Off Prednisone 2 weeks: 9 months on Prednisone... - PMRGCAuk

PMRGCAuk

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Off Prednisone 2 weeks

Heinrich7
Heinrich7

9 months on Prednisone. Tapered off. Feeling stiffness in legs arms shoulders. I feel it is out of my system. Will see how my body continues to function. Only had nurse practitioner now finally seeing a GP. Luckily a sports medicine doc at walk in clinic diagnosed PMR last July 2018. She also referred me to a Rheumatologist. Who said inflammation levels back to normal.

Concerned about depression, panic attack. I keep reaching out. Want to feel better emotionally. (Mentioned low b12 before).

I pray for those who have other complications such as CGA, etc etc. One day at a time.

29 Replies
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Nine months is a short time to be on pred for PMR (average is 5.9 years). If you are experiencing symptoms again, I fear that your PMR is still active. If you stop pred before the condition goes in remission, the inflammation will build up and cause symptoms. Perhaps you should have your GP continue to monitor your bloodwork over time as the CRP and ESR levels may rise again (if they did prior).

As for the depression and panic attacks, please do continue to see support. Having an auto immune condition can really alter one’s life, adjustments need to be made, and medication can impact our mental health. Not sure if these are new concerns/experiences, or ongoing and perhaps worsened by your circumstance.

Glad you are feeling good about your GP, hopefully they can assist you moving forward.

Feel free to reach out to this forum anytime. You are not alone.

Heinrich7
Heinrich7 in reply to PMRCanada

Thank you!

Heinrich7
Heinrich7 in reply to PMRCanada

Taking all your info into consideration and will apply it to doctor visit. Thx!!!

That was a quick journey just see how you go , but if you do feel that the old PMR pains that you remember are returning don't be afraid to ask for extra help or go back on medication.

Getting over PMR isn't a race it's a slow walk so there is no reason to feel anxious or shame if the first full taper doesn't work.

Listen to your body , and try and keep as calm and positive as you can , it helps reduce the pain but also is vital for your mental well-being no matter what condition you have got.

Eat well , take a vitamin/ mineral supplement if you don't already to help with the extra body repair, drink lots of fluids , use whatever relaxation techniques you have and build up your strength and exercise .

Visit us whenever you need , and don't forget we are here when you need a hug xx

Heinrich7
Heinrich7 in reply to Blearyeyed

Thank you! Amazing support. Thanks for awareness raised regarding possibility of PMR still in my body and fact that may have to take Prednisone again. Any advice on good mineral supplement. Do take vitamins. But open to suggestions.

Blearyeyed
Blearyeyed in reply to Heinrich7

Taking a good quality vitamin and mineral supplement including magnesium , zinc , selenium , potassium , Vit D , A, C, E, K and B complex each day can help the body with all the extra work it does in dealing with inflammation ( even while on Pred) and repair , and to keep body function going as it processes medications. Omega 3 ( and not 6) is also good for joint care and inflammation.

Dealing with illness does deplete your nutrients.

I take mine mid breakfast for maximum absorption.

PMR sufferers are regularly given a Vit D and Calcium supplement to take on prescription anyway because these are two nutrients that protect you bone health but can become depleted with inflammation and use of steroids.

It might be an idea to have your levels of these checked with some blood tests and remember that if you do return to taking Pred these additional supplements should be prescribed too.

Having a low sugar / low carb often gluten free with no highly processed food diet can help stave off the worst side effects and reduce Fatigue.

Having lots of fluids each day , like mineral water or green tea ( any natural flavours are fine) help in general too , especially with maintaining kidney health and preventing tiredness.

Eating a good variety of fruit and vegetables , proteins like oily fish , shellfish , chicken , eggs and either dairy or non dairy products is good .

Healthy oils , nuts , varied beans and pulses , chickpea products , buckwheat , nut flours and butters are also good foods.

Having probiotic yoghurt with your Pred can stop stomach issues when you take it but it is also good generally for gut health , add local or Manuka honey to sweeten .

Honey or natural Stevia for sweetness in desserts instead of sugars , syrups etc.

Making sure you balance activity , both normal lifestyle things and exercise, with plenty of rest and relaxation is important to prevent flares and tiredness but also help with your mental health.

Do what you need or want to do , not what you think you should , and never be afraid to ask for help , cancel things , take a nap or have relaxation time , or pass on the chores .

It all helps with you concentrating on you and coping with the " New Normal".

Always take time for your mental health and do things that make you feel less stressed as keeping calm helps reduce flares of pain.

Patience and serenity , with yourself , with others and with PMR, is key in coping with dealing with a long term condition like PMR.

Take care and let us know how you get on or if you need any more help , we are here for you. xx

Nanna71
Nanna71 in reply to Heinrich7

The folks here are people with plenty of experience and I read all of their posts for wisdom as I am less than a year with RA and now, PMR as icing on the cake. Speaking of which, I have upped my sugar intake, whether white sugar, honey, or in fruits and juices as this disease (others too) deplete blood sugar which we all need for our cells to function. (see website, cows eat grass for supporting studies.)

I have not subjected my body to big changes in diet as that is just another stresser for me. I eat plenty of meat, eggs, and dairy for bone health because of the prednisone. I have cut out pies, cakes, cookies and the things that make for weight gain which is almost inevitable on pred.

I take supplements like Vit. D, folic acid, calcium, a multi vitamin, mineral tablet every day. I make my own bread (wheat, oats, rye) and cook all things from scratch.

I started to keep an eye on the value of vit. K2 so eat butter, scored some liver at the meat store in town, and of course, chicken.

I was slightly overweight before this disease, lost about 30 lbs because of the pain, and now am maintaining a normal weight, no ups, no downs.

I also grow most of my vegetables and the lettuce is just about ready for a salad. green onions too.

I hope this is helpful.

PMRpro
PMRproAmbassador in reply to Nanna71

"I have upped my sugar intake, whether white sugar, honey, or in fruits and juices as this disease (others too) deplete blood sugar which we all need for our cells to function"

For the vast majority of patients on pred that would not be a good move - and it is an old wives tale that the body needs sugar to function. It derives glucose from any carbs - and when deprived of carbs, it makes the glucose the brain needs from fat stores in the body. When on pred, the risk of weight gain or developing steroid induced diabetes means that we should CUT our carbohydrate intake, especially unnecessary sugars of all sorts, whether on a spoon, as honey or fruit in any form, in particular fruit juices.

You have been very lucky - you haven't gained weight. But most people on pred would if they added sugar rather than removing it from their diet. Sugar is also very pro-inflammatory and often makes the symptoms of inflammatory disease worse.

Nanna71
Nanna71 in reply to PMRpro

I have read on many posts exactly the part about carb reduction as you said. I really combed the sites for studies and proofs and found that sugar is not the demon it's made out to be. I totally give way to your experience and knowledge. Also, it is true that I am doing well just as I said. I found the site I referenced was somewhat more reasonable and well documented, so I go with that. The diabetes thing is an unknown for me so I wonder if I should look up those related things?

Have no information corroborating that sugar is inflammatory.

Hidden
Hidden in reply to Nanna71

healthline.com/nutrition/su...

Nanna71
Nanna71 in reply to PMRpro

I just read my reply to you and it does not read the way I intended. I intended to give you thumbs up because your knowledge and experience is so extensive. I also wanted to say that what I said is true about sugar being demonized more than is justified. Also want to point out that there is 30 calories in a spoonful of sugar as compared to any fat which = 100 cals. Giving up cookies, cakes, pies and such is like cutting carbs I guess, but also cuts calories because of the fat and flour. I don't use sugar as a food group, just a condiment really, and I don't skimp.

Question - Does the blood work show if diabetes is on the radar?

Hidden
Hidden in reply to Nanna71

They should check your hba1c every three months if you are on prednisolone. It causes sugar spikes which when combined with simple carbohydrates like sugar, flour, etc can intensify and prolong that blood sugar spike. This can over time push up your blood sugar and push you into prediabetes and diabetes.

niddk.nih.gov/health-inform...

PMRpro
PMRproAmbassador in reply to Nanna71

I took it that way - don't worry!

Even when it was first presented I never subscribed to the fat story - which now has been shown to have been based on some very dodgy and selective research done in the past. It simply didn't fit with the biology/physiology I had learned. Calories are not the question - while carbs may have only small numbers of calories compared to fat, you would not eat the same volumes of fat because you couldn't. Fat and protein satiate - carbs don't and so you keep eating them, your blood sugar rises, triggers insulin which makes it fall too low, you crave carbs to raise your BS, and a roller coaster forms. Over time your body becomes resistant to insulin - which eventually becomes Type 2 diabetes if not checked. If you are on pred, these effects become magnified.

If your doctor is checking your Hba1c level it should remain in a fairly narrow range - and if it starts to climb it is a sign that there is a possibility diabetes is developing. There is a difference in cause between Type 2 and steroid induced diabetes, the effect of sustained high levels of sugar in the blood are what lead to damaged tissues and, in the long term, a lot of nasty medical results. Either way, cutting unnecessary carbs and sugar reduces these risks. Sugar consumption over the last 50 years has risen a lot - and parallels the development of many modern disease epidemics including cardiovascular disease, obesity, diabetes and many more. The evidence is against sugar.

Hidden
Hidden

I would be interested to know what your initial blood test said and what dose of pred you are on when they said the inflammation was "normal" if you were on pred when the tests are normal it's because of the pred, not the fact it is remission ,(just my view but seen that mistake lots). It may be active and would account for low mood, stiffness and pain in shoulders and legs. That is most likely PMR.

Heinrich7
Heinrich7 in reply to Hidden

All makes sense! Crazy. Rheumatologist didn’t warn me about that!!! Of course inflammation would be reduced on P. Thx to you and others on this helpful forum, I have been made aware!!!

Hidden
Hidden in reply to Heinrich7

If it wasn't so harsh to patients taking them off pred when bloods are "normal" I could laugh!! Good luck getting it sorted. 🌻

Heinrich7
Heinrich7 in reply to Hidden

So what your saying is Rheumi should not have taken me off. But instead maybe keep me on low dose for 2-5 years til PMR out of system?

Hidden
Hidden in reply to Heinrich7

Try starting with the guidelines for PMR on this link. There are lots of others document accessible from here. But yes, most people are up to 5years before remission. We always say it's about symptoms and that normal inflammation markers are merely a sign you are on the right dose. Also 20% of people don't get raised markers at all, so it's symptoms that have to rule. Just get the gist then come back and ask later.

pmrgca.co.uk/downloads/2/6

,......,............

Me, 58yrs, dx PMR June 2016, 6mg of pred since last reduction in sept 18.

Seems some doctors, even specialists, are under the delusion that pred cures PMR/GCA. It doesn't, it simply manages the inflammation. That's why, as the others have said, a normal blood result is not an indication of true remission, merely that pred is doing what it's supposed to do. If and when you go back on pred, please use one of the slow taper plans developed by patients available on the forum and this will help you get to the lowest dose which continues to manage the sypmtoms until you are able to wean off completely. My experience? Uneventful taper from 15 to 3 in first year. Down to 1.5 following year, but then had to return briefly to a higher dose (never more than 7 and only for a day or two). Tapered again to 2, and two years on am attempting yet again to get to 1.5. you can see this is a long process, but also that I've been at a very low, non-harmful dose for about three years.

Heinrich7
Heinrich7 in reply to HeronNS

Wonderful. That you are on low dose. I did wean from 12.5 to .1 very slowly. BUT of course as you say, the disease is still ruminating most probably, cuz I am slowly starting to feel symptoms with being off P for 2 weeks.

Will make decision soon. No fooling around with our health.

Thx so much.🌺

PMRpro
PMRproAmbassador in reply to Heinrich7

Most people would take up to a year to get from 10mg to 1mg - never mind off altogether! It may be that just 1mg is enough to keep things under wraps - which would account for you being able to get low so quickly. But a study has shown that fewer than 1 in 5 get off pred in under a year, about a third are off by 2 years.

The blood markers are not infallible - 20% of us never have raised markers, even more of us may have raised markers originally but once they fall with pred they may not rise again or take a very long time to rise. My ESR never got above 20 even when I couldn't move, officially "in normal range" so ignored - except MY normal is in low single figures. They were very raised for me.

Hidden
Hidden

My inflammatory markers were normal pre and post PMR, so just be aware it’s not a definitive test. I’ve been in a similar situation to yours; tapered to zero but over some weeks all the symptoms returned. I’ve had to return to steroid to manage, and at a much higher initial dose to hit the spot.

Please don’t be fooled; the disease is still there if you have any symptoms and I’d urge you to take action to hit it quickly. Good luck.

Heinrich7
Heinrich7 in reply to Hidden

Oh-Oh! Thank you!

Oh dear Heinrich7. I really think that you tapered off too fast and you are suffering for it. If only the blood tests were totally reliable but they are not. If only we could see PMR off in 9 months, but we can’t. The reasons for the panic attacks and depression could be complex, not least because you are expecting too much from your body too soon and feel trapped by the expectation. If you are genuinely pain free and your mobility is fine then you need to explore, with a qualified person, the reason that you feel so awful. Do not give up until you receive proper help. Symptoms rule with PMR.

So happy I stumbled on this forum. It is a godsend for me! Came at a crucial time, where the pain (like a year ago) is not yet as debilitating as then. Will be going back on P for I do feel symptoms coming back. Have started counselling too for depression and mood swings.

Just as an aside, apart from the returning stiffness that could be from PMR resurfacing, your anxiety and depression may be due to adrenal insufficiency. Your adrenal glands were induced to produce less cortisol while on pred, and may not have returned to full function.

And if your last blood tests indicated your inflammation markers were in the normal range, but you were still on pred when the tests were performed, well, that was likely would be due to the pred, not to the absence of PMR. You need some new tests.

All the comments point in same direction.

Look at the symptoms first.

PMR just doesn’t quickly disappear.

Get blood work for a variety of things. I’ve made a list.

Will go back on prednisone. Don’t beat myself up over it.

Adrenal glands not fully functioning may be cause of depression and low b12 also.

Take good mineral supplement.

Thx so much! One day at a time!🍎

Good list! It’s like we’re at Pred college and ready for tests..😀 so glad you found this great Forum and are getting the help and support you need. You are most certainly not alone 👍

Good to hear your progressing well - me too. Take Vitamin B for low moods

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