SO SORE

BadDay I am so very sorry you are in such pain.... I can identify for sure. Maybe the neurologist can help sooner since you cannot get in to see your rheumy till July.... I will be going next week for my second infusion of rituxan I have never been so ready for meds as I am this one. After my first infusion week before last I felt pretty good the next day but have had several bad days since. Felt really good yesterday and fatigue was minor...today not so much.. my energy drops out quick and its to the bed I go.... this is the worst time I have ever had. We just keep on keeping on my friend. I am so thankful for this forum... folks sure have helped my feelings and I hope I have someone else in return. I'll keep you in my prayers and you hang in there. Hopefully tomorrow will be a better day for you....
Hugs
Peggy

Thanks so much
I have increased the MTX dose to see how that helps
we have just had a big change in weather come in so maybe that had something to do with it
I've had swelling in lower legs this time as well with (pitting oedema) - when you push finger on the leg it squishes and a dent stays there for a while, I haven't had this before.
one good thing I got approved for a Government funded Oxygen Machine so I don't have to keep paying rental on the one I have that will help heaps financially

Thanks Chartreux Sorry your in pain right now, is there a reason you have to go off the MTX ?
I thought going off it for a while for the Lumber puncture would be good - you know give my body a break etc. Ha wont do that again

Thanks All and Huge Good Thoughts to those in same boat
I went to Dr Yesterday and he put me on a zap of Prednisone increase from 10mg to 50 for a few days then 25 then back to 10 and we increased the MTX as well so hope that helps today is first day and can't say ive noticed any difference .
Tomorrow I go back to Neurologist for Lumbar Puncture results

I get you Char, my rheumy is like "you're already on the most I can give you and your joints are still deteriorating but there is nothing else I can do." But at least she says it with compassion, but to be not able to tolerate meds would be hard.
Hope the lumbar puncture results give you some answers Bad.
Best wishes, golitho

Have you tried anything in the sulfa antibotic group? My doctor had me give this a try only thing is it dried me up so bad. I was drink gallons of water to try to keep from being so dry, so that was another RA med I failed. You might have better luck on it.
There is also, another antibotic therapy with medications in the Erythromycin group ( I'm allergic to this group, so another fail). might give you help.
Both these are older RA treatments coming back into play in the recent years and you can google them.
I can't take nsaids two reasons, bleeding ulcer non h.plyorie type, I'm taking tylenol type medication and if I mix nsaid with tylenol I throw up and throw up, ect...
I tried plaquenil, reaction, tried Others in this group all reactions.
Sulfa antibotic can't get enough water on, erythromycin allergic to, Hospital type reaction(very bad)
Doc won't give anything in the lines of embrel or humira a try because I get pneumonia easy (Have had pneumonia 4 times in my life, last time was 2010 broke 2 ribs with)
So MTX was our only try and I was get nausea with that at a normal start dose for most folks .5, I started at .2 slowly ..
Keep hope they have a medication out there for you and you will get lucky with it..I'll keep positive for you. Don't you give up and don't be afraid of trying a medication! Just keep us posted so we can be there for you for any support you might need...I got a shoulder any time you need a cry, I'll listen to your vent as well (might kick you if you don't give another medication a try, just kidding) keep hope...
Keep Hope...

just a Quick up Date re the Prednisone Burst ive had the 50mg for 4 days now and the first 2 I didn't notice much difference but yesterday & today much better , But Hay am I Wired I Can't Sleep Last night I lay awake literally All night with my Brain Going and Stupid things ( what id do if I won Lotto,- came up with some good ideas
and rehashing TV commercial's in my head with the jingle song ) Ahhhh I got up and felt like id been out on the town all night , then today I took the 25 mg so hopefully it wont be quite so racy
Anyone Else had that with high prednisone??
Today was the first day in Ages I didn't take any Endone so that's good felt heaps better only really shoulder and hip pain most of the day.

I know what you can do with the lotto winnings, go and buy a hot tub and invite your dear friend Chart over, hehehe...the merry time we could have....eh....

made you think...am I evil or what.... lol

Hope your doing good today. So very sorry you have a long wait to see your doctor, my next appointment is in September and my hips are hurting, it's right on the hip bones, I can feel my hip bones...it's like for me there is my hip bone with a layer of skin over them...and my pain management doctor dis missed it, so I think that went bad...life is anything but interesting, ain't it...

When you go for your follow up ask that should you go into a flair, you'd like just a few extra pills to cover you for really bad days...Doctors do need to be a bit understanding, I have extras of my norco but not of the muscle relaxers, so I get leery of running out early on the muscle relaxers!

So very sorry your going through all this, try calling your doctor to see if you could get some extra pain meds called out. They should understand.
Maybe try getting on the cancellations lists...