Treating PMR with Prednisone and Hydroxychloroquine

Posted by joeblo746 @joeblo746, Aug 17, 2022

My doctor just added Hydroxychloroquine to my PMR treatment. He said it helps Prednisone do it's job. Seems like there are more side effects associated with it then there are with the Prednisone. Does anyone know if the Hydroxychloroquine helps. Also heard Hydroxychloroquine can take up to three months to build up enough in your system to be therapeutic.

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@montek

has anyone been told this by their doctor that taking methylprednisolone pretty long term could hurt your immunity to other infections? And if anyone has taken this for any long term like 1 year or more- have they had any troubles with lower immune responses to colds or flu or the like? Please tell me your experiences. Thank you

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@reets70 @martiesowers @kmb181 @ellegeee and others with experience using methylprednisolone may have some thoughts or experience they can share with you.

Here's more detailed information on long term use if that helps.
"Long-term methylprednisolone administration has been associated with the suppression of the hypothalamic-pituitary-adrenal (HPA) axis (a complex interactive signaling and feedback system involving the hypothalamus, the pituitary gland, and the adrenal glands). Suppression of this axis can result in corticosteroid insufficiency - where natural corticosteroid levels are no longer adequate to maintain vital bodily processes - after the withdrawal of treatment. For this reason, moderate-to-long-term methylprednisolone therapy should be withdrawn gradually."
--- Methylprednisolone: 7 things you should know: https://www.drugs.com/tips/methylprednisolone-patient-tips.

I would still discuss long term use with your doctor or a possibly a pharmacist.

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@montek

has anyone been told this by their doctor that taking methylprednisolone pretty long term could hurt your immunity to other infections? And if anyone has taken this for any long term like 1 year or more- have they had any troubles with lower immune responses to colds or flu or the like? Please tell me your experiences. Thank you

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Methylprednisolone is stronger than prednisone:

Prednisone is four times as potent as cortisol, a steroid hormone that is present in the body. Methylprednisolone is five times as potent as cortisol.

I took prednisone for PMR. It decreased my immunity to infections but not to the extent that I had no immunity.

Both methylprednisolone and prednisone belong to the class of medicines called corticosteroids. They are synthetic versions of the hormone cortisol. One of the functions of cortisol in the body is to "regulate the immune response" in order to decrease inflammation.

Since corticosteroids are more powerful than cortisol ---yes, they do lower our immune response to infections. Our immune system is suppressed more but not completely eliminated. We are more susceptible to having an infection that may last longer. Nevertheless, we are not left without any defense against an infection.

The medication we take is a trade-off to controlling excessive amounts of inflammation. Some people say we have an "over-reactive immune system" that needs to be suppressed.

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@montek

has anyone been told this by their doctor that taking methylprednisolone pretty long term could hurt your immunity to other infections? And if anyone has taken this for any long term like 1 year or more- have they had any troubles with lower immune responses to colds or flu or the like? Please tell me your experiences. Thank you

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Hello~
I have PMR, Osteoarthritis, DDD, and a few other ailments.
I was diagnosed with PMR about 9 years ago, with much reluctance by my first Rheumatologist, because I was in my 40’s.
But, my symptoms fit to a tee, and my inflammatory markers were through the roof.
Over the first 8 years, I was on Methylprednisolone most of the time. I weaned off a few times, and felt okay for a few months, then the pain came back, and my markers went up. So, back on I went.
2 years ago, I started seeing a Rheumatologist at Duke, (my 4th Rheumatologist), and she said, you cannot stay on Medrol. It is breaking down your body.
Both my Rheumatologist, and my PCP explained to me, that I was very compromised, and would not have a good immune system to fight off infections.
So, last year, my Rheumatologist started weaning me on to injectable methotrexate, and off the Medrol.
I felt absolutely terrible weaning off the Medrol that time. I was physically sick. But, I stuck to it. It took about 5 months. Faster than she wanted, but I knew I had to get off of it.
I took the Methotrexate injections for about 6 months. The side effects were not too bad, and I weaned off much easier.
I have been off all Biologics for about 5 months, though not pain free by any means.
Unfortunately, I got Covid, in December, and it brought about a flare up of PMR, and my markers, this month.
So, I will be taking a dose pack of Medrol, to see if we can knock it out fast. Here’s hoping! How I dread it.
Let me also add, that I started having very bad indigestion, and headaches from long term use of Medrol. And, my stomach will never be the same.
I guess I am considered a lifer. It runs heavy in my gene pool.
Get a good Rheumatologist that will listen to you, and treat you, not just the disease. It can be a long journey.
Good luck!
Kathy

REPLY
@johnbishop

@reets70 @martiesowers @kmb181 @ellegeee and others with experience using methylprednisolone may have some thoughts or experience they can share with you.

Here's more detailed information on long term use if that helps.
"Long-term methylprednisolone administration has been associated with the suppression of the hypothalamic-pituitary-adrenal (HPA) axis (a complex interactive signaling and feedback system involving the hypothalamus, the pituitary gland, and the adrenal glands). Suppression of this axis can result in corticosteroid insufficiency - where natural corticosteroid levels are no longer adequate to maintain vital bodily processes - after the withdrawal of treatment. For this reason, moderate-to-long-term methylprednisolone therapy should be withdrawn gradually."
--- Methylprednisolone: 7 things you should know: https://www.drugs.com/tips/methylprednisolone-patient-tips.

I would still discuss long term use with your doctor or a possibly a pharmacist.

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I spoke with my neurologist as mentioned I think in my first question- BUT he said the dose I am taking should have no effect ad that my bodily levels would not even notice such a small dose externally. I am only going to be taking 1 tablet of 4 mg or even better breaking it in half as I did today so it might even be only 2 mg per day. And occasionally I might skip a day here or there. So, the dose I think is really low - am I correct in stating that?

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@dadcue

Methylprednisolone is stronger than prednisone:

Prednisone is four times as potent as cortisol, a steroid hormone that is present in the body. Methylprednisolone is five times as potent as cortisol.

I took prednisone for PMR. It decreased my immunity to infections but not to the extent that I had no immunity.

Both methylprednisolone and prednisone belong to the class of medicines called corticosteroids. They are synthetic versions of the hormone cortisol. One of the functions of cortisol in the body is to "regulate the immune response" in order to decrease inflammation.

Since corticosteroids are more powerful than cortisol ---yes, they do lower our immune response to infections. Our immune system is suppressed more but not completely eliminated. We are more susceptible to having an infection that may last longer. Nevertheless, we are not left without any defense against an infection.

The medication we take is a trade-off to controlling excessive amounts of inflammation. Some people say we have an "over-reactive immune system" that needs to be suppressed.

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I appreciate this reply- it helps calm me down a bit more. Thank you

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@kmb181

Hello~
I have PMR, Osteoarthritis, DDD, and a few other ailments.
I was diagnosed with PMR about 9 years ago, with much reluctance by my first Rheumatologist, because I was in my 40’s.
But, my symptoms fit to a tee, and my inflammatory markers were through the roof.
Over the first 8 years, I was on Methylprednisolone most of the time. I weaned off a few times, and felt okay for a few months, then the pain came back, and my markers went up. So, back on I went.
2 years ago, I started seeing a Rheumatologist at Duke, (my 4th Rheumatologist), and she said, you cannot stay on Medrol. It is breaking down your body.
Both my Rheumatologist, and my PCP explained to me, that I was very compromised, and would not have a good immune system to fight off infections.
So, last year, my Rheumatologist started weaning me on to injectable methotrexate, and off the Medrol.
I felt absolutely terrible weaning off the Medrol that time. I was physically sick. But, I stuck to it. It took about 5 months. Faster than she wanted, but I knew I had to get off of it.
I took the Methotrexate injections for about 6 months. The side effects were not too bad, and I weaned off much easier.
I have been off all Biologics for about 5 months, though not pain free by any means.
Unfortunately, I got Covid, in December, and it brought about a flare up of PMR, and my markers, this month.
So, I will be taking a dose pack of Medrol, to see if we can knock it out fast. Here’s hoping! How I dread it.
Let me also add, that I started having very bad indigestion, and headaches from long term use of Medrol. And, my stomach will never be the same.
I guess I am considered a lifer. It runs heavy in my gene pool.
Get a good Rheumatologist that will listen to you, and treat you, not just the disease. It can be a long journey.
Good luck!
Kathy

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sorry for what u r going thru. MTX is a powerful drug. it is in a class of meds called DMARDs-- Disease modifying anti-rheumatic drugs. I have been on Medrol for some time a while ago as I mentioned along with generic Plaquenil, and I have never had any problems thank goodness. I guess I have an iron stomach. I also feel really energetic when on Medrol since it is a steroid. But as mentioned to the forum I am only on about 2 mg per day -not sure of what dose you have been on. Can you let me know how high of a dose you were on for Medrol for the long term that caused you problems. because that is why I am using I believe the absolute lowest dose.

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@montek

sorry for what u r going thru. MTX is a powerful drug. it is in a class of meds called DMARDs-- Disease modifying anti-rheumatic drugs. I have been on Medrol for some time a while ago as I mentioned along with generic Plaquenil, and I have never had any problems thank goodness. I guess I have an iron stomach. I also feel really energetic when on Medrol since it is a steroid. But as mentioned to the forum I am only on about 2 mg per day -not sure of what dose you have been on. Can you let me know how high of a dose you were on for Medrol for the long term that caused you problems. because that is why I am using I believe the absolute lowest dose.

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I was definitely given all the information on Methotrexate before I started the injections. And, I did my own research as well.
Before this happened, I was a healthy, active, fit person. Never had any health issues.
I was on 4mg. of Medrol a day long term.
It was as low as I could get, and tolerate the pain.
I was never pain free on 4 mg., but it kept my markers down, and greatly helped.
Even on only 4mg., it was very hard to wean off.
I will say I will choose something else, over Medrol, if I have to go back on something full time.
I also forgot to add that my Blood pressure had started going up, which was another reason I had to get off of the Medrol.

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@kmb181

I was definitely given all the information on Methotrexate before I started the injections. And, I did my own research as well.
Before this happened, I was a healthy, active, fit person. Never had any health issues.
I was on 4mg. of Medrol a day long term.
It was as low as I could get, and tolerate the pain.
I was never pain free on 4 mg., but it kept my markers down, and greatly helped.
Even on only 4mg., it was very hard to wean off.
I will say I will choose something else, over Medrol, if I have to go back on something full time.
I also forgot to add that my Blood pressure had started going up, which was another reason I had to get off of the Medrol.

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I am sorry u had no luck with it. I am an active exerciser and have been for 45 years. My BP is like 110 over 70 so that is not a problem for me. I am also 5'5" and still weigh my high school weight of 143 lbs. And my fortunate luck the medrol only 4 mg works wonders for me and that is why I am trying the 2 mg and see if it helps as well. Like I said I have no pain- just tightness that works out after some use. But I do not even want the tightness. So that is why I am taking the medication for the tightness.

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@montek

Hello, I am an active 66 year old. I exercise quite a bit and still work full-time as well. many years ago I was diagnosed with PMR and my neurologist gave me Plaquenil(P) a- 200 mg daily ( a small dose) and Methylprednisolone 4 mg once a day to take long-term. I stopped it about 2 years ago because I felt great. Now I have a sort of recurrence. My hands are very tight when I wake up in the morning and it takes some time to feel normal. So today I started those 2 meds again. I am going to break the 4 mg methylprednisolone in half for only a 2 mg dose. The reason I am going to do this is because I am kind of nervous about the possible side effects long term. I do not want to lower my immunity to anything (especially not in today's world). I rarely have any side effects from the meds I take. So I guess my question is - what do you think of me taking methylprednisolone for any long-term sort of care and its effect on my body to fight off infections like the flu or COVID or the like in the future? I mean the dose is really small but it usually is enough to stop the tightness in my hands. And lastly- I need to take the shingrix vaccine to prevent any possibility of getting shingles especially since I am 66. Can I take them both as well or any advice here?

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I was on Methylprednisolone for six months for PMR and weaned myself off three months ago. Since then, I have had UTI, Covid, hospital stay for low sodium, terrible back pain, etc. try switching to Prednisone, it’s not as strong as MP,but helps the pain.

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as mentioned earlier I have been on methylprednisolone(MP) for quite some time a few years back and never had any problems weaning off. What strength were you on ?? I am only on 2 mg per day and someday I even skip that dose. Was your dose much higher? That would inform me as to why you might have had such effects when you went off. I am on this very low dose if I think it is a low dose. What is your take on this if you would reply?
The only thing I will add - is that I am only on it for 3 days so far and I feel incredibly better. No more tightness or aches and I feel so fluid. Even when I stretch I feel so much better than I did before I started taking this.

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