I'm so happy!!! I'm down to 2 1/2 Mg's. of Prednisone a say....BUT the bad news is ... MTX raised from 15 Mg's to 20 Mg's now. That scares me. I'm so afraid of the MTX. Gosh, I dislike RA. Between the tiredness, fogginess, and the hurting, forgetting, some sleepless nights, swelling joints, swelling knees, I don't know which is worse.
OK, my pity party is over for the night.
Trisha Hi Trishasea I understand how you feel - the drugs we need to take are scary! Hopefully though, your dosage increase might make all the difference to you. I'm pretty certain my mtx will be increased next week - I'm currently on 10 days of high-dose prednisone to try and get things under control. (I felt like a bush-fire burning out of control...) Best wishes to you, Linda, how much MTX are you taking? Trisha I must be considered off the charts with the prednisone... I am taking 40 mg of the stuff an 20 mg of the MTX. And once a week injections of Humira. I have been on this regimen for about 8 months, my hair is thinning very rapidly (wake up with clumps of hair on the pillow), the fatigue is constant, and the pain fluctuates daily. Some days really good (about once or twice a week), but others - not so great. "one foot in front of the other" kinda days. Humira usually is pretty good for the first few days, then wears off. Only thing I am sure of is the prednisone is causing me to eat eat eat. And I hate it! Ok... now that I have had my pitty party... please continue...
Trisha, great news on getting that low on your prednisone. I wouldn't worry so much about the MTX being higher. It's less damaging than the prednisone and they can monitor it easier. Dana, that dosage is extreme for anything over a week or two. Even 20 mg is too high. Your doctor should have you on some additional medicines to try and get you down on that prednisone. It doesn't sound like it is being managed properly. For one thing, you should be getting some relief from the Humira by now, they should have started tapering the prednisone and they should be giving you something for the hair loss. This doesn't seem like a standard approach and it certainly doesn't seem like it's helping you. Go back into your doctor and ask to try a different biologic, get something to help with the hair loss and a plan to reduce the prednisone. Your doctor can add things like Plaquenil (or something else) to your regimen to enable you to feel better and get off so much prednisone. Well I go back to the Rhuemy today. Had blood work drawn on Friday. I don't think its going to be very good - especially with how bad I have been feeling lately. Been having the sores in my mouth, hair falling out, and lots of other unmentionables..
So I decided to make a list (because I can't seem to remember my own name lately) to share with my doc whats happening with me. I sure hope he's in a listening mood!! Wish me luck... Trisha, In the past 5 years now .. 2.5 mg of pred. is as low as I can go without causing a flare by stopping. My MTX is at 20mg (although I now do the injections). Good luck in lowering it even more if you can !!!! It's quite a feat to be able to lower or get off it entirely. Good for you !!!! Went to doctor yesterday and he said I can cut back on the prednisone to 20 mg.. YIPPY! What I do not understand is why he said to me "I think we are finally getting it under control" ... when all of my levels are elevated - more so than last CBC panel, including my liver enzymes and ESR/RF is highest its been in a while. ??? He also wants me to do a UA lab test. I assume because of the prednisone? Has this ever happened to anyone?
Good for you on the lower prednisone... wish I could lower mine too.
I've been on 20 mg mtx for past 4 months, before I was on 15 mg.. (injectable by me)
and I wasn't good at being consistent...therefore he gave me pills
again... so, I've been on MTX for about a year or so. I am also
doing Remicade Infusions. The RA is 'under control' ... but still
have swelling in fingers and other parts of my body and the energy
level is still not where it should be... But, I don't think the
MTX bothered me.
Good luck~ Vicki
Consider getting another RD.
Trisha-good job getting down on the pred. I know
the mtx is scary but I have been taking 20 mg. for
about 1 1/2 yrs with few side effects...and it really
helps.
Dana-be careful of the pred. That is really a very high
dosage to be on for more than a week or so. Hope
you can talk to your dr next visit to get a reduction
schedule.
Take care
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