Prednisone, Plaquenil and Methyttrexate | Arthritis Information

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I am down to 7.5 mg of pred and the dr wants me to sub in either plaquenil or methyltrexate. The reason is I am having trouble decreasing the pred. Those of you who have been on these drugs, what is your experience? Thanks in advancepgr555,

Sounds like you and i are in the same stalled place, i am on 10 mg of pred and every time i try to lower i get hit like a brick, even on 10 i do not feel well at all, but any lower i can not walk or hold up my body, on 10 i am in bed half the day.

dr suggested the plaquinel  and methotrexate i have not taken either, yet
a friend takes methotrexate for rheumatoid arthritis, has been taking it for years and no side effects, she says it helps her, another friend takes plaquinel for Lupus, she said it helps her, and no side effects

my dr also suggested Imuran, which is for autoimmune diseases, my grandson takes it for chrons disease, which he had a very bad bout of at the age of 21, he was also on pred for a while which he said made him feel terrible, he  rather take the Imuran.

i know i have to do something, as things are not getting any better, i also fractured a vertebrea in my spine, my bones are turning to dust, that brings us to the actonel, boniva decision, more bad side effects, really there are too many things wrong, i do not know what to tackle first.

pretty soon i am going to  have to be dragged in the back of the ship  as fish bait.
while you and Bob and the rest of the crew sit on the poop deck and smoke your stogies and  drink your  favorite  rum......................oh my

love.........................Georgiana
Georgiana, I am so sorry you are still not doing well. So why are you not taking the palenil or methytrexate? Georgiana,

    My rheumy gave me plaquinel because he thought the stiffness in my hands was RA.  I took it two months and no effect, so I quit it.
     No need to drag behind the boat.  Take a breather from rowing and assist Ragnar, our navigator while you get squared away.  There's plenty of rum and cheap cigars for the staff!

Georgianna,

I am trying to get down to the lower doses.  I was down to 6 from 24, but had to bump up to 7 mg because I could not move.  Still stiff on the takeoffs and landings.  I was dropping at a rate of 2mg every two weeks as per the rheumy.  I told him I cannot continue at that rate and keep my sanity.

I will now drop at 1 mg per month and see how that goes.  I have every side effect except for diabetes. (knocking on wood, now) I am in the process of moving, and as soon as the dust settles I will start the decline.

Frustrating as it  gets, we still have to find a way to get through this.  I yearn for the days when all this did not exist. 

Donna, NY

Hi Everyone
I have been out sick again but have been keeping an eye on the board.  There have been so many interesting things posted that I have wanted to respond to but was too sick to.
I too have been trying to lower the pred dose but am stuck right now on 10 mgs. and have been ordered to stay here until next Fri. till I next see the Dr.  In the meantime I ended up in emerg. on Sat. with a urinary tract infection., on Mon I went for a follow up with my own Dr. and found out the antibiotic was not the correct one so she gave me another to which I had a reaction so back I went for the third time and there is nothing else she can give me as I have had reactions to everything else.  So I sit and wait to see if all goes well until next Mon. when I have another culture done.  Until then I just have to cross my fingers (or my legs) that all goes well.  The strange thing is this morning I am feeling so good that I am wondering if the combination of the infection and then the reaction has been contributing to all the PMR pain I have been having.  I even asked the Dr. yesterday how are you suppose to tell the difference between the PMR pain and any other pain.  I usually chalk everthing up to the PMR which could be trouble.
 
pgr.....I will be interested to see how you make out if you do decide to substitue the pred with plaquenil or methyltrexate.  Like Georgiana I have only heard of these two in connection with RA and other diseases so it will be interesting to know if they can be used with PMR.  I have been down to 7.5 mgs three times so far and have had to go back up.  Will try one more time and then talk to the Dr. about other alternatives.
Bob.....Good to see you back.  When I used to just lurk I would get such a kick out of all the banter going on in the boat.  It was a real pick-me-up.  When the boat disappeared I was so disappointed so again welcome back.
 
Donna....Have you tried Ragnar's method of reducing the pred?  I have found it most helpful until this last roadblock.  Like you I have had every side effect imaginable except the camels hump but I tell everyone I had it but it dropped and now I am sitting on it.  I hope you do not overdo things while moving as I am sure stress does makes things worse.
 
Another strange thing...on Mon during my follow up my Dr. had gone back in my file to 1995 when I was given cyprofloxacyllin for an infection and I had a very bad reaction with arthritis like syptoms.  After 5 days I could barely move.  She was wondering if that was the start of the PMR.  If so that would mean I have had this @@##@#@# DISEASE for 13 years.  It would be interesting to find out. 
 
Take good care everyone.
 
 
 
Hi Pat,
Hope they find a antibiotic that does not cause another reaction.  I have Ragnar's method written down and posted on my refrigerator.  It was actually the way I got down from 24 mg.  I never really had a chance to adjust because it was time to drop again every two weeks.  It did make it easier, but I have to say it was like hitting the ground with a partially opened parachute.  The rest will be done at a much slower rate.  I'm usually very stoic about things, but dealing with this has reduced me to tears on more than one occassion.
 
I've had this 14 months and from the looks of some of the posts, I will not set my watch for this to end at the two year mark.  So, unless any of the side effects get worse why would I want to torture myself with a crappy quality of life.  Just to move without looking and sounding like the Tin Man would be great.  The constant pain wears on the spirit.
 
I have boxes up to my butt.  This is our retirement home and we have owned it for many years.  It's just going through the things we cannot part with and finding a place for it at the other home.  The animals love it in the country.  From what they can see from the windows.
 
 
 
 
Donna,
A mg at a time is too much of a drop at this low dose - Try 1/2 mg using Rag's method ( I do this 2 and it helps) Don't worry about dropping more than once a month. Right now I have been at 7.5 for a month, finally feel better. Now I took 7 mg sunday, 7.5 M & T, 7 W and 7.5 today and tomorrow and then will go every other day for a week. If I feel well enough, I will go for 2 weeks at 7 after that. It takes longer, but I feel better.


Pat, I think it was you who said you were sick - my rheumy told me last week that when I get sick i should bump up for several days and go back down when better.

Hi pgr

Yes it was me with a bladder infection that probably caused the initial problem with the PMR with increased pain and unable to taper.  The reaction to the antibiotic also made things doubly worse.  Now that the infection is at bay and the antibiotic is out of the system I feel like a million bucks again....ready for the golf course.  Even tho the Dr. increased the pred it was not helping with the pain and she was reluctant to increase it any more.  I probably wouldn't have anyway.  After I see her next Fri. I will start the taper again using Ragnar's system and providing all goes well next week.

Have a great weekend everyone.
 
ps...After looking at my first post here I was thinking if we put sails on the boat nobody would have to row....I have enough hot air to fill the sails for some time.Pat,  You have a good point.  The only problem with sails is that you need a steady wind in roughly the right direction, and although you're willing to help generate a breeze, I'll have to discuss with whipcracker PGR whether she's up to convincing enough others to contribute.  It's vital that everyone on breeze detail talk in the same direction.
     Since PGR got back on board, most of her time has been spent in a lounge chair on the poop deck and she's a bit out of practice with the whip.  I don't want to work her too hard until she's in better shape.
      I'm considering replacing the night shift on the oars with a big diesel engine, but the price of diesel fuel has gone thru the roof.  Rest assured, Pat and others, that we on the staff are cognisant of the difficulties you all face, and will grant respite from rowing upon request, as long as the rum and cheap cigars hold out.
     Good to hear you're feeling better!
CRAAAAAAACK!!!

OK NOW, I am on the job - no more lounging around - Please let us know who has hot air available so we can begin the scheduling...
Thank you in advance,
pgrPGR,
I'll try blowing some hot air for awhile.  Not able to row.  I'll bring some extra seltzer water so we don't dehydrate.  Extra hot packs for those with the aches. I think we can fit the provisions on the deck.
 
 
Thank you , Donna - I will schedule you for the 1st hot air shift - C;mon y'all! we need more volunteers! I know there is a lot of hot air out there...Hi PGR555

I just got home from the doc, and he says that when you are on prednisone for along time (months) even at low levels, you end up turning off the normal part of your body that produces prednisone naturally. The normal level when all is right is around 7.5 mg/day. That means that when you try to get below the 7.5 level and your normal mechanism is turned off, you are lacking what your body normally needs to operate. This also means if I understood him correctly, if you have been on prednisone for sometime and you have an accident or need some emergency surgery, then your doctors need to up your prednisnoe quickly. Because your body would normaly up its production of prednisone to help with your imflamation. This senario would hold true until you have been off all prednisone for a few years.

Hey just some food for thought.

Hope all are cured by tomorrow.

Craig
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