Tapering after relapse

[Sunset123]

Hello everyone - so I called the rheumatologist again today because the 10 mg he put me on for my flare up was not working. He said to start 15 mg of prednisone today and to stay on for one week then go to 10 if I’m okay. I’ve been reading to taper slowly by a half or one milligram. Should I just do that?

[DorsetLady PMRGCAuk volunteer]

Hi,

In normal circumstances, the way your Rheumy advised does work for a flare. However, in your case I don’t think you were started high enough initially, so you need to

a. Make sure that 15mg does work - a week may or may not be long enough,

b. Then reduce more slowly, you may find that 1mg at a time is okay.

Good luck.

[Sunset123 in reply to DorsetLady]

I was hoping to see results right away. I took the 15 mg yesterday morning around 6 am and had some relief during day. . Noticed last night pain coming back in arms and shoulder. This morning is bad.

Thank you DorsetLady

[PMRpro Ambassador in reply to Sunset123]

The body sheds the pro-inflammatory substances every morning about 4.30am - that is why you have a return of symptoms until the new dose of pred kicks in. The earlier in the morning you can take the pred, the less work it has to do and the sooner it will work. Some people wake early, take the pred and then settle down for another couple of hours until the pred starts to take effect.

The antiinflammatory effect of pred lasts 12-36 hours so if you are a person who is towards the 12 hour end the symptoms will start to reappear before the next dose is due. Some people find they can manage this better by splitting the dose, maybe 2/3 in the morning and the rest an hour or two before they expect the pain to start up again.

You do also need to rest and pace - your muscles are intolerant of acute exercise as a result of the autoimmune part of PMR attacking your tissues. Don't go and try to catch up on everything you didn't get done!

healthunlocked.com/pmrgcauk......

Have a read of the links.

[Sunset123 in reply to PMRpro]

Thank you PMRpro - very good info for me. I am hoping this 15 mg of pred kicks in soon. Took it at 6am going , on 2nd day, and no relief with arms or shoulders. Locked in place with pain. I did a little exercise to get it moving but once I stop they lock up again.

[PMRpro Ambassador in reply to Sunset123]

As I said before - some people need more to start and get things under control. I realise the conundrum your team faces - but too little just won't cut the mustard to get things under control to start. Good luck - hope it works soon. It is said that 75% of patients will get the symptoms under control with 12.5mg - but it takes longer. So sometimes starting with more actual results in using less pred overall.

[DorsetLady PMRGCAuk volunteer in reply to Sunset123]

PMRpro has answered in similar vein to my response, so I won’t repeat.

[PMRpro Ambassador]

IF 10mg is going to be enough to manage the symptoms AFTER you have cleared out the existing inflammation, it will possibly work, even the 5mg drop after such a short time. But I'm far from convinced that 10 will be enough and you would be far better trying 12.5mg first. And as DL says - you probably need at least a couple of weeks at 15mg. Possibly longer.

[Sunset123 in reply to PMRpro]

Okay - thank you PMRpro

[sassyscript]

Hi, I would check with your doctor(s). I was on 10 down from 40, tapering off 1mg per month for a year. I got to zero then relapsed, I had to be put on 60mg in Dec 2017. I'm now on 10mg of Prednisone since May, it's now late September,and they wanted to keep me on 10 for at year. The plan is to go down to 5mg indefinitely, I think anyway. Check with your doctors first and be very careful with this.

[Sunset123 in reply to sassyscript]

Thank you sassyscript. It is a very touchy situation and like you said I have to be very careful - it’s so very hard. Like now - 2nd day of 15 mg took at 6 am and still no difference. It’s the arms and shoulder pain - they are locked. Hope it kicks in soon. Last time I noticed instant relief at 10 mg

[HeronNS in reply to Sunset123]

I guess it means not only did you flare because of your initial taper, the disease may be a bit more active right now. PMRCanada has some very good suggestions. I'd like to add that maybe you can do a few other things to try to relax those painful muscles. When I feel like that and don't want to increase pred in the evening I'll have a warm bath and go to bed and keep myself almost too warm, cosily snug, often with a hot water bottle to relieve the worst places where I think muscular tension has built up. Not saying this will help you, but I find it has been useful. I learned from my experience with an excellent physiotherapist that a lot of my pain is exacerbated by tense, even spasmed, muscles, which isn't the PMR itself although I think this condition indirectly causes the muscles to become so tense.

[Sunset123 in reply to HeronNS]

Oh thank you HeronNS - loving your advice. It has been a tough one for me. I just started with the heating pad the other night which gave some relief and the baths are good but the minute I get out it just all stiffens up again but I like what you said about being tense - it’s true and I am also under a lot of stress. I do some tai chi on you tube when I think of it. And...most importantly to breathe properly!

[PMRCanada]

Many have shared great wisdom in their responses alteady.

As far as tapering goes, my Rheumy put me on a “textbook taper” that she applies to everyone to get them of pred, instructing me to drop from 15 down to 12.5. The result.....FLARE! Had to go up to 15 for 5 weeks to get rid of all the built up inflammation.

Next appt she instructed the same thing and I reminded her of my flare when I did it last time. She insisted, but instead I read up on some slower tapering schedules on here, and created my own hybrid taper. I had no access to 1mg pills so I cut my (uncoated) pred into 4 and went down in 1.25mg increments over a number of weeks with a transition week in between each drop. Since July I have been able to drop from 15 down to 10mg this (transition) week.

Perhaps, as suggested, you need more to start again (15 or 20) to relieve your painful symptoms, and stay there for a month. Then start a slower taper.

Listening to the instruction of a Rheumy does not always work. Symptoms should be your guiding factor when you taper, and when finding a starting dose (although I believe most folks are started on 15-25mgs).

Hope you get some relief soon finding the dose that will address the inflammation that is causing your pain.

[PMRCanada]

One more thing, I did split my dose for a period of time to obtain pain relief in the mornings. Now I take my full dose between 4-6am when I get up to use the washroom. I simply put a frozen yoghurt tube in a tall glass and eat it with taking the pred and go back to bed for a few hours. I wake up most mornings with little pain.

With a bit of experimentation you may find what works best for you.

[Sunset123 in reply to PMRCanada]

Oh thank you again! It’s overwhelming to figure out what to do. You have great advice. Do you watch what you eat? That is another whole issue in itself for me - stressful. Used to eat yogurt but don’t because of the dairy and sugar’s.

[PMRpro Ambassador in reply to Sunset123]

Why not dairy? And plain natural yoghurt doesn't have the sugar problem. Greek yoghurt doesn't need sugar and flavourings.

[Sunset123 in reply to PMRpro]

I thought Dairy causes inflammation

[PMRpro Ambassador in reply to Sunset123]

Try it and see if it makes a difference- if we ruled out everything that it is said causes inflammation we'd probably starve!! Sugar and simple carbs really aren't good, especially on pred. Nightshades are supposed to be bad - make no difference to me at all. Nor does alcohol. Everyone is different.

[Sunset123]

I want to Thank each and everyone of you for helping, advising and supporting me through this very stressful time of my life. You are my ‘Angels’. (HUGS)

[PMRCanada]

I did a complete lifestyle change after being diagnosed with PMR and learning of my chronic knee issues. I try and balance exercise and rest. This also included changing my diet with the help of my daughter who is a CNP (certified nutritional practitioner). She helped me identify foods that help with inflammation and create a low carb/sugar/salt diet with meal plans. I did not eliminate any of the food groups, but I have cut out most simple carbs such as bread, potatoes, pasta and rice, and I don’t eat sugary desserts either. I do eat some complex carbs and get some sugars from fruit, etc. I do eat some cheese, plain Greek yoghurt everyday, and the fats I use are olive and coconut oil, and butter. When I find I’m really hungry, I will eat extra protein with grilled or baked veggies (usually veg that grows above ground).

The result....I’ve lost 27 pounds since April. My goals are to continue to lower my weight and my pred slowly as my Ortho surgeon recommended weight loss to help with knee issues. I’ve cut my blood pressure meds in half and am meeting with my GP in Oct to see if I can drop the medication completely. I am still overweight and have a number of pounds to lose, not an easy feat while on pred, but I am fearful of developing diabetes while on this drug.

We all need to find ways in which to deal with PMR and the side effects of pred. My current lifestyle is doable for me and I am able to follow it hopefully for the long term.

Hope this helps. Others may also share their diet regime so you can get an idea of what is out there. SheffieldJane has embraced the AIP and it has worked well for her.

You may also have allergies or pre existing conditions/medications to consider.

[Sunset123 in reply to PMRCanada]

Congratulations on your weight. That is fantastic. I have always been around 125. I am down to 118 and that’s not good. I’m careful but too careful maybe. I may have to see a nutritionist. I take an organic plant base protein shake with fruits, banana, greens and almond milk every morning. I love tuna fish if I could eat that everyday. I cut out lunch meat and most cheese. I don’t know I have to get myself together. I take fish oil and Boswellia complex plus, multi , calcium, vitamin d and probiotic

[PMRCanada]

Thanks. Hasn’t always been the easiest, I got “stuck” around the 20lb loss mark, but persevered.

125 pounds......pretty sure I weighed that by the time I was in grade 6!! Lol.

As far as supplements go, I take vitamin D and K2, calcium, curcumim (sort of like condensed turmeric), omega 3, and glucosamine (for the OA and other knee issues). Not really sure if they help with inflammation as long as I’m on pred (the strongest anti-inflammatory out there, I think).

Calcium and vitamin D are a must when taking pred as we can develop osteoporosis.

I also love fruit smoothies with almond milk, spinach, chia and flax seeds. Nightshade vegetables don’t bother me either.

With some experimentation you will find what works best for you. If you’d like to stop losing weight consider including full fat food items in your diet. Eggs are another go to that I enjoy.

Lastly forgot to mention I’ve also cut out processed foods/meats. Make meals from scratch so I can control the salt (which is my weakness......mmmm dill pickles).

[Sunset123 in reply to PMRCanada]

I heard mixed reviews about k2. Is it that important? What brand do you use? I use Thorne products for calcium and d. Boswellia has the tumeric, celery seed, ginger. Do you do prescription calcium? Would you please give me some examples of full fat foods? Eggs I do eat. I didn’t want to be this low on my weight.

[PMRCanada in reply to Sunset123]

Naka Platinum-K2

Caltrate-calcium, vit D, K1, magnesium, zinc, copper, manganese (all in one)

Omega 3- Genuine Health

You may want to choose full fat dairy (yoghurt, sour cream, milk). Same with mayo, salad dressing, etc. People on the Keto diet (that seems to be trending) consume “fat bombs” (my daughter makes and sells them in the health food store where she works as the kitchen manager), so you could google recipes. PMRpro has a link to some of the full fat recipes advertised on the Keto site. One of my favourites is an Asian cabbage stir fry with ground beef, green onions and sesame oil. Yum.

Hope this helps.

[PMRpro Ambassador in reply to Sunset123]

Nothing that is described as "low fat", "lite" or "light". And don't stint on the oil or butter you use in cooking. Cheese, cream, whole milk products...