PMR and interactions with meds for other conditions

Posted by heatrey @heatrey, Nov 27, 2021

I am a 64 yr old female diagnosed with high blood pressure in February. I also have mild asthma but am otherwise healthy, active, good diet and weight. I was put on a bp medication that caused a cough and subsequent flare up of asthma. I switched to something that was less effective in controlling bp but had no side effects. Switched again to drug that worked well but caused mild hives, which I could live with. I had Pfizer doses in spring and was given Reclast infusion for osteopenia in August. I had predictable symptoms after the infusion but they didn’t subside in two weeks, which is the customary outside range for the pain. I consulted the endocrinologist who suggested waiting until two month mark. PS that’s a long time to wait to deal with these symptoms. I managed on alternating Tylenol and Aleve and was miserable. On the advise of a friend in the medical profession I contacted the FDA and was told that many people receiving Reclast had reported similar long term debilitating side effects. Someone else said it has a black box warning now. Until the bp medication I’d never had any issue with test, drug, treatment. After two months I contacted him and said I felt like an 80 year old. He suggested contacting my GP. GP put me on 6 day tapering pack twice. 3rd day of tapering symptoms started coming back and was back to square one on last day each time. I saw a rheumatologist who did a battery of blood work and suspects PMR. It’s not a slam dunk diagnosis for her. I did well on 12 mg of prednisone and went to 8 after a week. It’s now 2 weeks into lower dose and I’m back to miserable. Doctor doesn’t want me to get booster or flu shot. I travel for work every week, so am concerned about exposure. I’d love an easy diagnosis and quick fix but have learned that lots of issues are multifactorial.
I guess this a lot of spewing but would love folks to share anything that could live in this space. Thank you!

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) group.

Hi @heatrey, it sounds like you'd like to talk about PMR and sensitivities and/or interactions with drugs taken for other conditions like high blood pressure, osteopenia, and others. I think this is a topic of interest for fellow PMR-ers like @novabill @tsc @lizzier @maryannhaller @kathleenkapes @microbe1943 @alanbruce and others.

You might also be interested in these related discussions:
In the PMR group
– Prednisone and osteopenia how to control https://connect.mayoclinic.org/discussion/prednisone-and-osteopenia-how-to-control/

In the Bones, Joints & Muscles group (https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/)
– Are you taking Reclast for osteoporosis? https://connect.mayoclinic.org/discussion/are-you-taking-reclast-for-osteoporosis/
– Reclast Infusions: Side-effects & Recovery time https://connect.mayoclinic.org/discussion/reclast-infusion/

PMR isn't simple to diagnose as members have shared in this discussion:
– Do I really have PMR? https://connect.mayoclinic.org/discussion/so-i-really-have-pmr/

What are the next steps for you, Heather, to confirm or rule out the diagnosis?

REPLY
@colleenyoung

Hi @heatrey, it sounds like you'd like to talk about PMR and sensitivities and/or interactions with drugs taken for other conditions like high blood pressure, osteopenia, and others. I think this is a topic of interest for fellow PMR-ers like @novabill @tsc @lizzier @maryannhaller @kathleenkapes @microbe1943 @alanbruce and others.

You might also be interested in these related discussions:
In the PMR group
– Prednisone and osteopenia how to control https://connect.mayoclinic.org/discussion/prednisone-and-osteopenia-how-to-control/

In the Bones, Joints & Muscles group (https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/)
– Are you taking Reclast for osteoporosis? https://connect.mayoclinic.org/discussion/are-you-taking-reclast-for-osteoporosis/
– Reclast Infusions: Side-effects & Recovery time https://connect.mayoclinic.org/discussion/reclast-infusion/

PMR isn't simple to diagnose as members have shared in this discussion:
– Do I really have PMR? https://connect.mayoclinic.org/discussion/so-i-really-have-pmr/

What are the next steps for you, Heather, to confirm or rule out the diagnosis?

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Thanks so much, Colleen! I'm seeing rheumatologist on Thursday. Just to clarify, I had no PMR symptoms until the Reclast. I'm not sure if that was the sole reason for this flare up or it's a combination of some or all of Reclast, Pfizer vaccines, BP meds. The prednisone has been a great treatment for symptoms. Just concerned that current dose is too low. We shall see. Bloodwork shows elevated numbers that indicate inflammation but no lupus or markers for auto-immune disorders.

REPLY
@heatrey

Thanks so much, Colleen! I'm seeing rheumatologist on Thursday. Just to clarify, I had no PMR symptoms until the Reclast. I'm not sure if that was the sole reason for this flare up or it's a combination of some or all of Reclast, Pfizer vaccines, BP meds. The prednisone has been a great treatment for symptoms. Just concerned that current dose is too low. We shall see. Bloodwork shows elevated numbers that indicate inflammation but no lupus or markers for auto-immune disorders.

Jump to this post

Oh, thanks for the clarification. Would you like me to change the title back to PMR and Reclast? Or something different?

REPLY
@colleenyoung

Oh, thanks for the clarification. Would you like me to change the title back to PMR and Reclast? Or something different?

Jump to this post

No, this is great. ANd the other resources are terrific. Thank you again.

REPLY

The fact that you did well on 12 and struggle at the lower dose sounds like PMR to me. So does your comment that you feel like you're 80. I'm glad you'll see a rheumatologist soon. If it's PMR, a likely starting dose will be 15 mg. You stay there for awhile and then drop very slowly. Once you get to 10, it's recommended you never drop more than 10% of your current dose and then only if you are feeling well at your current level. From 12 to 8 in a week would set you up for pain if you have PMR. Hoping for a good, quick diagnosis for you. Sounds like you've had a rough few months.

REPLY

Hello Heatrey,
I am sorry you have been going through such hoops trying to get a firm and consistent diagnosis. It does sound like PMR to me (though I am only another person with the condition not a medical professional). I, too, strongly suspected the influence of other meds bringing on PMR — a condition I NEVER experienced before my Moderna I and II shots (no apparent after effects) but the adjuvanted quadrivalent flu shot i received seemed like one-too-many boosters for my immune system. Within 2 days of my flu shot I was wondering what was happening and it got worse and worse over the next 3 weeks until I was, as your so expertly put it, "miserable": gradually hobbling like I was 90, unable to sleep more than 3 hours because of pain, unable to bend down, use my upper arms to leverage my weight in bed, unable to rise from a kneeling or squatting position, and on and on. The prednisone has been a total life-saver for me and I will trade any side effects for the restored quality of daily life I now enjoy again. I am a bit surprised at your prednisone dosage being reduced after such a short time as that doesn't seem a standard best practice, but I don't know what other factors your doctor was considering. And I know I won't take another flu shot again regardless of the "received wisdom" saying everyone over 65 should have one annually. That is WAY too sweeping a category for all the various other conditions that exist in that huge demographic.

I am pretty new on this journey, but from all the reading I've been doing, PMR pain is classically restricted to shoulders and upper arms, and hip girdle, butt muscles, and down the legs. Its "magic bullet" is prednisone, and treatment typically begins at 15 – 20 mg with tapering beginning 1 – 3 months out, if a patient is able to tolerate it. I hope you are able to lock in a diagnosis soon and receive adequate dosages to manage the pain that virtually all PMR sufferers find intolerable until the flare wears itself out and you can taper more-or-less comfortably.

This is a difficult road and I think you have been exceptionally patient and cooperative.
I'm hoping your relief comes soon.

Laurel

REPLY
@pokey

Hello Heatrey,
I am sorry you have been going through such hoops trying to get a firm and consistent diagnosis. It does sound like PMR to me (though I am only another person with the condition not a medical professional). I, too, strongly suspected the influence of other meds bringing on PMR — a condition I NEVER experienced before my Moderna I and II shots (no apparent after effects) but the adjuvanted quadrivalent flu shot i received seemed like one-too-many boosters for my immune system. Within 2 days of my flu shot I was wondering what was happening and it got worse and worse over the next 3 weeks until I was, as your so expertly put it, "miserable": gradually hobbling like I was 90, unable to sleep more than 3 hours because of pain, unable to bend down, use my upper arms to leverage my weight in bed, unable to rise from a kneeling or squatting position, and on and on. The prednisone has been a total life-saver for me and I will trade any side effects for the restored quality of daily life I now enjoy again. I am a bit surprised at your prednisone dosage being reduced after such a short time as that doesn't seem a standard best practice, but I don't know what other factors your doctor was considering. And I know I won't take another flu shot again regardless of the "received wisdom" saying everyone over 65 should have one annually. That is WAY too sweeping a category for all the various other conditions that exist in that huge demographic.

I am pretty new on this journey, but from all the reading I've been doing, PMR pain is classically restricted to shoulders and upper arms, and hip girdle, butt muscles, and down the legs. Its "magic bullet" is prednisone, and treatment typically begins at 15 – 20 mg with tapering beginning 1 – 3 months out, if a patient is able to tolerate it. I hope you are able to lock in a diagnosis soon and receive adequate dosages to manage the pain that virtually all PMR sufferers find intolerable until the flare wears itself out and you can taper more-or-less comfortably.

This is a difficult road and I think you have been exceptionally patient and cooperative.
I'm hoping your relief comes soon.

Laurel

Jump to this post

Thanks so much, Laurel. Hoping that there will be adjustment to dosage on Thursday when I see dr. Meanwhile the symptoms I wake up with-which are unpleasant but nothing like I experienced in those 2 months post-Reclast-are largely gone a few hours after I take meds. It’s an order of magnitude better than where I was. Hope you feel the same!

REPLY
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