Hello,
Yesterday I tapered from 12 mg. to 11 mg. of methylprednilisone (medrol), Today I'll take 12 mg. Tomorrow, I'll take 11. When I was at higher doses, alternating the taper this way, I've done pretty well, going back and forth for a week and then down to the lower dose for a couple weeks before I taper again.
But, I feel horrible today! My joints and muscles are hurting and I can't seem to gather enough energy to even stay out of bed. I'm wondering if it's the PMR, the taper, or if I overdid it at work, or maybe I'm sick. I'm feeling kind of hopeless. Any ideas?
JannieSorry you aren't feeling well and hope that you'll improve soon. Nobody can know, except you, how to react when symptoms flare. It could be for any of the reasons you stated, but I suspect it is the tapering.
I have had PMR for almost 4 years and am down to 2 mg prednisone but it has been a slow taper. Sometimes when the taper was too much, only 1/2 at a time, I would feel fatigue and pain again. I would increase by 1/2 for a few more weeks.
I have tapered several times that way. I also used Ragnar's suggestion about tapering the new dosage every third day, then back to the old dosage for two days. I would do that for several weeks.
It is a slow process but important for you to listen to your body. If your pain is too much, just increase to your old dosage and give it time.
Some days it just takes time to get moving so you might want to try hot showers too. PMR has a mind of its own and sometimes it just does its own thing. Good luck and hope you feel better soon. Keep the stress level as low as possible too. Let us know how you are doing. It's been awhile since i've written. I've started seeing a new rheumatologist , who I really like. She's keeping me at 12 mg of methylprednilisone but has added in methotrexate. I take 4 pills once a week. She said that once the methotrexate kicks in, she'll start me a a very slow taper of the prednisone. I've been on the methotrexate for almost 3 weeks, and am feeling awful. I'm nauseated and have zero energy and have an almost constant headache. From what I've seen on the internet, it looks like methotrexate could be responsible for my symptoms. Also, she told me that I could have one glass of wine no more than 3 times a week while I"m on the methotrexate, but everything I've read indicates that ANY alcohol is bad news.
Will these side effects go away? Is it ok to have wine now and then? I'm so tired of feeling bad. I'm only 10 months into this disease. Sometimes it seems like the drugs just make things worse. The methylprednisone helps the pain a ton, but now I have lots of bruises and a fat face.
Sorry for being such a baby...sometimes I just need to complain. When I'm working with the kids at school, I'm pretty good at keeping this stuff under wraps. And I feel sorry for my husband, altho he's been great. Guess I'll call my rhemy on Monday.
Thanks, Jannie Hi Jannie, I hope you do call your rheumy.
Maybe the dosage is too high/ low. What is 4 tabs in mgs? Some are on MTX injections because they cannot tolerate the pills.
I have been on 15mg MTX for about 7 months and have some nausea and fatigue for a couple of days. I take mtx on Thursday pm and do not plan anything for Friday and if I can Saturday.
Are you also taking Folic Acid? I was told to take this 5 days a week starting on Friday pm. Some people post they take them everyday and even take 2 tabs. I also have Maxalon for the nausea.
My cousin who is a medical Dr has RA and takes MTX. He has a glass of wine about 2 or 3 times a week. He told me if your Dr is monitoring your liver blood tests and they are okay... then its okay!
My tests have been borderline so none for me!
and you are not a baby ( well maybe with the fat face xx) You Have A Autoimune DISEASE :
be kind to yourself,
Hugs Lyn
Hi there!
Just catching up with the forum and note these methotrexate side effects were like mine last year - when I had a blood test, my GP diagnosed some liver damage - reversible, thank goodness, but it meant stopping the methotrexate and going on a no-alcohol diet for about 8 weeks. This was from 15mg orally once a week.
The paperwork on Methotrexate from the rheumy said no alcohol, but a friend of mine with RA has methotrexate injections and often drinks a glass of wine or two (not alcoholic, but not exactly abstemious either!).
In the meantime I too have a package of methotrexate 10mg injections, waiting unopened in my bedroom while I still chug down 10mg pred per day - but I'm in the middle of a master's dissertation (distance learning plus full time job- but I'm on holiday at the moment). I really can't afford to feel under the weather at the moment, so I'm not experimenting with the new stuff yet.
My suggestion is to have your blood values checked - the tiredness is a symptom of liver problems. If you can still drink alcohol, I read - maybe on this forum somewhere - to save it to the days furthest from your weekly pred dose, i.e. not the day immediately before not the two to three days immediately after.
Hope this helps,
Best regards,
C.
Thank you both for your responses. I came down with a bad sinus infections after I wrote, so I haven't gotten back here. Just a reminder that things CAN get worse.
I'll be seeing my rheumy next week and will ask about the blood tests. It's weird, but now if I have a glass of wine (not during the 4 days surrounding taking the methotrexate), I get a horrible headache. I'm wondering if my liver is just not able to handle even one glass. This is no fun! I used to love to have a glass of wine in the evenings. Maybe I should try the injections?
Do you think the side effects from methyltrexate are less dangerous than the side effects from methylprednisone?I'm taking 10 mg of methotrexate a week and still tapering from 12 to 11 mg. of methylprednisone.
Take care,
Jannie
Dear Jannie,
It isnt really what I think but what I read in the package inserts: methotrexate is poison and was first developed as chemotherapy for cancer patients. I have some waiting around for a time when I work up the courage and enthusiasm to start it. If you believe the package inserts you wouldnt touch it with a barge pole.
I have been on too much prednisolone for too long and my doc wants me to be able to reduce the dose, but I personally cannot see the benefit of swapping the poison that agrees with me for a different kind of poison which doesnt. But a friend of mine has taken mtx for a long time and has no real problems. I think the question is to try it out. The injections are said to have fewer side effects than the tablets (better for the stomach).
Plan your trial for a time when you have nothing big on and less stress, and perhaps take it on a day when you can zonk out if necessary but get medical help if needed (i.e. perhaps Friday to Saturday).
Good luck with whatever you decide to do.
Best,
C.
PS - sorry, no apostrophes for some reason!
Dear C.,
I think that I may just go off of the methotrexate. This past week has been even worse. I take it on Tuesday, and the nausea is getting worse instead of better. Today is Sunday and I still feel really barfy. I have absolutely no appetite and when I do eat the nausea is actually worse. I took dramamine and all it did was make me feel dopy.
I'll talk to my rheumy tomorrow. Everything I've read about this stuff is pretty scary. I just want to quit taking it and stay on the prednisone. I'm down to 11 mg of methylprednilisone. At least on it I can function!
Thanks for writing to me...This is a lonely disease.
Jannie
Hi, I am newly diagnosed with PMR--weaning off an initial dosage of 50 mg per day.
My thought is only that w/about a month on pred I have not ever had the debilitating side effects you describe from the drug--it seems that it can be difficult to tell side effects from recurring symptoms of the PMR itself interacting with varying dosage levels. But on pred I didn't get as a side effect full-blown symptoms of the PMR--it reversed them--appetite up, energy up, functioning ability up. Problem is I have to wean off of it and some fatigue is coming back.
Very best of luck. I can only say that prednisone was a blessing for me and took me from a very dark and unexplainable and scary time to a place where--I guess with ups and downs--i can function again.
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