Author Topic: Prednisone/Medrol Maintenance?  (Read 355 times)

Carolina

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Prednisone/Medrol Maintenance?
« on: September 02, 2019, 07:03:03 AM »
Dear Sjogren's Angels,

Do you take prednisone/methylprednisolone routinely?

I'm at my wit's end on this.  I have Chronic Systemic Inflammatory Disease which causes the kind of pain and misery that accompanies an immune Flare.

https://en.wikipedia.org/wiki/Systemic_inflammation

Almost all of the time I hurt all over, like with a very bad case of the flu. Every movement hurts in my joints and muscles.

If I take 4 mg of Prednisone (Actually Methylprednisolone), the pain is reduced dramatically.

I want to take 4 mg of Methylprednisolone every day and of course I have to convince my Immunologist to prescribe that dosage for me. 

She currently prescribes 2 mg every other day, and occasionally gives me a RX for 14 4 mg tablets to use to interrupt a flare.

I struggle with the pain most of the time, and then 'breakdown' and take one of the 14 tablets, but the pain comes back within a day or two. 

I know the dangers of these steroids.  I started the 2 mg every other day because my body was 'rejecting' my IVIG (I have IVIG every 4 weeks for CVID, an Immune Deficiency). 

What is your experience and advice?

Regards, Elaine



« Last Edit: September 02, 2019, 07:08:56 AM by Carolina »
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Sharon

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Re: Prednisone/Medrol Maintenance?
« Reply #1 on: September 02, 2019, 02:00:34 PM »
I am having the same dilemma Elaine!
My rheumy wants me to take 5 mg Prednisone daily (considered Low Dose Prednisone treatment).
This is in addition to the biological I am on since I still suffer from some troublesome inflammatory symptoms.
I haven't yet begun the LDP because I am afraid to do Prednisone long term, even at 5mg.
On the other hand, I am so miserable with all my symptoms and just want a semblance of my life back.
I feel that living like this is no life really.... :-\
There is also the question if leaving the inflammation to wreak havoc on our bodies is any less dangerous than taking the Prednisone....
So maybe we can deliberate together on this one?
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

irish

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Re: Prednisone/Medrol Maintenance?
« Reply #2 on: September 02, 2019, 03:51:19 PM »
Has anyone investigated CBD oil???? I do't take it but have wondered about it as I see that it is supposed to help with inflammation.

The steroid "jungle" is then pits. I am on 10 mgm every day and just started to taped down again. Am to do 10-9- every other day for a month and then go to 10-8 every other day for a month and so on. My neurologist wants me on 10 mgm prednisone every other day. She has all her myasthenia gravis patients on this dose and it is to help maintain them and give them a cushion ion case they go into respiratory failure---hopefully time to get to the hospital.

I was on the 10  every other day for a few years and did well on it until around the time my hubby got more ill and the mental and physical stress of dealing with his illness increased my weakness and I needed to increase my prednisone. I did get down to 10 7 every other day a couple years ago and then more illness hit me and I had to have an increase. I know it isn't good for me but I have been lucky that I didn't have the hump in the spine and just recently started to lose inches in height.

With the diabetes, I got that in 2009 and blamed the prednisone but my sister is younger than me and she got diabetes before me and she doesn't take prednisone. You know, I think a lot of this stuff is just a crap shoot. I know that my pain goes in streaks and is not so bad right now. Meanwhile I plan to do more research on the CBD oil. It would be nice if it is safe and works but somehow I am thinking this can't be this easy. Time will tell.

I hope that you both can get your meds settled so they help you more. Hugs Irish

Sharon

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Re: Prednisone/Medrol Maintenance?
« Reply #3 on: September 02, 2019, 05:11:19 PM »
Thanks for sharing your experience irish.
I didn't understand about the hump issue- Prednisone can cause that?
Regarding CBD oil, I have done research. It is considered safe and can help with some symptoms of inflammation,
especially pain, anxiety, sleep issues. It does not seem to help with sicca symptoms at all, and for some may make them worse. Personally, I would give it a go, but it is not legal in my country.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

irish

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Re: Prednisone/Medrol Maintenance?
« Reply #4 on: September 02, 2019, 11:55:01 PM »
Actually there are not a lot of meds that help with the dryness issues as far as I can tell. There are some newer biologic drugs that are coming out these past couple years and more to come. Sometimes people on this site have thought that their dryness was better on these meds. These are usually intravenous meds to my knowledge. I really don't follow them that well. I would think one could research the biologic drugs on google or bing, whatever,

Regarding the side effects of prednisone the hump is the one ethat most people seem to be the most aware of plus the weight gain.Some of my weight gain is probably from the prednisone and some of it is from eating too much. People usually complain of weight gain that seems to start when they go on the prednisone and piles on quite rapidly. Mine has been slower. Then the are the cataracts that seem to come with prednisone as does diabetes tendency. There are no drugs that are without troubles. Good luck to you. Irish

katie1111

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Re: Prednisone/Medrol Maintenance?
« Reply #5 on: September 03, 2019, 04:13:57 AM »
I don't think I should be advising anyone about Prednisone because all of us have different symptoms and many of mine are certainly unique. However, I have been on low dose prednisone for almost 2 years.  I started very reluctantly ( I was afraid of it) at 1  mg and gradually increased to 5mg.  It really made me feel better, but not as well as my doctor thought it should, so last year he increased it to 6mg.  I was doing quite well.  Now he has me tapering back to 5mg.  He said that I could be on 5mg for the rest of my life without complications but any more could cause complications.  Right now I am on 5.5 mg and can feel the difference.  However, I have just returned from a long trip and I think some of it might be trip results.  I think I need a few more months to determine if the 5mg is adequate so I will continue to taper back to 5 mg.

Katie1111

irish

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Re: Prednisone/Medrol Maintenance?
« Reply #6 on: September 03, 2019, 08:06:46 AM »
I should add that my neurologist says that 10 mgm a day is a dose that is sort physiological...sort of mimics that bodies release of steroids and the side affects are less. Like katie said, we are all different and react differently to the prednisone. I have been on prednisone for more years than I care to admit but sure can't serum to taper off no matter how I try and what method I use. Every doc of mine has their favorite method of tapering people off steroids. I get down to a certain point and something happens that causes docs to increase it a little. It is a dilemma that is for sure. Irish

Sharon

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Re: Prednisone/Medrol Maintenance?
« Reply #7 on: September 04, 2019, 05:20:30 PM »
irish- I actually am on a newer biological that is thought to help with SS dryness, but it has not helped my eyes at all and I still suffer from fatigue and crazy hypersensitivity reactions. It really does help with pain above all.

katie- What symptoms has 5mg helped you with? Are you taking any other meds for your SS? Any side effects from the Pred?
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

katie1111

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Re: Prednisone/Medrol Maintenance?
« Reply #8 on: September 04, 2019, 08:04:44 PM »
Prednisone has helped mostly with the fatigue and the feeling that I have a case of the flu minus the fever.  Generally I have had more energy.  I am taking lots of medications because I also have PBC, autoimmune gastritis, idiopathic anemia, osteoarthritis (actually more autoimmune artritis,etc - you know the autoimmune collection which varies.  I am on plaquenil, iron, protonix, retitidine, Vitamin b12, losartan, Coq10, restasis, dMannose, Citrical with Vit D.
  I don't list them as my doctor changes them frequently.

Katie1111