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Sugar and PMR
Has anyone else found that sugar worsens their PMR symptoms? I've tried cutting the sugar in my diet to an absolute minimum, and it seemed to be helping with my symptoms, even as I'm working at tapering off prednisone at the same time. However, I noticed that the two times I fell off the wagon lately, and indulged in a sweet treat, I ended up feeling more soreness and stiffness over the following couple of days. The most recent was a big piece of cheesecake I ate at a friend's house on Saturday night. Yesterday and today, I've felt stiffer and more sore than I have over the last few weeks. I did some Googling, and came up with this article that also talks about the link between sugar and inflammation, specifically PMR: https://www.whatispolymyalgia.com/diet-nutrition/sugar-top-inflammatory-food-pmr/. Just wondering if anyone else has noticed this connection. For myself, I'm finding that gluten is also a culprit -- the cheesecake, as well as the buttertart I ate on the first occasion, both contained gluten as well as a lot of sugar.
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@vanns, @johnbishop, @megz, and all...
My goodness! What wonderful help from you all for those of us who are new to PMR!
I was diagnosed a week ago with PMR and GCA. My doctor put me on Doxycyline for 10 days and Prednisone I'm now tapering. I have 1 last pill for tomorrow. Then, I'm off both meds.
I had Covid for the 1st time in July. I use a bi-pap and O2 at night and I think that saved me from serious Covid. I took Paxlovid and Methatrexate?...a med I've never taken before. I responded well and was better fairly quickly for me as I have multiple autoimmune and other diseases and have taken Prednisone frequently for Sarcoid, bronchitis, etc.
I had bronchitis after Covid in September/October and took Augmentum and Mexatrexate? Wow! That steroid gave me a real kick! I was climbing the walls from the 1st dose. Slept very little. Was up and active, almost manic at times. It was a very difficult time and again the bipap and nightly O2 were very helpful.
Then, I had an iron infusion, as I have problems with frequently low Ferritin and have infusions as needed. I kept going downhill even after the infusion, and had several side effects during the IV which never happened before. My hips hurt badly, my hands/ arthritis hurt more, my shoulders and neck began to hurt, had a headache and other issues. With added meds and slow IV, I completed the treatment. But, went home beaten up and got worse daily, rather than improving. Fatigue became severe and I was so weak I couldn't turn over in bed. I stayed in bed most of the days due to increased fatigue, weakness, the pains in specific areas, then headaches and vision changes....that's when my PCP diagnosed PMR and GCA. Geez! All the time I thought the iron infusion didn't work, but I had 2 more diagnoses.
I'm still spending most days in bed, with some limited activity but with heavy sweating after activity, increased pain, shortness of breath and weakness.
I'm diabetic, take Ozempic to avoid my gut and Metformin. It's great. I do have some sugar daily, but usually not much and my A1C is 5.3. During all this, I did wonder if weakness and sweating was related to diabetes.
Nope. It seems it was PMR.
I'll be more strict re processed sugar. I'm off gluten and improved. My diet I'd limited, but I've been eating more fresh fruits. Suppose that will stop now.
Do you see your PMR symptoms lessen after Prednisone? How often do you have relapses? Does it depend on your activity? Yes, on diet. Any other tips you have to help this newbe?
I hate this and am angry at these 2 illnesses hitting my body now. I was so improved before Covid. Been going backwards since. Please tell me I can turn this around...
Blessings to you...
Elizabeth
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4 ReactionsI have not heard of anyone with PMR tapering and going off Prednisone that quickly, Elizabeth, but I’m not a doctor. Most people stay on it for many, many months and years to be rid of the disease.
I will give a warning that on the day after you have completed the prednisone you may be back in pain.
I was diagnosed in July. Went from 15 mg, to, 20, to 30.
Started tapering 2.5 mg every 2 weeks in October to now 12.5, but am experiencing some upper arm pains when I wake up so will stay at 12.5 until that subsides. It seems from what I have read from the anecdotal offerings most people are successful in going off the prednisone doing a very slow tapering.
When I get to 10mg I hope my doctor will agree that coming down just 1mg is okay. He seems to be of the mindset that coming down 5 mg is fine, and I don’t agree with that because of reading so many accounts from others who have experienced success from a very slow taper. ( most of that accounting is in the Facebook support group).
I had my first round of Covid in early November and felt normal after 2 days of feeling like I was coming down with the flu. I tested positive, though, for 10 days.
As many people have said, everyone is different with this auto immune disease.
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4 ReactionsI agree with vanns -- I was diagnosed with PMR in late July of this year and have so far only tapered from 15 to 14 mg a day in all that time. My doctor wanted me to taper by 2.5 mg at a time, but that was too much and the pain was back within a week. I don't think doctors really understand this disease very well, and they seem to be far more concerned about the side effects of long-term prednisone use than anything else. I worry about the side effects too, but if prednisone is the only medication that works for PMR and GCA, then we have no choice but to take it - sometimes for months or even years.
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3 ReactionsI'm lucky that I don't really have much of a sweet tooth, but when there's chocolate in the house, I can't resist it. I have a box of Turtles sitting on my kitchen counter, given to me as a gift on the weekend. I've eaten three so far -- one a day. Even that much sugar seems too much, so I may have to give the rest away.
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1 ReactionI'm starting to realize that - lol. I may have to give the rest of the chocolates away.
Thanks for the info -- this is really helpful! I try to eat a healthy diet, but because I also have SIBO, I have to be careful with fiber. Otherwise, I'm in the bathroom multiple times a day. I do make sure I have fruit and vegetables every day, but I have to cook the vegetables, and there are only certain fruits I can eat -- e.g. berries, grapes, Clementines. I've also cut red meat and processed foods from my diet, and only eat chicken, turkey and fish. I do eat quite a lot of rice and pasta (gluten-free), which probably isn't great, and I also eat dairy (lactose-free apart from cheese, which I seem to be able to tolerate well).
I find it interesting how many people developed PMR for the first time after receiving the Covid vaccine, or from having a bout of Covid. I'm pretty sure this is what happened to me too. My symptoms started a few weeks after my last Covid booster.
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3 ReactionsSounds like you are being proactive with your self-care. Sorry to hear about your SIBO, and yes, your rice and pasta (and dairy ) could be contributing to your problem. Anything that slows gut motility like highly processed foods and high-fat dairy might not be the best foods for you. Taking probiotics might help, although, the studies done are not conclusive about this. I take one daily anyway, along with Omega-3's and turmeric. Good luck to you!
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1 ReactionYes, you're probably right about the rice, pasta, and dairy, but those are going to be very difficult for me to give up. Mac and cheese is one of my all-time favourite go-to dishes.
I was taking turmeric, but it gave me diarrhea so I had to stop. I take Omega-3's every day, though, as well as MSM. I was taking probiotics for a while, but stopped -- I may look into them again. Thanks!
Hi Elizabeth @ess77, There are a couple of other discussions you might find helpful if you are new to PMR.
– PMR Diet: Foods to eat and avoid: https://connect.mayoclinic.org/discussion/diet-and-pmr/
-- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/
The prednisone provides relief from the pain caused by the PMR and GCA or at least it's supposed to at the right dose. Dosage can depend on body weight and symptoms (I think). Hoping you can get it under control quickly. I think the problem a lot of us have had is trying to taper off of prednisone too quickly when we really need to listen to what our body is telling us. It helps to keep a daily pain/symptom log along with your dosage of prednisone for that day.
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3 Reactions@johnbishop, and all...Thank, John. I took my last Prednisone today. Been in bed most of day and yesterday, although did too must last evening and ended up with sweating and other symptoms returning. Went away after doxycyline pill and nightime meds. Yuck.
The pain is greatly improved, so we'll see how the next couple of days go re pain with no prednisone.
The doctor is staying in touch and wants daily portal reports on symptoms, energy, activity, etc.
Thanks for the links. I'll check them out now.
Oh, the doctor says this may be a post-covid response. He thinks probable but we need to check carefully. I will get back on prednisone if it gets worse. I've taken that med since diagnosed with Sarcoid at 40, have a true love/hate relationship there. But, it's saved me many times. We just deal with the side effects and move forward.
I've already adjusted my diet based on this discussion...
Blessings, Elizabeth
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