Sugar and PMR

@johnbishop and all...Well, POOH! I took the last Prednisone yesterday. Tapered and began increased pain for couple days, then awoke last night at 1 a.m. in the PMR specific pains, with a vengeance. I'm afraid I exacerbated this with ice cream! Drat! Won't happen again!

Sent doc info portal message at 2 a.m. got message I'm starting prednisone today.

This is really fun...It took me totally by surprise and knocked me for a loop. A tough disease...I'm tired of the waterfall of diseases that keep coming. Guess I'll just keep on one tiny step at a time. Or, rest in bed ...no steps...the links were great and helped me understand about this thing. Thanks.

Blessings, Elizabeth

Really hoping you get some relief soon Elizabeth. PMR is definitely not fun.

@vanns, @charlotte61, @johnbishop, and all...
I've been on varying lengths and dosages of prednisone since I was 40 and developed Sarcoid. I was on a heavy dose for months to hit the Sarcoid, since I've had it for multiple lung and other inflammations. I'm now almost 77 and dealing with the bone and other issues of longterm prednisone use. Yeats probably why my doctor began with a shorter dose than usual. I suspect he was testing to be sure of the PMR and GCA diagnosis.

Well, now we're sure and I'm beginning prednisone again today. I want to stay on it longer and do a slower taper if possible. But, that may cause more issues...we'll see.

Strange, but I can't wait to begin the prednisone and lessen this pain. More learning about another disease.

Thank you for sharing your story with me. You have helped me understand and get a better start on dealing with these issues. I do wonder how often you have flare-ups...is it dependent on your diet? Activity? What are your triggers?

Blessings, Elizabeth

Congratulations! You are amazing for your age!

Since diagnosed with PMR about 3 months ago (severe pain), the pain stopped about 4-5 days after starting Prednisone. I was eating healthy before but now I eat extremely healthy. No bad food, especially that would make PMR worse. I eat all the recommended food/nutrient that would help PMR i.e. salmon, green vegetable, etc. No more desert i.e. cake and no more dark chocolate which I love and miss but I am glad I stopped. No sugar, except for lots of fruit in my extremely healthy smoothie (2 large container each day). My smoothie includes banana, almond milk, Chia seeds, Flaxseed, TUMERIC, (blueberries, strawberries, or pineapple), 100 % cocoa powder, /baby spinach or kale or cauliflower), almond butter, Each day, I drink a very large container of water with lemon (which reduces inflammation and cholesterol) and also ginger (also great health benefit). I started walking 6 miles each day (2 miles at the time). I do floor exercise and light weight training exercise every day). I now walk much faster and additionally I now run 1 or 2 mile each day. I used to run 6 miles a day. So far, I am doing extremely well and I agree with all the great recommendations that many of you make. Having said this, in 1 week and as per the instruction of my rheumatologist, my dosage will go down from 30 mg (6 pills each day) to 5 pills a day for one week, and then to 4 pills a day for 1 week, until I get down to 2 pills a day (10 mg) and then he will reevaluate. Based on what I read from our support group, many start having problem again when their dosage goes down, so I am somewhat nervous. Back to the sugar and the previous comments from others, I totally agree. I also agree with others who previously recommended TUMERIC. All these things and exercises seem to do wonder for me. I am cautiously optimistic. I will be 73 in 1 month. I now feel like a 50 year old again. When PMR started and before Prednisone, I felt like a 95 year old. Time will tell.

JP

Good luck tapering!

I also had Covid for the first time in early Nov and my PMR symptoms were totally gone for about a week while I had it. Go figure. Subsequently have had the nagging postnasal drip cough since then and developed an ear infection which was treated with an antibiotic. I finished the antibiotic on the same day that I tapered from 7.5 to 5mg of predisone. Some of my symptoms reappeared and my rheumatologist suggested I go back to 7.5 but not before I had labs done. My ESR was elevated which confirmed her diagnosis of a flair. However when I told her of the ear infection she agreed that the elevated ESR could be from that. I am holding on 5mg with no significant increase in my PMR symptoms. I see her in a few days and will hope that the taper will continue successfully. I am going to suggest that instead of the 2.5 every three weeks that I have been doing be reduced to 1mg every 3 or 4 weeks. Fingers crossed.

Thanks for sharing. Hope all goes well. I continue with monthly lab test and I am scheduled for a bone density test in a few months.

JP

I've made it. My tests came back today and they show I am over PMR. However, I still have pain which seems to come from something else. My doctor has ordered rehab to build muscles, which I am not looking forward to. But for now, I couldn't have received a better Christmas present. It's been the hardest 4 1/2 years in my life but it hasn't been all negative. I have learnt to ask for help, a big problem for me in the past. I lost weight that I have been trying to lose for decades. I had no desire to go out during Covid lock down. I learnt patients, also another problem for me.

I know I will still keep reading this discussion and thank you all for the hope you have spread. It really helped. There is an end to it all and I am keeping my fingers crossed for the rest of you. Happy holidays.

Thanks for sharing this encouraging update. Very happy for you. Keep up with this positive attitude which we all need.