Frustrated in the US

[Amkoffee]

I believe my PMR is back. I had covid 4 weeks ago and now I'm experiencing the aches, pains, stiffness and fatigue typical of PMR. I was supposed to see my rheumatologist but had to cancel because of covid and now I can't get in to see her until September. I have sent her an email thru the patient portal asking her to order a blood test for ESR and CRP. I am so frustrated!

[SheffieldJane]

As you have a relationship with your Rheumatologist and are familiar with your symptoms of PMR they ought to be able to prescribe by email or on the phone, surely?So sorry this happened to you. It’s like snakes and ladders.

[Amkoffee in reply to SheffieldJane]

I'm not sure I will be allowed to. She stopped them before because I developed severe osteoporosis and had multiple broken bones. However, I developed adrenal insufficiency so was put back on a low dose of hydrocortisone which I still take. I'm on a drug for the osteoporosis and haven't had a broken bone in a couple of years. I'm hoping that I will be able to treat this with prednisone but we'll see what she says.

[SheffieldJane in reply to Amkoffee]

Sorry Amkoffee, I had forgotten your back story. Maybe Actemra would be an answer. They can’t just leave you. Good luck.

[Flutterbies57 in reply to Amkoffee]

Sad u had to come back Amkoffee. I too have had a few broken bones . I am certain I have one problem due to adrenal insufficiency. My knees and ankles had momentary insecurities for a year . (Adrenal hiccups I was told) I was down to 1.5mg , had a flare before Christmas, within 12 hours after I upped the pred , all joints are working well again . Can you enlighten me as too other adrenal problems ? I too am frustrated at the other end of the world .

[Blearyeyed]

So sorry , I hope the Rheumy gets back to you soon. If not , chase them up or get the GP to do the blood tests and then contact the Rheumatologist with the results.You can't be expected to wait now you have symptoms again.

Let us know how you get on , take care , Bee

[DorsetLady PMRGCAuk volunteer]

Sorry to hear that, but you did say 4 or 5 months ago you had twinges, so perhaps Covid was the final straw….

Do hope you get get a quick reply from Rheumy, and more importantly the necessary treatment. Catch it quick, and you may only need a small dose.

[Amkoffee in reply to DorsetLady]

She is very good and I hope your right.

[yogabonnie]

do you have any prednisone left ? you could take a day or two and see if it fixes you and then you would know... if you had good luck with Prednisone before.... so sorry. hope you get in and she orders labs ASAP

[yogabonnie]

But perhaps don't listen to me. With other problems in the loop. but FEEL BETTER SOON! go to primary for blood test if you don't hear back. do you have a MYCHART account. I find that gets looked out faster than phone calls.

[Amkoffee in reply to yogabonnie]

I'm in the US so we all have different patient portals. But I love my rheumatologist. She is awesome and I'm sure she will order the tests on Monday.

[PMRpro Ambassador]

Bear in mind though that Long Covid is very like PMR - or is it PMR?????? Hopefully it is a short-lived episode.

[piglette in reply to PMRpro]

Interestingly enough on Money box today they were saying that long Covid is not classified as a disablement while I believe PMR is. Someone has gone to court saying that Long Covid should be classified as a disability. I remember when I first heard about long Covid I thought “that sounds like PMR”.

[PMRpro Ambassador in reply to piglette]

I'm very sure it is this century's ME ... And it is autoimmune,

[piglette in reply to PMRpro]

I have the same suspicion.

[Amkoffee in reply to PMRpro]

I did not know that. I will definitely look into long covid symptoms. All I've ever heard anyone talk about is the smells.

[Moruya in reply to Amkoffee]

If you look it up ,covid can cause myositis, which is the same as PMR, it will also cause your blood work to go up .

[Amkoffee in reply to Moruya]

It is not actually the same as I understand it. Myositis is inflammation of the muscles and PMR is inflammation of the vascular system. Both have inflammation but myositis does not always hurt, PMR is always painful.

[PMRpro Ambassador in reply to Moruya]

Not the same thing - different conditions with different effects:

medicinenet.com/polymyositi...

"Polymyositis is an inflammatory, destructive, autoimmune muscle disease, usually with weakness but unusually with pain. Polymyalgia rheumatica is an inflammatory disease of muscle that always causes symmetrically painful muscles. Polymyalgia rheumatica is not destructive to muscles."

PMR does not damage muscles or joints in the long term.

[Moruya in reply to PMRpro]

I never mentioned polymyositis, you can have autoimmune myositis, it was my GP that said they are of a similar condition .

Screen shot

[PMRpro Ambassador in reply to Moruya]

The myositis association seems to think they are different:

myositis.org/about-myositis/

[Moruya in reply to PMRpro]

They also say some disorders can mimic myositis

[Aeowin777]

Oh I do hope you get some resolution and help. I had covid in April same happened to me lots pain stiffness and terrible fatigue. Saw rheumatologist last week and they would only put me up from 8mg to 10mg pred. It’s made no difference. She said don’t want you in this long term and take painkillers to help. If it is covid related hope it settles but to me it feels just like it did at very start c

[PMRpro Ambassador in reply to Aeowin777]

When will it sink in to them that painkillers do not work in PMR? For most people it is almost a differentiating crtiterion!

[Hidden in reply to PMRpro]

So correct. I am struggling at the moment and nothing is helping. I am even taking Co-codamol again. Prescription strength.

[PMRpro Ambassador in reply to Hidden]

I find that really I either need ibuprofen to achieve anything or a mix of several things.that just take the edge off, making it uncomfortable not painful. And never does anything for PMR pain!

[Aeowin777 in reply to Hidden]

With you there David. Been on 30mg co codomol for 10 months think I’m just getting used to it. It doesn’t really help with pain just makes you feel bit numb to it all. It’s not good

[Lonsdalelass]

I'm currently at home with covid, got someone ringing me later today to see if I'm eligible for antiviral meds. Going to beg them to give me some, even though it's almost 2 months of me being pred free, I don't want to take any risks of PMR symptoms getting worse, or Long Covid .

[Amkoffee in reply to Lonsdalelass]

Good luck!

[Ronzy]

Sorry to here that ☹️

[phebamom]

A bit off topic. Have you done any research on Vitamin C for osteoporosis? A Dr. Levy, a cardiologist, has written several books on the importance of Magnesium along with Vitamin C for osteoporosis, which he calls "focal scurvy" of the bones. I started taking 1500mg. per day and am having a lot fewer deep aches and pains, I have a horrible stomach so can only take the Liposomal Vitamin C, which is encased in oil. If I take too many calcium supplements I hurt worse.

[Karenjaninaz in reply to phebamom]

I reversed my osteoporosis to osteopenia, while taking pred, followed a research protocol using strontium Citrate. Calcium only by diet. Im 80.

[phebamom in reply to Karenjaninaz]

I read this article on strontium for bones: americanbonehealth.org/medi...

For the same reason I will not take a bisphosphonate in any form.

[PMRpro Ambassador in reply to phebamom]

There is also the point that denser doesn't necessarily equate to stronger/less likely to fracture.

[Karenjaninaz in reply to phebamom]

This article was talking about strontium Ranelate which was used successfully in Europe but was associated with heart issues. I based my usage on two research studies: one in Canada the other at Duquesne University in the USA which used strontium citrate. I also cleared this with my internist and my rheumatologist. Even though strontium enters the bones it has been associated with fewer fractures. Isn’t that what we want? Calcium and Vit D has not really been shown to prevent osteoporosis but it’s all one can think of- especially if already deficient. I am 80 years old with spinal rods used for scoliosis correction. I only turned to the strontium after: not tolerating AA and getting short of breath from Forteo injections. That was it for me. I add these studies recommended dietary calcium was preferable. Other nutrients were included: Vit K2, Magnesium among others- some of which I could not tolerate. So I just took what I could tolerate.

Organic foods have higher levels of strontium from the soil. One study postulated that commercial fertilizers lack this element and that might be the reason for so much osteoporosis in the Western world.

[Amkoffee in reply to phebamom]

I already take magnesium but not vit c. Like you I have stomach problems so it's good to know that I should take the special kind of vit c.

[phebamom in reply to Amkoffee]

I take Solaray brand Liposomal Vitamin C 500mg. I started with one capsule per day, and as I realized it was not causing stomach issues I increased to 3 times a day for a month to build up the levels of Vitamin C in my bones. Now I do one capsule per day. I guess the proof will be in my next Dexa Scan, which is this fall. I can not, and will not take a bisphosphonate in any form. I think stomach issues go with PMR, both from inflammatory response and the long term effects of prednisone on stomach chemistry. As far as osteoporosis and osteopenia: I believe they are Latin terms that mean your ass is getting old. Both are a part of the aging process and have been turned into a money making scheme. Prednisone gets blamed for a lot of things, when the truth is most of us get PMR at time in life when we are suffering from the drudgery of the ailments of aging. Several things cause bone loss, aging process, lack of exercise, poor absorption of nutrients, poor diet. When my SED was over 50, i.e., the last 15 years, I could not do my walking, which I love. Since I am on Actemra I am walking one mile per day and loving it again, PMR forces us into a sedentary lifestyle, the fatigue and pain exclude most forms of weight bearing exercise. Weight bearing movement stimulates bone growth and cell turnover. As we age our bodies become less efficient at absorbing nutrients, especially the nutrients involved in healthy bone production, While prednisone does contribute to some bone loss, there is a lot more to it than just prednisone. I said it before and will say it again: growing old is like being pecked to death by a duck.

[0427]

Same thing happened to me. Ask your GP or Primary care to help you until you can see Rheumatologist. Mine was more than willing to help with the understanding that Rheumatologist would take over later.

[Zebracorn]

Maybe your primary care md will order the test. My pCP , rheumatologist and oncologist have done additional blood work if I bask … for instance, my rheumatologist added a thyroid test to the test she ordered. Sorry for your pain and relapse. Constant battle for me.

[Amkoffee in reply to Zebracorn]

I just got the order from my rheumatologist today.

[Amkoffee]

UPDATE:

So my CRP has never been so high. My rheumatologist just called and wants to see me tomorrow. I'm hoping she will let me start taking prednisone.

[DorsetLady PMRGCAuk volunteer in reply to Amkoffee]

Good so, please let us know

[Moruya]

Yes, apparently it can cause flare ups . I'm experiencing the same thing .