Prednisolone

[Blomps]

I have been on Prednisolone now for about 3 years started on 40mg and over a fair period got down to 5mg but then serious flairs back up to 30 on and off. Recently went up to 50mg after severe stabbing pains in neck now back down to 30mg again but taking it slow again. I use the coated tablets as they seem to agree with me more. I also take 20mg Methotrexate every week to help getting off the Steroids. My Diabetes is all over the place so using insulin as well as tablets. It ain't easy but beats the alternative......life is ok a day at a time...Blomps

[Linny3]

So sorry to hear you are having so much trouble with your dosing. Flares are the worst. It always seems so defeating to me when it happens.. I also am on MTX 25 mg weekly. I give myself a shot 2x's a week. I think it is helping. I am taking less pain medication and have been able to decrease pred. by 1&1/2 mg in 6 weeks using the slow method..I have been stuck at 15mg (give or take) for the entire 5 -6 years of having PMR.Good luck with it all

[Blomps in reply to Linny3]

Wow you are going through it too, the stabbing neck pains were something else. The increase from 5 to 50 stopped that immediately but now the slow process once again reducing. Been on 30mg for about a month now so going to drop a 5 every couple of weeks to see.

[Linny3 in reply to Blomps]

Up and Down it is a constant song we sing. My worst area is my low back and hips. They can get stiff and simply lock up and the pain is so bad. Seems to be under control now.Hope yours is soon.

[Blomps in reply to Linny3]

That's weird I'm having hip seizures first thing in the mornings which I never considered a part of PMR. I sit for the first hour with my legs seriously crossed the bad over the good which appears to relieve the pains and lets me get on with the day. Blomps

[PMRpro Ambassador]

Does your doctor approve of such enormous swings yoyoing the dose? If so, he may be creating problems for you. When you have flares do they happen because you have reduced the dose too far? When that happens you rarely really need to go back to the start but it is a mistake many doctors seem to make. Often adding 5mg or at most 10mg to the dose where they flare occurred is enough - and avoid the problems encountered with such high doses.

[Blomps in reply to PMRpro]

Thanks for the message. I had been on 5mg for quite a while and Specialist was happy for me to stay as going lower appeared to bring on flares. Then After a few bad headaches I was getting these extreme stabbing pains in my neck and right temple completely disabling me thats when the specialist suggested rise to 50mg which certainly stopped the problem. My diabetes does not like the quantity of steroids which is another issue. Blomps

[PMRpro Ambassador in reply to Blomps]

Just seems a lot to add - when often less will work if you try it first.

[cycli]

Hi Blomps. You have had 3 years and are now coping with diabetes..did you have the diabetes before PMR or was it as a result of Pred. and the side effect of increased sugar? It also sounds like you need to take control of your doctor. It's YOUR body. They aren't experiencing the condition and have little or no idea what a life lived with this frustratingly unpredictable disease is like. You could also now be suffering GCA so that's probably why he upped the dose. He's guessing. You need more certainty and he doesn't sound like he has much of any idea what's happening to you. Time for a second opinion.

[Blomps in reply to cycli]

Could be a good idea....thanks Blomps

[PMRpro Ambassador in reply to Blomps]

Which reminds me - you do know about the role of cutting carbs drastically when on pred? Just wondered - I'm sure you do.

[cycli in reply to Blomps]

good for you. Let us know what you plan to do and in answer to my query on sugar and diabetes???

[Blomps in reply to cycli]

I have been diabetic for 10 years or more. Got well under control with Michael Mosely 800 calorie plan. Stopped all medication for 2 years then PMR struck. Now take 3 x 500 Metformin and 1 x 80mg Gliklazide and use Humolin I daily

[cycli in reply to Blomps]

glad it's under control. Dr. Mosely isn't the fount of all knowledge but he certainly has some useful and interesting approaches. I like his approach. There are far more experienced and knowledgeable people here who will offer help. Good luck. This disease is certainly a pain.

[Blomps in reply to cycli]

Thanks really appreciated. Blomps

[cycli in reply to Blomps]

should have said "far more experienced people here than me " It read like I meant Dr. Mosely. I'm not diabetic so have no experience in this area.

[Blomps in reply to cycli]

Don't worry it's a real roller coaster with the steroids now. Moseley 800 cal diet got me of all diabetic meds before PMR.

[cycli in reply to Blomps]

bit of a blow Blomps. Now you've got another nice challenge to amuse you, just like the rest of us.

[DorsetLady PMRGCAuk volunteer]

Hi,

As suggested by your recent symptoms, your specialist may have considered that it was GCA, so in that case the increase was justified, but he does seem a bit gung-ho with treating flares.

A second opinion I guess mat not be that easy, wouldn’t imagine you have an awful lot if choice on Jersey.

You might like to have a read of following links - first deals with flares/steroid withdrawal, and how to deal with, and the second is a slower tapering plan, which may stop the flares -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Blomps in reply to DorsetLady]

Thank you really appreciated. Blomps

[strawclutching in reply to Blomps]

Hi Blomps. I am insulin dependant (40 + years) and diagnosed with GCA last October. Started on 40mgs Pred, got down to 7.5 mgs then major flare. I'm now up to 20 mgs (3 weeks since) but still have some pains in girdle area, thighs and knees. Blood test tomorrow to see where ESR levels are before taper, though I sense they're not good. Maybe it's a thing about the diabetes running alongside, but I find inflammation levels affect blood sugars and vice versa. It's a difficult juggling act. I'm not surprised you had to had to go up so high, because I've had the same experience so far. Praying for a good ESR result or else I'll be stuck. Unfortunately for me, I can't afford to lose weight as cutting the carbs causes my weight to drop dramatically and I'm only 8 stones. I feel for you!

[Blomps]

You have been having a tough time strawclutching, I started on 40mg when first diagnosed with PMR and managed quite well tapering with the Methotrexate but when down to about 5mg Steroids the flares started. Had some horrible headaches not actually be diagnosed with GCA but the last stabbing sensation in the neck and right side of head were unreal to say the least. I have dropped to 30mg press now and will be down again in a weeks time.I has a bad time initially on preds but changed to the coated ones and have been much better. I also take a Folic Acid every day apart from Methotrexate injection day. Stomach is really fairly settled but get extraordinary sugar cravings. Life goes on eh???