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What a ride it has been ...for me at least!
I started my ride on this PMR train in August, and I have been on a whirlwind tour since. I feel it's the old "One step forward, and 2 steps back'. I was able to get my insurance to cover the Kevzara, and then my doc did some more research to find that my partial colectomy could increase the possibility of a medical event. So, now it's on to methotrexate. That was order was placed and approved with the help of their specialty pharmacy.
In preparing for this, my prednisone was lowered to 10 mg from 15 mg, and I had just finished my physical therapy upper body 4-week session. I was feeling pretty good and was looking forward to starting my lower body work ups. As all this is going on, I decide to do some morning shopping at the local Winn-Dixie (It's a southern thing). I had a few boxes in my left hand, and I moved a bit to cause a box to fall. I made a quick motion with my right arm to catch the box, and I brought my arm up from my waist across my body as a first baseman would do to catch a ball. I did it without any thought at all, and then the pain hit me hard. It felt as if some was cutting my arm off, through the deltoid to the shoulder. I literally screamed in the grocery store, and I'm 6-foot, 220 lbs., long hair, and I have both arms covered in half sleeve tattoos. No one came over to check on me, and I quickly made my way out the store to my vehicle and then home. The pain was so intense. I had felt that same pain in my left arm too, when I moved my arm the wrong way when I was first diagnosed with PMR. I screamed then too, and I felt as if my arm was being ripped off my body.
Has that happened to anyone else?
My doc said that we could send you to Ortho, and I'm thinking for what? So, they could do me an MRI on my arm to tell me my arm is tore up? No thanks...
So, now when I get a call from the Primary care Provider wanting to see me about my 400 blood sugars. {It was found during my oncology appointment for my enlarged spleen, which it turned out it wasn't cancer (yea!) but enlarged because of the PMR, that it my fasting glucose was 318}. The staff give me a DEXCOM7, and my sugars were recording insanely high. I was prescribed Levemir at night, and the pharmacy that I use, did not have Levemir in stock, and I had to pick that up at another pharmacy, out of state, where I had planned a day trip to see my family the next day. When I get back from the trip, I have another visit to the Diabetic Provider's office. There, I get prescribed short term and long-acting insulins, and they placed me on high dose sliding scale. I have not had my glucose under 120, and this is day 3 of the insulin injections at higher doses.
Today, I also started of my methotrexate injections 25 mg, weekly.
This was all in November!
Does this get better? Do I have to high of expectations about recovery? I haven't worked since July and, thank you Baby Jesus, I have FMLA with sick time to cover this illness. I guess I'm in the denial and anger stages still. I'm fighting, and I won't give up, but this is getting tiresome on my body.
I'm 59 years old, my sugar is running wild on the steroids, my spleen is enlarged, and my muscles hurt ... (This could be a title to an old man Jimmy Buffet tune)
Seriously, does this get any better?
I'm trying to stay positive...
edinnola
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Well you are certainly laughing so you must be staying positive !
I started PMR in April and it is definitely one step forward, two back. But PMR is also a grey area and one glove doesn’t fit all unfortunately. Best wishes.
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3 ReactionsI know medications including prednisone can raise blood sugars, but I've surprised my doctor and myself in keeping blood sugar low and even losing 2 stone in weight since starting on prednisolone for PMR in May. I'm on a low carbohydrate, nutrient-dense diet, eating lots of calcium rich dairy foods to help with prednisolone bone loss.
Yesterday's blood test results gave me a big lift which I really needed. Fasting blood sugar:36, electrolytes all good, blood cells all good, ESR (inflammation):5 - extra good. I put these good results down to the strict low carb & low oxalate diet, avoiding processed food with all their chemical additives, and moving more.
Have you tried dietary changes to help with blood sugars?
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4 ReactionsYes,
Fasting sugar 36? Wow.
I have, but evidently it is. Otvworking like yours
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1 ReactionIt is a pity the Kevzara is not an option for you. The same warning about the potential for a bowel perforation for patients with a history of diverticulitis applies to Actemra too.
Why did you have a partial colectomy? If you have Crohn's disease. ...Ulcerative colitis. ... Diverticulitis. ... then PMR might not be the correct journey. You may have inflammatory arthritis instead of PMR.
https://www.arthritis.org/diseases/inflammatory-bowel-disease
"IBD-associated arthritis is used to describe types of inflammatory arthritis associated with IBD and include psoriatic arthritis, axial spondyloarthritis and reactive arthritis."
I have reactive arthritis and PMR so it is possible to have multiple autoimmune disorders. Having one autoimmune problem puts you at a greater risk of having another one. If this is true, you may have a long ride.
Prednisone has wide ranging effects on the body. Corticosteroids produce their effect through multiple pathways. In general, they produce anti-inflammatory and immunosuppressive effects, protein and carbohydrate metabolic effects, water and electrolyte effects, central nervous system effects, and blood cell effects. Most of these effects aren't good but the arm twisting pain makes us do things we would rather not do.
I tended to refuse tests that are offered to me. I wasn't afraid of what they would find. With PMR, the issue is more about diagnostic tests not finding anything wrong.
My PMR journey lasted 12 years and is ongoing. However most of the pain stopped when Actemra worked. I'm off prednisone and things are improving for me.
I would encourage you to do the MRI. There were many things that were wrong with me which could have been addressed sooner in ways that actually helped me decrease my prednisone dose.
I'm still afraid of some of the interventions that were offered to me. I can tolerate pain better when they can find a reason for the pain. It is good when they find something even if you decide to not do the intervention.
The biggest lesson I learned was prednisone was a quick fix for pain relief but prednisone was not a very good long term solution.
Another thing that was difficult for me was being diagnosed with one thing made it much harder to accept other things. It was worse when my rheumatologist said it was a "full range" of things.
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2 ReactionsWell, I'm in a lot better shape than what you described, so I am counting my blessings. I just have some weird things going on like losing my fingernails and I don't know what is causing that. I've lost 3 since April. I also have Small Fiber Neuropathy. So who knows what causes what. I hope you are better soon. I am still trying to find a good Neurologist.
It occurred to me that we may use different measurements for fasting glucose in the US and Australia, so I checked. I'm in Australia and my measurement was 36 mmol/mol with a non-diabetic range of 25 - 38. At 48 mmol/mol type2 diabetes is diagnosed. In the US you seem to use an mg/dL measurement with 126 mg/dL or higher indicating diabetes. I checked because of your "wow" reaction. 🙂
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4 ReactionsI was impressed you were functioning at that level. I'm a RN, and I have seen people function at "36".
My reading is currently 206 for the morning. I haven't even had my black coffee yet...
Good job keeping it under control.
I do miss me some VB. I was stationed on Guam. When the guys would come back from a temporary duty "down under" I looked forward to getting a few VB.
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4 ReactionsYes ... a blood glucose of 36 in the United States would get a response. As a nurse, I would be handing you a glass of orange juice and retesting and maybe give you another glass of orange juice.
With a known diabetic, I would be pleased with a 126 reading. Even if a person wasn't diabetic, I wouldn't be overly concerned with a 126 although something closer to 100 would be better if it was a fasting glucose.
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2 ReactionsGood morning,
Salute to all VETERAN.
I'm sure in the age group they are numerous and best wishes while navigating your journey with PMR.
Mother always said, look around your in a better place than many.
Well down from 20mgs of prednisone to 12 mgs and doing better with the blood pressure and am sure it's the result of the lesser dose. Still sleep is sketchy up and down from 6 to 8 with no pattern why or when.
Noticeable less swelling in extremities shoe size nearly down a half size, guess no one else experienced? Yet weight seems pretty stable.
I am concerned with blood sugar as brother (past) is constant reminder of a painful way to go....
Has anyone had any positive experiences with the blood sugar watches, there's so many out there??
Back to blood pressure, seems the low dose of 2.5/ 10 is my current sweet spot. That said was on 10-40 at a time I thought I was normal and not having PMR.
Which one wonders how long this stuff has been around and just how progressive it is.
Still say many of you can write so many of our journeies and say, Yep that's me...
Best wishes to all whom have more questions than answers and deal with the affection.
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3 ReactionsMaybe you have been misdiagnosed. Have you seen a rheumatologist?