador in reply to sidra1968]

Thanks! Now you know.

[sidra1968 in reply to PMRpro]

Yeah, I was extra worried because my pain guy is the one who keeps harping on how many steroids I have been on (in general, BEFORE the Pred), when I had the Medrol Packs and his injection over the last year..he blamed my being "upset" in his office on steroids, instead of the fact that I was in massive pain and our finances were getting ruined with all the medical bills..with no relief or answer in sight. I was very worried he would refuse to do it. He still might, technically.

[HeronNS in reply to sidra1968]

Don't you hate it when people blame you for being upset as though the whole situation (being ill, being stressed for any number of reasons beyond your control) are not of significance? You'd think someone specialising in pain management would have a better grasp of the mechanisms which cause pain beyond straighforward physical injury.

Glad you started feeling better soon after the increased dose. I well remember when starting pred at what was obviously a correct dose for me and within six hours sensing that something good was happening, hardly daring to believe it. Hope you are continuing to feel improvement.

[sidra1968 in reply to HeronNS]

Yes, thank..I feel the best today since upped to 20 mg..but didn't do much today because it was yucky out. Tomorrow will be nice outside, so I will do a bit more and see. I cannot tell you how mad I was when I left there - the guy knows me and how happy of a person I am and a big world traveler..so, heck yeah I was upset, I may never travel again if I don't feel better, I couldn't work, we burned through our savings, constant Dr appts trying to figure out what was wrong, couldn't participate in life and stuck in a recliner in pain...yet the jerk blamed my being distraught on the Medrol packs..gimme a break..he'd probably jump if he went through the year I had. He'd definitely be bankrupt by now. And yeah, he's a Pain Management specialist..LOL